Multiple Sclerosis - I STOPPED taking Copaxone!
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- เผยแพร่เมื่อ 22 มิ.ย. 2016
- Multiple Sclerosis (MS) - I STOPPED taking Copaxone!
(VIDEO 7)
I realise this could be quite controversial, but I've decided to share my experience with the Disease Modifying Drugs I've been on and why I decided to stop taking them. As always I would be interested in anybody's opinion, and I'm here to answer any question that come my way.
Early Symptoms started 2007:
1. Numbness.
2. Burning.
3. Tingling, humming, buzzing.
4. Skin sensitivity or Altered Sensation.
5. Squeezing sensation especially in the Legs.
All of the above across my Feet, Legs, Hands, Tummy and Back.
New Symptoms starting Feb 2012 (Major attack)
1. Weakness.
2. Spasticity.
3. Abnormal Gait (walking as if drunk).
4. Extreme lower back weakness.
5. Severe Chest Pain.
6. Anxiety.
7. Tremors.
If you've enjoyed this video and you feel that if may help another person in some way, please consider SHARING it on your social media - Thank you.
Don't forget to check out the other videos in my MS Vlog Playlist.
• (MS) My Life with Mult...
I applaud your decision ad thank you for sharing!!!
Thank you Melissa, I really appreciate your kind words. I've recently taken the steps to come off another medication called Pregabalin, this is a drug I've been on for Nerve pain for almost five years. I feel I'm still battling with the withdrawal. I've made some additional videos about this on my MS Vlog playlist, #17 parts 1, 2 and 3 that you may be interested in. If you have the time, perhaps you'd like to check out my playlist where I cover lots of MS real life related topics. I've popped the link below for you should you decided to.
th-cam.com/play/PLKh4CtwH9cEUJcntnXWXyo-OtqnMccwWU.html
Kind regards - Neil.
Hey Neil: Your video was awesome!! It was a very informative video. At the beginning when I was first diagnosed with MS and went on the blind case study, it was a toss up of taking the Gilenya or having to do the Copaxone injections. It was a computer generated selection and after seeing your video, I thank God Gilenya was the generated selection for me. I don't know how you endured that much pain for two years the way you did. I'm pretty sure that I wouldn't have made it through a complete year of the case study on Copaxone. Thank you for your detail description of your time on Copaxone. If Gilenya ever stops working for me, Coxpaxone would definitely not be a drug of choice for me. That much pain at the injection sites aren't worth diminishing my quality of life. Thanks again and take care.
Thanks Janet, appreciate the comments.. take care.
I think it's very worthwhile to see if a drug is helping by stopping it safely with doctor support. You know you can always go back on it or try one of it's counterparts. Very good video series!
Thanks Vicki, after being off Copaxone now since the beginning of 2016 I don't feel any different. I'm one of the fortunate one's whereby I'm not having relapses very often, but I do get the flareup which can be disconcerting and worrying. It was difficult coping with the constant injections whereby the drug pooled under my skin and caused injection site reactions. Sometimes you reach a point in your life when you think, enough is enough and I can't be doing with it anymore especially considering the low rate the drug helps reduces relapses, which is "UP TO" 1/3 or 33%. I just felt the pain I had to go through in order to have "UP TO" 33% wasn't worth it and I decided to take my chance.
However, that said.. my annual hospital appointment with my Neurologist is imminent and I'm wondering if I'm going to be in for a bit of a telling off. I'm pretty sure they're going to be encouraging me to go on another DMD drug, I don't fancy any of them to be honest.
Best Regards - Neil.
Woooow.... If my neurologist had explained all of these details to me I don't think my decision to even start Copaxone would be the same. Thanks sooooo much for this video
Heyy! So please you enjoyed the video. It’s important to note that everybody reacts differently to Copaxone, unfortunately it wasn’t for me. Good luck.
This video gave a very well balanced and responsible view about DMD's. I'm gaining a lot of knowledge from you here Neil, on how one should voice an unbiased, yet compelling argument, with all points covered.
Thanks Dean, simply put I just say it as it is, keeping it real.
Was allergic to this and rebif
Been on it 2 years.. I've been dealing with this for a while 30 Years but never went on a dmd until copaxone 2 Years ago... No relapses for 2 years but I would have one every 2 to 4 years without dmd's.. so I'm hoping it doesn't happen again for much longer than 2 years :) thank you for your post
Hi There, 30 years is a very long time.. I'm 9 years in so far and it doesn't get any better really does it. Great to hear that the Copaxone seems to be slowing the relapses down for you, hopefully you're not suffering any side effects. Take care.
Hi Kevin, very interesting videos, thank you so much. My MS story is similar to yours. I was planning to take Copaxone but did not start because of fear of needles... also I havent got serious problems right now with the illness. I will wait and see, so far (15 years since diagnosis) I was really lucky. MS changed my approach to live more than it changed my body. Hope you are doing well, sorry for bad English, German native... regards/Martin
Hey Martin, thank you so much for the comment.. I'm doing ok thanks for asking. I'll be completely honest with you, with Copaxone the drug is dispensed through an injector device which is spring loaded. It goes with a bit of a PING, but you don't actually feel the needle (or see it). For me, the pain starts at the injection site when the medication pools under my skin before its absorbed. This causes swelling and injection site reactions, although it will effect different people in different ways. Oh by the way, it's Neil not Kevin lol 😉.. As for your English I though it was perfect. Good to hear your MS seems to be under control. Best regards.
