ed-tobias
Forum Replies Created
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Vickilou –
A quick Google search turned up this information.
https://www.ncbi.nlm.nih.gov/books/NBK44793/
Note, however, that the studies are about ten years old. I hope it’s useful.
Ed
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Alex,
I was on Tysabri for several years and never experienced such symptoms. From my viewpoint as a patient, not a doctor, they could be almost anything, including a simple exacerbation of your MS. It’s important, however, that you contact your doctor to ask your question. Don’t depend on getting a medical opinion here, or from any website.
Ed
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I’m glad that they’re going to review siponimod and I hope they find the medication is useful for SPMS. People with Secondary Progressive need more treatments that are approved to treat them.
Ed
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It’s hard to say, because there’s no way to know to what point my MS may have progressed had I not been treated with DMTs. However, at 38 years post-diagnosis I have to believe that my symptoms have progressed as slowly as they have due to the treatments. And…..I think that Lemtrada has actually improved some symptoms slightly!
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There are really three: spasticity, fatigue and bladder control. There are treatments for each of those but no “magic pill.” But, rather than hiding from the storm I’ve learned to dance in the rain.
Ed
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I used Ampyra and found that it improved my walking speed. However, it’s benefit didn’t outweigh the large co-pay. So, I’m hoping that the cost of the generic will bring the co-pay to a reasonable amount so that I can return to it.
Ed
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Is it just a coincidence that these are the older DMTs, e.g. Avonex and Copaxone? This study could be used by NICE, in the UK, to justify its position that Ocrevus shouldn’t be available in the National Health Service because they don’t consider it to be cost-effective.
Ed
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Hi Jackie,
That’s very interesting. Just coincidentally, I found this article today about the NHS and hospital care in specific locations. It’s long, but you might also find it interesting.
Ed
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Hi Susan,
I appreciate your suggestion, but I’d modify it just a bit. Rather than simply reading the side-effects, I’d suggest discussing those side-effects with the neurologist who prescribed the medication.
I’m surprised, however, that someone was prescribed a statin to treat MS. There is, of course, this clinical trial and I understand there was at least one earlier trial. But trials, only.
I’ve taken atorvastatin (the generic for Lipitor) for years to keep my cholesterol in check. However, I’m not aware of any statin medication that’s actually being prescribed to ease MS symptoms.
Ed
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I’ve taken 5,000 units a day for years. I have no idea whether it makes me feel any better but my bloodwork shows my D levels are good.
Ed
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Hi Natasha,
I’m another moderator and I’d also like to welcome you here.
I was diagnosed in 1980 and have been on several disease-modifying treatments over the years. Aubagio was one of them. It kept my progression in check and, like you, I think I felt somewhat better while I was using it. I changed from it to Lemtrada about 18 months ago.
Mavenclad isn’t approved for use in the U.S. so I have no experience with it. However, I’ve read several items on line that indicate that it’s beneficial. I’d suggest that you search for “Mavenclad” on the main MS News Today web site. (You should be able to get to it by clicking the “Home” tab at the top of the Forums page). Your search should lead you to a few articles.
Good luck,
Ed
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I don’t understand what happened here.
Initially, NICE rejected Ocrevus, saying it wasn’t cost-effective. But then, last June after complaints from a large number of patients and medical professionals and a price concession by Genentech, NICE reversed its decision and gave tentative approval.
What’s changed since June?
Ocrevus is approved in the US and the EU to treat PPMS and it appears to be effective, at least in some cases. It’s one of the few hopes that PPMS patients have for limiting their disease progression.
Ocrevus should not be removed from the medical arsenal that can be used to fight PPMS in England and Wales, (the areas covered by NICE).
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Debi –
Lemtrada is a monoclonal antibody and is given as a series of infusions. The medication attacks specific “rogue” B and T cells in the immune system that are believed to be the ones that are responsible for attacking our myelin. After they’re killed the body produces new B and T cells and, hopefully, these new cells are normal, i.e. they don’t act like the “rogue” cells. The treatment is carried out over two years (normally) and it may take several years for the new cells to replace the old.
