NeuroTalk Support Groups

NeuroTalk Support Groups (https://www.neurotalk.org/)

- Peripheral Neuropathy (https://www.neurotalk.org/peripheral-neuropathy/)

- - EM vs PN (https://www.neurotalk.org/peripheral-neuropathy/154565-em-vs-pn.html)

Quote:

Originally Posted by zygopetalum (Post 805847)

TinaLou, I read your blog concerning steroid use making your EM worse. I've been on an inhaled steroid for years that is reported to occasionally cause Churg Strauss. It gave me killer PN/EM symptoms and am trying to wean off it but so far have not been able to stop the med entirely and still breathe. I seem to have developed steroid myopathy from it, haven't gotten definitive word from Dr yet but i think he suspected last visit. I have a lot of EM symptoms, stopped steroid for a couple of days and when I resumed I could feel the heat going back into my feet.

I haven't had any blood work for a couple of years, last time I did not have elevated eosinophiles but don't know what is going on at this point. I'd like to hear what symptoms you have with the Churg Strauss, I didn't think I had it but something new has been going on for the past few weeks and have been wondering a little. I occasionally get a severe pain starting behind my knee that radiates down and up my leg, it feels more vascular than neuropathic but I don't really know. Also have had some severe stomach pain, am being treated for ulcers but no one knows if I really have them, it was just a first step. Pain comes back as soon as I stop med. Have some crazy reactive airways too. I know its rare and I hope I don't have it, just asking as you have experience.
Thanks, Judi

Hi Judi,
It is difficult to taper off the steroid...1mg per month decrease is not uncommon in order to allow your body to adjust slowly. I have had increased eosinophils for years, but after a bad lung infection, I started having higher levels and more symptoms. I was diagnosed with sinus disease (the sinus behind my eyes is completely "shot", and the other two are in very bad shape, I have severe lung disease w/infiltrates, skin rashes that comprise mostly of eosinophils, and PN.
The best thing to do is taper off the pred slowly and then have your labs done while you're off of it. They should also do a Sed rate and an ANCA test to see the results of those. There are six criteria that usually have to be met in order to be diagnosed with CSS and I'm not sure the exacts, but they can be found on the CSS association site. But, you should get copies of your labs and go over them yourself....my doctor never told me about many years of bad labs that should have been monitored.
I do have the pain down my legs too, not sure if it is the PN or EM, I just attribute it to walking funny from the EM pain--and stomach pain has been ongoing....I haven't had mine looked at yet either, but hopefully will soon....I do hope you don't have CSS--unfortunately, the treatment for it is prednisone or another immunosuppressant. I'm sorry you're going through these things and hope you find some relief and answers. Nice to meet you.

Quote:

Originally Posted by TinaLou (Post 805787)

I'm a but late getting in on this thread, but Hi to all.....I haven't been to the forum in a long time. Last time I was here, I had been diagnosed with PN and EM, but not many here had info on EM. Glad to see there are others meeting here to share their experiences. I also have a rare form of Vasculitis called Churg Strauss Syndrome, so I am a really "special" case. I am in the Southwest Atlanta area, and have yet to find a good doctor with either a working knowledge or a willingness to learn about EM, so I still deal with flares much of every day. I noticed several of you mentioning Atlanta.....is there a particular doctor here that one or more of you have had success with?
So far I have tried aspirin therapy, blood pressure meds, mag + calc, lyrica (which caused a problem with my vision), and one of the tricyclic (sp ?) meds to no avail. I am very sensitive to medications and have strange reations--usually the opposite of what is desired....so, I have been left with neurontin and a small dose of clonazepam. Trileptal helped the most of any, but a problem with my kidney function arose and it had to be stopped promptly. That was such a disappointment.
Also, have blood testing for JAK2?
Anyways, so glad to know you all are here.
Tina

Tinalou
I understand how frustrating it is to have pain and search for answers without finding them. I too have been searching for an answer. Mostly my pain if from EM. I have tried most all of the things you have but with one exception. Someone mentioned that antihistimines helped (claritin specifically) and I figured it wouldn't hurt to try and to date that has helped me the most. Flares now are almost non existant unless I stand too much or walk too much in which case there is nothing that will help. I don't know if this might help you or not but thought it was worth mentioning. I was really grateful for this tip, it has changed my life. Good luck.

Quote:

Originally Posted by norahs (Post 809502)

I'm not sure what happened....I came here before, but was told I was removed from thread??
Anywho....Yes, I have been on antihistamines due to the CSS-it is an "allergic" type disease. But, these do not help my burning at all. I sure wish mine would be that easy!! That's great that you have found them successful.