Thank you Prof G, this is an interesting topic because some countries mostly use interferons.
Is there an explanation for why some people still have flu-like symptoms after each injection even after several years of taking Rebif? Can taking antipyretics 3 times a week for several years be harmful?
Hello Doctor-, there may be something here (?). Back in the day when I developed MS (early 1990’s), there was nothing but Swank Diet, steroids and “Bee stings”. Then along came Betaseron (1994ish) and we all, in the MS “Men’s Group”, believed we were saved! Then, slowly, interferon variations appeared, then totally different DMTs. A single inconvenient option to save yourself became a crapshoot (seemingly) on how to move forward with no inconveniences whatsoever (and perhaps), some avoidance of the truth.(But, I digress…)
So I was deteriorating, clinically and with X-ray and/or MRI by 1995, and I started Betaseron 1b as it became available. Walking became at times very difficult (got my custom wheelchair), periods of blindness in one eye and then the other, head and body shakes/numbness- making driving, hand writing and other activities difficult. Weak legs and balance issues. Episode or two of unexpected bladder “difficulties” at the wrong time in the wrong place. Doctoral graduation and dream job, [ADA lawsuit]. Trying to find a partner. These were trying times.
Within all this I switched my Doctor to an MS specialist who also advocated quick (within 2 or 3 days) intravenous steroid use in order to reduce disability. So those were my treatments (including Betaseron and Swank) for the next 23 or so years. Last steroid use was 1999. Interferon side effects have always been acceptable in terms of the trade-off (in my mind), which was active MS. A few flu reactions every year easily resolved with ibuprofen, and no significant injection reactions but for one (in 23 years). No enhancing lesions since. No new lesions ID’d via MRI since; OTHER THAN on my spine when I switched to Avonex (a weaker interferon, [I believe] for a year. (I had moved far away, and the change was based on a new doctor’s recommendation that it might help me teaching!?.) I insisted on going back on Betaseron though he thought Novantrone or some other med. was indicated. (So I learned that you have to be your own advocate). Ever since then, again, MRI showing stability. All symptoms very gradually improved from 1995 to 2003, and I arrived at a new “normal”. Subcutaneous shots every two days, no problem! (Within this, in about 2005, a visit with a new doctor, (the previous had seemed to stop caring), allowed for a check of antibodies, which came back +, and he commented that he wasn’t even sure I had MS, given my new MRIs. [his explanation for why I was doing well]). So good-bye to this doctor as well. Next Doc for 10 years was head of Neurology Dept. at a medical teaching university in Philadelphia and his philosophy was “if it’s not broke, don’t fix it”. Somewhere during this period it was impressed upon me that (especially if doing well anyway) antibodies did not rule out a benefit with Betaseron.
I did have a 3 day hospital stay of antibiotics and “watching”, due to infection where I routinely “jabbed” myself in the buttocks with Betaseron.
Moved again. It wasn’t until 3 or 4 years ago, after my leg/foot hurt, that I learned of smoldering and SPMS. It was quite depressing. I switched to Ocrevus, primarily to try and head off anything I could. Covid then came along and was decimating Italy, and while my Doc was on sabbatical, it was up to me to terminate Ocrevus before my 3rd dose. I researched what I could, and I did in March of 2020, not get re-infused. I have since, not been on any DMT. It’s nice not being tied to a routine injection; I had forgot what that was like. Just had an MRI of brain, cervical and thoracic spine. Brain and cervical are (once again) stable, and perhaps something going on at one spot in thoracic spine (which seldom gets MRI’d- so no comparisons). That’s Jan 2022 back to 2018.
This is just a summary! I’m 64 now and believe I’ve avoided the worst of it. There is visible atrophy and I don’t think instantaneously on all things like I once did. Walking OK (no running since 1995), foot problem based on changes from a naturally low foot arch, combined with prior MS gait. (In other words, it was not new MS activity [probably]) causing pain in 2018. What would I have done in the past if in 1995 there were lots of treatment options? I don’t know. Try to pick the “right one”, I suppose. As it stands, back then I had no choice and “went with it”. Worked out OK. Everything does not work like new now. I may not make it to 80, or if I do, it won’t be without issues (like a fully functioning bladder like a young man). But really, at this point, who cares?! I’m happy with the outcome so far.