Hi NEIL, sorry for the wrong name. Well, I have the injector device already in my drawer but I never started with the medication. The doctors did not really push me because I have few symptoms only. Now through your video I heard for the first time that the injections can be quiete painful. Maybe my extra kilos (compared to you) would be helpful to find better places for the injections but anyway. :-)
Your videos are really informative and I keep my fingers crossed that we both stay well. By the way, the video by Sam Harris is really great. I knew this before but now I put it as an audio on my mobile so that I can hear it whereever I am. See you
+Martin - Hey Martin, ahh no worries about the wrong name lol 😀 After two years of experimenting with different areas to inject, I did discovered the more 'fleshy' areas are best. You certainly know when you've injected by accident into muscle, wohhh that hurts big time.
I watched the Sam Harris video for the time a few years and seem to have an affinity with his words, they are so amazing and I can completely relate. So pleased you like it. 😊
Nice chatting with you Martin, I wish you continued good health.
Our stories are very similar as to the beginning of the journey to MS diagnosis. My story started in 2014 with an xray to determine if I had a herniated disk in my lumbar.....was dx with scoliosis, disk degeneration disease, multiple herniated disks from my cervical to my lumbar, stenosis, radiculopathy, osteoarthritis, lumbar fusion 10 mos. ago, now rheumatoid arthritis 2 mos. ago, major migraines that called for an MRI of my brain, now a 2nd MRI with and w/o contrast and here we go with something NEW - 2 doctors already said MS and I am scheduled to see a neurologist in 2 weeks for the "official diagnosis". The lesions are all over my brain including along the cervical spinal cord area, you can't mistake them on the MRI films. So much of my strange symptoms experienced over the years are making a whole lot of sense! So many emotions going on right now from disbelief to anger and in between. Your videos are very helpful, thank you Neil and keep posting your journey.
Hello Nell, and thank you for your comment explaining your journey so. Wow! Haven't you been through, and are still going through the mill! Rather surprisingly once I'd got my diagnosis I actually felt better because I'd got a name for all the strange things that's been going on.. Hopefully you will start to feel better too. I'd be very interested to hear how you get on in a couple of weeks for your official diagnosis. All the best.
Thank you for sharing.
Hey Matiqueo,
My apologies, your comment went into my review folder (for reasons unknown) and I've only just spotted it. You're very welcome, and I'm glad you enjoyed the video.
Regards - Neil.
I have multiple sclerosis since 2003. I just got diagnosed with inappropriate sinus tachycardia multiple sclerosis related said cardiologist unbelievable
Hi Michael, yes I recall a previous comment from you about a week ago whereby you explained about one Dr disputing what the other Dr had diagnosed you with. I did respond to you, but I'm not sure if you've read it or not.
To have MS for such a long time is very challenging. I myself have had symptoms since 2007 (MS diagnosis wasn't until 2013), but since then I've been through several different diagnosis's. I'm not sure how up-to-date you are with my videos, but my MS diagnosis is no longer secure and I'm currently in the process of being re-diagnosed once again. They now think I've got something called Neuro Myelitis Optica (NMO), kind of like a more severe form of MS but still in the Auto-Immune disease category, just much rarer.
I hope you're keep as well as can be. All the best.
Thanks Neil..great video. I have been dithering about whilst deciding whether I want to begin DMT and Copaxone. I find it all terrifying to be honest. I was misdiagnosed, apparently, told I had ME in 2001 - which was apparently actually MS - so have dealt with strange, awful symptoms for years thinking they belonged to ME. I dealt with it alone alone for years.p because I,love very, berynruraully and there is no support here from GP or anyone. I Had a stroke in 2014 which the neurologist now informs me was not a Stoke but MS symptoms...anyway, it was so helpful to read about your horrendous experience with Copaxone because it balanced with all the gushing "positivity" from my MS nurse and neurologist about beginning this therapy. I too have researched this drug and other DMT and totally agree with your views about the 30% less relapses....and balancing the side effects of such a routine with how I am now. So, thank you for sharing your experience. I think I'm putting it on the back burner (DMT) and will monitor my own health as time progresses. I wish you well and send you thanks. Pat D
Hi Patricia,
Blimey, that's just crazy that you were mis diagnosed! I don't know much about ME but I know that it can make you extremely tired and fatigued, as can MS. But I'm pretty sure ME doesn't have the pain and disability that comes with MS, although I do stand to be corrected if it does. At last you have the correct diagnosis though and you're about to embark on the DMT treatment.
I'm Pleased my video was helpful in some way to you, I did have a terrible time on the drug but will hasten to add the ONLY side effects was the injection site reactions. No other side effects and I think this is quite significant. Everybody is different, and it's completely possible that you may only suffer slight injection issues, if you were to give it a shot (no pun intended lol).
You have to do what you feel is right for you though.. I suspected I wasn't relapsing, the hospital would automatically just say.. oh that is because of the Copaxone.. but I didn't think it was. So the only way to tell was to stop the drug, this is what I did.. I did last injection on 31.12.2015. Turned out I was right😊 However, since then my symptoms have been getting progressively worse without relapses and my Neuro now believes I'm Transitioning to Secondary progressive.
