Hypersensitivity reactions in lupus

Saw the immunologist yesterday. He's convinced I don't have any allergies to the environment or foods. He ran tests and ruled that out. He said I have antibodies to my mast cells, hypersensitivity reaction.

It doesn't matter what I come in contact with - everything has the potential to cause an over active reaction, even emotions, stress, etc. That explains why I had a flare when my mom was sick and I was worried, explains why I had a flare before going to China. Bad stress and good stress, resulted in a over sensitivity reaction.

Drugs are a huge problem for me, one day it will be ok, the next I'll take the same thing and have a problem. Foods will do the same thing, but not always, it will depend on what else is going on that might trigger an over sensitivity reaction.

He thinks this is probably been going on the last several years of my lupus, prior to transplant. Might have contributed to why I did ok with rituxan, but than had a reaction to it, but did fine when I had it post transplant. Why one platelet infusions caused a problem, but another one didn't. Why it seems plaquenil causes itching and when I stopped it, I thought the itching stopped, but then it came back. Why I have been going absolutely crazy with itching and trying to figure out what a trigger might be and never could.

I'm on 2 antihistamines (Zrytech, Allergra) Zantac, which reduces H1 antihisomine, along with an nasal and an eye antihistamines, steroid nasal and eye drops. He also wants me to stay on the 5mg of prednisone and if I start to flare with itching, despite all the antihistamines and have any lung wheezing, to increase to 10mg and call him. He has me seeing him monthly, because he wants to make sure I'm not degranulating too many mast cells and causing increased lung symptoms.

He said there isn't much he can do about it, except treat the symptoms and it's autoimmune disease, so if the symptoms get severe again, despite the antihistamines, he'll try immune suppressants. Well golly......

I found this information and thought anyone else who has itching or allergy symptoms with their lupus might find it interesting too.

pathmicro.med.sc.edu/ghaffar/hyper00.htm

Thanks Kim, that seems to explain some of my stuff too. I was outside midday for ten minutes the other day (winter sun, wearing hat and coat) and I got itchy bumps on my face, the only exposed skin. And different medications are giving me coughs, as well as some foods (chocolate!).
Erica

I thought of you.

I don't have a specific, constant trigger. I just never know when I'll have a hypersensitive reaction to something I eat, do or medication I take daily. Some medications are clear triggers, such as narcotics, heparin, sulfa drugs, while others, such as Advil or Tylenol will cause me to itch, but some times it's not any worse than what I experience on a daily basis. I tell you I was absolutely thinking I was going crazy, even considering an antidepressant to see if it helped.

The other day I had itchy bumps on my face, along my hair line and down my jaw line and my hands itched, but no bumps, just really red and stiff, after I was out with the dog for a while, talking to a neighbor. But, that doesn't mean it will always happen. Sometimes I'll be sick, with an upset stomach and cramping nausea, or itch more after eating cheese, chocolate or wine and other times not. Same with shell fish. I was making myself nuts with trying to figure out what the triggers were, finally I just gave up.

The immunologist said that I'm waxing and waning symptoms, based on the autoantibody production and degranulation of mast cells. I'll always have some symptoms, such as inflamed sinus, eyes itchy, runny nose or eyes. Cough, wheezing, itching and other symptoms of allergy, just never know how bad or what will flare.

He said it's not common, but seen in lupus patients, although he also said you can have this without lupus and isn't sure it's actually lupus related, or a primary autoimmune disease. I think what he was saying was to try and calm my fears about lupus/ITP/APS returning. My ANA is negative, as is DsDNA and APS, so I hope this is the only autoimmune disease I develope, although this is unpleasant, I guess I could learn to live with it. The combination of allergy medications he has me on work well and my symptoms are relieved. I do think the allergy medications raise my blood pressure though. I was doing well with normal BP and that was without my BP medications, but now my BP is going sky high, even with starting back on the BP medications at higher dose then I was on a few months ago. Now I have to go see my cardiologist to get another medication to manage the BP. I can never seem to eliminate or reduce medications and when I add one, I end up adding 2 or 3, if not more, just to counter the new medication. So, although the allergy medications are working, I'm struggling with something else. Argggg....it never seems to end!

You should go see an immunologist and see if that helps your rash problems, maybe a combination of allergy medications would help you too.

