multiple sclerosis treatments and advice

April 20, 2005 12:29 PM

Multiple Sclerosis: what tips, tricks, medications, supplements, treatments or therapies are worth trying?

My mother was diagnosed with relapsing-remitting MS about 10 years ago; about 5 years ago she was rediagnosed with "secondary progressive" MS, which means that things started getting significantly worse.

In the beginning she had trouble with balance, and had some memory/cognitive issues, but on good days was pretty normal. Now she can't walk at all without a cane and/or a strong arm, and generally needs a wheelchair. My sister's boyfriend commented that she seems as if she has alzheimer's (the doctors say these cognitive issues are just specific to the form of MS she has, which is apparently higher on the spinal cord than some forms). Her hands shake too much for her to drink out of cups anymore, and she is often too weak to sit up straight.

She is living in london with my grannie & a live-in assistant, & they have (gov't provided) caretakers who make sure the house is clean and that she gets her disability benefits & is able to eat, etc, but they do not provide any medicines or treatments that are actually geared toward improvement. At first I thought this was just because there are no such treatments, but casual conversations and simple googling has shown that most MS patients in the US are fighting the disease, not simply being nursed.

Her condition is devastating to me and I am not quite ready to give up, if there is any hope. So, please let me know of any avenues worth exploring or emphasizing. She is not really motivated to improve things herself, probably (at least partly) due to symptoms of the disease itself. Are there any programs or trials you know about that would be worth trying, in the UK or the US? Are there meds that have had a significant impact on anyone you know? My sister will be going along to a doctor's appt in May (we haven't been able to talk with them by phone) but any info or thoughts that will help us determine what might be useful are appreciated.

I made this comment earlier, which is sort of relevant.

posted by mdn to health (20 comments total)

You may have already seen this, but the Natioal Library of Medicine has an excellent section on multiple sclerosis:

http://www.nlm.nih.gov/medlineplus/multiplesclerosis.html


You may also want to do some searches on www.medlineplus.gov.


Best of Luck
posted by cosmicbandito at 12:39 PM on April 20, 2005

I have a friend with MS and I understand that people who live in areas like California are less prone to it. I believe this is only for younger people, but it may be worth looking into. Maybe keeping her apartment dry with a dehumidifier would help. Also, my friend is definitely on medication so I'm glad you are looking into it.
posted by lorrer at 12:51 PM on April 20, 2005

Lorrer: People who live in lower latitudes for the first 15 years of life are less likely to develop MS. But that really doesn't have anything to do with mdn's mother.

MDN: I have a personal stake in this matter since it appears likely I will be diagnosed with MS very soon. (There are specific diagnostic criteria that take time to be met). I gather that your mother was diagnosed relatively late in life? Most women with MS develop it in their 20's. Unfortunately, when MS develops later in life it can be much more rapid. And even more unfortunately, there is not much that can be done except to treat symptoms.

That said, if your mother is not on medications, something is very wrong. Many of the symptoms of MS can be effectively treated. Especially things like tremor, which you mention. I can't understand why she wouldn't be on some sort of medication for that.

Additionally, although as I said not much can be done to halt the progession, that doesn't mean nothing. European studies have shown that intravenous Betaseron delays progression to some extent. Also, for aggressive cases things like immunosuppresants can be effective. Stuff like Mitoxantrone can halt the progression. But you can only take it for a couple years because it damages the heart muscle after a long enough period of time.

I could go on for pages. The bottom line is, if she isn't being medicated at all something is probably wrong, but since we aren't doctors only you and they can really know the situation. At the very least she should be receiving pallative medications to reduce symptoms, if not intravenous beta interferons or immunosuppresants.
posted by Justinian at 1:05 PM on April 20, 2005

My mother has been helped by some of the various interferon injections. She's been on betaseron and avonex at least, and I think one other form. They're all hideously expensive still, in the $10K/year range; my mom is covered by the VA.

justinian: they have IV interferons too? All of the ones my mom has been on have been, AFAIK, subcutaneous (3/week) or intramuscular (1/week) injections.
posted by ROU_Xenophobe at 1:09 PM on April 20, 2005

here is a friend's extensive livejournal entry about his experience after 1 year of being diagnosed with MS
posted by yeahyeahyeahwhoo at 1:16 PM on April 20, 2005

Xenophobe: I misspoke... I didn't mean intravenous, I meant subcutaneous. I do that a lot.

