Treatments that don't suppress the immune system?

[lusciousleaves]

All very helpful condensed info. Much appreciated. Thank you.

[lusciousleaves]

I thought of one other question . . . which of these play well with other autoimmune conditions like lupus, RA or psoriasis? Are there some treatments that can be used for those conditions as well? I've seen the psoriasis BG12 thing mentioned, but not the others.

[heliotrope]

One other consideration, I have a high risk of a couple different types of cancer and it runs in the family. So altering immune system function is a main concern in that regard, also.

Obviously, this is the type of thing I need to be discussing with the doc at our next visit, but it doesn't hurt to ask others who've experienced the same thing and hear how they've made their decisions and how they've worked out.

I really need a good MS doc, and so far haven't been able to find one because of the MRI situation. It's looking too complex for a general neuro, yet that's all I have to keep me going for the time being. Even so, there is no guarantee and MS doc will agree with the general neuro's diagnosis and treatment plan once it's made.

I'm in the same boat (family cancer history) and can't get a straight answer from anyone (neuro, PCP, even a family member's oncologist) in regards to DMDs/cancer. From the few studies I've read online (mostly with organ transplants), immunosuppression seems to increase the likelihood of cancer. But what that means for MS? You'll see I posted a similar question to the forum. I don't think there's been a study done...

At this point, I'm juggling my options.

[shalimar]

Been on most of them (Beta Seron, Copaxone, Tysabri, Gilenya, and currently Tecfidera) . I feel Tysabri made me feel the best plus least amount of flare ups, but my doc was afraid of me getting PML since I was on it over 2 years. Copaxone I was on for 7 yrs but I was getting 3 flares a year. Tec I have been on for 5 weeks and so far have been getting very stiff legs and have no desirefor food so hope that will go away.

[kjg22170]

Side effect with Copaxone that you might want to consider

First off, I'm so sorry for what you have gone through just in trying to get diagnosed and for the dilemma you now likely face. It took me upwards of ten years and my first really big flare to finally get diagnosed (no, I don't just have a busy lifestyle, Doc, but thanks anyway!). I failed on all the interferons (allergic to a preservative in the sub-Q shots and horrible fever with Avonex (yes, took Tylenol ahead of time) that my doc felt was too likely to cause flares. As a side note, since my initial diagnosis, I have seen the head neuro at one of the top MS clinics in the US. Since my first big flare, I was having about two significant flares a year, and I needed to be on something. When I was considering Copaxone, I learned about a side effect called Lipo-atrophy. Basically, you can end up with dents, for lack of a better word, at your injection sites where the subcutaneous fat sort of dies away. And no, you can't just inject in saddle bags and muffin tops! You inject Copaxone daily, and the dents don't usually show up for several weeks, meaning that you can have dozens of permanent dents before you even realize you are having that side effect. That said, many people swear by Copaxone and do not have this side effect. It is very hard to know what percent of users have Lipo-atrophy because there are different standards for how large the dent needs to be to count. If you count even small dents, my doc's best guess from all the research he had read (the MS center he runs is a top research facility, too, and so he is up on all the research out there) was that about 50% of patients experience this problem. You might want to look up photos so that you have an idea of what this side effect can look like at its worst. I decided against Copaxone and eventually ended up in the phase III clinical trials for Gilenya (called FT720 or something like that at the time). I was randomized into the high dose group and switched onto the lower dose once results started showing similar efficacy with a much better safety profile. (The study was double-blinded and placebo controlled, of course, but the docs told me after which group I was in, though I was already quite certain that I had been started on the high dose.) Gilenya definitely lowers your white blood cell count, but if your count goes too low, they take you off for about a month until your count is high enough again.

