Two flair-ups since October
February 5, 2023 at 11:58 am
I went to see my family doctor in September and he wanted to give me the shingles and pneumonia vaccines. I said no, we argued for 20 minutes because he said shingles would be worse than my disease. I stupidly gave in an got the the shots.
Within a week my hands were numb and by the end of September I was walking with cane.
My doc gave 5 days of IVIg and I was good as by the end of October. I received follow up infusions until the end of November until my insurance said IVIg was no longer “medically necessary“ (we are still appealing if the decision)
I felt fine until January 10 when numbness returned. By the 13th, I needed a cane and by the 20 I could barely walk and was losing strength. On the 21st I didn’t have strength to get up.
I ended up at the ER that day and was admitted. I kept getting worse over the day and had little control over my legs, feet, hands and arms.
Yet my insurance still denied IVIg for me.
Yet they okayed Plasmapheresis. Go figure on cost analysis.
I started plasma exchange on Monday, every other day for five treatments.
I saw no improvements until the 4th treatment.
Since February 2nd I’ve been up and walking and steadily improving.
Still wondering how long the effects of the plasma exchange will last. And I would definitely feel more comfortable if I could get some IVIg infusions to follow it up.
February 6, 2023 at 11:51 pm
Thanks for sharing. I hope this gets better for you. I wish this forum was more active. I check it almost every day. I have no experience with IVIG, been just using Cellcept.
I was doing great through last Summer when I dared to reduce my dosage. Doc and I agreed on reducing my daily 2000 mg to 1500. I went to 1000 on my own and about 3 months in I realized 1000 wasn’t enough. Back at 1500 now and doing better but considering going back to 2000 mg. I’ll be monitoring and seeing how it goes.
I was going to get the shingles shot also but when I found out it was a live vaccine, I didn’t get it. I do need a pneumonia shot and will consult my neurologist. For work, I was supposed to get a Yellow Fever shot last year, but luckily they accepted a waiver. That’s another live vaccine.
Feel free to post here, I’m always checking to share conversations, experiences, and knowledge.
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.
February 12, 2023 at 9:59 pm
Hey Bryan – Thanks for sharing your experience with those vaccines. I too have been slightly pressured to get Covid, shingles, flu, & pneumonia vaccines. Hard pass for me.
I have a couple of questions. Have you just been on cellcept and no IVIG, prednisone etc.? If only on cellcept did you wean off of IVIg? Also, if only on cellcept I’m wondering if possibly your bad antibodies are building up, then the vaccines pushed your body into full on attack mode.
Is the plasmapheresis helping you regain any strength?
I currently take cellcept daily, IVIg and solumedrol every 6 weeks. Fully functional. Goal is to only be on cellcept, so we are reducing the dosage of IVIg slowly. I have minimal symptoms a couple days before infusion. Also looking in to Hizentra subcutaneous?
Hope you are feeling better each day.
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 20, 2023 at 8:35 pm
Thank you for answering my questions. I’ve always been curious about PE. Thankfully I respond well to IVIg.
February 22, 2023 at 3:55 pm
There are plenty of discussions here about ‘live’ vaccines and most can trigger GBS/CIDP. The newer technology mRNA vaccines are considerably less likely to trigger GBS/CIDP. Search by keyword to find the discussions.
A little more about PE – The terms Plasmapheresis, Apheresis, and Plasma Exchange (PE) are often used interchangeably; however, they are not the same. Plasmapheresis removes a smaller amount of plasma, usually less than 15% of the patient’s blood volume and therefore does not require replacement of the removed plasma.
PE is the procedure that is performed most commonly for GBS/CIDP. A large volume of plasma (over 60%) is removed from a patient. The volume removed is such that if it were not replaced, significant hypovolemia resulting in vasomotor collapse would occur. As a result, the removed plasma must be replaced with some form of replacement fluid such as albumin. It takes 3-4 PE’s to get out the majority of the antibodies that are responsible for the GBS/CIDP.
When I first underwent PE, I saw the plasma they had removed (I had to ask to see it as they hide it from you). I was astounded by the size of the plastic bag it was captured in, maybe 3 gallons! It was coarse looking and dark, almost black in color. After a number of treatments, the fluid was yellow and transparent.
It should be noted that PE will cancel out IVIg/SCIg and Rituximab. Ig will cancel the effects of PE and seriously reduce the benefit of Rituxan. So, the order of treatments would be important for the best results.
Some of my first-hand experiences with PE may be of interest to those considering it:
February 24, 2023 at 11:54 am
Thank you Jim for the clarification on Plasmapheresis vs. Plasma exchange. I knew there was a difference, just didn’t know the details.
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!
March 7, 2023 at 2:48 pm
I am so sorry, Bryan! I had what was believed to be a mild case of GBS back in 2012 following a TDAP vaccine. I was never paralyzed but could barely walk. I recovered significantly with PT after 5 months or so. I was teaching Zumba and working full time when I was pressured to get the Covid vaccine back in October 2021. My doctor told me I should do ok since it was different. It was an mRNA vaccine. Wrong! I woke up the next morning and could barely breathe. It hit me pretty fast and hard. This time I was diagnosed with small nerve fiber damage. He said I’d recover in 3-4 months. I could still walk but it did some damage. Apparently, I can’t take vaccines. Haven’t taken Shingles or Pneumonia vaccines. Wish I’d never gotten another vaccine but oh well. I recovered again but it took a toll. I thought I was going to die so feel fortunate that didn’t happen.
May 31, 2023 at 10:47 am
How are you doing now?
July 27, 2023 at 6:30 pm
Ditto. How are you doing now?
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”. ; )
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