Such is life.
Take care - Neil.
Hi Neil. Thank you for replying. Your video was very helpful and I still dither about!!! Don't think I quite ready yet to begin DMT yet though. I feel deeply for you and am so sorry you have had, and continue to have, such a hard journey with MS. I was one person who was very glad to read some truthful opinions about Copaxone ...it has helped me towards considering my decision at this stage. All,the very best wishes to you Neil.
Pat D xx
Hi Pat, thanks for your message and it's nice to hear from you once again. So pleased my video helped you towards a decision. Best wishes to you too, and take care. xx
Holy hell, that sounds crap, no I won't go there. I don't get the difference between relapse and flare-up.... I was going to ask about a healthy diet, ... hey you have just talked about the flareup relapse thing :) oh yeah, new symptoms coming out of blue.... I have honestly thought I was I was going nuts, or was a hypochondriac or attention seeking for about a month twice a year... for so many years. Thank you so much for your time making these video's. :) :) :(
Hey no problem Karen, glad you've enjoyed watching them.. I tend to do one every few weeks or so when I've got something to talk about. Glad I was able to clear up the issue between relapse and flare-up. WIth some people, the MS effects them so badly they can be having relapses every few weeks. I can appreciate for these people how important it is to be on a Disease Modifying Drug, to help slow down the relapses. Regards - Neil.
I started Copaxone 40mg in February 2016. The injection site reactions were not very bad at first and I was like why is everyone complaining about this?!? But now it is hit and miss. Sometimes it is fine and other days the injections hurt so bad they feel like they set my soul on fire. To me the whole bit about the injection site reactions getting better was NOT true for me. I absolutely dread when I have to inject in my stomach where I do not have much fat...it HURTS SO BAD! One time I hit a muscle as well in my hip and my hip ached the entire night, I could not sleep. Additionally, I am getting those huge lumps as well the day after injecting on my thighs, then they itch like crazy for about 36-48 hours. I am going to try to stick it out as long as I can... Thanks so much for your video to see others having similar experiences.
Hi there - "set my soul on fire" I like that! Perfect way of describing the pain, not all of the time like you say, it wasn't all bad but for me slowly but surely it got worse and worse.
Not much fat on me either (6ft 2" 11 stone) I remember having a conversation with the Copaxone people saying that being slightly on the larger side is beneficial when it comes to injecting. I can understand this I suppose. My stomach and hip were the two best places for me (although not that good) with the least amount of pain. If I got it wrong on my Thigh oh BOY!! the pain.
Yep, I know all too well how it feels when you hit a muscle.. I did this the very first time when I was with my MS Nurse and she was showing me how to inject. My arm was KILLING ME!! I couldn't hardly lift it. It's a good job my car is automatic transmission otherwise I wouldn't have been able to drive home (had to drive one handed that day)
The Itching, oh the itching.. always when you've injected and a lump has formed, but usually about 24 hours later and yes as you say itches like mad for a couple of days.
Whilst all these side effect are horrendous and very difficult to cope with, its important to remember that the Copaxone is doing a good service by helping to reduce relapses in RRMS. I'm so pleased my video has helped you in some way, I love to share my experience in order to help other people such as yourself.
Good luck with the injections, and I hope given a bit more time your body settles down and tolerates them much better.
Take care - Neil.
I've had RRMS for 13 years now.. tried Rebif & Capaxone in the beginning. Hated them both. I have been DMD free for 11 years. I've treated my MS with Sunshine, Vit D, Low Stress and healthy-ish living. I am only now having my first real flare up in years, and it's not physical, but changes in cognitive and anxiety.
+Laura Jeffries Hi Laura, that’s very interesting to know how you’ve coped without the DMD’s for all those years. I felt the Copaxone did nothing for me, and I was right. I don’t think I was ever RRMS, because my relapses were so few and far between. I’ve had three major ones since 2007, hospital now saying I’m Secondary Progressive which I feel fits. It’s sounds like your similar to me and hate medication, prefer a more traditional and natural approach (good old fashion sunshine).. there’s a lot to be said for it. I’m very sorry to hear your having this flare up, if you don’t mind my asking how is the cognitive issues presenting themselves? I can relate to the anxiety big time. I hope you get some relief soon and the flare settles down. Take care.
I totally agree with you Neil! I did the same with cop axons and a couple of other drugs. I do believe the pharmaceuticals are the ones doing well!! It's a shame.
Hell Melinda, that's interesting to hear you did the same. I just don't think Copaxone did anything for me, I know I didn't relapse whilst taking it but I have this feeling I wouldn't have done anyway whether I was taking it or not. All Copaxone did was hurt when I injected, uhh horrible.
Hello Neil, I was diagnosed with MS back in February of 2002, 19 plus years ago, and I have been taking Copaxone off and on since 2005 And I sometimes feel like a human pincushion, what with all the injections (1,601 so far) and was told by my neurologist that I would be taking the injections into my 50s., You quit taking Copaxone, and I feel that, like you, I want to quit taking the injections as well.
