Has anyone ever gotten worse on steroids?

Hi group !

I'm doing Solu-medrol iv every three weeks and it's not helping, at all, as a matter of fact I think things are worsening. Has anyone else in the group had this experience? Hope you all have a great day !

Well to tell you the truth I can't tell one way or the other whether they're working or not, but I'll still keep taking them until I talk with my neurologist. Gary

IV Solu-Medrol is a very short-acting corticosteriod, so you are getting a quick boost, then a fairly rapid trough. In the hospital, Solu-Medrol is given IV every 6-8 hours for acute conditions and disease flare-ups. Your dose is also a factor- the frequent doses descibed above are usually 125mg or so.

Perhaps another option is intermediate-lasting (2 weeks+) IM injection of a corticosteroid such as Kenalog. Discuss this possibility, including pros and cons with your doctor.

I've tried various gluco corticosteroids like solumedrol/predinosone/methyl predinosone/dexamethasone & various immuno suppresant drugs for my neuropathy issue for the past 2 yrs. In my true experience it just gives a patient some sort of temporary comfort only till we complete the course. Its very useful for Gullian Barre manifestations and not for any other kind of neuropathy. The major challenge in treating CIDP is finding the root cause of the issue and many doctors are treating neuropathy patients just symptomatically and they are not able to address the root cause issues. This has been widely accepted universally by many top neuro folks.

Unless the root cause of the problem is determined steroid treatment will be of no use since it doesnt treat the cause. You need to closely monitor all parameters while taking steroids.

Well, when I was first diagnosed, my neurologist started me on what I later learned were very high doses of prednisone - 60 mg a day. I still went down hill pretty rapidly, and eventually wound up in the hospital again, unable to walk. He eventually switched me to IVIG, and I am doing well on that.

My interpretation was that the prednisone just didn't help me - I am one of that group for whom it just doesn't work, for some mysterious reason. I don't think it hurt, because I was already relapsing, but it didn't help, either. If there is anything I have learned about this mysterious disease is that everyone is different.


Prednisone didn’t work for me either. I too wound up in a hospital unable to walk. Solumedrol didn’t help me as well as IVIG. IVIG has basically just kept me from getting worse. It sounds like many of you who are also adding an immune suppressant drug in addition to the IVIG are doing better than the IVIG alone, but my blood work showed that I wasn’t a good candidate for that. Too much cancer in my family.

thanks for sharing.

My Neurologist has not given me Solu-medrol..yet. However, I do know that some of these drugs are not fast-acting; takes weeks and even months to notice a diff, according to my doc.

I've been tapering off Prednisone for a couple of weeks now (gained 15 lbs on it + blood sugar spikes). I'm down to 20 mg per day (started at 60 for 2+ months). Next week I bring it down to 10 mg. I didn't really feel a difference when I was at the higher dose- still weak....but now- at the lower dose- I have more nerve and muscle pain, twitching/tremors, pins and needles..and even weaker upper and lower body.

While tapering off on Pred., my Neuro started me on Immuran. The instructions were 1 pill per day for 1 week, then 2 for 1 week and finally 3 for however long it takes to help strengthen me or at least stop the seemingly progressive weakness. I was fine until I started the 3 pills daily. I had awful nausea, took away my appetite (that was probably a good thing), profuse perspiration; also seems to affect my breathing, as I experienced shortness of breath when I do any kind of activity. I cut back to 2 Immuran until I can talk to the doc about it. Does anyone know how long it takes for the side effects to disappear? The doc says I won't know whether or not it's working for 4 or 5 months.

For awhile I was feeling disappointed and discouraged, but I've come to accept that this fatigue and weakness, as well as pesky nerve pain, etc., may just be my "new normal." Not giving up- just coming to a level of acceptance.

Last year I was initially provisionally diagnosed as having GBS, but then after a re-lapse this was corrected to CIDP.

In hospital I received IVIG (for GBS) and that sorted me out, but after a month had a relapse and my present treatment is IV Solu-Medrol for CIDP. (Initially weekly, then fortnightly, and now monthly)

I've just been to see my doctor in the hospital for a regular check-up and she suggests I should continue with monthly infusions, at least for another 6 months, maybe for one year.

She did specifically mention that IV Solu-Medrol continues to work gradually in the body for a few weeks, which seems to differ from what some of the previous postings have stated.

I'm no doctor, so don't know if there are longer acting versions of IV Solu-Medrol, but that's what she told me, and it's working for me.

I'm now to the point of being about 95% of what I was before starting this illness.

I understand that there are some who see little improvement in their condition, and I apologies if the posting sounds insensitive, it's not intended to be, but to give encouragement that there can be light at the end of the tunnel.

And just to add a touch of British humour, the light is the open end of the tunnel, not another train approaching!