steroids

[mibishe]

i am in the hosp. again...bad relapse did 3 days iv steroids with great improvement (1st steroids in 2 1/2 years). on last day of taper and going down hill.

have tried the crab drugs and ty and ivig. on ldn now, have not noticed it helping but made commitment to myself to give it six months.

anyway my question, doc wants me to go on 80mg prednisone daily forever, is anyone else doing this?

kicker- he had lab drawn and sent off to test for devics so would daily steroids help with that if test is positive (i don't think it will be, i'm not sick enough for devics). test results should be back next week.

thank you for any comments/help.

[Redwings]

doc wants me to go on 80mg prednisone daily forever, is anyone else doing this?

Steroids, yes. Forever? Maybe for some other conditions, but not for MS. So I hope nobody says they're doing it!

There isn't sufficient justification for it. In MS, steroids seem to lose their effectiveness over time, even with active inflammation. And when RRMS turns into SPMS, steroids don't help the degenerative process. Once they no longer help, steroids become only harmful and must be discontinued. That pretty much puts an end to "forever."

Plus, the newer MS meds are making regular use (i.e., for maintenance, not treatment of flares) less and less necessary. And in your case, mibishe, you still have other options besides steroids "forever": Gilenya, Novantrone and Cytoxan now, and cladrabine and campath in the not-so-distant future. That also makes "forever" look questionable.

Whether for maintenance or treatment of flares, some people can tolerate steroids for many years, some not for long. Eventually, continued use of even lower doses of steroids leads to diabetes, osteoporosis, cataracts and glaucoma, among other things. One of the purposes of disease modifying drugs for all of the autoimmune/inflammatory diseases is to try to keep people OFF of long-term steroids because of the damage they do. A doctor has to have extremely compelling reasons to put a person on high dose steroids "forever" and subject them to that level of risk. The state of the art of MS treatment right now doesn't justify it. Anyone whose doctor has them on high dose steroids for MS "forever" should think seriously about getting a second opinion.

kicker- he had lab drawn and sent off to test for devics so would daily steroids help with that if test is positive (i don't think it will be, i'm not sick enough for devics).

Daily steroids are used for Devic's/NMO, but ideally only until the disease is brought under control by an immunosuppressant and/or chemotherapy drug. The goal is still to get NMO patients off of steroids whenever possible, although some do still require low daily doses (e.g. 10 mg of prednisone) in addition to some other medication they can tolerate. I did high-dose IV pulsed steroids for years until I was able to get off, but recently had to go back on 10 mg/day of prednisone, but that's in addition to three different immunosuppressants, not alone. And that's not "forever." The goal is to increase one of my other meds so I can get back off the prednisone.

I hope your doctor explained to you that a positive NMO test is nearly 100% reliable, but the high false negative rate (at least 30%) makes a negative test meaningless. A negative test dose NOT mean the person doesn't have NMO. With a negative test, a diagnosis of NMO has to be made from other criteria and the general presentation.

Because there's a spectrum of different presentations of NMO (called the NMO Spectrum Disorders) in addition to classic presentations, how sick a person is or how good they look isn't a reliable indicator of whether or not they have NMO. As an example, except for my steroid bloat, I've been told I look pretty good, and -- except during an exacerbation -- I'm not terribly sick.

I hope it's decided that you don't have NMO. And I hope you're feeling better soon and able to get off the high dose steroids before too long.

[mibishe]

redwings

thank you for your reply

i have prms and it just seems down hill since dx. 3 yrs ago. the steroids jump started me to be ing able to move 2 of my 4 limbs, which was good it just isn't lasting w/o the roids.
i am steroid induced diabetic now.

i picture devic pts. really, really ill, humm could i be in denial for a possible answer to ms tx. not working?

anyway thank you so much for the comments and the edu. on the nmo test. i just know in my gut i don't have it.

my doc did tell me the tx. was a chemo drug? i think that's what he said...is this correct?

[Redwings]

Hi mibishe:
The chemo drug your doctor told you about is probably Rituxan (rituximab). It has worked very well for some people with NMO and not well for others. There's another occasional poster on this forum with classic NMO who has been maintaining on Rituxan now for a few years. On the other hand, it didn't work for me at all.

There's no single med (as in "the" treatment) that's used for NMO. The treatment is one or more of the immunosuppressant drugs along with steroids for as long as necessary, or Rituxan, Cytoxan or Novantrone -- whatever works.

The extra information you told us about being PRMS and getting a boost from steroids is important for a couple of reasons: 1) it's one of those compelling reasons I mentioned that could justify a decision to put a person on high-dose long-term steroids (although I have to wonder why your doctor would do that without trying the rest of the options first) and 2) gives some clues about other drugs you might try to maybe prevent you from having to be on high-dose steroids.

Rituxan seems to be more effective for NMO than for MS. Results for RRMS with Rituxan have been unexciting, and the trial for PPMS showed that subjects didn't benefit from Rituxan with one exception: younger subjects who had active inflammation.

Here's why that's important, even if you have PRMS: If you're responding well to steroids (a lot of people with progressive forms of MS don't), it indicates that you probably have inflammation that might also respond well to Rituxan. That means that you might respond well to other drugs like Novantrone and Cellcept (an immunosuppressant), too.

So whether you have PRMS or NMO, you have medication options that could -- and probably should -- be tried before just giving up and going on high-dose long-term steroids. To be sure, those meds have their own risks and side effects, but there is some benefit to spreading those risks around different body systems. If you've already been on Tysabri, it looks like you've been willing to accept the risk of PML.

You have some options to talk to your doctor about. And, if your NMO test comes back negative, it might also be beneficial to get a second opinion from a neurologist who specializes in neuro-immunological diseases. You haven't said what kind of discussions you had with your doc about going on steroids rather than trying other meds, but -- even if he's an "MS specialist" -- if the discussion went straight to steroids and didn't cover these other options, it indicates the possibility that he might not have enough experience to be your only source for diagnosis and treatment of whatever condition it is you have.

I say that because I was misdiagnosed with MS by my medical group's "MS specialist." She disregarded all of the clues that indicated I didn't have MS and wouldn't consider NMO because my presentation wasn't classic. When I asked for the NMO test, which was new at the time, she'd never heard of it and refused to order it. For MS, she was very good about prescribing treatments. But she wouldn't consider any other condition even in the face of contradictory evidence. For NMO -- classic or otherwise -- both she and the next neurologist I saw (who was basically her clone) were completely unqualified. And I paid the price for their incompetence.

So it's very good that your doc considered NMO and ordered the test for you. But a second opinion by someone with better neuro-immunology qualifications couldn't hurt.

[mibishe]

redwings

i'm not sure if this doc is my 1st opinion, funny thing he has been my doc for a while, closed his private practice in april. i moved to his partner that is an ms specialist (i've seen him twice) i ended up with this/my old doc while in hosp. because he is there hospitalist. my new real doc isn't aware what is happening at the moment.

phew...make sense?

anyway will just go with the flow for now, no new treatment decisions for anything til i'm home got my sea legs and research.

and for me long term steroids prob. is not something i would agree to. this is the first i've done in 2 and 1/2 years because i had quit responding and they are just to hard on the body.

thank you again for taking the time to explain and chat.

[mibishe]

redwings

i found this chat we had as a reminder for you as who i am.

i posted my email address in my profile would it be possible for us to talk "of the forum"

sheila

[DianeD]

Left in the dust

Could anyone explain 'devics' and 'NMO' so i can read this? Never heard this before.

Thanks.

Diane