anyone know anything about CHRONIC hives???

Discussion in 'Fibromyalgia Main Forum' started by kadywill, Jan 22, 2003.

  1. kadywill

    kadywill New Member

    I have suffered with chronic hives and angioedema (swelling of the mouth, lips, throat, eyes) for thirty years and I am having a flare now. No one has ever been able to tell what brings this on and I've been tested by the best. I gave up on all the tests in the late 1980's when the docs at Duke told me that I may never know what causes it. They said I have an autoimmune, connective tissue, collagen vascular disease of some type, but they didn't know exactly what it was. I guess I could've stayed on as a patient and paid for every test known to mankind, but I couldn't take it any longer. What I know now to be chronic pain and fatigue makes it impossible to continue to see doctors so often. It takes a lot of energy to do that over and over and then I'd get my hopes up that doctors would, at least, find a treatment for this that wouldn't be as horrible for me as the large doses of Prednisone were. Prednisone has always been their treatment of choice and I was very suicidal the last time and I just can't do that again. Not to mention the cataracts, kidney problems, liver problems, blood pressure problems, weight problems all associated with the steroids.
    So, each time they flare they stay for months at a time and I look/feel miserable. I am really bad today! My body is covered with giant hives and I have scratches and bruises from scratching in my sleep. My eyes and lips and throat are swollen. My body temp rises drastically at sundown each day and the itching intensifies. My skin hurts. The bottoms of my feet are swollen, making every step painful. I could claw my skin raw with a wire brush and scald it with hot water to make the itching go away, but I learned the hard way that only cold water (which KILLS me) and NOT scratching can prevent the histamines from coursing throughout my body. I used imagery last night to envision those little histamines actually being destroyed by my body, but I woke up worse than ever. I keep epinephrine on hand every minute of the day for self-injections. I used it last night. This isn't dry skin. This isn't a new detergent or a new fragrance or a different food or a new medicine......I've been through that crap for so many years that it pisses me off to be asked those silly questions. Don't you know that I have thought of every possibility over the past thirty years and that I would do anything at all and take anything at all to prevent this from ever happening again????
    I gave in and accepted the samples of Allegra the doctor gave me the other day, but I knew from experience they wouldn't help at all. He also wanted me to take Zantac, which is also a histamine blocker, but I took that for probably ten years without results, so I didn't try that again. I know the doctor doesn't know what to tell me and I hate to sound disagreeable, but I have tried all that they are offering now and I cannot afford to spend the money on meds that have proven to be useless in the past. PLUS, I am taking additional meds now that these can react adversely with, so I have to be careful.
    Does anyone know of anything NEW in this area? Please advise if you can. I already know about the Aveeno baths and topical treatments, but this isn't topical, it is systemic and these don't help. Benadryl isn't effective and I take Atarax (Vistaril) routinely.
    Please help if you can!
    Love,
    Kady
  2. AnnetteP

    AnnetteP New Member

    I had hives for years, off and on. They started when I was in a hotel in D.C., and I was concerned I may have picked up something there (no, this wasn't a pay-by-the-hour hotel lol). I went to see a dermatologist and he said that, while I may have had a bacterial infection (he gave me an antibiotic), hives were common in people with hypothyroidism. I hadn't really noticed any changes with synthroid, so I stopped taking it. But, after he told me this, and the neurologist told me my eye and lip twitching was also due to not taking my thyroid medicine, I got back on it. Eventually, the itching stopped.

    Fast forward 5 years...itching was so horrible, I couldn't wear eye makeup due to the fact that I would rub my eyes all day. Plus, it burned to use eye makeup remover since my eyelids were peeling. I had to stop using my glycolic cleanser and retin-A, and switch to Cetaphil.

    I found a new dr. who tested me for tons of things. In addition to having a very low thyroid, I had elevated eosinophils (which indicates allergies). She put me on 2 grains of Armour and a supplement that contained a small amount of quercitin, among other things; I still had hives and was taking Bendaryl. So, I dropped that supplement and added Solgar's quercitin complex, taking 4-6/day. That seemed to do the trick. That was over a year ago, and now I take only 1 capsule a day, even though I finally beat the hives/allergic reactions. I can stop taking quercitin (which I have done on occasion) and never have the problem return (I now take it for the other health benefits it provides).

    So, my suggestion to you is to try the supplement and find a dr. who will adequately test your thryoid.