Hi There, good to hear from you. I feel your pain “literally” from all of those injections .. wow! There are SO MANY different options available now for Disease Modifying Therapies (DMD’s) with MS. You may not know this but there are different tablet therapies, but also ones whereby you can have treatment six monthly or monthly dependant on what you have. I’m shocked your Neuro said you’d be on Copaxone until into your 50’s and not keep you apprised of newer and more effective medicines! Time to put your foot down maybe, and push for a different and more suitable treatment for you, put yourself first.
I've done 3 shots now, and yes, there is some burning, for about an hour, but otherwise, so far, so good. I was also on Rebif for years, that drug makes you feel like you have the flu all the time, so I went on Tecfidera, massive GI symptoms, hung in there for 3 years and then started to get a reaction on my skin, so they put me on Aubagio, terrible stomach pain, to the point, I couldn't even eat anything at all, so my doctor pulled me off of that. I was supposed to get Ocrevus, but my insurance denied it. I really wish you could give that a try, my insurance, basically told me, I have to take the generic version of Copaxone, called Glatopa. There will be some discomfort with all of them, but looking at the big picture, I can't afford to go downhill, from not taking anything at all. I hope this finds you well.
Hi Andrea, I was also in Rebif for a few weeks but like you had cold flu symptoms. Then moved onto Copaxone for a couple of years. Ocrevus unfortunately isn’t approved yet in the uk. Good luck with the Copaxone, I had no side effects apart from the injection site reactions. Today isn’t a good day for me. Take care.
I'm enjoying your videos. I want to know what is the difference between a flare-up and a relapse? I thought they were the same thing. Thanks for your encouragement.
+Melody Kubiak Hi Melody, I was always led to believe that a flare up is existing symptoms which have got worse (flared up). Where as a relapse is new symptoms which you've not had before. But I believe there are exceptions to these rules, and I've learned there are some grey areas. Hope that helps a little.
Thanks--I think I understand it now. I have constant low-level numbness, so if it worsens it's a flare-up, but I assume when my intermittent muscle weakness comes back (it always completely goes away) then it's a relapse? I had a 30 week break between times of muscle weakness/trouble walking that ended last week. I'm happy that it lasted so long! I'm not seeking a diagnosis anymore. It's too expensive. My husband is the only one working in our family.
+Melody Kubiak Hi Melody, by my understanding I would say that's absolutely spot on. I'm sorry to hear that your health care is expensive, it should be every persons right to have good health care whether they can afford it or not. I wish you well.
Health care in the US is horribly expensive, and I know there are people who are more adversely affected by it than ourselves. Prices skyrocketed when Obamacare was approved and have gone up every year since. I had to quit working in 2002 because of fibromyalgia, which I've had since 1974 but got to an unbearable level over the years. I started MS symptoms back in '98, though I didn't know what it was. The muscle weakness started in
'08. After four years of doctors and four MRIs which cost us over $1100 in out-of-pocket copays I gave up trying to get a diagnosis. My GP believes me so I tell him about my symptoms when I happen to see him, just to keep him up to date. I am leery of taking MS meds, mostly because of the side effects. I can't imagine how much they would cost us each month. I take so many meds already that I don't want to add more to what I already take. My husband has COPD and his meds are expensive. Thanks for the encouragement. God bless you.
Hey Neil, i have watched your video and found it really interresting because we used the same medications. I was diagnosed december 2011 after i had dubbel vision in my right eye. Soon after that i startet on rebif ( because i liked the gadget aswell). The side effects of this drug were horrible. If i didnt take a normal pain medication i had bad flew like symptoms. But with a pain pill i had no problem with it. This went on for 6 months and then the side effects went away so i was happy with that. But after a year my neuroligist tested if the drug still works. And yeah it didnt my body was immune to it so i had to change medications. Then i startet with copaxone 20ml. In the beginning the side effects were really nasty big skin bumps and burning every time, that hurt like hell. Dont remember how long i was on the 7 days a week tho. But now i use 40ml only 3 times a week and it has been working for me. I only inject myself in my bumm because like you i dont have a lot of fatt to do so. And doing it in my tummy i dont like the look of it. I am still on Copaxone to this day and my last mri scan didnt show any changes so thats good i would say. I have not had any relapses sinds my diagnosis, so do i even know that i still need the drugs i really dont know. But using copaxone for me is not as mutch of a problem as it was for you. There are days that i dont even feel the injection ( i do them by hand with the autoinjector they hurt so its mutch easier this way). But as long as it goos allright i am sticking with the medication. Should i someday get more relapses i can say to myself i have done what i could, and if i wasnt on any medications i would be pissed at myself for stopping with it. Neil mutch respect for you to share your story like this it was helpfull to me.
Thanks allot and wish you the best of health in the future.
Hey there, and thank you for sharing your experience with Copaxone. I was also on the 7 days 20ml at the time. They were just releasing the 3 day version just after I’d decided to pack it in. I’m so pleased you’re managing ok with the drug, if your getting no lesions and your illness isn’t progressing then it looks like it’s doing it job properly. I’m pleased about that! If you do start having an increase in relapses, there are other drugs you could try now, stronger ones which don’t require injection. They come in tablet form, or some of them are by IV once a months and are very effective. I wish you well, best to you. - Neil.
