Are Biologics the solution? Absolutely! I’ve been on a biologic for 5 years now and have gone from having to use a rolling walker with the padded seat and basket (called rollator in Canada) for any amount of walking I had to do and on a slightly better day, I would ambulate with the use of 1 or 2 canes. I feel like I now move much like I did 30 years ago, when AxSpa and Peripheral Spa were just beginning. They have been a miracle. I’ve had 0 side effects. ZERO side effects! I’m so very grateful to have found a doctor who actually listened to me about my pain and ever increasing lack of mobility without saying, “Go to physio and get more exercise.” Biologics were a game changer for me (I CANNOT use any NSAIDs due to another medical condition. ❤❤
Thank you so much for making this update video. I'm 27 year old female hla b27 negative who has been living with AS for a little over half a year. I will likely be starting humira this summer after I work through it with my insurance and get my vaccines in order. I'm glad you've had such a great experience and I honestly teared up when hearing how you could exercise normally again. I have two kids and very little energy for them while I'm working full time. I'm feeling hopeful that a biologic will help me because honestly like you said this disease impacts your mental and physical health so much.
Hi Melissa, I'm too an Hla B27 negative, I believe this happens to people like us due to processed foods and gluten, did u try vegan diet and detox ???
@@Beamlight7 I have been vegan longer than I've had AS. I've had AS for almost one year and have been vegan for 7 years. I have stopped eating gluten since it was upsetting my digestion at the onset of my symptoms but it hasn't helped my pain.
Thank you so much 😊 I’m seeing my Rheumatologist tomorrow morning so I can proceed with the biologics after innumerable diets, anti-inflammatory drugs and persistent pain. I hope you’re still feeling good 🙏🏻
Thanks for this. I have hlab27 negative AS. I am a 45yr old yoga teacher and just been diagnosed, finally! I have one hip replacement so far and will be starting biologics next month. Very keen to start soon as the methotrexate and prednisone have done nothing. Lovely to hear that you are responding so well to the treatment, you are giving us all hope! xx
Hi B&B.. First, THANK YOU for your videos. I am 58 and have AS that was only diagnosed 5 years ago. My entire spine is involved (“bamboo spine”) as well as my hips (since age 27) and both shoulders m knees and elbows now. That was only after so many years of disc surgeries and “procedures” (highly profitable injections of whatever). I am HLA-B27 negative and have been on 6 separate biologic drugs with no help. I’m at the point where I can’t move around without the use of a cane or walker. The pain is completely indescribable and the pain mgt docs who used to hand out sacks of SACHLER CANDY back in the early 2000’’s and now says “the opiod wars … overdoses, insurance crap, etc” and won’t prescribe anything stronger than aspirin. I’d love to find a great PT near me, FAMILIAR with AS and with in home treatment a big plus. I’m in Morris County NJ. Any suggestions? Thanks to All!
Hi there. So sorry to hear that you're in so much pain. I have lived with AS for over 20+ years and it was really bad in my 30s. But now, the pain has reduced significantly and my thoughts aren't focused on pain every day.I would suggest asking your doctor for a referral for a PT. They can give you an at-home treatment plan. I did this and it was helpful.
My daughter is in her early 20s and she has been diagnosed with AS since August 2020. She is lucky in that her first flare was in November 2019 so it was not a prolonged period to sort out what was happening. She began taking a biologic called Renflexis in Jauary this year. It is working beautifully for her. She has been pain free and has not had any side effects from it. She now goes for an infusion every 8 weeks. It takes about 2 1/2 hours at the clinic.
How are you feeling now? Pleeeease Update Us 🙏🏻❤️ I'm a 25yrs old female, who's going through the biologic ttt the next month. So your feedback is highly appreciated!
I live in TX and it has taken a couple of months to get approved for biologics. My doctor had to switch to 2 others. The 3rd one was approved when I switched to another insurance. Waiting to start. 🎉
Thank you so much Dasha for your vlog and sharing you process, please let us know how is Humira working for you after all this time and if in the long term you have had any issues. Thanks
Thanks for sharing! I didn’t know the factors you mentioned about TNF-inhibitors not working as well for females, or if your disease is more active/you’ve had it for longer. I’ve been doing the Enbrel injections for 3 months now while also taking Hydroxychloroquine and prednisone at the same time-and nothing. Absolutely no improvement for me. I even feel like it’s still just progressively getting slowly worse, it hasn’t even slowed down any with the meds. It’s likely I just need to try a different TNT-inhibitor or even a different kind of biologic, because I was supposed to feel even a bit of improvement before now. I’m only 25 and I’ve had pain from AS for 10 years, started when I was 15 and taking all kinds of exercise classes, running, lifting weights, yoga, super active. Now I can’t work out due to the pain, stiffness, fatigue. I miss it! Ugh, just keeping my fingers crossed that some medication exists that can help! Thank you for your content and sharing your experiences, I can’t state how truly important it is to see other female humans with this condition when we’re constantly gaslit, overlooked, and downplayed by doctors who have been told it’s a mostly male disease.
