Question help please
 

Hey all hope your doing well.

I have a question about poison ivy/oak/sumac. I have had a rash for three weeks it started on leg and moved everywhere. Its on my genitals legs arms and chest. I went to the er cus it was getting worse. They put me on 60 of pred I was already on 20. It hasn't done a thing, I feel the same, I've got horribly dry nose and nose bleeds alot.

Any help would b appreciated. Back to the er? My breathing has been worse in the last couple days maybe because of infection? Thanks.

The short answer: Go back in. It may not be poison ivy or oak or sumac. Did they discuss any topic things to use? Washing?

When you have an "allergic" response, you also have a buildup of histamine. Steroids may not be a complete answer to what is going on. Can you take liquid Benadryl? Benadryl does the opposite of Mestinon and can make MG worse. Don't over do it on Benadryl! More is not always better. There are other drugs such as Atarax/Hydroxyzine which can help. You need a doctor to look at your overall health and what drugs you are taking, including supplements, before you know what you can or can't do!!!

http://www.nlm.nih.gov/medlineplus/e...cle/000027.htm

Anything that gets worse after seeing a doctor means going back to see them again (to see if they can get it right or better). ;)

Annie

Thanks Annie, I'm sitting in the er now waiting. My nose is horribly stuffy and it's hard to breathe out of it, yet maybe a different infection. Oh well. I hope this time they can do something about it

Tyson, Have you ever had an allergic reaction? I have. Lots. When histamine builds up, you can have symptoms like a stuffed up nose. It's kind of the same when people drink wine, which has histamines in it - their nose can get stuffy.

So while they are addressing the underlying immune reaction, they didn't really address a possible histamine reaction too.

I'm glad you've gone back in, Tyson! When you said three weeks, I thought, Wow, are they sure that's poison ivy/oak/sumac? It's good that you're having them take another look. I hope they can figure it out this time.

Abby

Thanks!

They now believe it's folliculitis. More antibiotics. They have me on keflex. Hopefully it works. Would this make me more tired? I've been excersixing alot and I think I was ok from that yet I'm tired maybe from the infection?

Annie, I'm unsure If I've had a reaction. I'm in California for the summer. But they are very knowledgeable.

Well, giving you more Pred would make an infection worse.

Yeah, any infection will make MG worse. So will an increase in Pred!!! What did they say to do about that? Go back down?

Be on the lookout for a secondary infection like clostridium difficile. I'm going to be gross . . . if your stools become runny or look yellow or "puffy," go back in. That little infection is life-threatening. If you do get it, ask for the Vancomycin instead of the Flagyl (if you want to).

I got folliculitis while on Pred too. They gave me an antibiotic and then I got C-Diff. It may not happen to you but just in case it does, you have the info.

Keep a close eye on yourself and your MG. Good thing you aren't on the East coast, given how hot it is.

Annie

Yeah im unsure why they gave me more pred in the first place. They thought it was poison ivy at first. Now its a skin infection. Ive been excersizing alot, and this infection is making me very tired im glad i finally got antibiotics.

Thanks for your help annie. Im going to watch for any reaction to the meds that are bad. I do know im sick of having a comprimised immune system...

Another test that you will want to have them run
 

Tyson,
I'm going to sound like I'm beating a dead horse here, but you will want to ask your doctor to test your skin for Dermatitis Herpetiformis. BE SURE and request that the test be done by a dermatologist who is familiar with the correct way to collect a sample. At the same time, have them run a blood test to screen for Celiac Disease. You may want to contact your local Gluten Intolerance Group (GIG) for recommendations for a doctor in your area who is familiar with CD/DH.

I have DH, which is the dermatological manifestation of CD. About 10% of people with DH will NOT test positive for CD (I happen to be one of them), but if you have DH, you have CD; the antibodies are expressed through the skin rather than through the blood. Since you already have one auto-immune disease (MG), you are more likely to develop another one. Celiac Disease is MUCH more common than most doctors realize (1-in-133 people are estimated to currently have it, yet only 3% of them know that they have it).

DH itches like an SOB! The good news is that if you go on a gluten-free diet, your lesions will start to clear up almost immediately. You may also find that some of your MG symptoms are lessened as well. If you have any questions, please feel free to contact me - I've been on a GF diet for the past 2 years, and it made a HUGE difference in how I felt. I was just recently diagnosed with MG, and my doctor feels that the GF diet might be why my symptoms are so mild....

Unfortunately, the skin test for DH won't always give an accurate result, so you may want to try a completely GF diet (there's no such thing as "gluten lite") for about a month to see if it helps at all. Have the test run anyway, just on the off chance that it comes back positive. However, a GF diet won't HURT you in any way, so it's worth it just to give it a try; you may find that you feel better on it, whether it helps your rash or not.

Gluten-Free foods are the fastest-growing segment of the food industry, as more and more people are becoming aware that they have gluten issues. Many restaurants have dedicated GF menus as well; our local GIG group puts out a Restaurant Guide, which made it SOOOO much easier for our family when we were starting out!

Here's a link to some info on Celiac Disease and gluten issues:
http://neurotalk.psychcentral.com/post8767-2.html

And here's a link to a list of professionals in a few states that have GIG support groups:
http://gluten.net/professionals.php

If your state isn't listed, you may be able to find one through the celiac.com website on the neurotalk link - I believe they have a listing of support groups in the various states.

Hope this helps! :hug:

Teresa, You've been very helpful posting that celiac info but I'm afraid Tyson won't be able to know for certain if he has celiac or not due to how immunosuppressed he is. And it sort of doesn't make sense that he would have celiac because of that. Celiac is an autoimmune disease and would, therefore, respond to Pred and the symptoms would lessen, not get worse. His rash didn't get better on an increase in Pred.

I guess only time will tell if the antibiotic makes it better, which I hope it does.

I'm not trying to be contrary, only offering up a bit of logical information. I know how destructive celiac is and I wouldn't wish it on anyone. The food choices are better now but it still isn't a picnic! ;)

Annie