I’ve written several columns about this. My most recent is here: https://multiplesclerosisnewstoday.com/2018/07/17/ms-lemtrada-journey-roller-coaster/
Ed
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Hi Alicia,
Welcome to the forums.
Yes, there are some very good scooters and electric wheelchairs available. But I’ve used a scooter for about 15 years and I know that no scooter is perfect. My recent MS Wire column was about a couple who is trying to design that perfect scooter, and they’re asking for input from scooter users. It’ll be very interesting to see what they come up with.
Ed
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Hi Cynthia,
Welcome to the forums.
I was also on Tysabri and am JCV+. However, I was able to continue on it longer by switching to an infusion every other month. Eventually, however, I switched to Aubagio and then to Lemtrada. My neuro feels the benefit/risk ratio is better for it than for Ocrevus.
I’ve read of some excellent results with Ocrevus and I hope that will be the case for you. PT is also important, no matter what DMT you’re on. I know it’s helped me a lot. (Disclosure: I’m married to a retired PT)!
Ed
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I’m very sorry to hear that, Jackie. I guess complaints about poorly coordinated care don’t seem as troubling when your problem is a lack of care.
Is that a pervasive problem throughout the NHS system for all medical issues?
Ed
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Jackie,
I’ll just keep taking it. It’s inexpensive and easy to take once a day.
Ed
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Glad to hear you’re hangin’ in there, Jen.
Fatigue has always been a problem for me, too, and modafinil (Provigil) has helped. So has exercise. In the summer I try to swim a few times a week and in cooler weather I do some upper body exercises using machines in our condo’s exercise room. It can be tough to motivate myself to get it done but I’m glad when I do and I know that I feel better, physically and mentally.
Anyway, don’t be a stranger in the forums. Holler anytime, whether it’s to share something good or to vent about something bad.
Ed
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Hi Jen,
We haven’t heard from you in a while. How are things going?
Ed
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Hi Mahlon,
How are things going with you? Have you made a decision about Ocrevus yet?
BTW, I like the picture of you in the saddle. I got back on a horse, a few years ago, for the first time since I was a kid and worked with a riding therapist. It made me feel better physically and mentally. Do you still ride?
Ed
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Hi Kevin,
I’m wondering if you’ve had a chance to try CBD to help your tremors?
Ed
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You’re correct, Jackie.
As I reported in my column, the live vaccine, which is what the nasal spray is produced from, should not be used by someone with MS. Your info about the high-dose vaccine is also correct and was also reported in my column.
Thanks for your comment about delaying the vaccine until after an exacerbation. That’s something I didn’t know, though it seems to make sense. Can you cite a source for that information?
Ed
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Jackie,
Where are you seeing “conflicting advice” about getting a flu shot? All of the advice I’ve seen from medical professionals, as opposed to some unsupported opinions on social media, is that flu shots are a good thing. That goes for people for MS as well.
I believe this statement from the US National Multiple Sclerosis Society, which I quoted in my column:
“The seasonal flu vaccine has been studied extensively in people with MS and is considered quite safe, regardless of the disease-modifying therapy they are taking. However, individuals being treated with Lemtrada® should be given the inactivated flu vaccine six weeks before receiving their Lemtrada infusion.”
If you haven’t read the column, which contains a lot of facts about the flu shot, there’s a link to it in my original forum post.
Ed
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Valeria,
I was diagnosed when I was 32 years old. Our son was only 2. I’m now 70, our son is 39 and we have grandchildren who are 2 and 4 years old.
I worked, full-time, until I retired 5 1/2 years ago. I’ve traveled all over the world for work and for pleasure. I now use a cane and a scooter to help me get around but my life has been good and continues to be good.
MS is not the end of the world. It effects everyone differently but you can, also, live a good life.
Ed