In the US, If you search out a rheumatology clinic with their own infusion clinic, The Cost can be pretty reasonable. I have been spending about $50 perinfusion, Between insurance coverage and prescription coverage card from the manufacturer. The clinic I use is very concerned with patient access to medication and works hard To find all resources to make the cost doable.
I have been trying to get on them for over 16 years 29 after second high risk pregnancy and septic infection started a slew of autoimmune disease that has been causing me to become a bed hermit and I finally got approved to start humaria waiting for delivery to start I am actually excited for the first time in ten years to have hope again
I have had AS symptoms since Christmas 2021. It has definitely changed my life over the last couples of months but I am trying stay positive despite living with chronic pain. I can do most things still mostly because of a lot of prescribed NSAID but working out has become difficult especially running and chest exercises - I have inflammation in my right collar bone. I am starting on humira in two days. I hope that I will have similar effect as you with limited side effects. Luckily the drug is free in Denmark. Stay positive!
Hi enjoyed your blog. I have been on Etanercept for about 4 years now but I think my body has got used to it, as the pain has especially in my hands and wrists has come back. I’m going back to the hospital next week to talk about trying a different drug.
I got diagnosed AS and hla b27 positive since 2020. My back has problem and two days ago I also found I have pain in my both jaw. I have no idea idea of where to start taking care properly. I have Thai doctor that treated me and she told me not to care or worry about diet routine and stuff. Right now she asked me to buy inject medicine that cost 1500$ for a box and can only use a month. This is insane and not helpful to live in Cambodia where not many options to discover for help But I’m here on TH-cam to learn more Thank you all for sharing information and stuff
I have very severe AS for 10 years and now been on zero starch diet for 2 years with great results , no pain meds , but it must be total zero starch not low starch, I have found an almost carnivore diet is the best for me, hope you manage with the drug and don't have too many problems with it. good luck.
Hey, I have AS too. Are you using humira right now? I find gluten and sugar cause me major fatigue but I find it really difficult to stay off it completely! Well done for the 0 starch diet. Is there anything else that helps you? Best wishes x
been on Remicade and Humira for 15 years, Remicade deliver me from serious pain back then. I was in my half twenties. 48 now, i don't take no more medication. Pain got away. Sure i still stiff and my back and neck are soldered. Stopped taking those due to flesh eating bactéria, sceptic infection.
Has anyone looked into the cancer risks of these anti immune injections? I have been offered this course of action however when you read about the risks, it shows the potential of several cancer related issues. On one hand without medication we are open to cancer but with medication it will risk even higher so it does not feel like a good compromise. Interested to know how this has progressed? How has it been Dasha?
Interesting to see the difference between healthcare in the UK and in the Netherlands. In my case my rheumatologist started a conversation about biologicals as if it was a very big deal and not someting to consider as a next step unless absolutely necessary. She is a female reumatologist and I've never experienced anything out of the ordinary because I'm a female with AS. Also, the healthcare system in the Netherlands does not really consider the costs of medicine in the same way as you describe, happens in the UK. I spoke with a specialist on biologicals in the hospital and she said that in the current state of my AS, it would be completely my choice. And because I saw it as a way of being confronted with my AS in a more severe way, I decided against it for now. But your approach makes me reconsider! It is ofcourse about living your life as painfree as possible. But, at the moment, after going through uveitis for the first time I'm now waiting for a diagnosis for inflamation in my large intestine. My gp thinks it could be crohn's or ulcerative colitis and I have no clue if biologicals are now considered necessary or a fitting option. I'll have to wait and see. Thank you for sharing your story!
Ive been hearing a lot that humira helps with AS. But it's so sad that humira isn't covered with national health insurance in Indonesia and it's super expensive
I've just had my diagnosis of AS 3 weeks ago as a 42 year old male, i have been given Etoricoxib for pain but it doesn't touch the sides. The Rheumatologist mentioned that if these don't work which i don't believe they are then i could have injections. Is this what she is speaking of do you think? I would do literally anything to be pain free right now. I tested positive for HLA-B27 after 2 uveitis attacks and a history of back and neck pain which causes constant headaches.
I have had Seronegative RA since 2019, fortunately for me the base level disease modifying drugs have worked very well after initially using prednisone in the early stages. In Australia Biologics cost 18k per injection, the government will only pay for it if Biologics is a last resort.
I have psoriatic arthritis. I was diagnosed in 2008, I started my first biological medication two yeas ago, I take infliximab infusions. Sadly, I haven't had the best outcome, I may have to change to a different one.