@@NeilBradleyMS Hey thanks for responding. Yeah as long as nothing changes my neuroligist doesnt wanna change anything and i think thats is the way to go. I have watched your later videos and seen a decline in your health and i am very sorry to see that Neil. I really wish you all the best and looking forward to seeing more of you in the future keep strong.
Sander vG Thank you, yes certainly this last 2 - 3 years my health has taken a significant decline. It’s hard, dealing with failing mobility after I’ve been perfectly fit and strong for 45 years (I’m 48 soon). Thank you so much for taking an interest in my videos, that means a lot to me. Be well my friend. All the best.
Oh my god tinnitus is the pits. I always know when i am going to get a UTI or something as the bell tolls lol. x
having PPMS they dont work on me DMD. They do have Ocrevus now but mine is too far gone for that.
21 years medication free. I was never offered DMD. I spoke to a great pain med doctor who told me if you can keep off the drugs for MS as they make you feel worse, as they can tire you out and make you feel rough. I eat well really well, i take vitamin D everyday my bloods showed i had good levels of B12 and Vitimin D.
You are having exacerbations of your symptoms not relapses so it makes you wonder if you do have PPMS. I do think you are making a decision for your WELFARE. Not everyone can cope with the injection sites, i know quite a few on MS sites who have struggled with the injection sites. I think you are dealing with your MS for you. I think you look ok can I say that? I can still walk and talk, and its all done naturally.
Hi There, yes Tinnitus certainly is the pits .. having a noise in your head that we're unable to stop or control can send one mad I think!
I'm surprised you were never offered medication, the side effects can make you feel rough. Most of them supress your immune system and help prevent attacks/relapses.
Having a very analytical mind (I've programmed computer software for 30 years+) I do a lot of my own research, and it's surprising how many of the PPMS boxes I do tick. But when I raised this issue with my Neuro, she dismissed it almost straight away but I still think I could be PPMS. Although at the moment I'm in a grey area, my MS diagnosis is no longer secure and they think it could be NMO (Neuromyelitis Optica).
♥️ your videos.
Good morning Gabby, and thank you so much that means a lot to me. This particular video is one of my earlier ones now, a lot has happened since then including I've been re-diagnosed (again). I've documented everything in more recent videos over the last 12 months or so. I hope you are well, and staying safe from this dreadful Covid-19 virus. Very best to you - Neil. 💞
Walking gait balance optic nuritus. Things like that. So I saw the video Where you Decided to stop taking your preventive modifying medication. How do you feel? I thought about stopping my injections but my nuro strongly disagreed. You truly are helping people especially recently diagnosed with ms. Your so real and make me feel like I'm apart of the family. Seriously I hope that didn't sound creepy.
Hello Gabby, not creepy at all .. with such a horrible disease as MS you need to feel part of something, it really does help.
As you probably know from watching the video I made the decision to stop taking Copaxone because of the Injection site reactions, I just couldn't cope with them anymore (the pain) but I did persevere for two years I think it was. This was back in 2014/15/16 sort of time. After stopping the injections, I never really noticed any difference. Recent years though I've gone drastically down hill. But my illness is more complicated now because I've recently been re-diagnosed with something called "Neuromyelitis Optica" or NMO. It's still an Auto-Immune disease so it's in the same "camp" as it were.
Copaxone is now a relatively old MS drug, there are a lot of newer Disease Modifying Therapies available which are significantly more effective. It all depends how you are doing on Copaxone, and how you are coping on it and whether or not it's keeping your MS at bay. It's important to be guided by your Neuro, but I feel it's also important to do as much research as possible as to your condition to discover what is available to you.
Regards - Neil.
I've been on Copaxone for going on 6 years, 40 mg 3 X a week. I stopped injecting in my thighs. I couldn't do the 20 mg. what I like is you don't have to get blood tests constantly.
I’m not sure if you know but Copaxone is considered and older disease modifying drug now. It’s still very effective, but there are MORE effective drugs available now.
The fact that you can hardly walk tells me your MS is quite advanced. Perhaps it might be an idea to talk to your Dr and see if there is something more suitable like Ocrevus or Tysabri. Not wanting to give you false hope, but research tells me (Google and TH-cam) these drugs can improve mobility over time as well as being more effective in slowing down attacks. Bless you.
I'm going on to the 3 times a week Copaxone injections soon. Doing it every day has made me so depressed from the pain. After a long day at work I would come home, start to unwind and then look at the syringe and say no no no! I've done it for the last 5 years and I've got dents in my flesh. It's kept the MS at bay but I can't stand the daily discomfort anymore.
+Miss DogLover Hi there, I can totally understand where you’re coming from, hence the title of my video. Everyday injection was ruining my body, I was full of bumps and bruises. Did you ever accidentally inject into muscle? Pain!!! I’m pleased Copaxone is working for you, and yes three injection a week is so much better for you. I’m no longer on any DMD. I wish you well, and thank you for commenting. Good luck
Neil Bradley Hi Neil, no I've never hit a muscle, too much fat lol. It's so tough doing these injections that I miss lots of doses so it's probably pointless. Looking forward to injecting 3 times a week (never thought I'd ever say those words). Wishing you well.
