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Post by rhodygirl on Mar 4, 2012 19:34:27 GMT -5
Okay, so the title pretty much sums it up, but in short I have been having severe and exaggerated allergic reactions to nearly everything the last year or so.
Examples: deodorant, metal jewelry, band-aids (latex free even), sulfa antibiotic, augmentin antibiotic, and this past friday -- hair dye. I woke up on Saturday to a saturated pillow and pounding head. My head was covered in oozing blisters, I had golfball sized lumps behind my ears, my neck was swollen and it was difficult to breathe. I have been to the ER for severe allergic reactions 3 times in the last 6 months.
I have never had allergies to anything in my entire life until recently. I'm scared of what will be next. I keep breaking out in a seriously itchy hives and/or painful rash with blisters that ooze and crust over and hurt like hell. The bandaids are INTENSE. I had broken out into a rash on my legs. Didn't know what it was so I covered the spots with band-aids. Well I wound up with what looked like chemical burns in the exact shape of the band-aids on my legs. They took almost a month to heal.
Only changes lately have been Mirena -- 11 months -- this makes me suspicious. Though the deodorant issue started before Mirena. Everything else, after. I am scheduled to have my left ovary removed in 3 weeks for suspicious thick walled complex cyts, constant pain on left side (always) and more recently HCG found in my bloodwork, but there is no chance of pregnancy. We thought about taking it out last summer but I was trying not to. Now it's just become too much to deal with and it's a little suspect for cancer, so it's coming out.
Other than that, same old crap...could Endo be causing these issues since it's questionably an auto-immune disease?
What are your thoughts ladies? I need some help getting to the bottom of this one. I'm being referred to an immunologist, but it will probably be a little while before I can be seen as a new patient.
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Post by Karen on Mar 4, 2012 21:52:51 GMT -5
Oh, no, that doesn't sound good at all! Some odd reactions like that have happened to me and my dad so I can sympathize (though not quite that severe). After my lap, I had perfect squares all over my body where they had the stick-on sensors and where I had band-aids. Not cool! I'm also the only person in the world that I know gets a reaction from Pepto-Bismol - I break out in tiny puss-filled bumps all over my body and my skin eventually all flakes off all over.
I'd suspect the autoimmune response you're having somehow relates to endo, but I'd suspect there's something else going on. Have these been most severe while on Mirena? A quick google search showed that a few women do, in fact, have allergic reactions to it. If things have just gotten worse since you've been on it, that'd be my first thought. Are you on any other medications? Did you have a lap or any medical procedure around the time things started? Do you have any known food sensitivities? Do you live in a different place than before? Hidden mold in your house? New lawn chemicals? Do you live near a factory? Have you started using any new detergents, soaps, shampoos, perfumes, cleaners, or air fresheners? Jenaya just found a few months ago that air fresheners were causing her back to break out in a rash! I'd be willing to bet that you've had some minor, underlying allergies or sensitivities, but something is just now forcing them to come to the surface. I hope the immunologist can shed some light on things and leave no stone un-turned!
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Post by semicolon on Mar 4, 2012 22:00:10 GMT -5
I was going to say, where's Jenaya? The timing feels a little too coincidental to be complete chance with the Mirena, but hard to say (I always say this, but you have to go with your gut). This is serious, I hope you can get to the bottom of this before undergoing surgery with anesthesia.
Karen- I had the same exact reaction to Pepto too! It was horrible and took so long to get over, and I still don't know what it was about Pepto that did it. You are the only other person I've heard with this!
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Post by Karen on Mar 4, 2012 22:05:40 GMT -5
That's a very good point - I'd worry about reactions during surgery as well. Does your surgeon know you have had these responses recently? There are so many things that may set you off during surgery and you may want to discuss some precautionary approaches with your surgeon ahead of time. Does benedryl help at all?
And Semicolon - that's crazy!! The first time I had that reaction, I wasn't sure what it was, so a few months later I tried it again and I had the same reaction! At the time, I was still teaching and I remember an a-hole student joking that I had dandruff because my skin was flaking everywhere! I have no idea what ingredient caused that, and I had no idea I wasn't the only one!!
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Post by omaklackey on Mar 4, 2012 22:35:17 GMT -5
there are a TON of drug interactions with Mirena and hypersensitiivity (allergic reactions) is an adverse effect and so is rash but It seems more likely you have had a ton of allergies kick up all at once. Although a young lady (15) we know has had this happen. She keeps having extreme asthma reactions. She has PCOS already diagnosed and is on something for it and then her reactions started coming... hmm.. maybe your on to something?