Hey Dasha, thanks for doing this video. I’m going on Humira tomorrow and was feeling concerned about it but I’m truly relieved to hear your experience was good. I have pretty much the same Health situation as you. Female, in 20s, and also struggled to be taken seriously by drs. It took around 13 years to finally get the diagnosis of AS after the symptoms first started. I get Iritis yearly too. It’s a nightmare! Would be interested to see how you’re getting on now! Really hope you’re doing good. My main issues are fatigue and lower back pain. Have you any tips for managing fatigue? I notice sugar, gluten and almost anything saturated gets me in a haze! I still haven’t quite managed the ‘perfect AS diet’ yet but fingers crossed. Take care and thanks again for making this. Xxx
Hey Nola, hope you're well. Just wondering how did u go Humira, do u mind sharing Ur experience, how did u find it and how long it took humira to kick in? Just starting my humira... Stay strong...
@@kalqubbaj4853 Hi Kal, thanks for reaching out. I’ve been on Humira for quite a few months now. I have to say, it has been a wonder drug for me. I have not had many flares ups at all. It suppresses your immune system so it is important to take supplements such as vitamin C, D, multivitamin. I haven’t had an increase in coughs/colds but it is important to stay active alongside it if possible. I would suggest injecting in your upper leg rather than stomach, I think it hurts less. Also definitely leave it out of the fridge for 30 minutes and hydrate beforehand. For the first month I would inject before bed as you can feel a bit odd for a few hours in my experience. I would say it takes 4 weeks to start noticing less inflammation. Another tip! Do not inject if you feel poorly in any way. I accidentally injected when I had covid and it took much longer to recover! Final thoughts are that it has truly reduced my coccyx pain immensely however diet is a big part of it too. Eating white carbs and sugar definitely doesn’t help with inflammation so a good diet is a must. Hopefully it works for you also. Don’t be afraid to try it and feel free to keep in touch to let me know how you get on x
I worry about the parts like if i nick my leg in the shower while shaving, that can get infected, and dont eat blue cheese because you'll get mold in your intestinal tract and oooo so many more warnings 😮😢
Hi Dasha, my mother is being suggested Biologics for an inflammatory arthritis condition in her sacro iliac (lower back) joint. It would be tremendously helpful to know how this treatment has panned out for you and where you are currently with respect to sustained wellness, outcome and opinion regarding Biologics. 🙏🏻🌻
So I was diagnosed with this when I was 8 years old and I was on medication for it but as a teenager my rheumatologist thought I was in remission but this is not a curable disease so I went many years without a lot of pain and didn't seem like I was having issues until like 5 years ago when I would always be in pain completely exhausted week not feeling very well at all and I kind of forgot about the arthritis that I was diagnosed with right so I had to get my medical records from when I was a kid and found out my medical records from my rheumatologist was 225 pages long I finally got into rheumatologist in January I am 34 years old I am taking biologics because I wasn't on anything for a very long time for it and it's caused a lot of damage in my spine and in my hip joints I have some mobility issues where I can barely walk I'm using a walker and Cane to get around I am also not working it has taken a toll on me big time as far as biologics I haven't felt any different yet I started this January 24th and now I am still taking biologic medication giving myself shots every two weeks but so far I haven't noticed any difference I've still been in excruciating pain I'm trying pain management right now as much as I can I am currently actually trying to get medical cannabis because I do not like opioids
Hi Krissy - thank you for sharing your story. Do you think that staying on biologics this whole time would have prevented some of the damage? And it sounds like you need to either give it some more time or perhaps try a different biologic? Are you HLA B27 positive and are your inflammatory markers raised? I'm sure you will get there eventually!
Thanks for the content. I just get diagnosed with AS (female, 31) and my doctor the 1st thing that said to me, was, no worries, biologics. Here in Greece the health insurance cover it and I will get it for free. I had no idea, that could be so difficult to get the drug in other countries! Anyway, very helpful your perspective. I'm not very into drugs in general and I was wondering if this therapy will be beneficial. But what about side effects?
Thanks for sharing, great to hear your symptoms under control, fantastic. how long it took humira to kick in or to feel its doin something, not asking abt the full effect ? Stay strong, cheers
Be interested to hear if you're still getting great results from Humira, I hope you are. I see that you're not in the habit of replying to people that leave comments, so I'm not counting on a reply. AS is awful for sure, I've been battling for a number of years with no success. I've tried 4 biologics and am now on methotrexate. My symptoms are terrible, a great deal of stiffness and pain mostly. The whole condition is very random: some people get a quick diagnosis, some take years. Some respond to treatment, some don't. Many have side effects, where the strong medication is concerned, some don't. Unfortunately this is a disease that exerts a huge mental toll as well as physical. I imagine it could well be a battle that I wage for the rest of my days.