I really find this article interesting, because it talks about Type II Hypersensitivity, causing thrombocytopenia. I also noted that in Type III, (which includes lupus) there's a decrease in complement, which I have never had with my lupus, except when I had DsDNA's. I'm wondering if my symptoms prior to transplant and currently experiencing, such as joint pain, fatigue and the itching and burning neuropathy, are HypersensitivitType II, as opposed to Type III and contributed to my ITP and not actually lupus, with ITP. I don't know, I'm just thinking out loud and my hands happen to be on the keyboard, so you're reading my thoughts. Lol.. Although I find this interesting, I hate it too. If it wasn't happening to me, I think I'd love to be a scientist and researcher, but then I'd just be going on my way and never have the reason to learn this stuff.

Here's a good article on autoimmune chronic urticaria.

www.medscape.com/viewarticle/461843_3

Gee, my normally medically-inclined brain isn't grasping that. I'll have to re-read tomorrow. I'm just not clear headed any more, probably due to the Vicodin.

The news stinks, Kim, no matter how you look at it. You always try to see the positive and that's great, but there is no END!

I have constant sinus issues too - ALWAYS stuffy. I'm actually embarrassed by my own voice...it's always nasal-y. How can you be professional at work when you can't speak clearly? Not to mention how miserable it is. Nothing helps.

I'm having a down day so I'd better shut up.

I am not doing well....I made a BIG mistake tonight. I was not feeling well, my back and chest were hurting, which seems to be happening more lately. I could not lay down without increased pain. I took a Percocet and because I was concerned with taking a Percocet, along with a Zrytech, I skipped the Zrytech. I have no idea if I could take both and Now I'm awake without pain, but with intense itching, head achy and short of breath. I think I'm having a more severe reaction to the Percocet then I have had in the past. I can usually manage it without to much itching, but tonight is especially bad and I'm up at 2am watching TV, feeling miserable and worried, so decided to open the computer and check the forum and hopefully be distracted from how I feel. This is not good...I don't think there's a pain med left, which I can take. Can't take Tylenol or Aleve either, because they also cause itching. I have no idea what the hell I'm going to do for pain. I'm really worried about this and not sure I'm going to manage the stress of it very well.

You're right Sandi...it never ends and it sucks. I'm feeling the stress today of this crap and this middle of the night upset isn't setting well with me. I have to keep occupied with something or the itch and worry will make me insane. I took a Zrytech to see if it will help, but I actually think it feels worse in the last half hour since taking the Zrytech. I don't know if I should take some benedryl. I can't stand this anymore.... It's making me sad.

Regarding your sinus issues, have you tried a nasal antihistamine spray? It seemed to help me, although it's disgusting to spray in your nose and leaves a terrible taste and feeling in your mouth and nose. I think I'll go spray some now and see if it helps any with the itchy feeling I have in my nose and mouth.

Kim

Kim:

Have you tried the Fentanyl patches? That is the only suggestion I have besides low-dose Morphine. I really wish I could use something stronger than Vicodin because it doesn't work very well, but I'm afrais I'd be brain dead.

I have a steriod nasal spray script and use it all the time, along with salines. It doesn't help. I also take decongestants - no help. My ENT wanted to do three separate surgical procedures, but said they only work 20% of the time. Not sure I want to go through all of that for little response.

Did you get through the night okay?

Sandi, have you tried Nasalcrom? It's not a steroid, it's a nasal spray, it was Rx when I used it, not sure about now. Anyway, it takes about a week to kick in but it let me live with cats for a decade and breathe. You have to use it every day a couple of times/day. nasalcrom.com/ I had zero side effects. Apparently there is/was also an eye version (opticrom?) for people who get itchy allergic eyes. Erica

I've only ever had Flonase. I got that from my GP and when I saw the ENT, he suggested the same thing. Apparently I have a deviated septum and enlarged turbinates. My nose never runs (I wish it would).

I saw a commercial a few weeks ago that described my problem exactly. Constant blockage due to inflammation. The ad was for Advil Cold & Sinus. I bought it, took it and noticed slight relief, but nothing major.

I'll check out your Nasalcrom.

I was out for a half an hour today in the sun, my foster dog had a play date and I was supervising, I was wearing a winter hat and coat but my face and neck were exposed. Now I've got hives all over my jaw line and edges of my face, and my neck. I took a benadryl. I guess I just had to test it again. Am I supposed to start wearing a hijab when I go out? I guess when I have a job it won't be so bad, I'll be indoors working during the day.

