I had 1000 mg of Solumedrol for five days with a taper dose of Prednisone when I was discharged. I anticipated having sleeplessness, mood changes, and hunger. I literally felt no different when I was on the medication. I slept a lot, and prayed that my right hand would start functioning properly again. I recovered after a little over a month. In my mind, the steroids were worth it.
Living in a resource limited country. This affects overall medical practice. In the following text I am not going to discuss about the treatment of relapses. One of the Neurologist (with whom I did my Neurology rotation), once gave me option of pulsed steroid therapy option. This was when two or three years had passed since my diagnosis. As far as I can recall, it was one gram or 500mg IV solumedrol three monthly. Other Neurologist who is retired professor of neurology discussed with me option of ocrevus and second option he gave me was of azathioprine. Both professors are experienced and clinically very competent. I understand that experience is down the list when we talk about evidence based medicine.
Pulse corticosteriods are an old-school treatment of MS which was popular before the widespread availability of disease modifying therapies. In my opinion, it has no proven long-term benefit and does carry significant risks. I will make a comment about this in a video next Wednesday.
I have had 2 separate rounds of oral prednisone early on in my ms (early 90's) when I was in RRMS. Both were successful in helping my relapse. Side effects were: hunger, weight gain, and insomnia.
I've only ever been on IV steroids, always reacted terribly to them (constipation and horrible acne breakouts), but they did help for the most part; except for last year when they barely helped and my hand was left permanently numb after that particular relapse.
Topics for a future podcast: prevalence of medical bias to attribute non MS symptoms on MS. I'm a 68 yo male with MS for over 35 years. I have SPMS and use a motorized WC. In my case, I passed out three times after eating dinner within a couple of years. I also had intermittent light headedness and vision impairment after eating dinner for three years. My symptoms were attributed to MS dysautonomia by several doctors. Luckily, I was subsequently advised to consult a cardiologist. Subsequent to testing I was diagnosed with severely occluded right and left carotid arteries, coronary artery disease and a moderate to severe narrowing of my aortic valve. My diet was good. My condition was genetically based exacerbated by being non ambulatory. Second question: I had several non invasive surgeries within two months to correct conditions with one more procedure to go. I was awake during all procedures but the surgeries have taken a toll on my MS. I am not back to my baseline of functioning. I am grateful for these conditions to be discovered and corrected. But my slow recovery to baseline is upsetting and scary. How common is it for PWMS to have slow recovery times after majory surgery ?
A very interesting video idea! I feel like because MS symptoms are so widespread, anything can be MS. It's a fight to have your vague symptoms be correctly diagnosed as MS, and once you're diagnosed, it's hard to get new symptoms NOT attributed to MS
When steroids caused my diabetes, it wasn’t short term and never resolved. Having to take steroids for exacerbations makes the diabetes extremely difficult to control. Oral steroids induce psychosis now. So, it always has to be delivered by IV, which does mess with my emotions and thinking but not to that level.
I took 1250mg oral prednisone for 3 days to kick my irregular severe relapse in the butt. It was miraculous. Thank you MS doctors, clinicians, scientists. And thank you Dr. Beaber for these videos.
Thank you for this. When this first started, I was given IV steroids over 5 days... it really helped. I was then on Rebif injection for several years. I had another relapse with vision issues, then regimen steroids. But I was told that going forward even in bad relapses the chances of being given more steroids were slim.
Thank you for this podcast. Years ago, I was prescribed monthly intravenous steroid infusions in between switching over to a different DMT (Rituxamab). I developed osteoporosis and osteopenia in hips.
I had metho steroids once and they made me horribly depressed to the point I considered unaliving myself. I therefore refuse them unless it’s considered such a serious relapse that the gains would seriously outweigh the risk of harm. Fortunately I realised it was the steroids and with the support of close friends I got through.
I’ve had both IV solumedrol x3-5 days for a few relapses over my 29 years with Ms. The oral taper prednisone a couple- for ON. Both helped, The oral taper took longer to recover from my relapse. But then I don’t know if it was just a bad relapse. The side effects are consistent though with the ones you mentioned great video doc sharing is caring.
