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Hi - I was diagnosed with Sjogrens just about 2 years ago, but have probably had it for over 10 years.

My question to the forum is this. I have been suffering dreadful bouts of hives during the last 12 months, and have been trying to identify what is causing them. I have just been searching the internet and find that hives are a symptom of Sjogrens.

Does anyone else with Sjogrens suffer from hives and if so, any tips or solutions for the management of them, as they are driving me NUTS. Thanks :-)

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Hello there Barbwire,

I see that you have posted this question long time ago and I am wondering have you found solution to your problem?

My aunt is suffering from sjorgen’s and recently she has developed problem with hives as well. Unfortunately I haven’t been able to find any solution to this and we have our appointment in about 15 days (I am in charge for driving her to the doctor) and she is complaining about this issue. Also I am considering going to the ER but I am not sure if they will be able to help.

So, if you know how to make her suffering easier please respond to my post. Thank you in advance.

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I take Benadryl to relieve my hives.
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I think that sjogrens makes us more sensitive to thing. I had an awful rash for over 2 years. I cut back on my gluten, and it has helped a ton. I also try to limit my caffeine and stress. I hope this helps.
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I've had Sjogren's for about 6 years. I recently had my third bout of hives. I visited an allergist who discovered an allergy to red meat and pork. He said people with autoimmune diseases do have spontaneous hives.
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I have suffered from giant hives with extensive bruising on the body of the hive itself. An allergist put me on Zyrtec and Singulair. He had become an allergist as he suffered from the same issues. In experimenting with new medicines for allergy, he found his hives and those of patients with giant hives were entirely controlled by these two drugs.

It has been miraculous. Within a couple of days of starting the regime, my hives went away. I have not had an episode in the 12 years since I met him. I do begin to form hives if I run out of Zyrtec and cannot get it right away. I begin itching and then can feel the hive coming up from beneath my skin.

I hope this is helpful to all of you. I will always hold that allergist in the highest esteem. 

I also have Sjogren's.

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Hives and Sjogren's. I have primary Sjogren's, have had for 15 years. Joint pain, dry eyes, mouth sores, yes, but no hives until four years ago--little extremely itchy blisters. I never know where they'll pop up. I think stress has something to do with it. I don't take anti-allergy meds because they make my mouth drier. I use CALACLEAR lotion, four times a day. It has the same basic ingredients as the Calamine lotion used for poison ivy, which I used to get quite often as a child. Lathered with CALACLEAR I can sleep though the night.
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I too have Sjogrens and have been suffering from hives for eight months. So far I have found no help with the problem doctors don't seem to know what to do with me. Does anyone have an answer?
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I use Benadryl. But only if they are on my face or become unbearable. Usually I let them just run their course.
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I have SS and have had hives due to photosensitivity for the last 10 years. Usually it's worse between March and July. I'm very careful to wear a lot of sunscreen and not stay in the sun too long. The hives generally appear on sun exposed areas - usually arms and legs, sometimes face, neck, chest. They don't appear until hours after exposure and when they do I immediately take Allegra - this reduces the intensity and number of hives. Without it I get 30 - 40 large incredibly itchy hives. 

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My doctor put me on thyroid medication. She said I have antibodies in my thyroids due to the disease. I have suffered from hives and welts since I was a child and still do today at 30. I get them so bad my eyes, lips, tongue and throat sometimes swell from them. Literally get them from head to toe! I never have a episode as long as I take my thyroid medication..or Unless I get sick..then it doesn't really help because my immune system is weak and trying to fight off the illness making it even weaker. She has me on prednisone, singular, loratidine, and cimetidine to help when I have a breakout. I have a epipen just in case my throat and tongue swell and have no relief from other meds. I have to say, these meds really help me. Before I was put on meds my pcp kept diagnosing me with having an allergic reaction and just giving me Celestine shots...I mean for 10 years! Luckily I finally saw an allergy Dr. who diagnosed me properly! Without my medication, I can have breakouts at any given time with no warning..anything can trigger it. One thing that sets me off quick is dyes..especially food dyes. I suffered for years until I found the right Dr. So Hopefully this is somewhat helpful?
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I too have Sjogrens and also have been suffering from giant hives for over a year. I have been to every type doctor I can think of. The latest is a dermatological immunologist at Emory in Atlanta. I am now taking 2grams of sulfasalazine, plus 2 antihistamines and 2 ratinidines daily . My flares have dropped considerably but not gone altogether. But since I have been on this medication my thyroid has changed considerably. It seems to be a never ending battle and no doctor has an answer for them. I guess we are just special.
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I don't know if you have found an answer by now but I have had SS for almost 20 years and also have suffered with hives and angioedema. My Rheumatologist has put me on Zyrtec as well as Plaquenil with good success. I also take short term Prednisone which helps clearing it up more quickly. Once it starts, however, a bout can last for months.... and as you know it is very distressing to be going through it for so long. My last bout of hivesand angioedema was about 8 years ago. I believe that it can be cyclic every so many years. Unfortunately, mine occurs every 8-10 years and I have been suffering with it since age 10. No one could really give me much hope at the time but since then, many years later, there are improved ways to control it. My heart goes out to you because I know how painful it can be both physically and emotionally. Hang in there...
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I suggest you see a Rheumatologist as I have had success in being controlled with the hives and angioedema. If you live in the Atlanta area I suggest you check out North GA Rheumatology. I have been seeing them for 20 years for SS and the hive issues. I starting taking Plaquenil and Zytec daily that has helped prevent exacerbations along with a Prednisone dose pack when I do have an outbreak. My last serious bout was about 8 years ago. I hope this information helps you and that you find an answer very soon.
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Be very careful taking antihistamines. I was taking both of those also for years; none of my doctors ever told me stop taking them because it exasperated the Sjogrens. I get scalp and facial hives, only take Zyrtec if I cannot stand the itch. Good luck!
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