Has anyone suffered serious side effects after ADEM onset?

I was diagnosed with ADEM in Jan 2015 and since have been impressing my consultant neurologist with the above average speed of my recovery. I was put onto a 4 monthly visit to him for check ups as he didn't see it necessary to see me on a more regular basis than that. In the last couple of months though, I have been getting stiffer and slower - not in general - just in the hips! I am now hardly mobile at all & after visits to the NHS hospitals & clinics etc (it's been one hell of a struggle to inject some urgency & speed into them!) I was finally given the diagnosis I was expecting - I have AVN (Avascular Necrosis) in both hips. Basically, the steroids (prednisolone) have been the cause of this & my X-ray & MRI scans show that both hip bones are 30-40% dead & crumbled away leaving me needing hip surgery.
I am meeting a revered hip specialist on Friday (11th Sept) and will know my fate - hip replacements or resurfacing if possible. So, my question - has anyone else had this (or other similarly bad) 'side effect' from a drug prescribed for treatment of ADEM?

Hi Louiedog,

I'm so sorry! I've had problems from the ongoing treatments of Prednisone, but it tends towards Shingles and Pneumonia.

As I understand it, ADEM affects everyone differently, and also depending on the meds, the side effects can be crazy different.

Please keep us informed of your progress.

Also, I'm going to a Myelin Conference in October. If you'll let me know what meds they put you on, I can ask the "experts" their thoughts. I want to go armed with as many questions as possible. You can message me privately if you'd like.


Hello Louiedog im sorry to hear that, my 6 year old son was diagnosed on Feb-2015 so close from you, he was on prednisalone for 6 months and now that he is off steroids he broke his wrist, he is wearing a cast, and also experiencing some headaches (SINCE DAY 1), i read that every case is different but it make sense that you have that problem with your hip because of the bones, i recomend you to drink a lot of milk ant things with calcium, i hope everything go´s great on Friday 11, keep us update, a big hug from Mexico!

First I will say no to the same side effect, but what kind of drug were you prescribed if you don't mind me asking. All my man has been given in the past 2 years is solumedrol intrevenious, 3 days in a row when it first happened and then 1 day treatment onen year ago November.

I am sorry it was methyl prednisone. I stand corrected on what he was given

It was prednisolone. 60mg reducing to 5mg over 7-8months. I have now had all my pre-op assessments etc at hospital & have been stuck on an 18wk waiting list!!! and that's just for the RHS - it'll be another 12-16wks after that for the LHS, so worst case scenario - 7 odd months before I can walk normally and without pain! It's not so much the cocktail of drugs that get to people like me becoming depressed, it's the ongoing lack of urgency and care from the NHS.

Lotus said:

I am sorry it was methyl prednisone. I stand corrected on what he was given