I was Dx with RRMS in Oct of 2005 at the age of 40. In my early years it seemed that I had attacks about annually that were treated with 3-5 days of IV steroids delivered via in home infusions so they didn't even disrupt my day. Within hours my symptoms were basically resolved. By 7 yrs in I stopped having MRI changes and/or attacks. I also transitioned to SPMS at this point and also realized that I started into peri-menopause as well. I thought steroids were magical but am now wondering if they contributed to issues with my hip over time. I had an uneven gait for some time and have other issues on my right side like a accessory navicular bone. I ended up needing a hip replacement and that did not go well. I still have considerable pain from weight bearing on that side- like avascular necrosis
“Corticosteroids influence the short term effects of acute inflammation, but do not change the outcome in the long term.” Does this imply that acute inflammation is not the cause of long term disability accumulation at all?
I have progesterone hypersensitivity and I was recently prescribed a low dose methylprednisolone pack for a sinus infection. I'm in surgical menopause due to my progesterone hypersensitivity was activating and progressing my MS. Well, my MS symptoms were returning with the short course of steroids along with my progesterone hypersensitivity symptoms. Symptoms resolved as the steroids wore off. Not sure if I'm sensitive to the steroids themselves as I'm sensitive to both progesterone and estrogen or if the use of the steroids increased the release of progesterone/estrogen causing my reaction/symptoms.
A question I've had is do steroids shorten the attack or just help in recovery? If just hastens recovery then I wouldn't take. Since they suppress inflamation and If I understand right, inflamation is the attack and not a side affect, I would think they could help in ending the attack.
I had methyl prednisone by IV once in a hospital infusion room. I immediately became unconscious with twitching. Very scary for me and doctor so they’ll never be administered to me again
I usually handle meds very well but I got 1gr IV for 5 days, followed by 2gr IV for 5 days and then phase out over 2 weeks and it did nothing. If anything, my ON got worse afterwards and had to have plasmapheresis. Not sure if my ON relapse was that aggressive or if my body just does not care about steroids. It certainly unsettles me thinking about future relapses. But my MS neurologists say "new relapse, new shot", so we will see. So far, for my body, I'm not convinced.
If I have to take a steroid due to allergic reaction to contrast, should I still take it prior to my MRIs? MS is a possibility, but I’m not yet diagnosed
I took 2000mg of solumedrol for about a month then tried to taper off with the prednisone, but every time i got to low on the prednisone I had a relapse ,so I stayed on prednisone for about 10 years until they put me on beraseron.
Thanks for this info Dr Beaber. The only times I’ve received steroids are IV solumedrol before my ocrevus. My MRI at diagnosis did not have any gad enhancing lesions so I was fortunate enough to avoid steroids before and after diagnosis (so far). I now ask my infusion nurse to start with the IV Benadryl before solumedrol because I find it’s easier to tolerate the ramp up I get from the steroids that way. My nurse equates it to an IV vodka Red Bull. The combo does make me feel lethargic for a day or so after as well and I wish I could avoid that part of infusion day.
First time Solumedrol worked as a charm (improved my walking - I got only spinal cord damage and a couple spots in brains, but no damage to eyesight or any functionality above my neck)). Second... meh, it did work, but it was not the same. I got that typical swelling, which was a weird experience - felt like walking in rubber boots filled with water. My ancles started to look like those of obese people, but swelling did mostly go away in a couple weeks, while higher blood pressure stayed for a while after that.
I was diagnosed with RRMS in 2013 with over 30 brains lesions but my neurologist (who is an MS specialist like you and Dr. Boster) has never once given me or suggested steroids in all these years. I'm not sure what his reasoning was/is, but I'm not exactly mad about it.
@@DrBrandonBeaber I had 2 pretty significant ones. One in late 2013/early 2014 (vertigo, could not drive) and the other in 2015 (limp hand and shooting pain in ear, could not type at work). The vertigo completely improved on its own never to return, the hand is still 50% numb to this day. The shooting/stabbing ear pain (which I originally thought might be an ear infection but wasn't, is completely gone as well.
