CLIPPERS: Looking to connect with others

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.

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.

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.

Hi Jess
So sorry to hear about your struggles. I’m 1 year into this bad boy. I’m still tapering off my steroids currently at 9mg with a side dish of 1g of Myfortic 2 x daily. I to thought my progress was very slow and I was incredibly frustrated however my physio did keep asking me to remember where I was to now. It’s a long hard road as u know but it’s great you have found this wonderful group of people. They were a life saver for me. I’m getting there slowly but steadily. Back to work although not to the same capacity I was previously. I drove for the first time today without any issues.
As you said it’s a slow recovery but hopefully doable. It sounds like you’re on the right track. Keep ahowld and anything I can do to help please let me know

All the best

Dusty

@jcu As a fellow member, @dustymi11er ,would say, “welcome to another clipperati”! I’m sorry that you’re dealing with this. It’s not fun, but its do-able. And you can do it!!
What speciality of doctor are you seeing? I just worry that you’re not on immunosuppressants, like CellCept or Myfortic. The fact that you’re having trouble walking really means you’re not on adequate drugs.
As for being back to normal in a few months—I’m in year 6. Most people would say that I’m “back to normal”, but . . . . I use a cane when walking and many days I don’t drive and always need a nap.
Can you ask your doctor about the immunosuppressants?

Mayo Fl diagnosed me 12 years ago, was put on pred and have remained on it since. It was supposed to, hopefully, be a firewall, forget it. I started out using a cane and am now in need of walker/transporter/wheelchair. No doctors in AZ, as far as I know. I have called several, and I just get a puzzled response. "What? CLIPPERS?" No alternate meds suggested. Stone wall. My NP has no idea, a local neuro was same, as was the Mayo neuro in Scottsdale. I am just floating here, dizzy and bloated. And, yes, pretty much defeated.

@liztbnr Oh, gracious, I can’t believe that you are unable to find a doctor! That’s terrible! Here is a link to an organization that collects info/resources on genetic and rare diseases. They have a section on finding a doctor, so please try calling them.
https://rarediseases.info.nih.gov/contact/
And you’ve been on prednisone all these years. A good doctor will help you taper off the prednisone and get you on a safe immunosuppressant . I have my ups and downs, but really, I’ doing pretty well on Myfortic, an immunosuppressant, and lo dose prednisone.
I’ll try to send you some articles on Clippers. This article is really excellent. https://nn.neurology.org/content/5/3/e448. Read it and let me know what you think.
Do you have a plan going forward?

I have zero plan because no medical folk in Tucson were knowledgeable of or willing to explore options. Not even the Mayo in AZ were interested. I could weep at how alone I have felt. I have been on my own, doing the best I could, hating my downward spiral and increasing dependence on my husband and friends. Thank you a million times for helping me see maybe a tiny light at the end of a dark tunnel. Liz

@liztbnr, it can be so hard to advocate for your care and find a doctor who will work with you. You're alone in all this despite have the support of your husband and family. You don't want to be a burden. I get that.

I agree with @becsbuddy that the article she shared is excellent:
- Effective treatment of CLIPPERS with long-term use of rituximab https://nn.neurology.org/content/5/3/e448

Becky, I know that, like Liz, you had a long road before getting treatment that helped. Did you bring articles like this one to your doctor to help advocate for your care?

Liz, might sharing this article with your doctor open a new discussion about treatment options besides prednisone?