I’m about to tell to my neurologist to prescribe me prednisone for the numbness on my feet and hands!!! I’ve been having this since October 2014 …I’ve been on iv Methylprednisolone 1000 once a week for 6 six weeks. Finished two weeks ago and the numbness is coming on again! I’m using a walker for that reason…I don’t know what to do about it? I’ve done a week of IVIG and only worked for a couple of days and the symptoms came back.
Prednisones has a lot of side effects such as weight gain and raising your sugar levels so you must’ve be careful and monitor your sugar and weight because your legs do not need to carry more weight that Will affect your CIDP we must monitor our weight and ssugar levels there are many other side effects to Prednisones
Hey there!
Was this your first week of IVIG? It took about three treatments for me to see results. I had a round of five days initially and then four days in a row every four weeks until I eventually tapered down to two days every four weeks.
My neurologist was pretty hesitant to get me on prednisone because I'm incredibly meds sensitive but after I had some inflammation in my heart & lungs I had no choice and did a round of it and it was AWFUL. I felt like I was hit by a bus. It helped the inflammation but I seriously hope to never take it again.
sorry this is so long.
i was first Dx cidp june 2013. my arms were affected-unable to move or feel the right arm. lost 60% use of left arm. am left-handed.. was treated in hospital with 5 days ivig loading dose. then 2 wks at neuro-muscular rehab & sent to stay with my daughter. relapsed within 2 wks. arms, legs,breathing, swallowing were affected. since then & to now spend all my waking hours in a wheelchair. ivig was every 4 wks. if it were not for my bad hip i might be able to spend at least 50% of the time using a walker/rollator. too painful to stand or walk more than 5-10 minutes. with the relapse another 5 days ivig loading dose but put on prednisone & was hospitalized for almost 3 wks & then went to neuro-muscular rehab for 2.5 mths. was on prednisone for 9 mths to april 2014. around then ivig increased to every 3 wks. relapsed again sept 2014 - arms & legs affected. put back on prednisone & am still on it. the dosage was low both times - 20 mg per day. the dosage is again being lowered & have gone from 20 to 15 & in 2wks will go down to 10 & stay there. it is helping. carpal tunnel symptoms are gone. legs are getting stronger. due for hip surgery within 2-3 mths from now & am hopeful i will be able to get out of my wheelchair & use rollator/walker all the time & eventually-maybe next year- walk unassisted. ivig increased to every 2wks last sept when i had another relapse. the ivig is helping my stamina & decreasing little by little the fatigue. prednisone however comes with complications. because of it i am now diabetic & take metformin. it depletes potassium so eat a banana & orange every day. high blood pressure so take ramipril. take huge doses of calcium & vitamin d to offset osteoporosis as it depletes bones of calcium. have GERD - not sure if thats cidp or prednisone but have been on omeprazole since the first relapse. you have to weigh the good with the bad. i have gained approx 40 lbs. part of it from being in a wheelchair & part of it due to fluid retention because of the prednisone. for me i am seeing benefits that improve my quality of life. its your life & your health. you have to decide whats best for you. & you have to be your own health advocate. good luck. stay positive and strong. you are not alone. we're with you,
Hi there, I have CIDP since 2011 however I’ve never been treated with prednisone I do know they (drs) treat GBS with prednisone but I’ve been treated with polygam/ octagam/intragam . All the same family of meds however this is a long road to walk and with a lot of strength and positivity. I was in a wheelchair for 2 years but im walking now but suffer from cramps, like they say take the good with the bad, however I do get my ivig every 2months as cidp is “chronic”. We have to be strong for our own sanity and family. Ask your dr about polygam im sure it will be much cheaper if you have medical insurance as we have medical aid in South Africa but it works. Polygam the way to go. I also suffer from rheumatoid arthritis and my neurologist took me off ptednisone which was originally for my arthritis and thought if I stop it might help my condition but did not. Prednisone can also cause steriod myopathy ( weakness of muscles) which might be mistaken for CIDP too. Just a suggestion. Good luck and God bless.
hi Grace. have never heard of steroid myopathy. my neuro never told me about it. thanks for that.
Grace said:
Hi there, I have CIDP since 2011 however I've never been treated with prednisone I do know they (drs) treat GBS with prednisone but I've been treated with polygam/ octagam/intragam . All the same family of meds however this is a long road to walk and with a lot of strength and positivity. I was in a wheelchair for 2 years but im walking now but suffer from cramps, like they say take the good with the bad, however I do get my ivig every 2months as cidp is "chronic". We have to be strong for our own sanity and family. Ask your dr about polygam im sure it will be much cheaper if you have medical insurance as we have medical aid in South Africa but it works. Polygam the way to go. I also suffer from rheumatoid arthritis and my neurologist took me off ptednisone which was originally for my arthritis and thought if I stop it might help my condition but did not. Prednisone can also cause steriod myopathy ( weakness of muscles) which might be mistaken for CIDP too. Just a suggestion. Good luck and God bless.
Don’t think you gave Ivig a chance to work. Took about 4-6 months of Ivig every 3 weeks after loading dose for me to see results. Now fully ambulatory. Still have residual numbness in feet but that’s it.
Wish you could get IVIG. It seems to be of most benefit but is very expensive. I had to come off it for a while and after about 4-5 weeks I was in a wheelchair. My condition seems more severe than most just going by the amount of IVIG I am getting. I get 5 infusions of 30G every other week. They thought I had a pulmonary embolism which is why I had to stop the IVIG. I don't believe I had a PE. I had no symptoms at all. A few of my Dr's feel it was probably a bad diagnosis. It really put me through hell being off my IVIG. I still need Morphine Sulphate ER to cover the pain I still have. Also Lyrica, Cymbalta, and Cellcept are my other meds I take. I lost my wife last year so now I live alone making things even harder. We were together 24/7 and I miss her every day. I have to wonder what God's plan is for me. Hang in there.
Grace said:
Hi there, I have CIDP since 2011 however I've never been treated with prednisone I do know they (drs) treat GBS with prednisone but I've been treated with polygam/ octagam/intragam . All the same family of meds however this is a long road to walk and with a lot of strength and positivity. I was in a wheelchair for 2 years but im walking now but suffer from cramps, like they say take the good with the bad, however I do get my ivig every 2months as cidp is "chronic". We have to be strong for our own sanity and family. Ask your dr about polygam im sure it will be much cheaper if you have medical insurance as we have medical aid in South Africa but it works. Polygam the way to go. I also suffer from rheumatoid arthritis and my neurologist took me off ptednisone which was originally for my arthritis and thought if I stop it might help my condition but did not. Prednisone can also cause steriod myopathy ( weakness of muscles) which might be mistaken for CIDP too. Just a suggestion. Good luck and God bless.
The other posters have covered this pretty well, so I will just add my experience. Prednisone was the first thing my neurologist tried after I was diagnosed with CIDP. It did absolutely nothing for me, so he switched to IVIG, which worked wonders.
But, I have talked to a couple other folks with CIDP for whom prednisone worked well. It is inexpensive, and doesn't require a visit to an infusion clinic. So, it might be worth a try. However, pay attention to the side effects folks have discussed here, they are very real. The only one that I really got was a ravenous appetite, but boy, did I get that! I could barely walk at the time, so I could not afford to gain weight, but it was really hard to not overeat.
I took 75mg of PREDNISONE and then 50mg for almost three months. I saw no results until the end of the third month. All the CIDP symptoms were gone but as soon as I began to take only 12.5gm some of the symptoms showed up again. Some tingling came back on my left arm and foot. My Neurologist says IVIG could be another choice. We'll see.
Good Luck!