There are two promising treatments on the horizon but both have significant downsides. The first is Tysabri, which is an injection given once a month and is very effective and stopping relapses and new lesions in people with relapsing remitting MS. But it killed two people in the clinical trials. Both were taking Tysabri in addition to another drug, so it isn't clear if it was the interaction or not. Fingers crossed.

The second is Campath. It is an immunosuppresant which essentially destroys your T-Cells. Then the type of t-cells not involved in MS (T2 I think) are put back. This treatment temporarily halted progression of the disease in people with early progressive illness, virtually eliminated (99%+) new lesions, and virtually eliminated relapses. Clinical trials are about halfway done comparing its effectiveness against the interferons. Of course, it also has a 30% of screwing up your thyroid and giving you hyperthyroidism. But it looks promising.

Unfortunately, recent research appears to hint that MS is not simply an autoimmunate inflammatory disease. It's possible that even if we completely halt the inflammation, progression will still eventually take place because oligodendrocytes are being destroyed even in the absence of inflammatory process. That is not a good thing because it means much of the research over the past decade has been looking at a symptom rather than a cause of the disease (the inflammatory process).
posted by Justinian at 1:25 PM on April 20, 2005

Justinian,

May I ask how you came across the info on Campath?

Thanks for the articulate posts.
posted by docpops at 1:47 PM on April 20, 2005

Honestly, it's because I've spend a few dozen hours researching the topic given that I'm quite likely going to be intimately involved in treatment options rather soon. I can't tell you precisely where I first encountered it, though. There used to be a site called "David's Campath Story" written by a guy who was treated with Campath about his experiences, etc, but he took it down recently.

It may have been from www.thisisms.com, which is a site for patients to swap stories, info, etc and contains lots of talk about various treatments. Established treatments, experimental treatments, and more. Be careful, though, its full of desperate people grasping at any straw that offers any hope at all. I understand the impulse but it encourages snake oil salesmen to swindle sick people.

The bottom line with Campath is that it (very preliminarily) looks to almost halt the relapsing inflammatory process in its tracks... but may not halt disease progression longterm for many people because the inflammatory process may not turn out to be the real story after all.

Other treatments have shown great promise and fallen flat on their faces so its too early to say for sure. The big question is the clinical trial underway now comparing low and high dose Campath to high dose beta interferon. Results will be ready in 2006.
posted by Justinian at 2:05 PM on April 20, 2005

'Multiplicity in time and space' - one of my favourite expressions, which took me quite a while to comprehend, when I first heard about it. It describes the symptoms of MS. One day this for x time, the next day that for y time.

I empathize with your concerns mdn.
I hope ikkyu2 comes along with some sage advice here.

If it was my mother I'm sure I would be reviewing everything available to help me have a better understanding of choices. That said, I would hope that enthusiastically pursuing treatment modalities did not veil for me the primary focus of maintaining as good a quality of life as possible in the face of a progressive illness. Let's hope that any treatment chosen gives some assistance rather than causes further suffering/angst. This is not trying to dissuade you from anything. Just a note of caution about expectations unmet now when in retrospect, quality of time will have been the more desired aim.

But I would certainly want a 2nd medical opinion if I wasn't satisfied with the answers given to me by the Doctor. I wish your family and your mother well.
posted by peacay at 2:08 PM on April 20, 2005

Developed as adjunctive treatment for the symptomatic relief of neuropathic pain in adults with multiple sclerosis (MS). (via sploid)
posted by poodlemouthe at 2:39 PM on April 20, 2005

I gather that your mother was diagnosed relatively late in life? Most women with MS develop it in their 20's.

Yes, she was already in her late forties by the time she was diagnosed. She had had symptoms for at least a few years by then, though; she just didn't have insurance and they were vague enough that we generally blamed them on her drinking too much or smoking too much pot, or on depression, or a personal lack of motivation, etc. Neurological symptoms can be difficult to properly differentiate from personal problems sometimes, so it might have been diagnosable before then but she didn't have a regular doctor or an attentive partner, & my sister & I were still teenagers/college kids, and didn't realize the significance.

But as I said, things weren't that bad in the beginning. It's the last five years that have really been tough.

Unfortunately, when MS develops later in life it can be much more rapid. And even more unfortunately, there is not much that can be done except to treat symptoms.