If I had to do it all over again, I would probably try reconstitution therapy.
One question after all this, however. Is there any evidence or discussion that acquired kidney cysts without a family history can be the result of Betaseron or Ocrevus? I haven’t found anything.
Thank you Dr. Giovanni. You briefly mentioned EBV in today's note. What do you think of the application of Thymosin Alpha One and Thymosin Beta Four for managing EBV?
Since MS seems like such a "holistic" type condition, would a holistic, lifestyle medicine approach be the most effective means of managing it? My story is diagnosed with aggressive RRMS 4.5 years ago in the States, put on Tysaberi and stayed on it for 6 months. Then I stopped it. From there on I follow OMS. No relapses thank God but two recent pseudo-relapses due to viruses (one Covid). In August last year I felt really crappy. I hired a functional medicine practice and through blood work they identified elevated EBV antibody levels. Theymosin was prescribed and I have felt so much better. Also working on my microbiome health. Your Smouldering Theory makes so much sense to me! Thank you, sir.
Hi Prof G and thanks so much for this information. I always appreciate your posts but especially this one. I am 67 and been on Ocrevus since 2018. Diagnosed 10 years ago. Started off with Gilenya for 18 months until breast cancer showed up. After BC treatment I used IVIG, Tysabri and now Ocrevus. Because I didn’t get a response after three vaccines, I skipped the next infusion due to delta and omicron. My MS specialist decided I should bridge over to Plegridy which I start next week. I was also lucky to get Evusheld (emergency use authorization by the FDA) when it was available in my area. I don’t know if I’ll go back to Ocrevus. At my age, so many things to consider.
Thank you Prof G, this is an interesting topic because some countries mostly use interferons.
Is there an explanation for why some people still have flu-like symptoms after each injection even after several years of taking Rebif? Can taking antipyretics 3 times a week for several years be harmful?
i.e. pwMS doing well on IFN-beta (why change if you are doing well?).....doesn't this conflict with your general approach?
Hello Doctor-, there may be something here (?). Back in the day when I developed MS (early 1990’s), there was nothing but Swank Diet, steroids and “Bee stings”. Then along came Betaseron (1994ish) and we all, in the MS “Men’s Group”, believed we were saved! Then, slowly, interferon variations appeared, then totally different DMTs. A single inconvenient option to save yourself became a crapshoot (seemingly) on how to move forward with no inconveniences whatsoever (and perhaps), some avoidance of the truth.(But, I digress…)
So I was deteriorating, clinically and with X-ray and/or MRI by 1995, and I started Betaseron 1b as it became available. Walking became at times very difficult (got my custom wheelchair), periods of blindness in one eye and then the other, head and body shakes/numbness- making driving, hand writing and other activities difficult. Weak legs and balance issues. Episode or two of unexpected bladder “difficulties” at the wrong time in the wrong place. Doctoral graduation and dream job, [ADA lawsuit]. Trying to find a partner. These were trying times.
Within all this I switched my Doctor to an MS specialist who also advocated quick (within 2 or 3 days) intravenous steroid use in order to reduce disability. So those were my treatments (including Betaseron and Swank) for the next 23 or so years. Last steroid use was 1999. Interferon side effects have always been acceptable in terms of the trade-off (in my mind), which was active MS. A few flu reactions every year easily resolved with ibuprofen, and no significant injection reactions but for one (in 23 years). No enhancing lesions since. No new lesions ID’d via MRI since; OTHER THAN on my spine when I switched to Avonex (a weaker interferon, [I believe] for a year. (I had moved far away, and the change was based on a new doctor’s recommendation that it might help me teaching!?.) I insisted on going back on Betaseron though he thought Novantrone or some other med. was indicated. (So I learned that you have to be your own advocate). Ever since then, again, MRI showing stability. All symptoms very gradually improved from 1995 to 2003, and I arrived at a new “normal”. Subcutaneous shots every two days, no problem! (Within this, in about 2005, a visit with a new doctor, (the previous had seemed to stop caring), allowed for a check of antibodies, which came back +, and he commented that he wasn’t even sure I had MS, given my new MRIs. [his explanation for why I was doing well]). So good-bye to this doctor as well. Next Doc for 10 years was head of Neurology Dept. at a medical teaching university in Philadelphia and his philosophy was “if it’s not broke, don’t fix it”. Somewhere during this period it was impressed upon me that (especially if doing well anyway) antibodies did not rule out a benefit with Betaseron.