1G/day of IV steroids were like magic for me during a relapse. Within hours I felt better and the nasty symptom was resolved. I thought it was great but now question if it was worth some of the possible side effects. AVN is the largest concern as now, about 20 years in with MS and many courses of treatment over the years, I have issues with my hips. It progressed to the point I needed a hip replacement. Reviewing my charts they say it was not caused by AVN but I wonder if overall I have reduced blood flow to my hips. Can this cause issues with replacement recovery? my hips and buttocks are often cold- do they just not receive enough blood flow? could this be caused by steroid use over time? or is the bone damage to the femoral head the only impact of reduced blood flow to the area?
Hi Brandon, I have had MS for nine years and have experienced two relapses. Both times, I was given intramuscular dexamethasone. Unfortunately I don't remember the dose/frequency. Is this something common? Why isn't it used more frequently?
This isn't common in the united states, but certainly dexamethasone is a corticosteroid which can be used to treat multiple sclerosis relapses. What country are you in?
You can buy the paperback on other websites if you search it. I think you can also get the ebook for free on kobo here: www.kobo.com/gb/en/ebook/resilience-in-the-face-of-multiple-sclerosis?srsltid=AfmBOooa_kSzOjpV_geVPEjJaLPuQpCn1ckVO1ay3eRKdJDZuVJ7khs-
I was so grateful that 1000mg IV/ 5 day course relieved symptoms almost immediately. I thought it was a miracle. For side effects, I thought there was a funny metallic taste as well. I did not sleep for weeks and was cleaning nonstop.
Immunosuppressants make infections worse typical, but MS is not caused by an active infection (there is some evidence for association with EBV and how it modulates the immune system)
Why not use nutritional anti inflammatory agents instead of depressing immune system? Niacin-mediated rejuvenation of macrophage/microglia enhances remyelination of the aging central nervous system, 2020
Thanks, though I did not see any mention of niacin. The authors conclude "Niacin represents a safe and translationally amenable regenerative therapy for chronic demyelinating diseases such as multiple sclerosis."
My neurologist will only prescribe Solumedrol if Optic Neuritis is part of the relapse. Which I am okay with, because steroids in my experience caused horrible stomach issues.
@@DrBrandonBeaber oh maybe in that sort of situation... I've never experienced more than sensory symptoms & ON. I think it was more a case of them allowing a relapse to resolve naturally for less severe symptoms, versus the old thought of turning to steroids immediately for any sort of relapse.
I know that its not the topic of your post Dr Brandon, but what medication would you recommend for neuropathic pain/burning sensation? My neurologyst gave me 3 options to choose from (pregabalin, duloxetine and amytriptiline), but i have no clue nor should it be me to make that decision. Thank you for your help 🙏
I had 1000 mg of Solumedrol for five days with a taper dose of Prednisone when I was discharged. I anticipated having sleeplessness, mood changes, and hunger. I literally felt no different when I was on the medication. I slept a lot, and prayed that my right hand would start functioning properly again. I recovered after a little over a month. In my mind, the steroids were worth it.
Glad to hear your right had improved. Many people would agree it's worth the side effects if they speed recovery.
Wednesday morning coffee with Dr. Beaber. Another really informative video. Thanks!
Thanks Vickie. Hopefully this is information you will never need again.
Living in a resource limited country. This affects overall medical practice. In the following text I am not going to discuss about the treatment of relapses. One of the Neurologist (with whom I did my Neurology rotation), once gave me option of pulsed steroid therapy option. This was when two or three years had passed since my diagnosis. As far as I can recall, it was one gram or 500mg IV solumedrol three monthly. Other Neurologist who is retired professor of neurology discussed with me option of ocrevus and second option he gave me was of azathioprine. Both professors are experienced and clinically very competent. I understand that experience is down the list when we talk about evidence based medicine.
Pulse corticosteriods are an old-school treatment of MS which was popular before the widespread availability of disease modifying therapies. In my opinion, it has no proven long-term benefit and does carry significant risks. I will make a comment about this in a video next Wednesday.
