CLIPPERS: Looking to connect with others

@vlazorenko You’ve said that you take lots of supplements. Do your doctors know? I advise you to let your doctors know of everything you take. If there is ever a concern with your health, you don’t want to find out that your supplements are to blame. I’m not saying that you’re wrong just be cautious and safe!

@becsbuddy Hello. Yes, of course, my doctors are aware of all of this. I’ve had a lot of different tests done, and it seems that everything is normal. However, I can say that this therapy has kept me — and is still keeping me — feeling well, but the MRI did show inflammation. I will be visiting the Mayo Clinic again next week, and although I will not be having an MRI, perhaps we will decide something regarding treatment.

@vlazorenko

Thank you for sharing. Hoping to hear that you are in long lasting remission.

I have similar symptoms post stem cell transplant for scleroderma, that have not been diagnosed yet with any specific neurological condition. Considering following your supplements chart as a starting point. Please keep posting your experience. Best wishes

I have similar neurological symptoms of dizziness, off-balance, weakness, some episodic double vision post stem cell transplant for scleroderma, which was administered with chemo/radiation and high-dose steroids. I have not been diagnosed yet with any specific neurological condition. At first, it was considered post-transplant fatigue, which was supposed to correct itself with 6-12 months. My symptoms are only getting worse 14 months post-transplant. There must be a reason for that. It looks like I have long-lasting post-transplant neurological deficits.

How does the CLIPPERS start? Did anyone have chemo/radiation before CLIPPERS started? Any insights are appreciated.

@altabiznet I can only speak from my experience — CLIPPERS started suddenly for me with dizziness, then double vision and coordination issues within a few days. I never had chemo or radiation before it, so in my case there was no connection. Wishing you the best and hope you get clear answers soon.

@altabiznet Clippers has no set ‘beginning.’ I think everyone of us has had a different journey including those in the Facebook group. I did not have any of the same symptoms as you have mentioned. Have your doctors brought up the idea of Clippers?
I am going to ask @loribmt, one of the mentors, if she can better answer your questions.

Hi @altabiznet My goodness, you’re certainly having more than your share of medical experiences! @becsbuddy tagged me into the conversation as the mentor for the Bone Marrow/Stem cell transplantation support group. I’ve read through a number of your replies to see you’ve had an autologous stem cell transplant, ASCT, using your own cells. This was done in an effort treat your autoimmune disease, scleroderma. ASCTs are really finding a footing in helping to reverse many autoimmune complications.

But I’m really sorry to hear that you’re having continued neurological issues along with fatigue. While it’s pretty common for fatigue to hang around for a couple of months post transplant, recovery from an ASCT generally improves rather steadily. What do your blood numbers look like? Has your red blood count/hemoglobin returned to normal?

The neurological issues are really troubling. Initially most chemo will cause a little peripheral damage with possible brainfog, neuropathy in the legs, feet, sometimes hands. But from my own experience, those symptoms seemed to slowly pass within several months.
I will share that I had an Allogenic stem cell transplant, using matched unrelated donor cells (MUD) for acute myeloid leukemia almost 7 years ago. Six months post transplant I developed odd sensations in my legs and butt. It started in the ‘saddle area’ of my body, spreading to my legs and feet. I ended up losing all sensation from my waist to my toes and was rushed back to Mayo.
Testing showed that I was having an atypical graft vs host disease reaction. The new immune system with its aggressive stem cells were attacking my spinal cord. Various tests were done, including lumbar puncture, 3 hour MRI (most fun) and neurological tests. Results showed severe inflammation on my spinal cord eroding the myelin sheathing. I was put on 1000 ml IV steroids daily for 3 days until my liver balked at that. Then lowered to 500 ml daily for several more days. Back home at my infusion center I received 500ml twice weekly, tapering over 9 months.
I also had 4 infusions of Rituximab the first month! The inflammation on my spinal cord was due to an attack by B-cells. Rituximab is a strong anti-inflammatory drug used for calming B-Cell reactions. That was 6 years ago and I’ve not had another attack. It was a miracle drug for me.

