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

Tyson,

After I got MG I also got a minor skin infection. I had lots of testing done to figure out what it was (blood and skin tests) and the conclusion was that it may have something to do with allergies, but that I definitely have folliculitis. The doctors were really no help, they gave me topical antibiotics which made it go away and then return worse than ever after the treatment was over.

I finally found a solution that doesn't make my MG symptoms worse and it seems to be clearing up my problem...tea tree oil...it makes the itchiness go away immediately and the infection hasn't returned to the treated areas. I was applying it 2 to 4 times a day for 2 weeks to the itchy spots as recommended. I am feeling much better.

I hope you get this figured out, skin problems are no fun and seem to be hard to treat.

Annie, the test for Celiac looks for an antibody reaction in the blood and/or skin - taking an immunosuppresant shouldn't have ANY effect on the results. While Prednisone might help the SYMPTOMS of Celiac, it won't cure the underlying CAUSE of Celiac, which is an intolerance to Gluten. The only currently known "cure" for Celiac Disease is a completely gluten-free diet. That is the ONLY thing that will allow the intestinal lining to heal - even Prednisone won't help that.

The fact of the matter is that if a person has one auto-immune disease - which MG is - they are MUCH more likely to develop another one. It is now becoming more apparent to many Celiac researchers that if a person has one AI disease, they should be tested for Celiac Disease as a matter of course. Unfortunately, this information hasn't been disseminated very well across the medical field - and some doctors aren't willing to hear the information, because they are convinced that they KNOW what they KNOW, and nobody else knows better than they do....

Personally, I would recommend that EVERY MG patient be screened for CD and monitored for it on a regular basis after that, as gluten's effects are CUMULATIVE. From what I have read in my personal research since my daughter's (and my) CD diagnosis 2 years ago, I would even venture so far as to recommend that most people with MG and other AI conditions would benefit from a GF diet, but I am not a medical expert.

However, knowing that LONG before a person is diagnosed with CD they have intestinal damage that can cause malabsorption of nutrients and medications makes me think that a GF diet - which will heal the intestinal lining - would be a logical addition to any MG patient's treatment regimen. Again, that's just me.....

As for "developing" Celiac Disease, for many people a traumatic event can trigger it. Lord knows, MG is a trauma to the system! The fact is that I developed my last large rash not long after my dad had a heart attack; however, once I realized what it was (3 YEARS later - after my daughter was diagnosed with CD), I also realized that I had probably had Celiac Disease for most of my life. I would occasionally have rashes similar to the last one that I had that would crop up, and it would take MONTHS for them to go away.

There is a genetic test that can be done to see if someone carries one of the two genes that are seen in 95% of the people who develop CD, but 40% of the population carries those genes. And there are still people who develop CD who have neither one of those genes, so it isn't 100% accurate. That particular test would also not be affected by taking a particular medication.

No, a GF diet isn't a "picnic", but speaking for myself, I felt so GOOD on a GF diet, that there is absolutely NO WAY that I will ever knowingly eat gluten again. And when I DO accidentally get hold of it, I can tell - I even start to get sores on my skin again. Thankfully, the GF segment of the food industry is the fastest-growing market, because so many more doctors are becoming aware of how very common CD is (1-in-133 people), and they are also becoming more aware of something called Non-Celiac Gluten Sensitivity (NCGS), which is even MORE common than CD.

Many restaurants are starting to have dedicated GF menus available in-store because the CD/Gluten Awareness groups have made it their mission to educate the restaurant industry of this very real health issue that isn't going to go away. It has been much easier to find foods both in the grocery store and at restaurants over the past few months because of these educational efforts, and I anticipate this becoming even better in the future!

Teresa,

I do think there is some truth to what you say about avoidance of gluten helping MG symptoms, even if we don't have CD. I have been reading a lot about nutrition and food, in an attempt to be as healthy as possible. Every change I make to my diet to include more healthy foods also makes my MG a little bit better.