So Kim, apparently the only thing to do is the zyrtec, and benadryl, and maybe I should use a litte pred when it flares? I'm seeing my rheuma in about ten days and I am going to ask about this and ask if I should see an immunologist.
Grrr. Erica

You may also want to consider Zantac, which is a H2 histamine antagonist. I find combining Zantac, Allegra and Zyrtec, along with an antihistamine nasal spray and flonase, saline eye drops with an antihistamine eye drop is about the best. I'm still taking 10mg of prednisone daily and trying to get that down to 5, alternating 10, 10, 5, 10, 10, 5. I notice on the 5 day I have more symptoms, so I may go back to 10 and decrease the dose to 8 or 9 daily and see how that goes. I don't have 1 or 2 mg tablets, just 5's and 10's, so I'll have to get a script for the smaller dose if I decide to do that. I still itch all over, but at least I can tell myself not to scratch. The rash still flares, but I'm down to once or twice a week, or less if I can manage not to scratch.

I can't seem to manage Benadryl, it keeps me awake, but Zrytec helps me sleep and Allegra is not as sedating as Zrytec. Benadryl is initially sedating, but then I wake up and can't get back to sleep. Zrytec keeps me asleep until I wake up and have to pee. I can get back to sleep quickly while on the Zrytec, but not with Benedryl. I have no idea what the difference is in these medications and I'm to the point I don't even care any more. I'm very frustrated with this and I don't don't like to itch all the time, makes me depressed and I'm not sure if it's the medications or the itching.

I have no idea what's going to happen in the summer, and I'm trying not to think about that. Ha...a Hijab might be the only solution! I know when I'm outside in the cold or wind, I get itchy, when I get too warm, I get itchy. I was getting burning hot feelings, but since the combination of antihistamines, that's cooled down and I'm sleeping. It's absolutely annoying and frustrating.

I also have dermagraphic urticaria and contact urticaria, so pressure causes hives and skin changes. My support hose cause a rash, so I have to worry about wearing them and not wearing them. If I wear them I get a rash on my lower legs, if I don't wear them, my legs swell and hurt. At least the medications help that and I can wear them more now without too much problem, but they do still cause rash and itching, just not as bad. My watch will cause a rash, or itching. I'll smell something one day and it's fine, the next I can't breath and my nose gets stuffed, my eyes run. I have an air fresh plug in, which I've used for years, but now I have to unplug it sometimes.

It's just absolutely insane and sometimes I think I'm going insane and it's all in my head. If I didn't get rashes I'd think I was insane. I've also seen that my eosinophils have gone back to normal range since taking the antihistamines, but now my platelets are down from 250-270 to 148. That has me freaked out, so now I'm back to worrying about platelets. I don't know if antihistamines can cause a decrease in platelets. Anyone know if any of the histamines I'm on can cause a decrease in platelets.

Over the weekend I started with stomach bloating and pain, barely eating. My bowel movings are now completely different, yellow and floating, some formed, some not and urgent. So WTF is that now. Sorry, I'm totally done with this crap. Literally! Lol.. I'll give it another day and if that doesn't change, I guess I'll need to call a doctor and get it evaluated.

It just never ends...I hate autoimmune disease, it has made my life difficult and unproductive, annoying and frustrating.

Sorry, ranting...

Some meds can make the bowels sluggish, maybe that's it.

Not sluggish...that's my usual stomach symptoms, because I have gastroparesis. Now I'm going more often and they are different then my usual. They are yellow floaters. Yuk! They also reek, as does my flatulence. Could be gallbladder, could be pancreatic cancer, could be celiac. I've been tested or celiac, but who knows, I could develop it, couldn't I?

I don't have too much pain, although I've had so much pain in my life, I'm not sure I'd notice what gallbladder pain is supposed to be, or that it's supposed to be the worse pain someone experiences.

I do have bloating and gassy pain, so maybe that's what it's supposed to be. Maybe when people complain about gallbladder pain, they don't already have lupus pain, so they describe it as the worse pain. That's not consoling to me though, because it makes me depressed to think I'm living with pain worse then someone else's worse pain. Sounds totally stupid, but that's about how I feel today, but I guess if it's gallbladder and I manage the pain, I guess that's a good thing. I certainly don't want it to be liver or pancreas problems.