Anyone else had a several month course of prednisone for their neuropathy and erthromelalgia and if so, did it help? My neuro wants to try this.
I have tried Prednisone for my erthromelalgia and it did nothing. It did not help and created several other problems for me. I HATED Prednisone, and my goal is to never take it again
Steroids always have problems attached. They saved my dog's life from liver failure. But they are no picnic. Don't quit them cold-turkey, can be dangerous. They can be a wonder drug, but whooee.
Did the doctor say any more about it being a small fiber neuropathy? Most researchers in EM seem to think that could be possible. Please keep us posted on the prednisone experience, and, if you don't mind, the small fiber neuropathy. Do you have pre-existing peripheral neuropathy?
Thanks for posting! Janae
Hi there Jen,
I was on prednisone for other reasons and i have severe sensory neuropathy and EM. It didn’t touch any of them although did make my swelling go away. I wanted to be put on a low dose to treat the swelling and the other thing that it was helping but got refused! My GP said it’s too risky to be put on a steroid for ‘nothing’ without there being a genuine 100% need - as in, no other option. When there is plenty of other trial options for EM I’d use steroids as a last resort because they cause so much grief to the body and there’s nothing to say too many results with them.
If it’s only small fine neuropathy your contending with I don’t see why steroids would be an option… It seems small fibre neuropathy is COMMON in a Erythromelalgia cases. Steroids cause weight gain, 'moon" shaped faces, can weaken bones etc. Some people with EM too are extra sensitive to meds and a steroid prescribed over a large amount of time seems pretty risky for a first option for me- I’d def place it as a last resort! Although my GP won’t even consider it due to the risks and complications… and that’s for other health reasons! If it helped my EM I’d still get told no. Id def try other options first, Jen. It seems to be a case of too much - too soon!
Take care x
Hi. I have tried prednisone and I didn’t notice any difference. I was on it about a month. It didn’t make me feel worse just not better either. Good luck.i hope it helps you. Please let us know if you try it and if it works.
I have EM, small fiber neuropathy as well as peripheral neuropathy and fairly recently Behcet's. I was placed on prednisone as well as an immunosuppresant drug for my Behcet's & for a short while my symptoms did go into remission. For the first month I felt better than I had in yrs!!! I've since had to stop these 2 meds as they were decreasing my immune system too much & I developed pneumonia twice in one year, despite never having had it before in my life!
Hotmoma sorry to hear you had a tough time. I was on prednisone for a few months. My symptoms were much better but then I gained a lot of weight. My neuro is now trying ivig to help with the autoimmune component. I’ll keep you posted.
This is interesting, for sure.
I sometimes have to take short courses of prednisone and H1 and H2 histamine blockers if I have an allergic reaction to something. My allergist writ)es me a script of a bottle of 50 pills of 50mgs and 50 pills of 5 mgs prednisone with 5 repeats? I don't get through a bottle of each in a year. She has told me she would be okay with me taking it every day if it helps but not to go above 15mgs. But it doesn't do much for EM, in my case. Nowhere near enough to compensate for the health problems I've seen develop in 2 out of 3 people I know who have been on prednisone for a long time. One person seemed to be able to take it very well -- my grandmother -- who died at age 93, did not get fat, break bones, get jowls or moon face. The two other people I know who took it was my Dad, who died just before Christmas last year of 2 non curable diseases. In the last months of his life he lost the ability to walk completely due to the fact the prednisone had attacked his upper thigh muscles. They were wasted and even if he had beaten his diseases - a nasty type of cancer and pulmonary fibrosis he would never have been able to walk again. Strange our my grandmother and her son, my dad, could have such different responses to the same med. My sister in law who has been taking prednisone for about 18 years is now 69 -- quite a bit older than me -- and has needed a hip replacement because prednisone has attacked her bones and had to have her teeth all repaired and capped because they were breaking (although teeth are cartilage, aren't they. Not sure). She's overweight for her height. Has developed that hunched back thing as well as a bit of moon face -- but in her case there's no going off prednisone because it's keeping her alive.
Well, I'm not in any danger of any of that, yet. It is a great relief to have it to take when having an allergic reaction and I start off at 25mgs X 2 daily for a few days and over the course of about 6 - 8 days I get down to 5 mgs once a day and then off it.
For EM flushing and burning -- I've tried it for that -- about 2 hours after I took it (which is the right amount of time for prednisone to start working) the redness went away as does the swelling and burning. I get to see my real normal coloured skin on my face! But only for 4 hours. Then EM symptoms returned. So, over all I found it pretty useless for EM, as 4 hours out of 24 is not enough to compensate for the agitation, anxiety, increased sleeplessness, and slight loopy-loony mood change I get. These are side effects that I (and those around me) have to put up with when I have an allergic reaction -- or I'm having dental work.
No way will I at this point trade possible/probable enormous health problems from taking prednisone for 4 hours of EM relief out of 24 hours. Even if prednisone did not cause a lot of health problems for a lot of people the almost immediate short term side effects of feeling crazy that I mentioned above is not worth it. It might turn out that I have an underlying condition that the prednisone treats for the 4 hour time span that makes the EM go away. That occurred to me just recently. But still I'm left with a very small window of symptom relief.
blue
The reason to take it for dental work is that as of about 5 years ago I became allergic to zylocaine cream -- non-immune anaphylaxis reaction different from immune anaphalaxis that I have also experienced but can have same outcome. It gets really confusing here: At the moment I have a strong EM like reaction to dental anaesthesia now that is full on and painful -- hands are fully involved which is not that common for me, and my skin feels like it's being sandpapered by my clothes. Zylocaine cream is lidocaine in another form apparently so I fear a full on non-immune anaphylaxis is not far off. But why the EM reaction or EM like reaction when I might be headed towards allergic reaction? Allergist/immunologist can't answer that.