I had this happen once while I was on the high dose but never on the low dose. I don't remember the percent decrease the docs allowed, but I think it was maybe 20% maximum. That said, I have a ten year old son (and have been on the med for at least four years), and I rarely catch any of the viruses he brings home. I wash my hands fanatically. However, i do not have a job that keeps me around people who are ill on a regular basis. The heart-specific side effects were almost entirely first-dose related and mostly on the higher dose. I had my blood pressure and heart rate drop enough that I had to be observed for several hours after my first high dose pill. Now they look at your heart health more carefully before allowing you to go on Gilenya. I believe they also routinely monitor new patients for maybe 24 hours. Don't take my word for this, though, since I have been on the meds since before this change. Again, it's really just the first dose, if any, and then your body adjusts. Regarding cancer, I do not have a significant family history of cancer. During the years I was in the clinical trial and extension trial, we were told whenever someone had an adverse reaction was discovered, fully informed (especially because I ask a million questions and am hyper analytically), and then asked to read through a new consent document with the new possible adverse reactions listed. What I think I remember about cancer (please double check with a reputable MS doc if you are able to see one since my memory isn't what it used to be) is that the person (people?) who got melanoma had other irregularities in their cases, such as having been on another immunosuppressive med too close to starting Gilenya (you're supposed to make sure any meds like that have completely cleared your system first) or were being treated for something other than MS. Ugh!

I wish my darn memory were better. Stupid MS! Of course, as you have already mentioned, Gilenya is pretty new, and who knows what we will learn in the coming years. In the meantime, I went from having at least two significant flares a year to having maybe one (burning feeling and some numbness in my feet and lower legs that lasted a few days, so tough to know for sure) since I started Gilenya four or five years ago. While on any med that can lower your white blood cell count, it is important to receive routine vaccines, as you clearly already realize. I am surprised to hear that vaccines cause flares for you. Do they make you spike a fever? If so, the fever is likely what is causing the flare. Anything that raises your core body temp too much or for too long can increase the chance of having a flare. That is why my doc wouldn't let me try a second dose of Avonex. You should ask your doc if taking Tylenol before receiving a vaccine is safe and might help. Do you have this reaction to vaccines created from dead viruses? Only the live-attenuated vaccines like FluMist should be avoided when you're on something like Gilenya unless, of course, you cannot tolerate vaccines for some other reason. Anyway, sorry for the long-winded response.

I just thought it was important for you to know about the Lipo-atrophy that Copaxone can cause and that Gilenya's side effects might not be as scary as they sound at first once you know more about the circumstances under which they occurred. Again, I say that while fully understanding that Gilenya is still relatively new, and there is no way to predict what longer term issues might show up down the road. One last thing: Yes, on average Gilenya does a better job of decreasing flares, lesions, and disability progression. However, none of us is average. You won't know how well Copaxone works for you personally until you try it. All that matters is that it works for you. Best of luck to you in your search for a definitive diagnosis and appropriate med.

** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

[lusciousleaves]

Kjg, it sounds like you're having a great response to Gilenya.

Helio, I did read something on Copaxone that made me question if it would put me more at risk. I guess it boils down to treating what is vs. what might be. One is real now, the other may never be. It's still not great if treating what is makes what may never be more likely to happen. It doesn't look like there have been many studies on this, and the testing for approval is minimal it seems in terms of DNA damage.

I haven't had time yet to really dig in to research these things and won't for awhile. In the meantime, I really appreciate everyone sharing their experiences and outcomes with the different meds.

[suzannem24]

Low dose naltrexone helps with symptoms

I've been taking Copaxone since I was diagnosed in April because of it's safety profile and being the only drug treatment that doesn't suppress the immune system. Since then I've become aware of low dose naltrexone, which has been of help to people with many different autoimmune conditions, including MS. I have a friend who's a nurse practitioner, and she says it has made a world of difference with her fibromyalgia. I haven't yet tried it as I wanted to try it in combination with Copaxone before considering it on it's own (little research has been done as there's no money in it), but it's a compounded drug and will cost me $66 month, which is a steep increase in drug costs for me. So we'll see...

