Chronic Hives -Frustration with Doctors
Okay this might get long winded but I have to vent about this. Look I know finding the cause of hives can be difficult if not impossible in some cases but I am pretty sure I have figured it out but it's been very frustrating dealing with the allergist, primary care and GYN on this.
The hives started in January. Had never had them before. I have an allergy to Codine and one blood pressure med but nothing else that I know of. Plus there was no new food or medicine or products, that I hadn't used before that had been introduced to my life then.. I was under stress as my beloved dog of 12 1/2 years succumbed to old age and had to be euthanized. Then in February I got a new puppy whose been a handful but the stress is lowering but I still have hives.
Called PC doc. He was out so doc on call saw me and gave me Prednisone for ten days. Hives went away for seven days came back and have been with me pretty much everyday since. They don't respond to antihistamines, the only thing that helps is Sarna lotion That applied to skin stops the itching.
I called PC again. He refers me to allergist. That doc gives me lists of things to avoid for ten days, I do. Hives still there.
I get blood work taken that was requested by allergist. That shows I have low immunoglobulin levels in A, M, E and a high CH50 level. All allergist does is send me results with a note that says he doesn't know what to make of results since he was expecting the immunoglobulin levels to be high and the CH50 to be low. Doesn't explain what my abnormal results do mean or even recommend a follow-up. I called primary care but he is out again. They have me see nurse practitioner who checks with on call doc they were pretty much clueless about results overall too.
Then I researched on line. Not only does it say low immunoglobulin levels and high Ch50 can all result in Hives but can indicate other more serious health issues. The high CH50 count especially.
Since I read that high CH50 indicates there can be an untreated infection I called GYN as I am often prone to UTI's and yeast infections. They found a yeast infection. They treated me with one course of meds. All symptoms including hives went away for five days. Now meds have left my system some symptoms are coming back including hives.
Called this morning to GYN office. Told receptionist that hives were coming back too, she says well that has nothing to do with infection hives are only caused by allergies. Excuse me since when is a receptionist qualified to make a medical pronouncement like that? She did say she would have a nurse call me. I am still waiting.
From what I am reading online some actual medical sites and nutrition sites do say bacterial and fungal infections can be at least related to hives and hives have gone permanently away when an infection has been successfully treated. They were responding to the med till it left my system. Why would the allergist even order a CH 50 test if an infection isn't a possible culprit?
I feel like they are just hanging me out here with out any answers or true help? Any suggestions? Has anyone else read or heard infections can cause hives?
Downwinder
(12,869 posts)They would go away with an Adrenaline shot only to come back the next day. After a week I got ACTH and cortisone shots that cleared it up.
Liberalynn
(7,549 posts)A friend of mine says she's had recurrent hives since she was a child and they never found the cause. She is lucky though in that hers don't itch. Mine itch terrible and I practically have to bathe in Sarna to get them to stop.
I haven't had any new meds or shots. The meds I take for my blood pressure, cholesterol, anxiety/depression are all ones I have been on for years without a problem. Maybe the pharmaceutical company changed something in them but my pharmacy is very good about telling me about things like that. The strange thing is that the med I am on for anxiety actually doubles as an antihistamine. The psychiatrist after talking to the allergist agreed to increase my dose in response to the hives but it's not helping at all.
Downwinder
(12,869 posts)Liberalynn
(7,549 posts)At the allergist's recommendation I have started to use a non allergenic detergent on my clothes but it hasn't helped.
You mention yeast infections and that caused a bell to ring. I think that if you changed your diet to incorporate plain yogurt, the kind that states that it has different types of lactobacillus LIVE bacteria in it and do not consume sugars of any kind, that your hives may disappear. Read all labels as many food products have hidden sugars (yeast feeds on sugars); flavoured yogurts, ketchup, peanut butter, etc, there are literally hundreds. Sodas are particularly bad because of corn syrup.
Then take a close look at hygiene products such as shampoo, soaps, bodywash, etc. They frequently contain sulfates and sulfates cause hives. Try baby shampoo and plain, non scented soap and use baking soda as a deodorizer instead of the commercial kind. Hope this helps.
deek
(3,414 posts)certizine seems to help a bit
Liberalynn
(7,549 posts)Warpy
(113,130 posts)There are even people who are allergic to things like heat. Has the allergist done a sensitivity test for things you are exposed to, including dog dander? That would nail down whether or not it's an environmental allergy and show the way to treatment.
