Hi all,
I am on 40 mg of prednisone the past two weeks. Having the following symptoms (besides insomnia) and just checking to see if they seem comparative to anybody else:
I am on 60 mg prednisone taken 20mg/3x/day. I also have the jitters and feeling edgy but I've felt that before the prednisone... I also drink a lot of coffee and just blamed it on that and maybe I needed to eat something. Never really connected it to the prednisone. The thing that I am positive about though is that the joint pain and general movement is much improved, and I didn't realize how badly I felt til that started to go away. I'll take the jitters if I can get up and move around and do things if that's the price I have to pay for it. Welcome to this page. Stay in touch. ~ Sis
Jumpy, yes (prednisone). I've had the other issues too because of the cidp.
Glad your feeling better.
Sis said:
I am on 60 mg prednisone taken 20mg/3x/day. I also have the jitters and feeling edgy but I've felt that before the prednisone... I also drink a lot of coffee and just blamed it on that and maybe I needed to eat something. Never really connected it to the prednisone. The thing that I am positive about though is that the joint pain and general movement is much improved, and I didn't realize how badly I felt til that started to go away. I'll take the jitters if I can get up and move around and do things if that's the price I have to pay for it. Welcome to this page. Stay in touch. ~ Sis
Hi RMGarrett, I've had all of those symptoms and when I developed Muscle Myopathy, they began reducing the prednisone. Right now I'm on 20mg one day and 0mg the next. I calling my Neuro today, to see when I can get off of it completely,
The thing with me is, my docs blame EVERY SYMPTOM or twitch on the PREDNISONE, and not on the CIDP. As I dropped the level of Prednisone (slowly & under doctors orders), Nothing changed,nothing got better.
Now that I am on 2000mg of CellCept per day, and a Plasmapheresis exchange every 2 weeks, I am starting to get some strength back in my upper legs, which allows me to stand, but the neuropathy in my feet doesn't let me walk yet. I also get terrible shooting pains in my arms, legs, hands & feet, as well as drop virtually everything I pick up.
God Bless and Good Luck,
Henry
Yes my mom was on prednisone 1 week ago and experienced all of the above!
Don't forget :
~ being a little "snippy", or quick to bite someone's head off.
~ Sleeplessness
~ tendency to put on fat around the middle
~ tendency for your arms and legs to get skinnier - not a good look combined with the pot belly. The good news is that it is possible to fight these effects by working out.
I mention these on the understanding that for me, it is still worth it. Currently at 20mg/day,will be for a couple months more, then may go down to 15. That's up to my neuro. He stil thinks prednisone is my most effective weapon against CIDP.( along with 2000 mg cellcept/day.)
Is on Prednisone ( 60 mg/day taken three times a day, ) Calcium and Vitamin D twice a day, Pepcid for my stomach, Norco for my pain, and Flexoril for my spasms. I am fighting with a vengeance the weight gain. I have a girl friend who was on the plasmapheresis and Prednisone 100mg / day for a long time and she gained 100 pounds. This old girl cannot and will not gain that much weight and I fight it hard. In the first few months I had gained 35 pounds and I was freaking! No flippin way! And then they wanted me on the prednisone? Well... I made a very conscious decision to be very strict with my diet... between 1000 and 1500 calories a day, and with the added feel good from my joint pain lessening for me, I was more active and dropped 10 of those pounds. I have had some set backs in my diet but I get right back on the horse again the next day and forgive myself for my transgressions. And today I was able to find a free exercise bike that will be delivered here this weekend. So I have high hopes of countering this prednisone weight gain. I know that prednisone rearranges the furniture so to speak on where my fat lies. Not convenient. Not convenient at all! My face is losing its contours and rounding out. My vanity is taking a hard hit here with that. But realizing that I may not be on prednisone forever, if I stay vigilant with this program I am making for myself maybe when its all done and said, my precious vanity will come back in tact. Either way, if its ganna be it's up to me. And working out is a positive no matter how you look at it. Be it rebuilding strength we once had, or maintaining what we have now. Just reading this Jeff was a shot in the arm for me... thank you for sharing. ~ Sis
Sis, My Neuro is proposing Prednisone for me. Your experience is encouraging, but I’m wondering if your improvement continues now years later. I don’t want to expose myself to side effects for a temporary improvement. Any info you could share wb so helpful.
Thanks,
Mike
Yes! Yes! and YES! I can’t sleep, on hyper at all times, can’t concentrate … basically feel like I’m losing my mind! And, a mind is a terrible thing to lose?
Now, where did I put my keys???
I was diagnosed with CIDP 2 years ago, the first treatment I got was 40 mg of Prednisone and of course my face completely changed as well as my body, gained 40 pounds. But the symptoms went away and was able to function more or less in a normal way. No pain and regained the strength on my legs, couldn’t hardly walk. A couple of months later started IVIG every 4 weeks. I responded very well and started to reduce the prednisone till I was completely off of it. I remained just with the IVIG, but two or three moths later I had a relapse and went back to 40 mg of prednisone. I was not happy, got really depressed and discouraged. But I decided to take this with the most positive attitude and started to do research on nutrition alternatives to strengthen my immune system. I have cut down a lot (not completely) on animal protein and I’m consuming lots of greens, fruits and probiotics that I make myself. Since June I have lost 20 pounds and I’m was able to get off prednisone. I’m feeling a little weakness on my legs but I’m walking, though with some pain. I know this a long term struggle and for me having a positive attitude helps a lot. I Try to swim two days a week, not always possible, but I try. Change in nutrition has helped me. No sugar at all and try to avoid foods that contribute to inflammation. I try to incorporate, cinnamon, tumeric, ginger and so on. Will keep you post it and see how it goes. So far I can’t complain. But this is trial and error. Will use my body as a laboratory. We’ll see!
Hi N. Great story. Thank you for the detailed response. I will be very interested in how your “experiment” goes. I have been hearing more and more about special dietary steps to address autoimmune issues and inflammation. Im kind of disenchanted with treatments that have awful side effects and don’t really provide a long term solution. Ideal with the disease, but the treatments depress me. I don’t know if that makes sense to you.
Thank you again.
Mike
(secondchancer)
Hi Mike, thank you for your response. I know how frustrating it is to deal with medications that don’t really work. I’m still on IVIG every four week and also take gabapentin 300 mg, gabapentin doesn’t help with pain, so I’ll discontinue that. In terms of nutrition I am consuming less and less animal protein, my goal is to eliminate it completely. Except for organic milk, because I make my own milk kefir, which contributes to strengthen immune system. I take 1000 mg of vitamin C every day. Try to include in my diet and as much as possible tumeric, cinnamon, cayenne pepper, ginger and honey. It’s been almost two months since I stopped prednisone and I feel fine. I am functioning. Some days are more difficult than others but I believe the change in diet is helping me.