I know, and I am not an overly optimistic type in general, but I am frustrated because it seems as if nothing is being tried. Here & there she'll have a better day, and we'll have a conversation where I think, wait, why do I think this is hopeless? I don't want to become blind to the facts, but honestly at this point I feel like the danger is writing her off too soon, both on my part and on the part of doctors and family in london. Unfortunately I think there's a bit of a family dynamic with her siblings where they are a bit too likely to give up on her because she's kind of always been the flaky 'little sister' anyway, and the attitude of people around her is very much one of resignation.

She did have a brief round of some kind of steroid around the time the diagnosis was changed, but that was the only medication I remember her being given, other than some vitamin supplements. It certainly boosted her energy then. Is one round of steroids the norm? Is it too dangerous to do multiple times? Or perhaps just loses efficacy?

Thank you for all the links and information, especially Justinian. I know the doctor's appointment will be the most important thing since it will be specific to my mother's case, but becoming more familiar with the options and expectations of other patients seems useful, and especially finding out about any programs or trials the docs might not know about/bring up themselves...
posted by mdn at 2:40 PM on April 20, 2005

She had had symptoms for at least a few years by then, though...

I should say, some people then began retroactively categorizing previous behavior as symptomatic, e.g., my dad started saying, oh yes, I knew something was wrong around the time she turned 30... but it is unclear if this is really based on anything or not (my parents divorced when my mom was about 40). I can't tell, not least because I was just a kid at the time.
posted by mdn at 2:45 PM on April 20, 2005

MDN: Steroids are really only pallitave. They generally shorten the duration of relapses in relapsing-remitting MS, which makes the patient more comfortable. But they do not delay disease progression and would not have mattered much in the long term. But if your mother was diagnosed with relapsing-remitting MS, the most effective treatment would have been Avonex or Rebif which are beta interferons. They have been clinically proven to make a difference. I want to be clear that these are NOT a cure. But they do help prevent some relapses and may delay progressive disease.

But these treatments are VERY expensive and without insurance probably prohibitive. Something like $12,000 a year just for the injections. That may be, I am sorry to say, why she never received them. Sorry again, just tring to share info.
posted by Justinian at 3:05 PM on April 20, 2005

She's in Britain and so presumably covered by NHS, but NHS provides interferons in only a limited trial way AFAICT, and that only recently. She could talk to her physician about getting into the program; it's tentatively approved for secondary progressive.
posted by ROU_Xenophobe at 3:32 PM on April 20, 2005

In addition to the great information other posters are giving about drug therapies: Some MS patients find that cold can help palliate symptoms. Cold packs, cool baths and showers, and cooling suits are all methods that I know people sometimes find useful. Here is a little bit of discussion about cooling and MS. You might want to bring this up as a secondary, supplementary, non-drug therapy option with your mother and her doctor.
posted by redfoxtail at 4:01 PM on April 20, 2005

This article is instructive about the two deaths in the Tysabri combination trial.
posted by tomierna at 4:46 PM on April 20, 2005

But these treatments are VERY expensive and without insurance probably prohibitive. Something like $12,000 a year just for the injections. That may be, I am sorry to say, why she never received them. Sorry again, just tring to share info.

wow... no, please don't hold back information for fear of offending; I'd certainly much rather have a sense of things and I'm a pretty reasonable/practical type. That does make a lot of sense. Yet you said earlier that if she's not on meds something is wrong - are there less expensive treatments that you'd expect her to be getting?

My mother does respond somewhat to cooling treatments, but taking a cold bath isn't something she can do continuously... but those suits look kind of interesting, and the advice about refrigerated bandanas is good.

Thanks for all the links above.

So, to recap,
- steroids can help alleviate symptoms but only briefly and generally only for relapsing/remitting;
- interferon treatments definitely slow progression but are extremely expensive;
- mitoxantrone can slow progression but might be dangerous for the heart.
are there other groups of medications I should be aware of (& the pluses & minuses that come with them)? I know there's no cure, but I want to be aware of as many potential angles as possible.
posted by mdn at 7:03 PM on April 20, 2005

I have multiple sclerosis (thankfully quite mild), and by coincidence just had my annual appointment with my neurologist today.

As I understand it, the main drugs prescribed for MS are Avonex, Rebif, Betaseron, and Copaxone. The first three are forms of beta interferon which basically cudgel your immune system. Copaxone is a polymer and they don't really understand how it works. All are injected. All reduce progression of the disease by about 30%. Each has its various plusses and minuses. I've taken Copaxone for about five years, and I'm pretty happy with it, besides the inconvenience of having to do an injection every night. I wish I'd started sooner.