    Hope this helps,
    Annette
  3. kadywill

    kadywill New Member

    I cannot express to you how thankful I am to have a plan now! I do have hypothyroidism and have been treated successfully with Levoxyl 25 mcg. for several years, but this hasn't prevented the hives from returning with a vengeance. I had read of a website (MD) about this supplement long before this flare happened and I forgot all about it. I'll call GNC locally to see if they have this complex and if they do, I'll start it today. Any adverse effects with other meds???
    Thank you SO very much. If this works, I will owe you my life!
    Thank you!
    Love,
    Kady
  4. pam_d

    pam_d New Member

    This sounds awful! Hopefully the advice you got above will give you relief.

    If not, have you considered dye sensitivity? My daughter didn't get the swelling, but did get very severe hives. After much spinning our wheels, we finally tracked it down---she was allergic to a type of red dye (as a baby, she was allergic to the antiobiotic Septra; to this day, though, we don't know if it was the sulfa-drug itself, or the fact that the liquid was bright pink). As she's gotten older, the problem is less severe (for example, she can now have a few red M&Ms with no problem) but we still keep her away from large amounts of foods/drugs with heavy artificial colors.

    Worth checking out if you are taking any colored drugs, etc.

    Good luck, I hope you are able to figure it out & get some relief! This does not sound fun at all!!

    Sending healing hugs,
    Pam

  5. kadywill

    kadywill New Member

    I'll check this out, too, but I can't think of anything at all different or anything with coloring in it right now. I'll investigate more about it, though!
    Thank you!!!!!
    Love,
    Kady
  6. AnnetteP

    AnnetteP New Member

    since I take no drugs, except for Armour (if you can call that a drug) and a very miniscule amout of Cytomel.

    I doubt GNC has Solgar, so if you go with their brand, make sure you take about 500mgs 3x/day. Also, quercitin should not be taken alone as it works best when its in combination with bromelain (quercitin is an antihistamine and bromelain is an anti-inflammatory).

    Have you had your eosiniphils checked? If not, I would request that test, at least so you can monitor it (mine is now back in range). Also, I wouldn't dismiss the hypothryoidism link, just because you are on what appears to be a good strength of medicine. Its quite possible you need a stronger amount, and maybe even T3. Please read more about the subject of hypothyroidism and its link to CFS/FM, and don't rely soley upon your dr. to make decisions for you, because most of them are not experts in CFS/FM and don't realize that often one most go beyond the so-called "normal" lab values in determinig strength. If I didn't have T3 I would be a zombie, because I do not adequately convert T4 to T3.

    Good luck,
    Annette
    [This Message was Edited on 01/22/2003]
  7. kadywill

    kadywill New Member

    my PCP won't consider Armour~~thinks it isn't reliable and won't do it. He can see no relationship between the hives and the thyroid and I can't afford to go doctor searching again. What to do??
    I did not go to GNC~~I went to my little pharmacy to get my other meds and the pharmacist ordered Quercetin mixed with vitamin C and it should be in tomorrow. Can I get the Bromelain separately since he's already ordered the other???? He also told me that it could take 3 months to see a difference!!! Is this true??? Please tell me you saw relief before then...
    Love,
    Kady
  8. AnnetteP

    AnnetteP New Member

    Three months is usually how long they say to give a product to work. But, that doesn't mean you can't experience improvements in a shorter period of time. For instance, if you have a toxic liver and take milk thistle, don't expect to see any significant results in a week. However, if you are having allergic reactions, you should see some resolve within a few days, depending on the severity of your problem.

    It took me a long time to feel relief with quercitin, but that was because I was not taking enough. Once I got the dose right, I had no recurrence of hives. When I would run out, and start getting hives again, it wouldn't take more than a day to bring the problem under control. Now, I no longer need quercitin for hives, so that could be what the pharmacist was referring to: it has corrected my reactions. (In the future, you can probably find a cheaper, and possibly better quality supplement, if you look for something online. I order ALL my supplements and they are all at least 40% off retail, and this is for name brand products.)

    As far as your dr.'s opinion on Armour, he is incorrect. Armour IS standardized and the propaganda that it isn't, I think is perpetrated by pharmaceutical companies. If you must remain with this dr., please educate yourself on this. You can find lots of medical literature to present to your dr., and if he is open-minded enough, he will look at it. Otherwise, you owe it to yourself to find a dr. who is open to 21st century medicine. I have said it before, and I will say it again, "It takes 17 years for dr.s to implement into their practice, what is being written about in medical journals TODAY!" Don't settle for a dr. who still practices medicne of a decade ago.

    Good luck,
    Annette