Is there a substitute for steriods?

[Echo2099]

Hey all,

I've been in a long relapse and so 75 days ago, my neuro ordered IV solumedral. For the first infusion day, and most of the second day, I felt pretty good. I had more strength in my legs, better coordination and balance.

HOWEVER, by the third infusion day, I returned to, and am still experiencing great weakness and lack of coordination. My legs are again so weak I have trouble even picking up my foot far enough to put on a sock.

I know that steroids can be problematic if used too often. So my question is, .... Is there anything that helps with flares as well as steroids but can be taken over a longer period of time? I know some folks have been on 5 day infusions and then on oral titration,but mine was 3 days and no titration. And my blood sugar gets really high while on steroids.

I take Tysabri (1 year), Ampyra (6months), ALA, 5000ui of D3. Last MRI 3 mos.,showed no new or enhanced lesions in my spine or brain. Last blood work, also 3 months, showed Vitamin D at 84.

I have an appt with my neuro this Wednesday and will discuss this with him, but wondered if any of you have other ideas?

The weather here has not been terribly warm or humid, so I don't think heat is the issue.

I guess I'm looking for some suggestions to discuss with my neurologist. Any ideas would be appreciated.

[MSer102]

There really isn't a substitute for steroids. You are right that long term use of steroids causes its own serious problems. That's why the goal in all inflammatory diseases is to get people off of steroids whenever possible. That's what the DMDs are for in MS and the other disease modifying drugs are for in other auto immune diseases. Sometimes it isn't possible for people to get off steroids without their diseases getting out of control. Those people get the benefits of steroids but pay the price by trading them for other health problems.

MS isn't one of the diseases where people are typically treated with daily long term steroids. There has been some research that showed that pulsed steroids were beneficial for MS for a year or two. I did pulsed steroids for awhile. Some doctors use 1000 mg of Solu-Medrol 1 day per month and some use 3 days of 1000 mg of Solu-Medrol every 3 months the same as treating a flare. I think there are probably some other doctors doing it some other way too.

From what I remember from the research the benefit of pulsed steroids only lasted a couple of years at most. That seems to go along with some MSers noticing that the more they have steroids the less well they seem to work. And that's enough steroid to start causing the long term side effects like osteoporosis, cataracts, diabetes and glaucoma. I have cataracts and borderline osteoporosis from my steroids.

A lot of sources (including my own doctors) say that steroids work best when started within 2 weeks of the start of a flare. A lot of doctors (including mine) won't prescribe steroids after 2 weeks because they say that by then the damage has already been done and the steroids don't offer enough help to offset the damage that they do. If your steroids were started more than 2 weeks after the start of your flare that might explain why you didn't get any relief from them. Sometimes people do get relief when they're started later but it isn't what usually happens and my doctor says not to expect them to work.

That day of feeling better you had on Solu-Medrol could have just been the energy rush that steroids give. That would explain why the effect wore off in just a day. Because of the rush that steroids give a lot of people misunderstand what steroids are for. They aren't to be used as a "feel better" medicine. If you are thinking that being on steroids all the time is going to make you feel better or stronger or walk better or make your other symptoms better, that probably isn't going to happen.

Since you said you are on Tysabri I think its important to know that Tysabri isn't approved to be used in combination with any other medicines. I'm taking that to include regular steroids (treating flares is OK). Apparently the risk of infection is too high.

Before anybody jumps saying that I forgot about Acthar gel it's true that Acthar is used as a substitute for steroids. Acthar is a brand name for adrenocorticotropic hormone (ACTH). ACTH is a hormone that already exist in the body that stimulates the body to make its own steroids. The increase in steroids - even though the body makes them - causes pretty much the same side effects as for steroids medicines. For MS, ACTH is approved by the FDA only for the treatment of flares.

There was a study done not too long ago that showed that Acthar gel worked as well as Solu-Medrol when used as a pulsed medicine. So in a couple of ways Acthar is a substitute for Solu-Medrol. But because it has just about the same side effects it also isn't intended to be used as a regular treatment medicine and it isn't intended to be used as a "feel good" medicine just like steroids aren't.

Solu-Medrol or Acthar gel or other steroids aren't the right medicines to do what it sounds like you are wanting them to do. They have serious side effects and aren't likely to improve your function or make you feel better.

Since you are already on Tysabri and Ampyra you are already on the best medicines available that are approved by the FDA for MS and have a track record of improving function.

Has your neuro referred you for physical therapy?

[Echo2099]

Thanks for your reply

Thank you for your reply. While I did know most of the information you provided, I was not aware of pulse steriods, but frankly, pulse doesn't sound any better than the infusions.

In the last eight years I've had steroid infusions twice. I did not enjoy either time. I am trying to avoid using steroids at all and do not use them as a 'feel good' solution, but rather as a means to expedite the end of a very troubling relapse and a return to my 'normal' state.

I will talk to my neuro tomorrow, as I am wondering if this 5 month 'flare' is not a flare at all, but rather a shift to Secondary Progressive MS.

Thanks again for your reply and the great information!

[Fed Up]

MSer102, thanks for such an informative post. fed