I did have a 3 day hospital stay of antibiotics and “watching”, due to infection where I routinely “jabbed” myself in the buttocks with Betaseron.
Moved again. It wasn’t until 3 or 4 years ago, after my leg/foot hurt, that I learned of smoldering and SPMS. It was quite depressing. I switched to Ocrevus, primarily to try and head off anything I could. Covid then came along and was decimating Italy, and while my Doc was on sabbatical, it was up to me to terminate Ocrevus before my 3rd dose. I researched what I could, and I did in March of 2020, not get re-infused. I have since, not been on any DMT. It’s nice not being tied to a routine injection; I had forgot what that was like. Just had an MRI of brain, cervical and thoracic spine. Brain and cervical are (once again) stable, and perhaps something going on at one spot in thoracic spine (which seldom gets MRI’d- so no comparisons). That’s Jan 2022 back to 2018.
This is just a summary! I’m 64 now and believe I’ve avoided the worst of it. There is visible atrophy and I don’t think instantaneously on all things like I once did. Walking OK (no running since 1995), foot problem based on changes from a naturally low foot arch, combined with prior MS gait. (In other words, it was not new MS activity [probably]) causing pain in 2018. What would I have done in the past if in 1995 there were lots of treatment options? I don’t know. Try to pick the “right one”, I suppose. As it stands, back then I had no choice and “went with it”. Worked out OK. Everything does not work like new now. I may not make it to 80, or if I do, it won’t be without issues (like a fully functioning bladder like a young man). But really, at this point, who cares?! I’m happy with the outcome so far.
If I had to do it all over again, I would probably try reconstitution therapy.
One question after all this, however. Is there any evidence or discussion that acquired kidney cysts without a family history can be the result of Betaseron or Ocrevus? I haven’t found anything.
And thanks for everything Dr. G.
Tom
Thank you Dr. Giovanni. You briefly mentioned EBV in today's note. What do you think of the application of Thymosin Alpha One and Thymosin Beta Four for managing EBV?
Since MS seems like such a "holistic" type condition, would a holistic, lifestyle medicine approach be the most effective means of managing it? My story is diagnosed with aggressive RRMS 4.5 years ago in the States, put on Tysaberi and stayed on it for 6 months. Then I stopped it. From there on I follow OMS. No relapses thank God but two recent pseudo-relapses due to viruses (one Covid). In August last year I felt really crappy. I hired a functional medicine practice and through blood work they identified elevated EBV antibody levels. Theymosin was prescribed and I have felt so much better. Also working on my microbiome health. Your Smouldering Theory makes so much sense to me! Thank you, sir.
Hi Prof G and thanks so much for this information. I always appreciate your posts but especially this one. I am 67 and been on Ocrevus since 2018. Diagnosed 10 years ago. Started off with Gilenya for 18 months until breast cancer showed up. After BC treatment I used IVIG, Tysabri and now Ocrevus. Because I didn’t get a response after three vaccines, I skipped the next infusion due to delta and omicron. My MS specialist decided I should bridge over to Plegridy which I start next week. I was also lucky to get Evusheld (emergency use authorization by the FDA) when it was available in my area. I don’t know if I’ll go back to Ocrevus. At my age, so many things to consider.
Do Avonex and Plegridy have low NABs because dose is low and only once a week/fortnight? Versus say Rebif 44, high dose, high frequency.
Since when was beta interferon deemed safe in pregnancy? Always wonder who first makes these decisions and on what evidence.
Wonder how many people have managed to stay on Rebif when SPMS? Always thought it was weird you could remain on it, yet can't start new when SPMS.