David
Your Replies
-
August 25, 2020 at 5:01 pm
OK the post above is not from me. Strange.
August 25, 2020 at 9:49 amIt doesn’t sound like CIDP to me, but I’m no doctor. Your symptoms seem more inline with MS
August 18, 2020 at 10:22 amThat’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 pmI 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 pmAlex, 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 pmScrews are implanted during shoulder surgery.
April 5, 2020 at 5:23 pmI 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 pmI 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 pmWhile 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 pmDana,
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 pmI 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.
January 27, 2020 at 11:58 amI’m also in a DOT sensitive position as well, but rather not discuss it in detail here at this time. If you’d like to have a conversation, email me and we can go from there. info@8oz.com
January 11, 2020 at 11:11 pmJim, I hope your recovery is going well. I am shocked no one here has replied after a week of your post. I see you are a large contributor and given the rare nature of our disorder, it really helps to hear more voice than not. Best wishes.
Dave
December 29, 2019 at 6:03 pmPrednisone is a corticosteroid not an anabolic steroid that you are thinking about, like Barry Bonds. Google the 2 steroids and you will see the differences. Feel free to ask more questions if you have them. I posted as much as I could think of in one long sitting. I know there may be more to share.
What I like about my post is that it gave me the opportunity to reflect back on the experience. The notes I took showed there were little struggles along the way to recovery and would in most cases be hard to document in my opinion.
December 27, 2019 at 1:19 pmLook! If you are getting worse then it is going to take that much longer to eventually recover. The Mylen Sheath takes 6 months to repair back and if it gets past the sheath to the axiom then I’m reading that isn’t repairable. Prednisone is the most used treatment over IVIG and Plasma exchange. Keep in mind you’ll need to get on an immunosuppressant drug in conjunction with the prednisone so you can eventually ween off of the prednisone. If she doesn’t want to use prednisone, then it sounds like you need to find a new doc asap.
I think I will try to write out a complete history of what happened to me and how I recovered. I think many will be able to find my story very helpful. I’ll try to post this over the weekend.