I have had 2 separate rounds of oral prednisone early on in my ms (early 90's) when I was in RRMS. Both were successful in helping my relapse. Side effects were: hunger, weight gain, and insomnia.
I've only ever been on IV steroids, always reacted terribly to them (constipation and horrible acne breakouts), but they did help for the most part; except for last year when they barely helped and my hand was left permanently numb after that particular relapse.
Topics for a future podcast: prevalence of medical bias to attribute non MS symptoms on MS. I'm a 68 yo male with MS for over 35 years. I have SPMS and use a motorized WC. In my case, I passed out three times after eating dinner within a couple of years. I also had intermittent light headedness and vision impairment after eating dinner for three years. My symptoms were attributed to MS dysautonomia by several doctors. Luckily, I was subsequently advised to consult a cardiologist. Subsequent to testing I was diagnosed with severely occluded right and left carotid arteries, coronary artery disease and a moderate to severe narrowing of my aortic valve. My diet was good. My condition was genetically based exacerbated by being non ambulatory. Second question: I had several non invasive surgeries within two months to correct conditions with one more procedure to go. I was awake during all procedures but the surgeries have taken a toll on my MS. I am not back to my baseline of functioning.
I am grateful for these conditions to be discovered and corrected. But my slow recovery to baseline is upsetting and scary. How common is it for PWMS to have slow recovery times after majory surgery ?
A very interesting video idea! I feel like because MS symptoms are so widespread, anything can be MS. It's a fight to have your vague symptoms be correctly diagnosed as MS, and once you're diagnosed, it's hard to get new symptoms NOT attributed to MS
When steroids caused my diabetes, it wasn’t short term and never resolved. Having to take steroids for exacerbations makes the diabetes extremely difficult to control.
Oral steroids induce psychosis now. So, it always has to be delivered by IV, which does mess with my emotions and thinking but not to that level.
I took 1250mg oral prednisone for 3 days to kick my irregular severe relapse in the butt. It was miraculous. Thank you MS doctors, clinicians, scientists. And thank you Dr. Beaber for these videos.
Thank you for this.
When this first started, I was given IV steroids over 5 days... it really helped. I was then on Rebif injection for several years. I had another relapse with vision issues, then regimen steroids. But I was told that going forward even in bad relapses the chances of being given more steroids were slim.
Thank you for this podcast.
Years ago, I was prescribed monthly intravenous steroid infusions in between switching over to a different DMT (Rituxamab).
I developed osteoporosis and osteopenia in hips.
I had metho steroids once and they made me horribly depressed to the point I considered unaliving myself. I therefore refuse them unless it’s considered such a serious relapse that the gains would seriously outweigh the risk of harm. Fortunately I realised it was the steroids and with the support of close friends I got through.
I’ve had both IV solumedrol x3-5 days for a few relapses over my 29 years with Ms.
The oral taper prednisone a couple- for ON.
Both helped,
The oral taper took longer to recover from my relapse. But then I don’t know if it was just a bad relapse. The side effects are consistent though with the ones you mentioned great video doc sharing is caring.
I was on oral prednisone for 5 years (max 60mg/day) for temporal arthritis and it helped all my MS symptoms.
What it does ?
For 5 straight years? You were never offered any other treatment for temporal arteritis to help you wean off the steroids?
@@DrBrandonBeaberI have recently diagnosed with MS , I took Rebif about 1 month from now
@@DrBrandonBeaberMethotrexate and Leflunomide, but they were not as strong as prednisone.
Please do a video on AVN and when someone with MS and hip pain should be checked. Can a neurologist order hip MRIs when patients complain of hip pain?
I was Dx with RRMS in Oct of 2005 at the age of 40. In my early years it seemed that I had attacks about annually that were treated with 3-5 days of IV steroids delivered via in home infusions so they didn't even disrupt my day. Within hours my symptoms were basically resolved. By 7 yrs in I stopped having MRI changes and/or attacks. I also transitioned to SPMS at this point and also realized that I started into peri-menopause as well. I thought steroids were magical but am now wondering if they contributed to issues with my hip over time. I had an uneven gait for some time and have other issues on my right side like a accessory navicular bone. I ended up needing a hip replacement and that did not go well. I still have considerable pain from weight bearing on that side- like avascular necrosis
Thank you Dr Beaber, this was very informative! Looking at all this I wonder…. Would you take steroids for a relapse?
