CLIPPERS: Looking to connect with others

@donnyboy I want to make a big clarification to my last response to you!! Where I said, “we can’t believe everything that is said on Mayo Connect.” Big mistake. Of course, we can believe what is said on Connect. But there are some ‘old wives tales’ or strange things that worked for one person, but there is no scientific proof to back it up. We just have to watch what we say and read. Believe in the science.

Dr said that the reduction of shoulders be making my symptoms worse. That 46 lh is still a large dosage.
I have been keeping a journal of how I feeling and the dosage I’m on.
It solid be me just have withdrawal or effects from my lung surgery a couple of weeks an ago. I doubt it is the later.

Thank you

@becsbuddy
Yes, there is the need to guard against embracing an old wives tale or extremely unique treatment. There is also the need to not pick up on something posted in just a single post, without going back to the poster's previous posts to understand the context and meaning of their post. This reminds me of politicians who highlight something an opponent once said, while ignoring the context or question that gave rise to the opponent's statement. What is posted on Connect needs to be evaluated and this takes time and judgment.

No, they have been cutting it 5mg a week.

@jamie72 45mg is not a high dose in an hour. I’ve taken 60mg with no problems, except insomnia. It very possibly could be effects from your lung surgery. Your lungs may not be fully recovered and now they’ve been hit with prednisone and all its effects.
Do you have a therapist that you could talk to? Check with the hospital, where your surgery was done, for recommendations. My therapist, a the time, told me I had suffered a major trauma and I needed to work it out. With her help, I did, and finally came to accept my new normal. The new normal is difficult for me, but there’s nothing i can do about it, so I just keep on keeping on!
Can you picture your new normal? And add in the things you like to do, but are hesitant to do so?
Can you ask your doctors to explain Clippers, fully, and how it might affect your life?

Hello fellow Clipperati/Clipperheads:
To backfill, I have been on prednisone for 14 weeks and Cellcept for 9 weeks. Per my doctor’s instructions, I just reduced my prednisone from 40mg to 30mg on July 30th. A few days after reducing to 30mg, I started having slight twitching in my left eye. It only lasts a 10 seconds or less. It stared with about 1x per day and is now multiple times per day. The intensity and duration have stayed about the same. I have read some posts that other have experienced nerve stuff in their face. Has anyone experienced eye twitching? If so, please tell me about it. Thanks. Kristy in Oregon

@kristyinoregon If this is something new for you and you have other strange things happening, you’ll want to let your doctor know. Clippers is so different for everyone. It could be a lower prednisone dose, or a CellCept reaction, or nothing at all. But check it out! Maybe you could monitor over the weekend and if you’re still concerned, call your doctor. But, right now, watch a good TV show or read a good book and get a good night’s sleep.
What do you think the doctor might say?

Hello Becky,
Thanks for the “hug” and your response. Yes, it’s new and I did send a note to my neurologist, ahead of my already scheduled appointment on this coming Monday. I am not sure what she will say, but I started tracking frequency, intensity, time of day. It is still quite mild, and I am thankful for that. Hopefully it will not get worse. I actually have a number of questions for my doctor. I am hoping she has answers. The effects of CLIPPERS are so varied; I wish there was a “What to expect when you have CLIPPERS” book, but suppose since the T2Flair (lesions) are spread out in the Central PONS, the variation of symptoms/effects are infinitely larger than a crapshoot. I am really looking forward to my next MRI. Last time it showed nothing new, a pause in progression? Hoping to see if the Prednisone is actually healing, as I have read it can do. I am hopeful.

Well my trip to the rheumatologist on Aug 9 went about how I figured. He said the neurologist had me on the right medication. That unless the biopsy of my lung showed something, there was no need to come back to see them. He will be in touch with the neurologist.
Next up is an MRI on Aug 20th.

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.