+Miss DogLover Ahh bless, well you sure do know about it if you hit a muscle😲 I used to inject after my dinner at night, as to make it part of my routine. That way I didn’t forget. Three times a week is definitely going to be much better for you. Thank you for your good wishes, best of luck with your new injections. Wishing you well also. Lovely to hear from you - Neil.
Hi Neil, quick update from me. I’m doing well on the 3 times a week Copaxone. Still no major relapses but disability is slowly progressing which is part and parcel of it all. No major side effects from it. My MS Nurse was hesitant to put me on it initially because any side effects can be worse with the stronger dose. How are you doing?
Hey there, lovely to hear from you again .. I know it was a little while ago but I recall our conversation. I’m really pleased you’re tolerating the Copaxone and you’ve had no relapses. Seems you are quite suited to the drug. Do you have any injection site reactions at all?
I have been doing quite well until the last couple of weeks, particularly the last 48 hours .. the stiffness in my back has ramped up, along with the tightness of my legs and increased spasticity. I’d got a bit of quality of life back since having IV asteroids on my birthday (10th Sep), and I’ve not been so good for a very long time. The effects only last a few weeks, but this time it felt different for some reason and I was hopeful it would be prolonged. Sadly not though. Really fed up of it all.
Great to hear from you once again, I’ve done several more videos since we last chatted, mainly just vlogs now documenting events with my life as they unfold. I’ve found this very useful to look back on, a video diary of sorts.
Take care - Neil.
I took this one before to .... I had the same reactions. Knots to no end . I had to stop because they knotted up so bad and iched so much that I ran out of spots to stick too. So I stopped taking that one.
+Jessica Wilson Same for me Jessica, I ran out of spaces to inject.
Copaxone has decades-long history, and has been found to help RRMS, slowing progression of the disease, and even showing slowing of new lesions appearing. No guarantees, though. I, personally, would not stop Copaxone unless you're having SERIOUS side effects. (Just my note to others, Neil. Each of us have to make our own decision. ;-) ) The only side-effect I get (and it depends on the injection site, of course) is the slight itchiness in the injection spot, but it is temporary. Neil, I also have severe tinnitus in my left ear. I asked my neuro about it because I had a BAER test done. He explained to me that yes, the tinnitus was most likely being caused by my MS. The BAER test showed that I have CNS damage in those nerves going to my brain stem. Anyhow, he said that valium (generic name here in the states is diazepam) has been found to help tinnitus. I've tried a small dose each evening of 5 mg. and it has helped almost 100%. We don't know how long it will help, of course. Hope you're having a great day. Thank you for the videos! (BTW, I hate the auto-injector. I just use the syringe the way it is.)
Hi Terri,
Thanks very much for the comment, appreciate it. As far as side effects go on the Copaxone there was just one and that was the injection site reactions. For me, they were terrible, huge lumps and extremely red, sore and itchy. I'd just had enough. Really pleased you're more fortunate with the drug though, because like you say it's got a good long positive history.
Tinnitus is one hell of an evil conditional, and I'm sorry MS has caused this for you. I went through a terrible few years myself with Tinnitus back in 2008 shortly after my MS symptoms started. I still get the background hiss and occasionally the ringing starts up but it's no where near as bad as it was. My anxiety levels (because of the T) back then were also through the roof which wouldn't have helped. I was never offered anything for it, I was just told there was no cure and learn to live with it. Easier said than done right?
I never quite mastered the technique with just the syringe, and yes the auto injector is a bit fierce.
Good to hear from you Terri, and I hope you're managing and coping well with your MS.
Regards - Neil.
thank you for all your videos. i have self too ms from off 2005 and have a slow run. now i come to remember my self on ms argain on that i feel the start from my 3x that mine ms come to hit me argain. and need medicatiln argain to slow it down the simpons what i come to feel in my foods and legs and on my bully. i dont use medication all is much time say to me that i can have it. but for my self i dont want it soon what i have much hear over it and i dont want to feel my self more sick. i have always say to my self i want only try it as it come 2x in one year time than i want try out. its come from not like to take druks so long i have it feel that i not need it. what i have know 3x a ms hit and now in start my 4x that ms is start to hit me. and as i see the time that i recover my self and be feel good take long. my lost time was 2 and half year back i was have a hit from ms and now it start argain and need a infusion argain and i hope it want slow it down for 2 and half year argain of more as im luck. im still afraids for use medication on that the most tell me that it want make you feel for a time you have a fiber and i dont like to feel me more sick that i real are. but i know every one with ms have the own way how the deal with him self and the own way how to feel it best. imvery happy with your video's on that i chat some times with friends over the world and its very hard for me to tell some friends in enghels what i real have and you are tell over it on a so a other can understand it too better what for me its very hard to tell it in enghels what im not so good in enghels, and on the net you find soon too things what are not always true and also not is ms. so i want thank you argain for you good job here with vidoe list its good to understand for poeple what not have it by there self. i hear much things what i have by my self too as its start to attck me
Dear Edwin, thank you so much for a lovely response to my video.. I'm so pleased you've gained so much from watching them which is my goal.