Hey Dasha, wondering if they worked for you? This was your last video, feels like a cliffhanger 😂. I started them 2 months ago, and seeing improvement but not fully relieved of pain. Wondering how you are feeling 3 years later.
@@kevinwilson6103 haha sorry! They actually did massively help and were amazing for 3 years. But I've had to get off them since as I thought as I had some side effects. But actually still not sure if side effects were in fact related and next steps are TBC!
hi...thank you for your video but I am still sooooo confused about taking biologics...humira is what was prescribed to me but reading the long term effects is scary. Can you shed some light for what you know about long term ? I'm trying homeopathy at the moment but i'm probably buying time!!! please let me know because I'll be seeing my rheumatologist in a month and she'll ask me what i've decided:( thank u
Thank you for sharing your story Gian! It's a difficult choice and seems scary but what I know about the side effects is that very few people actually experience them and the long term side effects are particularly rare! Plus all side effects are reduced if you're only taking the biologics and no other medication. I also know lots of people who have been on biologics for ages and feel great with no side effects, so that was extremely encouraging to me. And if you go on them and experience bad side effects then you can always stop. I reckon the benefits are worth it, so i would give it a try if i was you especially if your pain is currently unmanaged?!
@@dashofthought6959 Dear Dasha, thank you so much for your video. I am very happy to read the comments two I feel very alone in this condition so feedback is really helpful. My question to you is; do you have to keep taking the drug forever? Or can you stop them after some time when the immune system is kind of reset? Did you try?
I’m looking to start Humira soon after trying all the Disease Modifying drugs with no real relief for Psoriatic Arthritis. But would be interested in the process of getting them. Consultant has said that it will be a hard process for me, is it not just a case of being prescribed them? What is the process you have to go through? I would be really interested so I know what to expect! I’m in the UK. Thank you!
Hello dear Dash! Thanks for sharing!, I would like to ask if you evidence any hair loss when taking Biologics. I have been in treatment with MTX and Leflunomide during the last 2 years and I have lost almost 70% of my hair. My doctor and I are thinking in go to Biologic treatment, I am a little bit scared. Regards, Laura
I wouldn’t bother, I’ve tried every single one and every one makes me sick. I’ve just accepted that I can’t take any of them, and it’ll be a slow decline into disablement.
Thanks for this!!! I'm about to start this journey. Feeling a bit afraid of the side effects! I finally got a diagnosis privately via my work health insurance but now I'm thinking I'll need to go via the NHS for actual treatment as insurance won't cover the costs of take home medication. I'm also due to go back to work soon after maternity leave and wondering how my aches and pains are going to fit in with this if I'm asked to go back to the office, not to mention I'm also breastfeeding with a baby that won't take a bottle. I don't know whether to start the drug whilst breastfeeding either.. (if I get the funding!) Any advice you can give would be appreciated!
My story is similar. I tried strict dieting for so so long it just isnt enough anymore. How are you feeling now? Is the biologic still working for you??
Get off it quick. I was on humira trials several years ago, Humira made me sick and depressed and getting off it I had the worst flares of my life for several months. I 99% got rid of my A.S with diet. A lot of the diet advice out there is bullshit. Carnivore/animal based, organic whole foods no processed foods sugar or chemical additives colour flavor etc. Is the way. You will need to experiment for yourself, even start with nothing but beef(grass fed) and water and add other foods 1 at a time to see what happens.
Oh no you need to be on a new diet for 3-6 months just to get it out of your system and then inflammation will come down If it is the right diet for you
Are Biologics the solution? Absolutely! I’ve been on a biologic for 5 years now and have gone from having to use a rolling walker with the padded seat and basket (called rollator in Canada) for any amount of walking I had to do and on a slightly better day, I would ambulate with the use of 1 or 2 canes. I feel like I now move much like I did 30 years ago, when AxSpa and Peripheral Spa were just beginning. They have been a miracle. I’ve had 0 side effects. ZERO side effects! I’m so very grateful to have found a doctor who actually listened to me about my pain and ever increasing lack of mobility without saying, “Go to physio and get more exercise.” Biologics were a game changer for me (I CANNOT use any NSAIDs due to another medical condition. ❤❤
are they expensive?
I'm so happy for you. Yes, finding the right doctor helps alot in early diagnosis and pain management.
@thethemanmanthethema there's a generic for enbrel called Erelzi.
Thank you so much for making this update video. I'm 27 year old female hla b27 negative who has been living with AS for a little over half a year. I will likely be starting humira this summer after I work through it with my insurance and get my vaccines in order. I'm glad you've had such a great experience and I honestly teared up when hearing how you could exercise normally again. I have two kids and very little energy for them while I'm working full time. I'm feeling hopeful that a biologic will help me because honestly like you said this disease impacts your mental and physical health so much.