[JDESCMom]

I was diagnosed with MS in April of 2010 when I found myself in the hospital unable to walk or stand. With therapy and steroids, I was able to walk again. A few months later, I started on Gilenya, and it has worked well for me. I know the white blood count is lowered; at one point, my neurologist was going to take me off Gilenya (my white blood count was .03) if it didn't come up. I started taking 2 green tea tablets once a day (630 mg), and have added the Juice Plus regimen to my daily pills. This combination seems to be working for me. I haven't had any exacerbations, and my white blood count is up to 4 at my last appointment last week.

I sincerely hope you are able to find the best solution for your situation.

[Muffkin]

Just a note:

I know you specifically asked about medication treatments, but I'd really like for you to also look at alternative methods. My MRI showed a total of 20 different lesions throughout. So I was scared and sought out the first "safe" sounding drug I could find. For a month I was on Copaxone and rarely moved. I was so weak on it that my boyfriend even had to help me from the couch to the restroom. After a month, I took my last shot. It was that shot that told me that I couldn't do this anymore. I was literally ready to have my boyfriend just shoot me. (Do keep in mind, that I'm abnormal for side effects).
After that little experience we checked out every option there is available. We finally decided on the Wahls Protocol. It's very similar to the Paleo diet, but focuses more on foods that "trigger" symptoms. We've been doing the diet now for two weeks and we're both already noticing improvement. (He has RA, so it's great for him too). I know one of your concerns is about family history of cancer. This is a great diet for that too. I just wanted to throw that option at you so you could read about it and maybe find some solace in it. Regardless, good luck to you hon!

[lusciousleaves]

Muffkin, I've tried various supplements with limited success and I've tried dietary changes. The problem is, one mistake overdoing things or one infection, and I have to start all over after recovering. I'm the only person in this house that knows how to cook from scratch, and the only person who's comfortable enough in the kitchen and reading recipes to do so. When I'm not up to cooking or shopping, we either eat out or eat processed foods from the freezer. As much as I'd like that to change, it's just how it is.

[aspen]

Just read through this thread this morning, and this caught my eye.


"My main concern is this seems to be hitting the muscles of respiration big time, and there is evidence of it messing with autonomic functions, including my respiratory drive dropping too low during flareups and bronchospams not related to pulmonary disease of any kind. "

AND

"I've not been able to get an MS doc to take me seriously because until now, the one brain MRI I had done came back "normal" on the report. Not all docs look at the images. You know? It's hit or miss if you find one that does."

Re: the first paragraph; in March I had trouble with my heart rate bottoming out for a while. 2.5 weeks ago this started again - heart rate in the low fifties (my normal is 80), bp bouncing around, air hunger (feeling like I'm not getting enough oxygen), also feeling like my resps are too low and having to concentrate on breathing, and chest pain. I finally searched this morning and camp up with dysautonomia. I'm wondering ...

And re: your second -- I have the lesions! Two guxta cortical, two periventricular, several miscellaneous others and one in internal capsule. Radiologist says ms. The ms docs just say they're not big enough. I hear your frustration.

[lusciousleaves]

Aspen, I just wish those MS docs would take these things more seriously if they're convinced it's not MS. Those conditions that aren't MS can be far more serious and move more quickly than MS. It's been said they'll help diagnose the condition, but I've not seen a single one that will lift a finger to do that. Better to stick with the general neuros. They view things through a wider lens.

For the life of me, I don't understand why these things take so long to get to the bottom of. We hear so much about this great technology and this great health care system we have, but when you're stuck in a situation like this it moves like dripping molasses in a spiderweb.

There's a reason why some of us call our health care system a sick care system. There is no such thing as proactive or preventive medicine here. It's "wait until she's on her deathbed and ask for a sample of brain tissue to study when she's gone."

Yes. I'm being morbid, but it is Halloween coming up, isn't it? It fits.

[Morning Glory]

Homeopathy

I'm starting treatment this week with a homeopath. I'm excited and hopeful that the symptoms I've been suffering with for 10 months might finally come to an end, i.e., burning/tingling/numbness in both upper and lower extremities, face, and scalp; weakness in my arms and legs; balance problems; twitching muscles; blurred vision in my right eye; and fatigue.