I'm so sorry to hear about how your MS has effected you, and I can honestly say I do understand where you're coming from. Yes, the side effects of the medication can be unpleasant can't it, but hopefully (as the Dr's say) the benefits out way the side effects. If you have Relapsing Remitting MS (RRMS) drugs such as Copaxone should help prevent attacks by about one third. As you have learned by my video though, I really struggled with the injections so its not always an easy road. I rarely get attacks now, my MS Specialist has said I'm in a transitional state to Secondary Progressive MS which is why my symptoms remain the same pretty much all the time.
I can totally relate to the symptoms you feel on your feet, legs and body because my feet and legs are effected the most and I feel the most pain in them especially at night time. In fact, the pain keeps me awake on a regular basis.
Being able to chat with friends is definitely a positive for you, and it can also be therapeutic I think.. but as you say it can be very difficult to explain what MS is and how it effects your daily life. Might I draw your attention to a video I did on this, which hopefully explains it in a simplified way which you can use to tell other people.
It's video number #6 on my MS Vlog Playlist and its called "MS An Easy Explanation", I've included the link to my playlist below for you.
I hope you continue to manage your MS and cope with your symptoms.
All the best - Neil.
th-cam.com/play/PLKh4CtwH9cEUJcntnXWXyo-OtqnMccwWU.html
thank you
I decided to start on Tecfidera. Fortunately I tolerate the drug well. I only suffer the odd hot flush every few days. I have been on it for about a year now.
That's good, one of my Facebook friends "Gareth Ault" recently posted on my timeline.. he 's been diagnoses with RRMS and is thinking about starting Tecfidera. He's very worried about it, I might just let him know your tolerating it pretty well.. might help him reach a decision. Thanks Trev.
@@NeilBradleyMS I was on Tecfidera for almost exactly a year before my liver enzymes spiked drastically (over 550% higher than the high end of normal range). As such, they've taken me off of Tecfidera and are now moving me to Copaxone.
Hi Kristal, woh that’s one heck of a serious spike in enzymes. Good luck on Copaxone, I was in it for two years but struggled with injection site reactions. Not everybody gets this though.
Forgot to add, my hats off to you all that do the daily injection. I would not have made it this long if that was the only option available. I get enough anxiety doing it 3 x week.
Hey there - The 3 x week injection is twice as much Copaxone (40 mg I think) to the daily injection so potentially the chance of having a worse skin reaction is higher. However, the daily injection I found I used to run out of injection sites when rotating because they took so long to heal.
good vid neil thankyou........ i was on it then i quit, now after a relapse im back on it. I cant face the possible side effects of pill form
+Jameson Desjarlaise Hi Jameson, good to hear from you. Yes, one advantage of an injection is the drug doesn’t have to digest and go through your Gastrointestinal Tract making you feel sick etc. Down side for me was the injection site reactions. Are you having regular relapses? I’ve had three major relapses in ten year, unfortunately they’ve left me very disabled now. I’m also SPMS. Regards Neil.
are you using cannabis for the muscle spasms? I could not carry on without it.
+Jameson Desjarlaise Hi Jameson, I’ve just started using CBD oil a few days ago. It’s a bit early yet to notice any significant improvement but I am hopeful. Are you using the oil or the real stuff? Take it easy.
the oil wont do much for the spasms. you need to inhale either smoke or vapor. when you inhale it goes directly into the blood stream.. stops spasms instantly. when you ingest, it goes thorough the liver changing it slightly... i find this way really helps with the numbness and nerve pain. good luck neil
+Jameson Desjarlaise Thank Jameson, your input is very much appreciated. I hope the Cannabis continues to do its job and keeps you spasm free. Thanks for commenting, and good luck to you also. 👍 Regards Neil.
hi neil, hope your doing well
Hello Kevin, I'm doing good thank you for asking. I hope you are too.
Hi Kevin - It took quite a long time, in fact just over a year I think. Long story short, I started with my very first symptoms in 2007 then improved but never got completely better. Then in Feb 2012, the familiar 'weird' sensations returned in my feet/legs which is when I started the process of getting it all checked out again at the hospital. I wasn't diagnosed until May 2013 so about 1 year and 3 months after I presented with symptoms again. However, during the diagnosis process the waters were muddied so to speak because of a Disc Compression I had, they thought it was that causing all my strange symptoms. If you've not already done so, check out the rest of my videos in the MS Vlog playlist which explains this in greater detail, I've tried to stick to a timeline.
Thanks for your enquiry Kevin, I recall in a previous comment you have symptoms in your legs.. do you have any other symptoms and are you in the process of getting it checked out?
Kind Regards,
Neil.
I am allergic to copaxone unfortunately.
I hate the burning pain too i take glatiramer acetate 40mg
Hey there, the burning pain is just the worst thing. Hopefully Copaxone is working for you, and keeping your MS at bay.
But the symptoms are alot less then other meds plus safe on your liver and kidneys . My doctor told me fo take aubgio i declined because of the liver problem it can cause
Hi there, yes Copaxone is a safer medicine to take but it's quite old now and one of the least effective. Some of the newer Disease Modifying Therapies are significantly more effective, but like you say the trade off is the side effects on Liver, Kidneys and a lowered immune system. However having said that, you would be monitored and if there is detrimental side effects they would tell you and you could make a decision. I was worried about going on my most recent medication which is called Azathioprine, but I feel fine on it even though I will now have a depleted immune system. They are monitoring my blood every months, and so far all is well. The way I see it with my own illness is I've got to take some risks to try and be the best I can. I totally appreciate how hard this decision might be for you though. Best to you - Neil.
