Limbo and considering asking for some kind of treatment?

[lusciousleaves]

Hey there. I almost never visit this forum because I'm a limbo gal and there hasn't been much offered in the way of treatment to slow relapses and flare ups for me. But there have been suggestions made by the neuro-ophth and GP to impact a suspected, potentially systemic autoimmune process. What's been offered so far are methotrexate and plaquenil, and maybe cellcept.

After this last episode of weakness with another case of the flu, that spread from my usual above the knee to an above the hip pattern that still remains weeks later intermittently, I'm considering taking them up on the offer.

What concerns me is how either of these might impact any future treatment, say if this does turn out to be MS in the long run. I know there are certain treatments that carry significant risks if there has been any past use of immunosuppressive treatments.

Would either of these carry that risk, and does anyone here have experience using either one?

[Redwings]

The med you're referring to by "certain treatments that carry significant risks if there has been any past use of immunosuppressive treatments" is Tysabri, and the risk is for the development of PML. It's likely that most of the meds you'll be offered for a suspected autoimmune process will be immunosuppressants. Methotrexate and Cellcept are immunosuppressants. Plaquenil technically isn't, but its effects with regard to Tysabri may be the same. Any of them would put you at increased risk of developing PML on Tysabri. Considering your history, though, your chances of being in a position where Tysabri would be indicated for you are remote at best, so there doesn't seem to be any reasonable basis why it should be a consideration in what drug you would choose now.

As far as future treatments for MS, should you ever develop MS, it isn't known what their potential for PML is, let alone what the added effects of prior meds might be.

Immunosuppressants themselves carry a risk of PML, as well as lymphoma and leukemia.

From the meds you were offered, it sounds like your docs -- without actually knowing what condition they're trying to treat -- are approaching it as if it's a lupus-like condition. That may be as reasonable an approach as any. But it brings up the issue that your GP (and possibly your neuro-ophth) have probably never been in the position of treating and managing medications for lupus or other autoimmune patients, and may not be the most qualified to be choosing a medication for you. For example, why were you offered those three meds and not others? I think it's significant that, in your thread title, you were only as specific as "asking for some kind of treatment." I appreciate that you may be willing to accept what they choose for you because no other doctors have been willing to do it. But is that enough of a qualification?

My own experience was different. When my first neuro-ophth suspected that I had an inflammatory condition (which he was sure wasn't MS), he referred my to a rheumatologist. I was treated and followed by rheumatologists for 15 years for my unknown condition because those were the docs who were most qualified to prescribe and manage immunosuppressants. For the last 6-1/2 years I've been treated by a neuro-ophthalmologist who also specializes in inflammatory/autoimmune conditions of the eye. He's very well qualified and experienced with the use of immunosuppressants, but he's still had to consult with my old rheumatologist when I got to the end of the line with meds I could take. I've been on several, and have had various troubles with all of them. I've been on Cellcept and methotrexate (both oral and injectible) and had to discontinue both of them due to intolerable side effects.

I think it's reasonable that you would want to try an immunosuppressant or immunomodulating med. But it seems like your docs are just dabbling, like your GP did when he put you on steroids without a solid plan for getting you off of them, and with no alternative plan. My best recommendation would be for you to consult a rheumatologist about the feasibility of the available immunosuppressant or -modulating meds before you decide which, if any, to take. Then, have at it.

[lusciousleaves]

Sounds very reasonable, as always, Redwings. Thank you for your input. It's always appreciated.

In defense of my GP, his plan for getting me off the steroids was plaquenil combined with a lower "safe" dose of steroids. The neuro-ophth was on board with plaquenil as a choice as well, but also recommended methotrexate as a possibility. It sounded to me like they both have experience with similar cases where success was made with this route and are comfortable trying it in my situation.

It was my foolishness in deciding to get off the steroids without any other treatment to continue the progress that had been made. At that point, I was just plain sick of dabbling and doctor's visits. But I did get a nice long 4 months of no flare ups or new problems after tapering off. Once again, it's back to the near monthly flareups.

No matter what any doc chooses to do at this point, neuro or otherwise, it will be a dabbling approach. The neuroimmuno has been dabbling as well all along. I plan to run it past him at our next visit and see what he thinks, but after checking in with the GP on it, he feels it might still be an appropriate choice.

All we have other than this is steroids with flareups if they're bad enough. That is the one thing they all agree on as an emergency treatment plan. But no more lengthy courses of them. I won't agree to it.

[Redwings]

After having been on so many different meds myself, my first thought on reading your post was, "Why Plaquenil?" But it's probably a good relatively low-risk choice for a doctor without a lot of experience when working with an unknown disease entity.

Considering that all of the immunosuppressants and modulators have risks and side effects, it seems like LDN might be a friendlier, lower-risk option to start with. It fulfills the criterion of being "some kind of treatment." Your GP doesn't need as much skill to manage it. And if it doesn't work, you can always step up to an anti-inflammatory or immunosuppressant med later.

[lusciousleaves]

Probably. All docs like the safest options first. What he doesn't know yet is that there has been progression without signs of an underlying process. We haven't covered that ground yet. It's been almost a year since I've contacted his office for anything. There was a little catching up to do. The LDN inquiry I made was determined not to be an acceptable choice. Maybe the NI would be more open to that idea. I'm guessing not, however.

After reading a little about plaquenil, it might actually fit in with the NI's approach. He has an interesting angle he's been working on, and this sort of fits with those ideas, too.

I'm starting to see that one of the benefits of not having a formal name to what's happening is that it allows some lattitude in terms of selecting a more personalized approach. There seems to be more than one thing going on here, and in the process of pinning down what is part of which, there is no cookie-cutter approach to try. This is as much a benefit as a thorn in the side.

In the end, aren't any treatments for autoimmune diseases trial and error? It's the same thing with cancer much of the time, or high blood pressure. It seems to be the number of conditions that have a predictable, cookie-cutter treatment plan that work every time is pretty small.

The steroids did help. This might be a clue.