If I had significant neurological symptoms and did not have another medical contraindication to receiving them, yes.
Thanks for answering my question. I would too, I think. Hopefully it won’t be necessary….
“Corticosteroids influence the short term effects of acute inflammation, but do not change the outcome in the long term.” Does this imply that acute inflammation is not the cause of long term disability accumulation at all?
I have progesterone hypersensitivity and I was recently prescribed a low dose methylprednisolone pack for a sinus infection. I'm in surgical menopause due to my progesterone hypersensitivity was activating and progressing my MS. Well, my MS symptoms were returning with the short course of steroids along with my progesterone hypersensitivity symptoms. Symptoms resolved as the steroids wore off.
Not sure if I'm sensitive to the steroids themselves as I'm sensitive to both progesterone and estrogen or if the use of the steroids increased the release of progesterone/estrogen causing my reaction/symptoms.
A question I've had is do steroids shorten the attack or just help in recovery? If just hastens recovery then I wouldn't take. Since they suppress inflamation and If I understand right, inflamation is the attack and not a side affect, I would think they could help in ending the attack.
I had methyl prednisone by IV once in a hospital infusion room. I immediately became unconscious with twitching. Very scary for me and doctor so they’ll never be administered to me again
I usually handle meds very well but I got 1gr IV for 5 days, followed by 2gr IV for 5 days and then phase out over 2 weeks and it did nothing. If anything, my ON got worse afterwards and had to have plasmapheresis. Not sure if my ON relapse was that aggressive or if my body just does not care about steroids. It certainly unsettles me thinking about future relapses. But my MS neurologists say "new relapse, new shot", so we will see. So far, for my body, I'm not convinced.
If I have to take a steroid due to allergic reaction to contrast, should I still take it prior to my MRIs? MS is a possibility, but I’m not yet diagnosed
I took 2000mg of solumedrol for about a month then tried to taper off with the prednisone, but every time i got to low on the prednisone I had a relapse ,so I stayed on prednisone for about 10 years until they put me on beraseron.
Thanks for this info Dr Beaber. The only times I’ve received steroids are IV solumedrol before my ocrevus. My MRI at diagnosis did not have any gad enhancing lesions so I was fortunate enough to avoid steroids before and after diagnosis (so far). I now ask my infusion nurse to start with the IV Benadryl before solumedrol because I find it’s easier to tolerate the ramp up I get from the steroids that way. My nurse equates it to an IV vodka Red Bull. The combo does make me feel lethargic for a day or so after as well and I wish I could avoid that part of infusion day.
haha. I like the vodka + red bull comparison.
First time Solumedrol worked as a charm (improved my walking - I got only spinal cord damage and a couple spots in brains, but no damage to eyesight or any functionality above my neck)). Second... meh, it did work, but it was not the same.
I got that typical swelling, which was a weird experience - felt like walking in rubber boots filled with water. My ancles started to look like those of obese people, but swelling did mostly go away in a couple weeks, while higher blood pressure stayed for a while after that.
My neurologist prescribed me 4 infusions but I had only the first one. Side effects were horrible, caused severe headaches and insomnia.
I was diagnosed with RRMS in 2013 with over 30 brains lesions but my neurologist (who is an MS specialist like you and Dr. Boster) has never once given me or suggested steroids in all these years. I'm not sure what his reasoning was/is, but I'm not exactly mad about it.
Have you had relapses with significant symptoms or have you been stable?
@@DrBrandonBeaber I had 2 pretty significant ones. One in late 2013/early 2014 (vertigo, could not drive) and the other in 2015 (limp hand and shooting pain in ear, could not type at work). The vertigo completely improved on its own never to return, the hand is still 50% numb to this day. The shooting/stabbing ear pain (which I originally thought might be an ear infection but wasn't, is completely gone as well.
what is colleration b/n gastritis and walking difficety in rrms
To my knowledge, gastritis (which has many causes) is not specifically associated with MS.
