CLIPPERS: Looking to connect with others

Time will tell, I will see when neuropathy kicks back in hard. My gp and I are experimenting with dosages.

Ian not familiar with CLIPPERS. I’ll have to research it. But I also have an orphan condition that sounds similar. I have P.O.T.S. It has worsened. I am unstable when I walk. Heart rate is elevated. Tremors build until I am a trembling mass. Finding support, a chair to sit or a wall to lean against helps. Doctor, cardiologist, has me on Propanfanole. Last night I experienced a new phenomenon. It is hard to describe. Best I can do is to call it inner tremors. Not heart racing. Just a sense of trembling with no exterior manifestation. I wonder if anyone else has had this experience. What, if anything, has been suggested?

So very sorry for your mystery illness. I almost feel fortunate to feel as well as I do (which is comparative!). I do hope you find someone out there who can help you. liz

My medical professional knows practically nothing about CLIPPERS. Neither did the neuro at Scottsdale Mayo. So, I have been on pred for twelve years. Nine mg and seeing how low I can reduce the dosage. Cell Cept was a disaster for me, bad reaction. I was diagnosed initially by Jacksonville Mayo, but moved to Tucson ten years ago, fully hopeful I could eventually get away from pred. No such luck. This is a mystery disease that gps don't want to deal with. I'm fat and tired. I have tried on my own to track someone down who treats CLIPPERS, but no luck so far. liz

@dustymi11er
Oh, Graeme, it’s great to hear from you! I’ve been away from Connect for awhile. My mother died and I’ve been in Washington, DC. Mycophenolate is a good drug but you have to carefully watch your timing. The medicine needs to be taken 1 hour before eating or 2 hours after. Some days i go crazy figuring out the timing, but the medicine works, so…
Have you talked about osteoporosis with the doctor? It’s a major side effect of prednisone therapy, so you want to catch it soon.
We have some new members in this group and your experiences with clippers will be very helpful for them so please stay in touch with us. Will you do that? Becky
Have you been able to return to work or school?

Hi Becky
Sorry to hear of your loss hope you are well. I wasn’t told about taking my tablet before or after eating so I’ve been taking it with everything else as soon as eating in the morning. I’ll start taking it earlier now. They also didn’t mention side effects apart from staying away from long periods in the sun so I’ll ask the question at my next appointment in January. Unfortunately I’m not ready to go back to work yet but I do feel I’m getting better regarding walking and balance. Not using my stick around the house if I can help it. You were right about it being a slow recovery ❤️‍🩹. My face is still bothering me which always feels wet on the left hand side. I’ve been given amitriptyline 2 x per night but they are doing very little to reduce the symptoms. Just recovered from my first chest infection since going on the medication which was scary but I’m pleased it happened as am sure there are a few more to come this winter. I’ll certainly be keeping in touch Becky this forum has really helped me understand it’s not the end of my world getting diagnosed with clippers.

Regards

Graeme

My doctor will not budge on pred meds, she insists I find a CLIPPERS specialist. She is wary of this disease, but despises pred. I have resigned myself to my present regime, even with research into a neuro specialist (nada).
Heel to toe was never an option for me. Envious of anyone who has this kind of balance! 🙂 liz

I know full well about the many side effects of pred, inclucing osteoporosis. Since I need cane/walker/wheelchair, all you will get from me, at this stage of life, is an eye roll. I do chair yoga and ride a recumbent bike.

Luckily, I do not work since I am retired. CLIPPERS forced early retirement on me. My husband is fairly understanding about all this, but it seems to grate on his nerves at times. I try as hard as I can keeping the place clean, luckily it is small. He is a superior cook, yay!

My English correspondent, Bill Crum, has been on azathioprine for a decade. He is monitored closely. His blog is Living With Clippers.

I am sorry about your mother's death. In my family, all men are dead by 70 (!!!) and some women live to their 90's. Sheesh...

I was on Cell Cept once, and it made me quite sic.

liz

Greetings All! I wanted to tell you that I get a daily update from this forum and I always read what you all have added. I've gone back to work full time after being unable to work for 5 months so I've been quite busy but your info and updates mean the world to me. In an attempt to share my own knowledge, I've started a blog on Caring Bridge. It's a free site and I'm still trying it out but it seems to work well for my purposes. I've taken detailed notes all along the way since I started having symptoms on Feb. 9th of this year (2022). I am in very good shape now, very actively managing nutrition and fitness in an effort to manage all of the symptoms and create the best future possible. Feel free to check out my blog, I have a plan to add a new entry every week now that it's set up: https://www.caringbridge.org/visit/myclippersadventure.

I called it an "adventure" not to minimize the seriousness of having a brain disease but in an effort to make it less scary. In a way, all of life is an adventure and all we can do is make the most of the ride. Whenever I post an update I'll pop in here to let you know.

Best wishes! ~ Ame in San Diego, CA.

Hi,
I added a new post today. After 6 months on Prednisone, going as high as 1,000 mg pulses while in the hospital, today I finished tapering down and took my last 5mg tablet. Now we wait and see if symptoms return but so far so good. I did an IV course of Rituxan in July so hopefully that will hold me over until January/Feb of 2023 without Prednisone. For now I'm just taking it one day at a time...and today I'm celebrating. Thanks for all of the info you share, we are each other's best resource with this rare disease. Keep looking up! Here's a link to my blog: https://www.caringbridge.org/visit/myclippersadventure/journal/view/id/633b4b9f8d9cce2272b1658b