Oh please share with me some of your very first symptoms
Hi Melissa, I'm too an Hla B27 negative, I believe this happens to people like us due to processed foods and gluten, did u try vegan diet and detox ???
@@mysweetangels6259 I'm hla b27 negative, it started wih sacroiliitis
@@Beamlight7 I have been vegan longer than I've had AS. I've had AS for almost one year and have been vegan for 7 years. I have stopped eating gluten since it was upsetting my digestion at the onset of my symptoms but it hasn't helped my pain.
@@mysweetangels6259 big fibromyalgia flare, some eye pain that went away in a week, and then nonstop sacroilitis for the last 9 months.
Thank you so much 😊 I’m seeing my Rheumatologist tomorrow morning so I can proceed with the biologics after innumerable diets, anti-inflammatory drugs and persistent pain.
I hope you’re still feeling good 🙏🏻
any updates?
Thanks for this. I have hlab27 negative AS. I am a 45yr old yoga teacher and just been diagnosed, finally! I have one hip replacement so far and will be starting biologics next month. Very keen to start soon as the methotrexate and prednisone have done nothing. Lovely to hear that you are responding so well to the treatment, you are giving us all hope! xx
Hey! I hope you’re doing better now…how was your experience with biologics… is it worth it?
This was so encouraging Dasha. Thanks so much! Good to be aware of all of that 💗🙏🏻🌸
Hi B&B.. First, THANK YOU for your videos.
I am 58 and have AS that was only diagnosed 5 years ago.
My entire spine is involved (“bamboo spine”) as well as my hips (since age 27) and both shoulders m knees and elbows now.
That was only after so many years of disc surgeries and “procedures” (highly profitable injections of whatever).
I am HLA-B27 negative and have been on 6 separate biologic drugs with no help.
I’m at the point where I can’t move around without the use of a cane or walker.
The pain is completely indescribable and the pain mgt docs who used to hand out sacks of SACHLER CANDY back in the early 2000’’s and now says “the opiod wars … overdoses, insurance crap, etc” and won’t prescribe anything stronger than aspirin.
I’d love to find a great PT near me, FAMILIAR with AS and with in home treatment a big plus.
I’m in Morris County NJ.
Any suggestions?
Thanks to All!
Hi there. So sorry to hear that you're in so much pain. I have lived with AS for over 20+ years and it was really bad in my 30s. But now, the pain has reduced significantly and my thoughts aren't focused on pain every day.I would suggest asking your doctor for a referral for a PT. They can give you an at-home treatment plan. I did this and it was helpful.
My daughter is in her early 20s and she has been diagnosed with AS since August 2020. She is lucky in that her first flare was in November 2019 so it was not a prolonged period to sort out what was happening. She began taking a biologic called Renflexis in Jauary this year. It is working beautifully for her. She has been pain free and has not had any side effects from it. She now goes for an infusion every 8 weeks. It takes about 2 1/2 hours at the clinic.
How are you feeling now?
Pleeeease Update Us 🙏🏻❤️
I'm a 25yrs old female, who's going through the biologic ttt the next month. So your feedback is highly appreciated!
I live in TX and it has taken a couple of months to get approved for biologics. My doctor had to switch to 2 others. The 3rd one was approved when I switched to another insurance. Waiting to start. 🎉
Thank you so much Dasha for your vlog and sharing you process, please let us know how is Humira working for you after all this time and if in the long term you have had any issues. Thanks
Thanks for sharing! I didn’t know the factors you mentioned about TNF-inhibitors not working as well for females, or if your disease is more active/you’ve had it for longer.
I’ve been doing the Enbrel injections for 3 months now while also taking Hydroxychloroquine and prednisone at the same time-and nothing. Absolutely no improvement for me. I even feel like it’s still just progressively getting slowly worse, it hasn’t even slowed down any with the meds. It’s likely I just need to try a different TNT-inhibitor or even a different kind of biologic, because I was supposed to feel even a bit of improvement before now.
I’m only 25 and I’ve had pain from AS for 10 years, started when I was 15 and taking all kinds of exercise classes, running, lifting weights, yoga, super active. Now I can’t work out due to the pain, stiffness, fatigue. I miss it! Ugh, just keeping my fingers crossed that some medication exists that can help!
Thank you for your content and sharing your experiences, I can’t state how truly important it is to see other female humans with this condition when we’re constantly gaslit, overlooked, and downplayed by doctors who have been told it’s a mostly male disease.
In the US, If you search out a rheumatology clinic with their own infusion clinic, The Cost can be pretty reasonable. I have been spending about $50 perinfusion, Between insurance coverage and prescription coverage card from the manufacturer. The clinic I use is very concerned with patient access to medication and works hard To find all resources to make the cost doable.
