CLIPPERS: Looking to connect with others

Evening all,
back in the ward after a bit of a stumble with my medication. I Was diagnosed with this belter earlier June after a week in hospital getting steroids for 3 days drip and then 60mg oral a day. my symptoms have been double vision, walking and gaite bad, a horrible wet feeling on the left of my face, trouble eating or drinking and swallowing, and hiccups. I was allowed home after a week and recently have started to cut down on my preds but haven’t coped to well. Went from 60mg to 40mg with a new immune suppressant myfenax to start at 500mg. Bloods every 2 weeks and down another 10mg on the pred if all is well every 2 weeks and up on the myfenax until stable on 1000mg and 20mg pred. Got to 30mg pred and 750mg myfenex when symptoms started returning. Walking with a stick ok still, swallowing is worse and dizziness returned quite bad but not double vision. Sorry for the long story, I’ve nothing to do on the ward and I ain’t paying £10 a day for rubbish tv 😳. Question b4 I see the consultant, do you think I’ve came off the pred to quickly, seems most come off 5mg or 2.5mg at a time. 20mg in 1 leap seems abit steep. Thoughts and questions most welcome. Have a good night

@dustymi11er oh, I’m so sorry that you’re in the hospital. This AD can be a real puzzle to work with—I still feel that way. One day you’re fine, or think you are, and the next day, you’re back to square one. And then, you’re supposed to taper the prednisone! Aaagghhh. A prednisone taper needs to be slow and steady. Your body needs time to adjust to each reduction in dose. I learned that the hard way, like you. I’m now reducing by 1 mg a week. It’s much easier.
Yes, talk to your consultant. They aren’t the ones taking the steroids, you are! Be your own advocate!
Be sure to let me know how things go.

@dustymi11er Here are some good articles to read. Most of the info is over my head, but . . . .
https://nn.neurology.org/content/5/3/e448
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6410928/
I met with my neurologist’s assistant today and she agreed that some people can taper steroids quickly, but for others, like me, slow is the way to go. Just speak up with your consultant and the taper is too fast.
Try it!
I responded to you on the Fb group today, Graeme!

Hi all. That’s me back home. I got my mri results and they showed a massive improvement. Still a way to go but shows the meds are working. I’ve upped my myfenex to 1000mg day and night and we’re going for 30mg pred cut down 10 mg a month until at 10mg then see where we go from there. Hit the specialist with a number of alternatives which he is going to have a look into especially the cytoxan and immuran as well as the . Will see how I get on with the myfenax over the next few months. Thanks again for all the help and support on here. You’re all been great 👍

Keep up the good work Ame. Great to see you’re doing so well. Keeps me in the fight 💪😬

Greetings All! Ame here. I have been steadily continuing to improve over the past 5 months so ... no news is good news! Graeme, how are you doing? I believe you're done with your tapering by now but for anyone else reading this, my taper was super slow - I will look it up but I feel like it was 5 mg per week. I was kind of shocked that they were taking you down 10mgs at a time. Pred is so powerful because of the systems it affects so as you come off of it your body has to swing back into action. It's not just the lack of medication, it's the need to restart systems that have been dormant (not making cortisol). Anyways, as my year anniversary arrived this year I found myself quietly celebrating my "Alive Day" - March 17th. When I went into the hospital on March 16th, 2022 things didn't look good. I'll never forget the feeling of waking up to the morning bird chorus outside my ER room the next morning. There were rough times but now I'm finally running again, working full days, and so grateful to be back to normal pretty much. I was wonderfully encouraged through this terrifying episode by the little tidbits I found online from other patients like you all and I want to be a beacon for others. I have NOT managed to fill in my blog much (LOL!) but still plan to. I want to make some short videos about how I managed the psychological challenges, how I lost the 10 lbs I gained on Pred, how I managed the medical appts., what worked, etc. so hopefully I can provide those updates over time. I was very lucky to have no pain or nausea the whole time - mostly just a really messed up brain and cranial nerve involvement (couldn't see or walk properly, fatigue, trouble swallowing, severe brain fog/fatigue, numbness in all sorts of places). Today, just over a year later, I have a bit of face numbness and a little collection of symptoms that I believe are lingering Prednisone side effects but nothing unmanageable. In fact, my whole life is better because I let go of so many things and (mostly!) stopped stressing. If you've been diagnosed with CLIPPERS or are wondering if that's what you have, know that there ARE people who have recovered. It is super rare, but that doesn't mean it's deadly or untreatable. For many months I barely felt stable enough to be away from home all day but I've just returned from a 9 day trip to Mexico and had no issues. Hooray! Hang in there.

Becky, how are you doing nowadays? Any updates? I had a Rituxan infusion in December and am currently not on any meds (done with the prednisone). I'm due for my next Rituxan in June, only it will be the slightly different Ruxience instead. I'll keep everyone posted. I believe the only Rituxan side effects I've had are (ironically, since it's an arthritis treatment) sore joints. Really quite sore shoulders, elbows, hips, knees. I found that yoga helped tremendously - better than taking Advil or Tylenol for some reason. I did have one small reaction (itchy ears - lol) to my first Rituxan dose but the nurses were very proactive and none of the several subsequent doses have had any issues at all. The list of side effects for Rituxan is truly terrifying but I have had no problems with it whatsoever and my neurologist said that my brain looks "beautiful" on my last MRI. I have residual gliosis (a fancy term for scar tissue) but that's it. If it's affecting me, I'm not aware of it. So, I'm happily turning into an old timer like you! I'd love to know how you are doing when you have a sec.

@astanko How wonderful to hear from you and know that you’re recovering. I’m not doing as well. I start to recover and then I get hit big time. Maybe it’s just that I’m much older than you! I was sick most of the winter because i had a major reaction to mycofenolate It was diarrhea that happened all the time. Lost 20#. So now I’m on mycofenolic acid. While they were trying to figure out what was wrong, they diagnosed another problem—pancreatic enzyme deficiency so I got to add more pills to my daily hoard! Not going to start tapering until we return from several family trips.
I tell you, I don’t know how I would have done this without my husband!!!!
Will you keep me posted with your good news?

Oh dear, I'm sorry to hear that you've been so ill but it's good to know that your husband is there for you. I looked up that condition and gosh, it sounds like it could happen to anyone. I'm going to go fill up my water bottle right now! Hopefully with treatment it will improve. I will indeed keep you posted. Thanks so much for all you do for the hapless souls like me who end up here. Your calmness and experience in sharing great info has no doubt been a tremendous help to many of us.

Hello, Jessica here. I got diagnosed with CLIPPERS back in Nov of 2020, so I am going on two and a half years. I wish I could say I have made a full recovery, but unfortunately that has never really been the case. My tapper was slow because if I started coming off it to quickly everything would just start right back up. I am currently down to 2.5 mg (YAY!!!). My MRI'S have shown little to no change in the past two years, but my current dosage is keeping things at bay. Currently still having trouble walking and I completely loose control of my left leg multiple times a day. Falls have become a normal occurrence. My doctor is looking into if CLIPPERS isn't masking something else. Has anyone else had this scenario? I keep hearing about how people are "back to normal" in a matter of months, and I wonder if I am not strange. I don't mean to sound negative, I love to hear from everyone.