March 9, 2021 at 12:30 pm
Thanks for the reply Mike!January 8, 2021 at 11:23 pm
When your immune system is now fighting an infection or a virus, it changes your normal status cause your body now needs to fight the virus, and your antibodies target it. In the interim antigens that affect our condition don’t get knocked down to the level, we are used to when our body is in a healthier state therefore we start to feel symptoms of CIDP again. Hopefully, that makes sense and hopefully, I said it correctly.January 8, 2021 at 5:57 pm
I at one point used to get tightness in my forearms. So I would say that’s the same as calves since it’s the extremities. I’ve used prednisone and have had good success. Been on Cellcept since May 2019. I noticed I get the tightness if I started getting sick with anything else, like a cold or something which makes sense.September 22, 2020 at 7:55 pm
Why aren’t more people here using Cellcept as a solution? I take 1000 mg 2x a day. The drug works on your system daily vs IVIG which from my point of view isn’t going to be as strong on day 30 as it was day 1. I haven’t heard recovery stories of people on IVIG but I have with Cellcept. I read what happened to you Sandra and it is upsetting and I can only imagine what you’ve been through. I was lucky similar to JD to get on it early. With your surgery and expectations, I can imagine it would be very difficult to guess you had an autoimmune disease, as did I which was caused by shoulder surgery.August 25, 2020 at 5:01 pm
OK the post above is not from me. Strange.August 25, 2020 at 9:49 am
It doesn’t sound like CIDP to me, but I’m no doctor. Your symptoms seem more inline with MSAugust 18, 2020 at 10:22 am
That’s good news! Now, are you also going to be taking an immunosuppressant drug like Cellcept so you don’t have to stay on the Prednisone forever? That is key. Prednisone is great, but our bodies cannot take it for a very long term. I took high dosage for 6 months. Also keep in mind that although you are feeling relief now, you may feel not feel perfect every day. Your body will be trying to heal itself and that will be likely 6 months. Based on your description, you unfortunately progressed further into the disease than me. Hopefully, you can get a good outcome.
My Stats, 200 lbs, 6’1″
80 mg prednisone 2 weeks
70 2 weeks
60 2 weeks
100 4 weeks, 60 seemed to little at the time.
90 2 weeks
80 2 weeks
70 2 weeks
60 2 weeks
was feeling much better
50, 40, 30, 20, 15, 10, 5 all about a week or so.
6 months total, take Cellcept twice a day. Never did IVIG. Gained 25 lbs. Once I stopped Prednisone, I started working out again about 2 months later. I was on the treadmill for the first time a month after that.
Best of luck!June 10, 2020 at 11:03 pm
I know everyone is different, but I can tell you I have had amazing success with immunosuppressant drugs, specifically Cellcept. I went through the 6 month prednisone program, topping out at 100 mg for 30 days, I weigh over 200 lbs. Tapered 10 mg every 2 weeks. I’ve been on Cellcept for one year now, and only Cellcept without Prednisone since mid-October and I feel probably as good as I could ever be. I’m 50 years old and today I was out digging a 2 foot deep trench in a friend’s yard. I was running on a treadmill this past January.
I know my CIDP is not in remission. I know this because when COVID hit I was concerned and asked my doc if I could cut my Cellcept dosage in half. He agreed and for the first 2 weeks all was good, then I started to get very mild tingling again so I immediately went back to my regular dosage and shortly felt back to normal again. So for me, I know the exact dosage that works for my body now.
I have not once used IVIG, I elected to go this route from the moment I was diagnosed, and I am glad I did. I am happy to have a more detailed conversation about this if anyone needs help.April 7, 2020 at 11:37 pm
Alex, how bad is your CIDP? What is your treatment? When was the implant done and when did CIDP occur in that timeline?April 6, 2020 at 9:43 pm
Screws are implanted during shoulder surgery.April 5, 2020 at 5:23 pm
I had shoulder surgery and 8 weeks later I had my first symptoms. A year later I was fully diagnosed and on prednisone.March 27, 2020 at 3:31 pm
I am not on IVIG, however, I am on Cellcept and used to take Prednisone, both weaken the immune system. I was cleared to go back to work a couple of weeks ago and was expecting to start up again in late April. Lucky me during the middle of a pandemic!
So I learned that if I get the coronavirus that I would likely be in serious trouble. So now I have to thread a needle between the decision of staying home and likely not getting paid and going to work. Talking to my doctor, we are discussing now about stopping medication all together so that if I got infected, I could beat the virus.
So this will put me at risk of having CIDP symptoms returning. Maybe I’ll be lucky and find my case to be in remission? Lots of scary unknowns out there ahead. I hope everyone here stays safe. We are immunocompromised and we cannot forget this.March 1, 2020 at 10:06 pm
While I didn’t go the route of IVIG, I used prednisone and immunosuppressants. My opinion is kinda like you said. It will take 6 plus months until you see your most gains due to healing as it did for me. And I don’t think there is anything that gives an “instant” recovery.January 31, 2020 at 10:29 pm
Looks like your case isn’t overly horrible. I mean it is all horrible but could be worse. I was probably similar to you or maybe only very slightly better. You just have to give it time and I think you will get better. I’d push for the Cellcept, it makes sense and works, especially if you are done having kids. They say after about 60-90 days after starting Cellcept you can get off of the Prednisone. It doesn’t make sense to do IVIG and Prednisone indefinitely. As for Stem Cell, I felt like you initially during the process. I even called them up and they told me they wouldn’t even talk to me until after I had 6 months of traditional treatment. Glad I waited because chemotherapy is a bigger deal than we think it is in my opinion.January 31, 2020 at 6:14 pm
I think one thing most patients don’t take into consideration is that by the time they get symptoms and find out they have CIDP, their nerves are already damaged at this point.
Then when we get treatment from whatever source we have some level of relief but the deal here you really won’t feel back to normal until your nerves have time to actually repair themselves and heal. This takes every bit of 6 months. When I started treatment, it took me 8 months before I was able to start using my legs athletically again (running with distance), even though I functioned mostly normal quickly after treatment, just not able to really do a legit run for a workout until healing took place.
In order to have healing, you need to knock down your immune system so it stops attacking your nerves. I did this with 6 months of Prednisone and Cellcept which I still take twice a day and have no side effects. Of course, this may work differently in other people but luckily this was a great course of action for me. During those first 6 months, I had ups and downs but stuck with it and was lucky in the end that healing was occurring and ended up recovering well.
I don’t have experience with IVIG, but I suppose it knocks down the immune system but needs replenishing about every 4 weeks. I like taking a pill every day vs getting hooked up to a machine. Plus I don’t have any effects of before and after the monthly IVIG session, I read here about.