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CLIPPERS: Looking to connect with others
Autoimmune Diseases | Last Active: Dec 7 10:15pm | Replies (323)Comment receiving replies
Hi Kristy. Ame in California here. I just wanted to say that I feel for you. I don't have much to add, I can't seem to find where you explained about your lung surgery and it sounds like our situations are quite different. In any case, I had most of my symptoms in my face actually. Numbness in my lips, tongue, throat (which progressed to a bit of trouble swallowing - but that went away thankfully). Lots of numbness around my head, hands, legs - and it changed all the time. But the most severely affected was my eyesight, I had complete double vision. I also had a lot of fatigue and ataxia. But I'm 100% now, 2 years later (praise be to all the gods, goddesses, lucky amultes, etc).
Also, when I did my taper it was very, very slow. Stepping down 10mgs at once seems fast, I think mine was 5 mgs a week while watching for symptoms. It felt like it took forever but it worked. I'm just on Rituxan/Ruxience once every 6 months.
You mentioned that you wish there was a "What to expect when you have CLIPPERS” book". We should write one! It'd be at least something. When I was diagnosed all I could do was frantically scour the web trying to figure out if I was dying or WTH. This is a project I've thought about quite a bit, but so far, since I recovered I've been too busy with work (I am self employed). BUT, the idea is a great one.
Best wishes to you.
Replies to "Hi Kristy. Ame in California here. I just wanted to say that I feel for you...."
I also tampered down 5mg a week to currently at 40mg a week. Other than the vision part I have pretty much the same symptoms, I’d be happy to just start driving again, haven’t driven since middle of June. Arms and legs feel heavy and not 100% responsive.
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.
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!
Connect
@astanko @kristyinoregon
Ame, Kristy,
You may know about it from a Connect post I read some time ago, but in case you don't: There is a book about Clippers, namely A Book on CLIPPERS, by Bill Crum, available via Amazon. The first chapter of the book, starting with his personal experience, is entitled Double Vision. Definitely worth reading.
Don