Did you think of Copaxone 3 X a week?
No, the three times a week wasn’t available when I was using this drug.
How are you doing
Hi Michael, thanks for asking .. lets just say I've been better, keep plodding on though. Thank you for asking. I'm hopefully going to publish a video at some point today, nothing too exciting, just a bit of an update. I hope all is well with yourself.
OK SIR your opinion on black seed oil
Hi Larry, I’m afraid I’ve never tried Black Seed oil.
I have just started the Lady that's helping me cure my MS said I should start talking it 1tsp in morning and 1tsp evening
LARRY HOFER Dear Larry, I’m sorry to have to tell you there is NO CURE for MS. The oil MAY make you feel better and reduce your symptoms, but it will not cure you. If she is telling you it will cure you, then she is lying to you, and probably just wants you to keep buying her product.
No way this lady does not lie
@@larryhofer8853 I totally appreciate that Larry, and I honestly do not mean to upset you. But, there is NO cure for MS I'm very sorry say. Perhaps Black Seed oil helps you by relieving the symptoms then, which is a very good thing.
Ps I never injected legs or arms..
But I don't think I could do daily injections... I do 3 times a week.. Not a lot of injection site reactions now but occasionally happens
Yes, every day was becoming extremely troublesome for me. When I went on Copaxone, the 3 x week option wasn't quite available here in the UK. I might have found that much better. Thanks for the comment.
Arms and Legs I would say in my experience are definitely the most painful! :)
I took Copaxone for a couple years. First everyday then 3 times a week. It came with Autoinject. Easy fairly quick and basically painless to use. I have Primary Progressive but doc felt the Copaxone would help keep lesions down. Had a few new lesions during that time. Was challenge to remember last injection site. The bumps required massaging site after 24 hours. Now I’m on Ocrevus infusion every 6 months. Bout a 5 hour sitting the only challenge is the 400 mile round trip. Not a big deal much. Not a good heavy traffic person.
I can understand the 400 mile round trip being a challenge! How are you doing on Ocrevus?
Neil Bradley I feel really good generally but I still have fatigue, spasticity, and cogfog. Good news is I don’t feel worse.
Thank you! I agree! I too, took Copaxone for 2 years. I stuck it out as long as a possibly could. I woke up one day and said “no more”! I just couldn’t hurt myself one more time. I tell people that it would be like me handing you a hammer and telling you that you had to smash your finger one time each day. But the “good news” is; you can pick a different finger every day! 🤣 Ridiculous, right? And when I would complain about the side effects, the professionals would try to downplay it or make it sound like I was being a wimp. It was not the needle! It was the medication. The pain was not worth it to me either. I also am not taking anything currently by choice. Stay well!
I couldn’t agree more with you, I stopped injecting on the last day of 2015 and never looked back. I am having attacks though, but the question is would I still be having those attacks if I was taking Copaxone when it only has an “up to” one third chance of reducing my relapse rate? I think that I would. I’m now SPMS and I’m faced with another DMD (injectable) decision, it’s once every two weeks which doesn’t sound anywhere near as bad. It’s called “plegrisy”. I’m very reluctant though because I don’t want to feel like I’ve got a 24 7 cold, and have my liver/kidney function violated. All for “up to” 33% possible reduction. It’s such a balancing act and a double edged sword. I like your analogy with the hammer and fingers, good one. 😊
The problem shouldn't necessarily the method of administration but whether the medication is doing what it is supposed to do for your body. It would be nice to hear and trust that it was 100% effective but I would say that no medications are. Sure, stabbing yourself is a bother but I wouldn't tell someone with diabetes to ditch their meds on that basis alone. That said I am aware that insulin is more acutely impact but some people with diabetes are injecting daily and pricking their fingers. This is perhaps an easier stance for me to take because I am only prescribed injections three times a week and as such do not experience the traffic jam of injection site lumps.
I hope they continue to develop more alternatives to injections for MS with less side effects and required labwork than the pills that are currently out there.
Hi there, and thanks for your message. The problem with the Copaxone injection site reactions (certainly for me) was the not the needle prick itself, it's when the medicine (copaxone) pools under the skin waiting to be absorbed by the body. This is what used to cause the golf ball size lumps and bumps which were extremely painful and sore. By the time we've rotated the sites, the huge red lump still hasn't recovered and gone down before it's time to use that site once again. A lot of people get to the point whereby it's just not manageable anymore, certainly this was the case for me.
My wife is Diabetic, and has to inject Insulin both in the morning and at night. She has to combine this with taking blood sugar by pricking her fingers, also twice daily.. sometimes more often. This doesn't really hurt her at all, it was nothing compared to the Copaxone I was taking. Clearly Insulin doesn't react under the skin like Copaxone does, and primarily this is what the problem is when I'm talking about injection site reactions, and why I had to give it up.
Fortunately now, there are a lot more alternatives in the form of IV and pills .. Copaxone is in fact now considered and old and one of the least effective DMT's out there now, but it is still very good for a lot of people who are on it.
Regards,
Neil.
Sounds like nurse was a bad teacher