August 20, 2023 at 8:39 am
Thanks for your story. I’ve been off and on prednisone for the last 6 years. For me, it has never helped, but every time I have a flair up, the doctor adds it to the regimen.
Unfortunately it added around 60 pounds, mostly in my stomach. I’ve lost 35 lbs of it so far. I should be off it by the end of the week.
I’m on CellCept as well, not sure how much it helps me. I’ve has Plasma exchange, and that didn’t help very much.
The only medicine that helps me is IVig.
It is really interesting how some medicines work for some and not others.
And, the trigger for my CIDP seems to be vaccines. The shingles shot I got in September of last year, triggered my latest episode in October….
Hope you continue to improve.August 17, 2023 at 5:41 pm
JK. and David…..
It has been a long haul. I hired a lawyer in late February and by early March the insurance “changed their minds” on IVig. As soon as I got that in me, within a week I went from a walker to cane. After the next treatment I was able to take short walks without a cane.
I didn’t return to work until mid April. The biggest problem I have is the slow return of my strength and stamina. It is mid August, and while I’ve made great strides, I’d say I’m only 70-75% back to “normal”.
Of course I have the usual burning in my feet and I’m almost weened from steroids. I was only high doses of steroids from January until June and I gained. 60 lbs, 90% of which is in my stomach. I’ve lost 35 pounds of that, which has helped as well.
Maybe by the end of the year, I’ll finally be back to as close as I’ll ever get to my old self.
Also, both my primary doctor and neurologist agree that my CIDP is brought on by vaccines, so it is now in my chart, “Don’t ask or badger me about them”. ; )March 5, 2023 at 2:57 pm
One month after the plasma exchanges, I still have numbness and weakness. I’d say I’m at 45-50% recovered, but it seems I’m stuck at this point.
My doc wanted to start Ivig this week and filed an emergency appeal with Anthem/Blue Cross and they once again rejected it as medically unnecessary.
So I finally went to see a lawyer that handled my family’s trust last Tuesday. He looked at all the rejection letters and took other relevant information and said he would call Anthem that afternoon or Wednesday morning.
Thursday morning my doctor’s office calls and says Anthem reversed their decision and Ivig infusions were approved! My lawyer said once he laid out my case, the cost benefit analysis shifted to my side. In other words, 9 other people didn’t fight their decisions, but I did. Anthem saved their money on the other 9 people and me, the squeaky wheel, wasn’t worth the fight. So, if this happens to you, make sure you fight for yourself.
Yes, it just cost me a $1000 in fees, but in the state I’m in, I’m in NO MAN’S LAND.
I can hobble around the house, but my hands are still numb enough and shake a bit that I can’t work on my vintage watch collection because the parts are too small.
I can’t lift and yard work is hard to do with a cane, when you can’t reach the ground, and you run out of energy.
Getting out of a chair is still difficult and getting off the ground, I did a test, and it took all of my strength to pull myself up and it was a close call.
With Ivig treatments, I fully expect to be functional by the end of the month. Of course, if I have the usual positive reaction. Wish me luck!February 17, 2023 at 3:04 pm
I had the first flair up in October. Around December 1st, my insurance cut off further IVIG treatments due to lack of medical necessity. I don’t think I was all the way recovered and the lack of IVIG lead to another bout in mid January. I was on Cellcept and 40mg daily of Prednisone during the period. My doctor tried 5 days of solumedrol before I went to the hospital but it actually made me worse.
I definitely think the shingles vaccine set my immune system into overdrive.
As to plasmapheresis, here’s my hot take on it. : )
-it is much more cumbersome compared to IVIG. There’s the port in the neck, there is the 5 treatments, every other day, so at a minimum you are in the hospital for 10 days. My blood pressure cratered after the 3rd treatment and I passed out and remembered waking up to 5 nurses working on me.
-where IVIG gives you faster results, plasmapheresis is painfully incremental. It is definitely working, and 3 weeks out, I’m still progressing, very slowing in the right direction.