I have been trying to get on them for over 16 years 29 after second high risk pregnancy and septic infection started a slew of autoimmune disease that has been causing me to become a bed hermit and I finally got approved to start humaria waiting for delivery to start I am actually excited for the first time in ten years to have hope again
I have had AS symptoms since Christmas 2021. It has definitely changed my life over the last couples of months but I am trying stay positive despite living with chronic pain. I can do most things still mostly because of a lot of prescribed NSAID but working out has become difficult especially running and chest exercises - I have inflammation in my right collar bone. I am starting on humira in two days. I hope that I will have similar effect as you with limited side effects. Luckily the drug is free in Denmark. Stay positive!
Thank you for sharing and I'm sure everything will go very well for you! Keep us posted x
any updates?
Hi enjoyed your blog. I have been on Etanercept for about 4 years now but I think my body has got used to it, as the pain has especially in my hands and wrists has come back. I’m going back to the hospital next week to talk about trying a different drug.
I got diagnosed AS and hla b27 positive since 2020.
My back has problem and two days ago I also found I have pain in my both jaw.
I have no idea idea of where to start taking care properly. I have Thai doctor that treated me and she told me not to care or worry about diet routine and stuff.
Right now she asked me to buy inject medicine that cost 1500$ for a box and can only use a month. This is insane and not helpful to live in Cambodia where not many options to discover for help
But I’m here on TH-cam to learn more
Thank you all for sharing information and stuff
I have very severe AS for 10 years and now been on zero starch diet for 2 years with great results , no pain meds , but it must be total zero starch not low starch, I have found an almost carnivore diet is the best for me, hope you manage with the drug and don't have too many problems with it. good luck.
Hey, I have AS too. Are you using humira right now? I find gluten and sugar cause me major fatigue but I find it really difficult to stay off it completely! Well done for the 0 starch diet. Is there anything else that helps you? Best wishes x
@wanphen what about fruits?
@@davilfs I now eat 0 fruit and vegetable and have no signs or symptoms of AS and take no meds at all.
I'm afraid of humira it has horrible side effects the scariest is MS and cancer
Hi, Dash! How are you feeling? Please keep us updated!
been on Remicade and Humira for 15 years, Remicade deliver me from serious pain back then. I was in my half twenties. 48 now, i don't take no more medication. Pain got away. Sure i still stiff and my back and neck are soldered. Stopped taking those due to flesh eating bactéria, sceptic infection.
Has anyone looked into the cancer risks of these anti immune injections? I have been offered this course of action however when you read about the risks, it shows the potential of several cancer related issues. On one hand without medication we are open to cancer but with medication it will risk even higher so it does not feel like a good compromise. Interested to know how this has progressed? How has it been Dasha?
Interesting to see the difference between healthcare in the UK and in the Netherlands. In my case my rheumatologist started a conversation about biologicals as if it was a very big deal and not someting to consider as a next step unless absolutely necessary. She is a female reumatologist and I've never experienced anything out of the ordinary because I'm a female with AS. Also, the healthcare system in the Netherlands does not really consider the costs of medicine in the same way as you describe, happens in the UK. I spoke with a specialist on biologicals in the hospital and she said that in the current state of my AS, it would be completely my choice. And because I saw it as a way of being confronted with my AS in a more severe way, I decided against it for now. But your approach makes me reconsider! It is ofcourse about living your life as painfree as possible. But, at the moment, after going through uveitis for the first time I'm now waiting for a diagnosis for inflamation in my large intestine. My gp thinks it could be crohn's or
ulcerative colitis and I have no clue if biologicals are now considered necessary or a fitting option. I'll have to wait and see. Thank you for sharing your story!
Do anyone ever get weakness in legs area or fingers or any weird sensitive feelings.
Ive been hearing a lot that humira helps with AS. But it's so sad that humira isn't covered with national health insurance in Indonesia and it's super expensive
I'm also suffering from as but now I'm cured about 90% without any medicine ☺️
Amazing! How did you do it?
could you share what you did
Could you please share how you cured AS without any medications
Please how did you cure it?
@@getbrite4516 Dont feed the troll
I've just had my diagnosis of AS 3 weeks ago as a 42 year old male, i have been given Etoricoxib for pain but it doesn't touch the sides. The Rheumatologist mentioned that if these don't work which i don't believe they are then i could have injections. Is this what she is speaking of do you think? I would do literally anything to be pain free right now. I tested positive for HLA-B27 after 2 uveitis attacks and a history of back and neck pain which causes constant headaches.
I have had Seronegative RA since 2019, fortunately for me the base level disease modifying drugs have worked very well after initially using prednisone in the early stages. In Australia Biologics cost 18k per injection, the government will only pay for it if Biologics is a last resort.
I have psoriatic arthritis. I was diagnosed in 2008, I started my first biological medication two yeas ago, I take infliximab infusions. Sadly, I haven't had the best outcome, I may have to change to a different one.
