Treatments that don't suppress the immune system?

[lusciousleaves]

Hey gang, I'm wondering if anyone can give me a brush up or update on what's happening in the treatment choices. It's been awhile since I stumbled into this originally and the only one I can remember is Copaxone. Are there others available now that don't suppress immunity?

It's going to be a few weeks before we go over everything and I wanted to prepare in advance just in case this is what I'm faced with. I'm having another MS workup, so this is obviously what the neuro is suspecting after this last MRI.

I don't want to suppress immunity because I plan on working in nursing homes and can't have vaccines. They give me flareups.

[lusciousleaves]

I think I remember something about IVIG from the past, too.

[22cyclist]

Copaxone is probably the only one that does not decrease your white count. I would go with that.

The interferons:
Rebif
Avonex
Betaseron

All shots will decrease your white count, or may decrease your white count.

The pills:
Aubagio
Tecfidera
Gilenya

May decrease your white count.

The infusions:
IVIG (rarely)
Tysabri

May decrease your white count.

Copaxone

Does not decrease white blood count.

So you can choose. However, copaxone is the one that does not mess with your blood counts the most. It works differently than the rest. If that is all you are looking for than that is what I would choose.

However, if you want to choose a DMD for efficacy of preventing new lesions and exacerbations then the percentages are:

Copaxone 30%
Rebif 30%
Avonex 30%
Betaseron 30%
Aubagio 30%
Gilenya 50%
Tecfedera 50%
Tysabri 80%

You should pick the one that is best for you. If you start with Copaxone, you can always move up if it doesn't work for you.

Take care, Good luck with everything in your diagnostic process.

Lisa
Moderation Team

[lusciousleaves]

That's excellent, 22. Thank you.

[Alicious]

Copaxone far and away has the best safety profile, so if that is your chief concern (along with white blood cells!), it may be a good place to start.

[lusciousleaves]

It's not the chief concern, but definitely high up on the priority list. I've got a kid in school who gets sick easily, and now my husband is catching everything he brings home. Plus, I'd like to get back to working with the public, with critically ill people, hospice patients and nursing home residents. On top of that, we have a veritable zoo at home - chickens, dogs, a cat and a rabbit. In essence, I had a full and active life before this I'd really like to get back to and enjoy.

Maybe the vaccine situation would change if I were able to get some kind of real treatment going. As it is now, everything that stirs up my immune system causes flareups and all I can do is avoid those situations as much as possible. This is heat, over-exertion, illness, and vaccines among a few others.

I've had endless flareups since last fall because of over-exertion followed by several UTIs. It was finally clearing up when along came another UTI and stirred it all up again. So you see, I have little to no control over this no matter how hard I try to adjust my life to work with it and roll with the punches.

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.

A possible high cord lesion showed up on the first MRI that was done, but we've not seen any in that area since, despite the fact the symptoms there continue to accumulate and progress. There was a possible brainstem lesion on the BAER, but that was decided to be "normal," too.

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. Who has the time and money to go doctor shopping far from home? I tried that, and was simply told migraines were the cause or keep looking.

Now that 3 years later I finally had another MRI ordered through a general neuro that came back with so many changes a migraine diagnosis is unlikely, a comparative study shows there were abnormalities originally that have progressed over the course of 3 years while waiting for someone else to order another MRI.

Those are my main concerns, and I'm probably getting ahead of myself because an official answer hasn't come in yet. There is still more testing to do, but we're basically just looking to confirm MS at this point. I am getting the feeling this last MRI is going to push us in the direction of trying to control flareups rather than simply hitting them with steroids when they come up. This news is a huge relief to me.

There is nothing harder than watching your mental and physical functions go down the tubes while doctors dink around with meds that only treat the symptoms and give bad side effects, then tell you to seek therapy for anxiety and depression that wouldn't exist if someone would just try to get to the bottom of things instead of brush you off with some flippant explanation when this frightening, incapacitating stuff shows up on the radar again.

If you're going to suffer through side effects like that, at least try to treat the underlying disease process, you know? If you're not going to treat the underlying disease process, at least try to find out what it is? Is that too much to ask for a $300 office visit?

Okay. All my cards are on the table now. Yes, I guess I'm still dealing with some anger over this. I don't know what a person has to do to get taken seriously by these people.

[Alicious]

I don't blame you a bit for being mad, and this forum is absolutely a safe place to express it. It's scary enough watching your body degrade, but it has to be more so when you can't get anyone to tell you what on earth is going on with it. I am so sorry you've been living this hell, and I hope that soon, very soon, you can get a diagnosis and get the medication show on the road. I too have a brainstem lesion (right medulla, I believe), and it's scary as heck. And lots of words I can't type on a family friendly site, you know? What am I saying? You totally know. It sounds like yours isn't silent.

Rebif, Avonex, and Betaseron are interferons. Interferons are a chemical your cells produce naturally when you are ill as a way of killing a virus. They are what make you feel achey, feverish, etc. in the process, so when you inject them, you may feel all of that for a few hours to a day or so. Some people tolerate those meds quite well, or acclimate quickly. Some people do not. With such an active life and no time to feel like crap, Copaxone would be a great bet even beyond the safety profile.