I often find references to gluten being irritating to the intestines, not just those with CD. I am slowly removing gluten from my diet, mostly due to experimentation. Some foods seem to make my MG symptoms less (such as vegetables and fruits and nuts/seeds) and other foods seem to make my MG symptoms increase (processed food, too much bread, too much meat, large meals in general). I am not following a gluten free diet, but I am seeing a decrease in my MG symptoms when I reduce the amount of gluten foods in my diet.

Thanks for bringing this topic up for everyone's awareness.

Desert, and Teresa. Both really good posts.
Tyson, I was wondering if they swabbed your sores, and what the results were.
Staph infections such as Myrsa on the skin, can also cause the rash about which you speak.
Especially with those of us on immunos, preds..etc.

Prednisone is a funny med. It can help and infection, and it can hurt an infection...:rolleyes: I guess it all depends on it's mood.

Hope you feel well soon tyson.
((hugs))
Lizzie

Teresa, You obviously got upset by what I said and I'm sorry that you did. The fact is that Prednisone does suppress the immune system and the production of antibodies. In no way was I saying that it was a substitute for going gluten-free. And I know Pred won't cure CD. I wasn't saying that either.

Taking Pred does the exact same thing with celiac as it is with lupus or MG or other autoimmune diseases that produce antibodies. I've known people with MG that have antibodies off of Pred but they disappear while on it. Some more severe cases of MG may have antibodies on it but that is not the case in all people.

I know from your posts that you are highly committed to getting the word out about celiac and I think that is admirable. Perhaps you should write a book on celiac disease, since it is such a great interest of yours.

Annie

I just wanted to add on, that I am one who has been on Prednisone for more years than I care to admit. Before Prednisone, I had no antibodies show up, A couple years after Prednisone, Antibodies showed up. So it may depend upon if a person is in a flair when the blood test is done more than anything else. At least this is what I've come to believe.
teresa, I'd read that book in a heart beat.:hug:
Love Lizzie

Sorry, Annie!
 

Oh Annie, I'm sorry if it sounded like I was upset - we can't see each other's faces across the Internet! I wasn't upset at all, believe me. I can see how it came across that way, though, so please accept my apologies. :hug: Also, I tend to put things in boldface and color that I think (others may not!) are important pieces of information - it's almost NEVER to come across as mad! It's just a personal quirk.....

One of the misleading things about Celiac Disease is that after a person has been on a GF diet for 1-2 years, their antibody levels will usually drop down to normal levels, as their intestinal lining has had a chance to heal - my daughter's numbers were normal a year after she had been GF. A lot of people (and unfortunately, some doctors) think that at that point they are "cured", and that they can start eating gluten again. Nothing could be further from the truth - CD is a lifelong condition, so once a person has been diagnosed with it, it is EXTREMELY important that they understand that they MUST stay on a GF diet for the rest of their life.

Unfortunately, there are some people out there who "had" Celiac as a child, and their parents were told that if they quit eating gluten for a year or two they would be "cured". And at the time, that was the accepted wisdom - one could "grow out" of CD. Researchers have since found that this isn't the case - many of these same kids grew up and started having problems that were subsequently found to be related to eating gluten after their supposed "cure". They didn't have the same symptoms that they had as children, so they didn't realize that their health problems were their bodies' reaction to gluten!

I didn't realize that Prednisone would make the antibodies go away/not appear in some people. That makes things a little harder then - I would imagine that might mean that a person could actually have CD, but if they are already on Prednisone, they would get a false negative result! :Scratch-Head: Given the adverse health effects of undiagnosed/untreated CD, that could be extremely BAD for someone like Tyler. If he DOES have CD, but his Prednisone is masking the antibody reaction, his doctors might not realize that he needs to be on a GF diet.

As far as a book :eek:, there are far more knowledgeable and eloquent folks than me out there who already have some pretty great books out on the market - where do you think I get all of my information? I sometimes think that my analytical brain just makes connections between obscure bits of information that other people might not (my dad, husband, and daughters are the same way!). That's the stuff that I pass along - but always with the disclaimer that I am NOT a medical expert (I just play one on TV...... :p).

Anyway, I'm sorry if I came across as short yesterday - it certainly wasn't intentional!