Getting the bad antibodies out of my system is probably the right thing to do, and now it looks like my doctor has convinced the insurance to okay IVIG for 6 months, starting next week. He’s hoping these back to back treatments with their different approaches will put and end to this episode and also help alleviate most of the remaining numbness and difficulty walking.
His goal, was as well, to get me off the IVIG and have Cell-Cept be the main medicine.
Maybe that might work if I avoid any more vaccines ; )February 10, 2023 at 6:10 pm
I’m been on Cell-Cept, 2000mg for about a year. Maybe it just can’t overcome the vaccines…
I was in the rehab hospital getting PT and OT, but my wonderful insurance cut it short 5 days, so I just decided to come home.
I’m spent spiritually and physically. I can get out of chairs and walk short distances with a walker. My friends are doing my laundry and helping me where they can.
So now it is a week after my last plasma exchange. I went from basically unable to move, unable to feel touch to my hands arms, legs, and feet to regaining some mobility.
But, it seems so short of what I expected. My doc wants to start Ivig again in 3 weeks, but we have to get the insurance to approve it. I’d feel so much better if I could restart Ivig and I’d expect I would physically feel better as well.
I’m rather bummed out. I’ve never crashed this hard and have never had to recover this much.
BryanOctober 9, 2021 at 10:02 pm
for what it is worth, numbness started to creep back into my hands the day after my second Moderna shot. About 2 weeks ago I had a major relapse of my CIDP–could barely walk, etc and now am dealing with the muscle weakness and numbness and nerve pain.October 1, 2021 at 9:47 pm
Thanks for sharing on the cellcept and the solumedrol. I’ll ask him about it.
I knew I shouldn’t have gotten the shot in my heart but I let the hysteria carry me to my decision. One, at the moment, I deeply regret.October 1, 2021 at 9:45 pm
Thanks for info on Cellcept. I’ll keep in mind the lag time.September 30, 2021 at 7:19 pm
So ended up in the ER this morning. Could hardly walk. My friend had to basically walk me to the car, lifting my legs to get down some steps, into the car. Was in awful pain. They gave me some nifty pain killers, which actually help.
They then sent me to their infusion center to get my second dose of IVig. Without the excruciating pain, I could feel the IVig working. Enough so, I could make the two steps into the house, which I couldn’t do yesterday.
Even better, my doctor finally seems motivated, and we are ditching Imuran and replacing it with CellCept, which from what I’ve gathered from the forums seems to have helped a lot of people here. Additionally, IVig treatments are going back to every other week for 6 months.
I’m excited to try CellCept and hope it helps me as much it has helped others here.September 27, 2021 at 9:23 pm
What are the alternatives to prednisone. If my doctor ever responds to me, I’m going to ask about cellcept.September 22, 2021 at 11:13 pm
I’ve been getting worse. I have severe numbness and burning.
I’m already on Imuran and IVIg, so my doc has upped my prednisone to 40mg a day.
I just started the prednisone today.
I forgot how bad the nerve pain and numbness feel.
Hopefully the steroids work
As far as the Covid shot goes, if I could go back in time, I would decline the shot.August 18, 2021 at 4:46 pm
I got my second Moderna shot May 1st. Both shots gave me a run down feeling, chills, headache and so on. After the second shot, I started to get numbness in the hands, forearms, legs, and feet. Additionally my fatigue levels went through the roof and I had facial numbness and my taste was way off (symptoms I got when I first got CIDP 4 years ago). The numbness in my hands has gotten to the point that it affects my grip and walking on grass points out how weak my ankles have become.
I’ve taken 2 weeks of vacation and so far, decreased stress has helped and my Dr. has upped my IVIg doses.January 9, 2021 at 6:04 pm
When I first got CIDP, I lost my sense of taste and my face felt numb or tingled for months.If I get a bad flair up, my taste will go and I’ll get the facial tingling.January 9, 2021 at 5:57 pm
Zanaflex.January 3, 2021 at 6:26 pm
I had the same reaction when I was switched from Privigen to Gamunex. Then Privigen started to basically give me horrible hangovers and it was a chore to function for a few days afterwards. We slowed the infusion rate and it has helped immensely.