Unfortunately, these drugs are less effective for more aggressive forms of the disease.

Note that these are not cures, they simply slow the progression. Last I heard, the British health system was still debating whether to pay for them, for that reason. The question was "do they help enough to be worth all that bloody money" or some such. They are expensive, as others have noted.

Steroids: yes, these are palliative, but they have downsides. They get you wired and then drop you down when you come off them. I'd stay away unless you are trying to head off a serious exacerbation.

Other good drugs:

Provigil is tremendous for fatigue. It just makes it go away. It is not speed, it does not give you a buzz or make you happy. It just makes you not be tired. (Note: it's also very good for jet lag and for going two or three days without sleep, but those are off-label applications.) Provigil is about $6/dose (day) I think.

I take a tricyclic antidepressant (disipramine) for neuropathy (aka neuropathic pain). That's when degradation of your central nervous system makes you feel things in other parts of your body that aren't there, like tingling and burning and buzzing. There are other drugs that help with it, but it's a bit of a mystery and a crap shoot. Regular pain killers don't do anything. The tricyclics are all generic now, so they are very cheap.

I've found pot (aka medical marijuana) to be very helpful when I'm having an exacerbation. It actually can make the neuropathy more intense when I'm under the effects of the drug, but then the after effect is that it gets better. They way I've explained it to myself is that the pot helps my brain form new pathways around the areas that aren't working.

As others have pointed out, keeping cool is very important. Heat causes swelling which makes the inflammation worse. There are times when I'm off in zombie land, can't think straight and don't want to try to stand up, and I take a cold shower and boom I'm back on planet earth. Pretty amazing.

The last thing I'll say about MS is that for people who are newly diagnosed or who have the progressive form of the disease, it really really sucks. It is totally unpredictable. As soon as you adjust to one level of disability, you get hit with a new exacerbation. But you never know when it's going to come, or if it's going to come. Your body is just changing out from under you all the time. But there are things that can be done, and should be done.

Best of luck with this.
posted by alms at 8:11 PM on April 20, 2005

MDN: If your mom is experiencing serious symptoms then, yes, I'm surprised she isn't on any palliative medications at all. But there could be things going on in the case that we don't know about and the doctors do. Still, lets look at tremors. Tremor can be disabling but there are various medications that can sometimes help. Tremor is actually one of the more difficult symptoms to treat, but you mentioned it specifically...

Any of the following MAY help with the tremors: various strong anti-histamines, propranolol (a beta blocker), primidone (an anti-convulsant), acetazolamide (a diuretic), clonazepam or buspirone (anti-anxietics), and more. If your mom has a serious tremor, she might respond to one of those. Or she might not. I don't think its possible to say in advance. But as I said, my understanding is that serious tremor is a toughie to treat effectively.

For other things... there are multiple drugs that can treat many or most symptoms of MS to a greater or (unfortunately) lesser degree. Spasticity, fatigue, dizziness, nystagmus, bladder dysfunction, and many others can be fairly effectively treated. Some people respond much better than others and it's impossible to say in advance who I'm not a doctor and you should really talk to them rather than me. But I hope I'm at least giving you some idea of the type of stuff that is out there.

I don't want to give you false expectations though. There are probably drugs that can help with symptoms, but someone who develops MS in their 40's with fairly rapid progression is in a difficult position. I believe only something like 25% of people with MS are eventually confined to a wheelchair and most of those are so confined after 15 or 20 years, not 5.

That's about as specific as I feel comfortable being when talking about a particular case. I have read a ton of literature and research journal articles about MS in general, but I am (again) not a doctor and you should talk to them about your particular concerns. But there are definitely questions you should be asking the doctor when you or your sister see him.
posted by Justinian at 8:20 PM on April 20, 2005

My partner has MS, and recently took part in a study to examine the effects of heavy duty muscle building work outs on the disease. It seemed to do some good, though I'm not sure of the exact details of the study, and this probably wouldn't help your mother.

At the moment she takes Copaxone, which the Australian government covers the majority of the price (we only pay $28.00 per month for daily treatment) and does serious athletic training for 3 hours. Fortunately the progression has been slow.
posted by tomble at 8:46 PM on April 20, 2005