Because you had a transplant using your own cells, you won’t have GVHD issues. I only mentioned my experience because in one of your other replies in the forum you had said your doctor is considering Rituximab treatments. From my personal encounter with the drug, it was fantastic! I had no side effects except with the initial drip. And that is very common! I was told to expect a reaction but that the infusion teams are prepared for that with steroids and Benadryl that get dripped into the IV. Worked like a charm.

Have your doctors determined the culprit behind your neurological symptoms? Has there been a lumbar puncture or MRIs of your spine/brain to see if there is inflammation or demyelination of your spinal cord?

Good to see responses regarding CLIPPERS. I too have had it for 4 years and I believe that there is little response on this site because it is so rare. I have been getting daily comments on this site but seldom references regarding CLIPPERS. Today was a good day for people making comments on CLIPPERS. I take 20 mg of prednisone to be functional. I know I will never be the same as before I came down with CLIPPERS. Glad to be alive!

@loribmt
Thank you for your response. It is very helpful for me to have a confirmation that Rituximab may work on neuropathy, which I think I have to deal with at this time, in addition to scleroderma progression.
What was the dose of Rituximab used during first 4 infusions? The standard dose in RA is 1000 mg given twice two weeks apart every 6 months. You had 4 infusions - was it four times 1000 mg? Please share, if you still have this information.

The ASCT for scleroderma (at Duke) did not work at all and I am progressing now. This is not a surprise, as these older procedures developed before CAR-T therapy rarely work.
My neurological symptoms started similar to yours, at around 6 months post-transplant. In my case of autologous transplant, it should not be GVHD, but that what it looks like based on all symptoms present. My case is different, as I already have autoimmune condition, which turns my immune system on my own body. This case can also be autoimmune neuropathy triggered by my own immune system coming back "online" post complete wipe out done by the transplant. I did not have any neuropathy before the transplant.
In any case, Rituxan is now being used for scleroderma, which is my main indication. Looks like the way to go is with Rituximab. I am also starting Myfortic, a cousin of Cellcept. Both are used for scleroderma and autoimmune neuropathy.
I will see a neurologist soon to go over my neurological symptoms and to do additional tests. These symptoms can be both post-transplant complications and disease progression. I will keep posting my further experience.
Many thanks for sharing! It has been helpful, as always.

Hi @altabiznet I checked my records but can’t find the actual orders for the Rituximab dosages. But I received one infusion weekly for four weeks.
Right after I was admitted back to the BMT floor at Mayo, my transplant doctor was there to meet me in my room along with another specialist whom he’d called in. This was a neurology pathologist who specializes in movement disorders and autoimmune neurology. Between the two of them they came up with a diagnostic plan for testing and then met back a few hours later with the diagnosis and treatment. It was a whirlwind for sure.

The rituximab was started a week after my release from the hospital when I could return home. Within that first 3 days on the 1000 ml Solumedrol in the hospital, I was able to actually walk on my own again with a walker. By the end of the week, I was back to walking solo several miles daily around the clinic. My follow-up treatment besides the steroids (500 to 250 ml weekly for 9 months) was the Rituximab for the next month. With combination of those treatments allowed my spinal cord to fully heal. I had PT to help regain core strength and gait improvement.

For a several years I had what I referred to as ‘electric days’ where I’d have some zaps and tingles. But subsequent MRIs showed no new activity so that was awesome! Even my doctors had said, if they hadn’t seen the before MRIs to compare with they would never know the extent of the damage without comparison. So I was really lucky. Sorry, that’s more than I usually share.

I don’t know where you live but if you’re interested in a 2nd opinion from a specialist at Mayo, it would be worth the trip.
Here is a link for requesting an appointment: http://mayocl.in/1mtmR63

Have you been working with neurologist since all of these symptoms started? What testing have you had in relation to your neurological symptoms?