CLIPPERS: Looking to connect with others

https://connect.mayoclinic.org/member/00-2c187528c8b85f9a269893/
Hello Ame,
I am sorry I have taken so long to respond. I really appreciate that you have taken the time to respond to my post. The reason you didn’t find anything about my “lung surgery”, is that I haven’t had that, thank goodness. I think that was Jamie, but not certain. So hard to keep track of who said what, but it is great to hear others questions and experiences.
Thanks for your question about your taper being 5mg per month. I wonder if that was based on the severity of your symptoms? Did you ever have a prednisone “infusion”. Seems that a lot of people had an infusion to start with, we’re those people in the hospital when they started treatment? I was not, and did not. I wonder if an infusion would help. Maybe a big push?
When all this started for me, I was still teaching, barely managing, and my student teacher was basically running the show. Thank goodness. I was so glad to get her through her program before I had to dive out. She was then able to take over as a emergency substitute teacher. Less impact on the kids when the sub is familiar with everything. Whew! I stopped working when the doc said I could not drive due to my vision episodes. They were sporadic, can’t imagine seeing that all the time.
Another couple of question…. Is your Rituxan every six months an infusion? What does that look like? Side effects?
So glad to be talking to you, I don’t see/hear of many who have gotten back to “normal”. And I haven’t gotten a good sense of an average time of “remission”, before symptoms return. I am curious about that.
Oh, can’t imagine working on a book right now, but maybe if when I get my brain back on track. It’s an intriguing thought.
Thanks for your time. Take care.
Kristy.

Hello https://connect.mayoclinic.org/member/00-1e38b4beb9f711b8396717/,
Interesting you metntion that book. I had just read it a few days before your post. I found it on Amazon for 99cents. I thoroughly enjoyed Bill’s openness in sharing and his sense of humor. Thanks for sharing it with the group. 😊

https://connect.mayoclinic.org/member/00-2c187528c8b85f9a269893/
Ame,
Oh, and I just realized that you (and Jamie) were stepping down on Prednisone by 5mg per Week, mine is 10mg per Month (started at 60), which is much slower. So, that seems ok an ok pace.
And, I will shift downto 20 msg on the 30th of August. I will have an MRI on the 8th. Hoping for any visible improvement on the images. None so far. So, I am ready!

Jamie,
Thanks for your response about your prednisone taper. Mine is 10 per Month (started at 60 in May) not weekly, definitely slower.
I can definitely relate to the not driving and the heaviness, especially in my arms, with varied severity depending on the day. I also trip when nothing to trip on…..like my foot/leg does not lift high enough before it lands again, causing me to stumble forward. Again, this varies day to day, some days no trips, other days multiple. Weird.
Are your vision difficulties sporadic or constant? Mine were sporadic. I was unable to drive from May 2nd to July 8th. Felt like forever. It is best to be safe, but it felt like forever! Hang in there. Hopefully that symptoms will fade with continued treatment.
Take care. Kristy

Sounds like a lot of imaging, but so good to hear that there was some improvement. Hopefully you will hear from your doc and get more details soon. 🤞
Kristy

So far I’m not having any vision issues.

My husband spent 54 days in MD Anderson Cancer Center in Houston and was diagnosed with Clippers in March 2023. He went cross eyed, couldn't walk, sit up or hold anything. He had tremors every 2 minutes for as long as he was awake and could not talk or walk during those times. They would last 15 seconds They started him on 1000 mg of prednisone a day for 7 days then started tapering off weekly every 7 days. He had been completly off of predinsone for 10 months and he could feel symptoms coming back. MDA told me today to find a neurologist to treat him they were a cancer hospital. I live in Houston. Everywhere I call, the person who answers the phone doesn't know if the docor has ever heard of Clippers. I don't have the energy and time to run and waste dry runs to doctors who have not heard of it. Could you all tell me what state you are being treated in?

@jimbontexas I am sorry to hear that your husband isn’t doing well. At the beginning with this disease, there are lots of ups and downs. You might call one of the following organizations for a doctor recommendation. Call:
NORD. National Organization for Rare Diseases. https://rarediseases.org/
GARD. Genetic and Rare Disease organization. https://rarediseases.info.nih.gov/
These 2 organizations keep lists of physicians who deal in autoimmune diseases. You want to ask for neurologist or neuroimmunologist . Just take the names, make an appointment and then, ask the doctor if they are familiar with Clippers. A good doctor will tell you that they will study up and talk to doctors who do know Clippers. It’s a difficult disease but most people are doing OK once they get the disease under control. Are you willing to drive a distance to see this doctor? You can also ask if the new doctor would be willing to work with a local doctor? I only drive to Denver every 3-4 months. The rest of my doctors are this town.

For what it's worth my neurologist is Dr. Alexander at Scripps here in San Diego. He's brilliant.
From everything I've read, CLIPPERS recurrence is very high without ongoing immunosuppression. When Jim was tapered off the prednisone, he should have been put on some other regimen. There are several drugs, appropriate in different situations, including Rituxan (also called Rituximab or the bio-similar Ruxience) which is a monoclonal antibody therapeutic that's given my infusion and Azathioprine, which is an organ-transplant rejection drug that's a tablet given by mouth. These have side effects but they are generally fewer than staying on Prednisone a long time. It's important to remember that we're not doctors here so we can't tell you what you should do, but we can offer info and ideas for what to ask your doctor about. You'll want to ask what ongoing immunosuppression medication he should be receiving, if he's been tapered off Prednisone completely. And if his symptoms are acute, you can ask if another prednisone pulse would help bring him back to his baseline. This is not ideal, as he will have to taper off the pred again, but if his symptoms are severe you could ask about that - especially since it seems as if he tolerated it well and it brought relief last time. Again, we're not doctors, so the first step is to get him a good neurologist. I hope Becky's links will help you in that endeavor. Best wishes to you and Jim.

Hello all, Well I started my Cell cept about 3 weeks ago and had to stop today. sad day. too many side effects. balance got awful, felt like I was in a tunnel and could not focus. I work as a semiconductor tech. its a pretty physical job. so I cant have any of those side effects. still at 30mg on my steroids. I'll have to figure another treatment plan with my doc. I'm a pretty tuff old guy but this whole getting your meds right and not relapsing is getting old. lol! Ive only been doing this since April. I give all you Clippers patients that have been doing this for a while much credit. thanks I just had to vent.