Clearly your own thoughts and your doctor's opinion weigh most heavily, but here's my $.02, anyhow.

[lusciousleaves]

Sorry for the rant. I try really hard not to do that anymore. I really am doing my best to get past that all, let it go and move forward.

Coming at this from another angle, is there anything new that patients actually feel better during the treatment? As in higher energy levels, less brain fog, fewer flareups, fewer and lessened symptoms?

I understand the treatment isn't about making a person feel better, but are there any that do?

If I could just get fewer flareups, I might have a chance at getting the diet and lifestyle thing under control, which would increase my energy levels and allow me to live a fuller life than what it's become these last few years.

[lusciousleaves]

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.

[Alicious]

Vent away!

I want to say that Lemtrada/Campath (approved by EU, still in trials here, I believe) actually showed improvement on the EDSS. Again, don't quote me, but I believe I came across that. It's also a radically different med that is administered by IV for a few days, then again the next year, and that's it. It comes with a host of potential issues, but may be worth looking into as you do research for your future.

Other than that...no. Fewer flareups is the goal, of course, and if your body is able to heal you may have a reduction in some personally specific symptoms if/as areas remyelinate, but that's kind of luck of the draw. None of them seem to make people feel better in a general sense, nor, as you mentioned, are they intended to. Some of them, however, may leave you feeling normal. People love interferons; I couldn't adjust to the flu-like feelings. Some people feel awful on Tecfidera; I can't tell I'm even taking it. It's really trial and error to see what reduces disease activity while not making you miserable in the process.

There are quite a few meds out there to treat specific symptoms, but that's probably another great question for your doctor. Would an MS specialist be willing to take you on as part of the diagnostic process now that you have data that you have progressing abnormalities on the MRI? I'm sure you've inquired, I'm just thinking out loud.

[lusciousleaves]

No MS neuro will give you the time of day around here without MRI abnormalities, so maybe now they would. I'm just upset it took this long to get another MRI and that I had to sacrifice a much larger portion of my nervous system than would have been necessary as a result. Why I couldn't get MRIs every 6 months is beyond me.

[lusciousleaves]

The newer meds definitely look more promising in terms of lesion reduction, but isn't this also newer, more short-term data?

[lusciousleaves]

I don't blame you a bit for being mad, and this forum is absolutely a safe place to express it. It's scary enough watching your body degrade, but it has to be more so when you can't get anyone to tell you what on earth is going on with it. I am so sorry you've been living this hell, and I hope that soon, very soon, you can get a diagnosis and get the medication show on the road. I too have a brainstem lesion (right medulla, I believe), and it's scary as heck. And lots of words I can't type on a family friendly site, you know? What am I saying? You totally know. It sounds like yours isn't silent.

Rebif, Avonex, and Betaseron are interferons. Interferons are a chemical your cells produce naturally when you are ill as a way of killing a virus. They are what make you feel achey, feverish, etc. in the process, so when you inject them, you may feel all of that for a few hours to a day or so. Some people tolerate those meds quite well, or acclimate quickly. Some people do not. With such an active life and no time to feel like crap, Copaxone would be a great bet even beyond the safety profile.

Clearly your own thoughts and your doctor's opinion weigh most heavily, but here's my $.02, anyhow.

Thank you for this. I almost completely missed this post. Yes. It has been hell, and I want so much to see that phase of this end and move on with treating the disease process.

[Alicious]

I say fight fight fight (if you have an energy left!) to get the MRIs that show damage into the hands of a specialist. I know, easier said than done.

Wikipedia tells me Campath was approved in 2001 as a chemo treatment for leukemia. It's being relabeled as Lemtrada with a likely price hike for MS. So, there is some longer term data regarding safety, I would imagine, but it's in a completely different group of patients than the current studies, and I can't speak to the relevance of it.

The med I'm on, Tecfidera, was available for psoriasis in similar form in Germany for many years. It wasn't generally used long term, so that data is sketchier, but there is some data and so far as they know, it's one of the safest meds. *fingers crossed*

Aubagio is new, but it's based on Arava, a drug for rheumatoid arthritis that has been around for awhile. The body processes Arava chemically into Aubagio. OK, not exactly, but that's the idea--Aubagio is the metabolized version of the med, so they expect the same safety profile.

Gilenya is one with limited data that they keep finding new issues with. It's not a bad drug, but it can have heart, pulmonary, and melanoma issues, so for me, I'll take Tecfidera any day of the week.

Copaxone has a lengthy (for an MS med) and very good safety profile. The interferons are quite safe, and also have quite a bit of data, but aren't *as* safe as Copaxone, even though they are, overall, quire safe.

(I've been on Copaxone, Avonex, Rebif, Aubagio, and Tecfidera, an am happy to tell you what I think of any of them if you ever want to know.)

[22cyclist]

Tysabri makes some people feel better, me included. It has given some people the ability to move around better, gives them more energy, etc. I wouldn't start it as my first line therapy though unless you have a high lesion load. Tecfidera would be good after the first 3 months. People say they start to feel better, and start to feel normal again. Ty has a long history of a risk/reward record. Tec of course has a short one as it has not been out that long.

Take care
Lisa
Moderation Team