Can you do a follow up video please . Its been 3 years since you posted
Hey Dasha, thanks for doing this video. I’m going on Humira tomorrow and was feeling concerned about it but I’m truly relieved to hear your experience was good. I have pretty much the same Health situation as you. Female, in 20s, and also struggled to be taken seriously by drs. It took around 13 years to finally get the diagnosis of AS after the symptoms first started. I get Iritis yearly too. It’s a nightmare! Would be interested to see how you’re getting on now! Really hope you’re doing good. My main issues are fatigue and lower back pain. Have you any tips for managing fatigue? I notice sugar, gluten and almost anything saturated gets me in a haze! I still haven’t quite managed the ‘perfect AS diet’ yet but fingers crossed. Take care and thanks again for making this. Xxx
Hey Nola, hope you're well. Just wondering how did u go Humira, do u mind sharing Ur experience, how did u find it and how long it took humira to kick in? Just starting my humira...
Stay strong...
@@kalqubbaj4853 Hi Kal, thanks for reaching out. I’ve been on Humira for quite a few months now. I have to say, it has been a wonder drug for me. I have not had many flares ups at all. It suppresses your immune system so it is important to take supplements such as vitamin C, D, multivitamin. I haven’t had an increase in coughs/colds but it is important to stay active alongside it if possible. I would suggest injecting in your upper leg rather than stomach, I think it hurts less. Also definitely leave it out of the fridge for 30 minutes and hydrate beforehand. For the first month I would inject before bed as you can feel a bit odd for a few hours in my experience. I would say it takes 4 weeks to start noticing less inflammation. Another tip! Do not inject if you feel poorly in any way. I accidentally injected when I had covid and it took much longer to recover! Final thoughts are that it has truly reduced my coccyx pain immensely however diet is a big part of it too. Eating white carbs and sugar definitely doesn’t help with inflammation so a good diet is a must. Hopefully it works for you also. Don’t be afraid to try it and feel free to keep in touch to let me know how you get on x
Please make an update video about how you feel now
Will do!
Please give us a update.
On how are you are doing
I worry about the parts like if i nick my leg in the shower while shaving, that can get infected, and dont eat blue cheese because you'll get mold in your intestinal tract and oooo so many more warnings 😮😢
Hi Dasha, my mother is being suggested Biologics for an inflammatory arthritis condition in her sacro iliac (lower back) joint. It would be tremendously helpful to know how this treatment has panned out for you and where you are currently with respect to sustained wellness, outcome and opinion regarding Biologics. 🙏🏻🌻
Hi Dasha, any update you are doing better 2 years later? Thanks!
So I was diagnosed with this when I was 8 years old and I was on medication for it but as a teenager my rheumatologist thought I was in remission but this is not a curable disease so I went many years without a lot of pain and didn't seem like I was having issues until like 5 years ago when I would always be in pain completely exhausted week not feeling very well at all and I kind of forgot about the arthritis that I was diagnosed with right so I had to get my medical records from when I was a kid and found out my medical records from my rheumatologist was 225 pages long I finally got into rheumatologist in January I am 34 years old I am taking biologics because I wasn't on anything for a very long time for it and it's caused a lot of damage in my spine and in my hip joints I have some mobility issues where I can barely walk I'm using a walker and Cane to get around I am also not working it has taken a toll on me big time as far as biologics I haven't felt any different yet I started this January 24th and now I am still taking biologic medication giving myself shots every two weeks but so far I haven't noticed any difference I've still been in excruciating pain I'm trying pain management right now as much as I can I am currently actually trying to get medical cannabis because I do not like opioids
Hi Krissy - thank you for sharing your story. Do you think that staying on biologics this whole time would have prevented some of the damage? And it sounds like you need to either give it some more time or perhaps try a different biologic? Are you HLA B27 positive and are your inflammatory markers raised? I'm sure you will get there eventually!
Hi, I have RA am in Canada and on prednisone and Sulfa. What Biologics do I switch to?
Thanks for the content. I just get diagnosed with AS (female, 31) and my doctor the 1st thing that said to me, was, no worries, biologics. Here in Greece the health insurance cover it and I will get it for free. I had no idea, that could be so difficult to get the drug in other countries! Anyway, very helpful your perspective. I'm not very into drugs in general and I was wondering if this therapy will be beneficial.
But what about side effects?
Thanks for sharing, great to hear your symptoms under control, fantastic.
how long it took humira to kick in or to feel its doin something, not asking abt the full effect ? Stay strong, cheers
It’s been a while now…I’m really keen to know where you are at with your condition and how the meds are working?
