Second Opinions

[Will]

Bill, good luck with the Azathioprine. My local neurologist "presumed" I had CLIPPERS and I just received a second opinion from Dr, Arun Venkatesan at John Hopkins University in Baltimore that agrees.

My current treatment is every 4 weeks, 2 days of 750mg solumedral then 2 days of 500mg solumedral. This works okay for me, I'm used to it. Dr. Arun is suggesting a change in the treatment and it has me scared. Although what is suggesting is typically the norm.

"A reasonable approach would be to initiate 60 mg of prednisone after his next steroid infusion, to maintain this dose for 2-3 months, and then to attempt to taper down by 10 mg monthly until the lowest effective dose is reached, as determined by close clinical and radiologic assessment; during this time and thereafter, monthly steroid infusions would cease. Once the lowest effective dose of prednisone has been determined, I typically try to introduce Imuran or Cellcept, in an attempt to further reduce the steroid dosage."  

My gait and speech have been effected and work and driving are difficult.

I am glad you have this place to talk about what is going on with this rare and strange neurological condition.

[Will]

I'm starting third week of 60mg oral Prednisone and so far not so bad. A few side effects - lost libido, tiredness in evening, sleep interruptions, mild bloating feeling and a little rounding of the face. Easy to deal with. My balance and speech is not improved but not getting worse. I'm so glad I live very rural because driving around city traffic might be a problem with speed coordination.

What I can't know yet is what is part of the underlying CLIPPERS process and what is the result of the high steroids. I see the neurologist on Thursday but am expecting a simple office visit. Recent MRI showed no new enhancing lesions, maybe a slight improvement over 6 months ago.

I still feel "drunk" or loopy all the time. Better the the alternative.

[Kevin]

Will, some of your symptoms are very similar to me.  You may see more retention of water as your body gets use to the high dose of prednisone, seeing more puffiness in your cheeks and stomach.  

I wanted to touch base with you regarding the cellcept.  I also took cellcept with my prednisone over a year ago.  As I came down on the prednisone, under 20mg, I had a flare up.  I had to do the solu medrol infusions again, and right back up on high doses of prednisone.  This flare up was rather caused by coming off the prednisone too quickly (2.5mg every two weeks - when I was at 20 mg), and/or the cellcept was not doing it's job.  With help from the Mayo Clinic, it was recommended I take methotrexate with the prednisone, and come down at a much slower rate.  Not to trying to suggest any "right" kind of treatment.  I know we're all different and we're going to have slight variations in our treatments, but this flare up I had did more damage than we thought, and a year and a half of recovery was lost.  

With my methotrexate and prednisone things are going well.  I just had an MRI yesterday.  Results show no new lesions/abnormalties.  This has been approximately 7 months now with nothing new.  I'm at 17mg of prednisone and continue to reduce after hearing the good news from yesterday's MRI.

Kevin

[Will]

Kevin, I'm happy for you and the success of your treatment. Slow tapering seems the most successful. I am on day 40 of 60 mg a day and it is turning out harder than I though and has gotten harder. I am having real trouble sleeping. 3-5 hours a day with the help of Ambien. I made a frantic call to my neurologist asking about sleeping strategies this morning. Still waiting for a call back.

Potentially another 50 days at this dose and I heard from Bill that the sleeping disruption can last till I get below 30 mg a day. I could be struggling for 140 more days. Given a positive outcome. Do you have any tips for sleeping? I've been only occasionally been able to steal an hour long nap.

Will

[BillCrum]

I think these steroids affect different people in different ways. My sleep disruption was incredibly regular (as in the same every day, rather than normal!). I would go to bed at 11PM then be wide-awake between 4AM and 5AM and not go back to sleep. In the end, I gave up trying and used to go downstairs and catch up on a movie until it got to a more reasonable hour. I was lucky in that I got just enough sleep to enable me to function during the day.

Like Will said, for me the threshold was around 30mg Pred when I started to sleep better, but your mileage may vary!

Best Wishes

-Bill

[donna]

i first got sick in oct.12. was up and down with steroids untill a brain byopsy in feb.13 finally got diagnosed.with clippers .at the university of colorado hospital.my treatment is cellcept 2000 mg daily along with topomax,gabapentin,for sezeurs high blood presure meds and bactin to prevent pnomonia caused by the cellcept an immune suppresent .    so far so good  i turned 50 in feb. hope to see 51