Don't be too alarmed at that high CH50, it's a very broad based indicator that your immune system is active in some way. You will have it elevated with allergic reactions. If you have it in the absence of allergic reaction, the doc needs to find out why. Yours is explainable.
Finding out what you're allergic to is going to be a long term and frustrating process. In the meantime, the danger signs are numbness, tingling or swelling in your mouth or throat. That means call an ambulance, it's life threatening. As long as it remains hives, you're miserable but OK until they figure it out.
My last one was a drug I'd been taking for a couple of months with no problem until one afternoon, HIVES. Fortunately, I always have extra Prednisone and Benadryl on hand because it took me a week to figure out which drug it was.
Liberalynn
(7,549 posts)other tests he would refer me. The nurse from the GYN just called and said the culture they took still shows an extremely high presence of yeast so they do want me to take another dose of the medicine to treat it. Then if that doesn't work they want me to have my blood sugar tested as a possible source of the yeast.
I guess at this point I will see if curing this infection helps the hives too and if not then go back to hunting for an allergy.
Holly_Hobby
(3,033 posts)and sulfates in a blood pressure med. However, I do have a severe allergy to the antibiotic sulpha. The only bp med I can take is Avapro (Irbesartan). All others give me hives from the sulfates.
I now use a sulfate-free shampoo called Dermorganics.
I hope you find out the true cause, it took years for me to figure it out on my own, doctors weren't helpful and still to this day refuse to believe it.
Liberalynn
(7,549 posts)It is a shame that the doctors can't be more supportive.
hedgehog
(36,286 posts)Last edited Wed Jun 11, 2014, 08:41 AM - Edit history (1)
Being passed from doctor to doctor is almost as good a sign of autoimmune disease as any blood test!
http://www.mayoclinic.org/diseases-conditions/chronic-hives/basics/definition/con-20031634
http://chronichives.com/what-is-chronic-urticaria/autoimmune-urticaria/
On edit - Many of us with autoimmune problems "flare" after UV exposure - sunlight!
If you've been spending more time out in the sun lately, that may be part of your problem.
Liberalynn
(7,549 posts)I think after reading those articles an auto immune problem is possible. Especially since the immunoglobulin levels were off on all but the G.
hedgehog
(36,286 posts)Liberalynn
(7,549 posts)A Physician's Assistant actually told me to try taking two 75 mg tablets of Zantac(the antacid) twice a day for six weeks instead of a traditional antihistamine. Since I have started doing this I have far fewer breakouts of the hives and they no longer itch.
I am still trying to get a referral to see an immunologist about the immunoglobin levels that were off.
Thanks for checking on me.
hedgehog
(36,286 posts)especially with Summer here!
freebrew
(1,917 posts)depends upon where you live.
I had hives as a result of taking Celebrex for 5 years, at the time no one knew that was an indication of impending heart problems. Now I know.
Winter is worse as the air becomes drier and your skin pays the price.
J&J baby cream works best for me right after a shower.
Liberalynn
(7,549 posts)I live in Western N.Y. The immunologist was commenting on my dry skin, and wondering if it might be related. He said he wants to get me through this latest round of hives first, then he wants me to begin allergy testing. He said he changed his mind on that since all my immune blood tests came back normal, before he thought it was something wrong with my immune system versus an allergy.
pnwmom
(109,567 posts)I had to go off gluten because of other symptoms and positive blood tests -- and one of the bonuses was that my intermittent hives disappeared and never returned.
Nay
(12,051 posts)the kind you stir into smoothies, etc.)
WebMD lists infections as one way to get hives, so I have no idea why your doctors act like that's a weird idea:
Chronic urticaria and/or angioedema: Hives or swelling lasting more than six weeks. The cause of this type of hives is usually more difficult to identify than those causing acute urticaria and/or angioedema. The causes can be similar to those of acute urticaria but can also include autoimmunity, chronic infections, hormonal disorders, and malignancy.