Be interested to hear if you're still getting great results from Humira, I hope you are. I see that you're not in the habit of replying to people that leave comments, so I'm not counting on a reply. AS is awful for sure, I've been battling for a number of years with no success. I've tried 4 biologics and am now on methotrexate. My symptoms are terrible, a great deal of stiffness and pain mostly. The whole condition is very random: some people get a quick diagnosis, some take years. Some respond to treatment, some don't. Many have side effects, where the strong medication is concerned, some don't. Unfortunately this is a disease that exerts a huge mental toll as well as physical. I imagine it could well be a battle that I wage for the rest of my days.
Thank you
Ma'am does biologics gave you full relief on your pain and stiffness? Or just like NSAID
Come sta andando la cura ?
Hey Dasha, wondering if they worked for you? This was your last video, feels like a cliffhanger 😂. I started them 2 months ago, and seeing improvement but not fully relieved of pain. Wondering how you are feeling 3 years later.
@@kevinwilson6103 haha sorry! They actually did massively help and were amazing for 3 years. But I've had to get off them since as I thought as I had some side effects. But actually still not sure if side effects were in fact related and next steps are TBC!
hi...thank you for your video but I am still sooooo confused about taking biologics...humira is what was prescribed to me but reading the long term effects is scary. Can you shed some light for what you know about long term ?
I'm trying homeopathy at the moment but i'm probably buying time!!!
please let me know because I'll be seeing my rheumatologist in a month and she'll ask me what i've decided:(
thank u
Thank you for sharing your story Gian! It's a difficult choice and seems scary but what I know about the side effects is that very few people actually experience them and the long term side effects are particularly rare! Plus all side effects are reduced if you're only taking the biologics and no other medication. I also know lots of people who have been on biologics for ages and feel great with no side effects, so that was extremely encouraging to me. And if you go on them and experience bad side effects then you can always stop. I reckon the benefits are worth it, so i would give it a try if i was you especially if your pain is currently unmanaged?!
@@dashofthought6959 Dear Dasha, thank you so much for your video. I am very happy to read the comments two I feel very alone in this condition so feedback is really helpful. My question to you is; do you have to keep taking the drug forever? Or can you stop them after some time when the immune system is kind of reset?
Did you try?
Hi Dasha! How are You now? How are things? Still on biologics?
I’m looking to start Humira soon after trying all the Disease Modifying drugs with no real relief for Psoriatic Arthritis. But would be interested in the process of getting them. Consultant has said that it will be a hard process for me, is it not just a case of being prescribed them? What is the process you have to go through? I would be really interested so I know what to expect! I’m in the UK. Thank you!
Hello dear Dash!
Thanks for sharing!, I would like to ask if you evidence any hair loss when taking Biologics. I have been in treatment with MTX and Leflunomide during the last 2 years and I have lost almost 70% of my hair. My doctor and I are thinking in go to Biologic treatment, I am a little bit scared.
Regards,
Laura
No hair loss at all, all good! :)
Methotrexate causes hair loss
Can we get some videos
I am currently on enbrel :)
I wouldn’t bother, I’ve tried every single one and every one makes me sick. I’ve just accepted that I can’t take any of them, and it’ll be a slow decline into disablement.
Don’t give up. Please talk to your doctor. There has to be something you haven’t tried yet.
Thanks for this!!! I'm about to start this journey. Feeling a bit afraid of the side effects! I finally got a diagnosis privately via my work health insurance but now I'm thinking I'll need to go via the NHS for actual treatment as insurance won't cover the costs of take home medication. I'm also due to go back to work soon after maternity leave and wondering how my aches and pains are going to fit in with this if I'm asked to go back to the office, not to mention I'm also breastfeeding with a baby that won't take a bottle. I don't know whether to start the drug whilst breastfeeding either.. (if I get the funding!) Any advice you can give would be appreciated!
Hi! how are you doing these days?🌸
How are you holding up?
My story is similar. I tried strict dieting for so so long it just isnt enough anymore. How are you feeling now? Is the biologic still working for you??
Hi what's the name of the medication your on please?
did you ever have fatigue ??? how did it help
HI! DO YOU TAKE HUMIRA IN ADDITION TO ANOTHER MEDICATION OR IS HUMIRA YOUR ONLY TREATMENT? ❤
Humira only thankfully! :)
how are you now?
Get off it quick. I was on humira trials several years ago, Humira made me sick and depressed and getting off it I had the worst flares of my life for several months. I 99% got rid of my A.S with diet.
A lot of the diet advice out there is bullshit. Carnivore/animal based, organic whole foods no processed foods sugar or chemical additives colour flavor etc. Is the way. You will need to experiment for yourself, even start with nothing but beef(grass fed) and water and add other foods 1 at a time to see what happens.
Nice flat :)
Oh no you need to be on a new diet for 3-6 months just to get it out of your system and then inflammation will come down If it is the right diet for you
Noooo please don't take drugs for AS!!! Two years too late😢
Why not?