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Post by rhodygirl on Mar 4, 2012 23:25:54 GMT -5
Thanks guys. Not all of it started after Mirena (deodorant irritation and same with earrings definitely started before), but most of it has occurred after. Though, Mirena was also inserted during my last lap on 3/30/11. I have discussed my random allergic reactions with my surgeon, however, this last bout happened after the appt to schedule my surgery. I go in for preop on the 14th, so I will make it very clear that this is something I am very concerned about.
Benedryl alone doesn't put a dent in it. Every time I've had to use steroids to calm things down. I have also been told to use zantac this time, because apparently it's a H2 histamine blocker, and benedryl is for H1 type. Using both is supposed to provide a better response. It seems to be helping. I had not taken the antihistamines by early afternoon today and my head and neck started swelling again. About 1 hour after taking them it got better, but hasn't completely gone down.
We've been in our house for 3 years, no mold -- we've ripped this house apart to the studs doing renovations, so I'm sure of that. No factories or environmental concerns nearby that I am aware of. If anything, over the past few years I have transitioned over to all natural or enzyme based cleansers, detergents, etc. and use very few chemical cleaners in our house. I don't use air fresheners anymore, I found them to irritate my mild asthma. I do have an all natural, non aerosol spray I used that is made of orange peels or something, but it's used infrequently and doesn't seem to be connected. No changes in diet with exception of eating mostly organic foods and eating better. All shampoos, soaps, facial products have been all natural and mostly organic for last few years. I try to do all the right things, but no matter what I do, it always seems to be something.
Now, I could remove the mirena and see what happens, but before I had it in, I was bleeding so bad I couldn't leave the house at times. HUGE blood clots, etc. My last surgery was to remove endo, fibroid and cyst. I suppose the surgery could have helped also, but I literally went from borderline hemmorhaging to spotting. I would hate to have it removed and it not be the source of the issues, or wind up with that problem again. I feel damned if I do and damned if I don't -- at this point I'm becoming really scared and anxious about what the next trigger will be and how bad that reaction will be. They seem to get worse each time. My voice went hoarse this time and neck was swollen to the point I couldn't turn my head.
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Post by rhodygirl on Mar 4, 2012 23:31:12 GMT -5
Oh, and while I haven't had previous reactions to pepto -- the reaction you had is exactly what happened to me on the sulfa antibiotic and on the augmentin. Little pus filled blisters that ooze an crust over and peel in large white flaky chunks. disgusting. And they ITCH like a mother! I got a lot of them on my neck under my chin and I wanted to scratch my skin off. It was terrible.
For years I have been battling severely sensitive skin on my face. That's why I eventually turned to all natural, minimal ingredient facial products. My skin gets raw to the point it burns and it can flare up out of no where. Can be watching a tv show and all of a sudden this crazy overwhelming burning sensation comes over my face (worse around creases of my nose) and it gets all red and raw. I slather lotion all over it and usually by the next day it's a lot better. Then it gets dry and peely and the cycle continues again.
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Post by angelicky on Mar 4, 2012 23:52:51 GMT -5
I've read a few things that say that women with endo have a higher incidents of allergies; nothing suggests that endo causes allergies or vis versa, more they have a common source: immunity problems
never heard of reactions happening so bad to so many things in a short period of time tho
hope you can find the cause soon. Suppose you could take out the mirena and if it doesn't help, and your periods are really heavy again, have it put back in
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Post by 1234 on Mar 5, 2012 10:11:11 GMT -5
I have a crazy immune system too--get allergic reactions to all sorts of things, sometimes can't even tell what. and am in the same boat with the benadryl doing nothing. I had to be on a couple rounds of steroids after my lap AND have a steroid shot in my ass to try to get an allergic reaction to the chlorhexidine under control.
what has helped me is the acupuncture. I'm still unsure what it's doing for my endo pain, but it's regulated my cycle and really helped with the over the top allergic responses. It's been really nice.
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Post by rhodygirl on Mar 5, 2012 15:04:24 GMT -5
Glad the acupuncture is helping you rustmyrtle. I have been considering trying it myself for pain -- even have an appointment scheduled for my sick kitty. However, I'd really like to get to the bottom of WHY, as it's getting increasingly worse each time and kind of scary. I want to know what is suddenly causing this.
I spoke to the allergy/immunology department today at Brigham & Women's hospital in Boston -- and they are sending me a packet of information to have my dr. fill out, do some preliminary bloodwork and testing and then that is to be forwarded to a dr. in their department that focuses on primarily mastocytosis. I don't know much about this, need to research it, but it's the 2nd times someone has suggested it to me, so I suppose it's worth looking into. It could be July before I can be seen by this particular doctor, but they are going to try to get me in sooner to meet with another doc to run some allergy tests particularly for meds, etc. to make sure I'll be safe to have my surgery on the 22nd.