@@DrBrandonBeaber ok dr thank u
1G/day of IV steroids were like magic for me during a relapse. Within hours I felt better and the nasty symptom was resolved. I thought it was great but now question if it was worth some of the possible side effects. AVN is the largest concern as now, about 20 years in with MS and many courses of treatment over the years, I have issues with my hips. It progressed to the point I needed a hip replacement. Reviewing my charts they say it was not caused by AVN but I wonder if overall I have reduced blood flow to my hips. Can this cause issues with replacement recovery? my hips and buttocks are often cold- do they just not receive enough blood flow? could this be caused by steroid use over time? or is the bone damage to the femoral head the only impact of reduced blood flow to the area?
avascular necrosis of the hip is usually acute, but chronic steroid use can cause other problems. I can't comment on your specific situation.
Hi from Israel thanks for this interesting video
Hi Brandon,
I have had MS for nine years and have experienced two relapses. Both times, I was given intramuscular dexamethasone. Unfortunately I don't remember the dose/frequency. Is this something common? Why isn't it used more frequently?
This isn't common in the united states, but certainly dexamethasone is a corticosteroid which can be used to treat multiple sclerosis relapses. What country are you in?
@@DrBrandonBeaber Thanks Brandon. Right now I'm in the US but I had these two relapses back when I was in Iran.
I would love to read your book. Is there a way to get your ebook if you are not an Amazon-customer (I am in Europe) / don’t have a kindle?
You can buy the paperback on other websites if you search it. I think you can also get the ebook for free on kobo here: www.kobo.com/gb/en/ebook/resilience-in-the-face-of-multiple-sclerosis?srsltid=AfmBOooa_kSzOjpV_geVPEjJaLPuQpCn1ckVO1ay3eRKdJDZuVJ7khs-
Thank you, it worked!
I was so grateful that 1000mg IV/ 5 day course relieved symptoms almost immediately. I thought it was a miracle. For side effects, I thought there was a funny metallic taste as well. I did not sleep for weeks and was cleaning nonstop.
Didnt know their were different types of steroids.
Scary
Why do they give a low dose of steroids prior to ocrevus infusions????
To prevent infusion reactions.
Question is whether immunosuppressants are useful for treating infection (which is the cause of MS), or if they just make the infection worse
Immunosuppressants make infections worse typical, but MS is not caused by an active infection (there is some evidence for association with EBV and how it modulates the immune system)
Why not use nutritional anti inflammatory agents instead of depressing immune system?
Niacin-mediated rejuvenation of macrophage/microglia enhances remyelination of the aging central nervous system, 2020
Here is a 29-video playlist on nutrition and MS if you are interested: th-cam.com/video/Cey5muWJBs0/w-d-xo.html
Thanks, though I did not see any mention of niacin. The authors conclude "Niacin represents a safe and translationally amenable regenerative therapy for chronic demyelinating diseases such as multiple sclerosis."
My neurologist will only prescribe Solumedrol if Optic Neuritis is part of the relapse. Which I am okay with, because steroids in my experience caused horrible stomach issues.
So they would not prescribe steroids to treat transverse myelitis causing severe weakness of the limbs?
@@DrBrandonBeaber oh maybe in that sort of situation... I've never experienced more than sensory symptoms & ON. I think it was more a case of them allowing a relapse to resolve naturally for less severe symptoms, versus the old thought of turning to steroids immediately for any sort of relapse.
I know that its not the topic of your post Dr Brandon, but what medication would you recommend for neuropathic pain/burning sensation? My neurologyst gave me 3 options to choose from (pregabalin, duloxetine and amytriptiline), but i have no clue nor should it be me to make that decision. Thank you for your help 🙏
They are horrible all around!
What side effects did you experience?
@@DrBrandonBeaber Psychosis. Horrible Psychosis.
I could not sleep and rest. High blood pressure and heart racing. I’d avoid the IV if possible
@@nkjoep Agreed