It never ends. I swear.
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Post by redwood on Mar 5, 2012 17:36:35 GMT -5
This is just a far-fetched guess, but do you think your body is reacting to the fact that the mirena is a foreign thing embedded in your body? It might not be the progestin that it emits, but just the fact that it is there (or it could be the type of progestin used). If you have the mirena removed, couldn't you take another form of progestin instead (not an IUD)? That would still keep your periods light. There is also bio-identical progesterone too, which has the same effect. There are several different types of progestins, so if it IS in fact the mirena, maybe a different one would not cause all the allergic reactions. Or have you tried oral progestins already? If so, did you have a problem with side effects?
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Post by rhodygirl on Mar 5, 2012 17:53:51 GMT -5
It's very possible my body is reacting to the mirena and I have considered this -- the thing that doesn't totally convince me is that this did not start up only after the mirena was put in 11 months ago. I've had other issues prior to then (just remembered a few more over the past day or two). It's just intensified since then. Coincidence? My body hates mirena and is even more sensitive to everything else? Who knows. I have taken multiple oral bc's before and had problems with all of them. Not sure if any of them were progestin only, but feel like the mini pill may have been? I'll have to look that up. If so, I got incredibly sick on that. Vomiting and HEADACHES from hell!
I appreciate everyone's input and ideas. I'm stumped and not willing to poo poo on any possibilities at this point. Just don't know the best route to go. I run a business and am in school full time. I can't risk turning into a bleeding mess again -- I'll never make it. On the flip side, I can't take this anymore and really, I just want to get to the bottom of it.
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Post by rhodygirl on Mar 5, 2012 18:20:14 GMT -5
Also, worth noting...and I'm not sure if there is any relevance here...
When I started back up in school this past fall I had to provide proof of my vaccine history. Well, I did that but then found out that I needed to have another vaccine and also titers to show I had already had chicken pox, or else they were going to make me get that vaccine too. SO....I had titers drawn and I had no immunity to ANY of the childhood vaccines I had been given. Some of them, like the MMR I had like 4 or 5 doses of over the years. I didn't demonstrate immunity to any of them. In order to get enrolled in school I had to get another dose of each and more titers drawn to show immunity. STILL....not showing immunity. The nurse at school said she was entering me as "non compliant" in the records. I guess that is their way of saying you met the requirements but your body isn't cooperating...but really? Wth?
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Post by rhodygirl on Mar 6, 2012 9:26:53 GMT -5
Okay, so apparently these issues have been going on longer than I remembered. I just read through my first post here on the forum dating back to November 10th, 2010. It was a very long post (sorry about that, Ladies!) but I clipped this from it:
"And, here's the strange stuff...I am extremely sensitive to certain smells and have the nose of a hound dog. The smell of a skunk literally makes me sick and lucky for me there is one that cruises around my neighborhood from June - October-ish every night sometime between 9-11pm. Even with the windows closed I can smell him come by. I can smell skunk in my basement now. Sometimes I smell it inside my car. Everyone thinks I'm crazy, but everyone once and a while when I smell it, they will get a whiff too but claim it's not very strong and they don't know why it bothers me. All types of chemical smells get to me. All of this has just happened within the last year.
I have skin issues that I have been battling and even with products deemed as all natural (and I mean stuff that is just made with a few all organic ingredients, no preservatives,etc. from independent companies, not something I'm picking up in the big box store). I think it works for a few weeks and then suddenly my face breaks out from it. I can no longer wear deodorant because the same stuff I have used since high school now makes my underarms break out into a vicious rash. I've tried multiple deodorants including the Secret Clinical non scented one which so far works okay in terms of me not breaking out, but it isn't very effective.
I feel like every time I turn around something else is going on with me and I'm so OVER it. I'm so tired of being sick and tired. When I piece it all together this has been going for about 15 years. It's exhausting. I'm a busy woman, I don't have TIME for this anymore. "
Not sure if I should be leaning towards blaming Mirena as much? Although, it definitely could be sending my body into fire mode.
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Post by Karen on Mar 6, 2012 21:14:12 GMT -5
Hmm, that is pretty revealing! I still get the sense that your body is on overload right now because of something, though what it is, I'm not sure! I get that it's very frustrating! Have you searched the web at all, see if you can find anything? I saw the condition that was suggested and it only noted the reaction, not the causes or preventions. There has to be SOME reason for it!
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