Chronic Hives, Delayed Pressure - Try this !

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I have had chronic hives for almost 18 years and sometimes for a whole year at a time.  My docs never had answers and always prescribed the usual antihistamines with little or no success.  I finally started to do some research and discovered a few trials using Sulfasalazine and asked my doc if I could try it.  He was reluctant at first but finally let me try it.  It takes time to work (about 4-6 weeks) but has resolved all my recent flares !

When I initially get the hives, I treat it with prednisone (10 mg for 2-3 days) and once my skin is clear, I start on the Sulfasalazine (2-3 500 mg pills per day).  If I'm still getting some hives, I take a Zantac, especially before meals.  In approx. 4-6 weeks the hives are gone and stay away for a very long time.  Of course, I will get another flare in the future and will treat it again.  As you probably know, when you're having a flare you should eliminate any high histamine foods from your diet - at least for a while.  I do hope this helps someone else with chronic hives caused by delayed pressure.

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  • Posted

    Hi Deb 

    You are lucky you can take the sulfasalazine as it has aspirin in it and that makes my hives much much worse.. It is interesting tho what works for one person will not work for another with these hives.. I guess we all need to find what works best for us on our own as most doctors dont know what to do.. Glad it works for you

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    • Posted

      You are absolutely correct - sulfasalazine would not work for anybody who is sensitive to aspirin. I was so lucky to have found this medication and have it work for me - it has been a life saver !  I do hope you find a solution to your hives.  I recently ordered some DAO and Now Super enzymes to see if they will make a difference.  I do want to find something natural rather than to have to take powerful meds.  Good Luck with your search for a cure and let me know if you discover anything that works for you !
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    • Posted

      What are DAO and Now Super Enzymes?  I am on low dose 3 mg Prednisone a day with 1 Allegra in am and 1 pm very slowly going down on Prednisone.  after a couple more weeks I will try to go down to 2mg......I've been on Prednisone now for about 2  years!!  Hope and pray for remission. I'm 66 and have had Urticaria 3 times in my life each time lasting  2 years.....this time it's 3 years.  I wish you well!

      Wendy

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    • Posted

      Hi Wendy,

      I got this off the web - I haven't tried DAO or the other enzymes yet but one of the theories is that there is an imbalance in the gut and these supplements may help. It has been found that there is little or no evidence of the essential DAO enzyme in the gut of people who suffer from hives. See Below -- It would help to hear from someone who has actually tried these enzymes.

      Two words that gave me back my life: DIAMINE OXIDASE (or DAO), which is a naturally occurring enzyme in your gut. It breaks down histamine and flushes it from your system. It is not patented, so your doctor will never tell you about it (if he/she even knows about it) because you don’t need doctors to cure your problem (in my opinion).

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    • Posted

      Below is a list of drugs which have been used for the treatment of stubborn Chronic Urticaria. I've read many positive articles on Xolair injections, however they are expensive. Dapsone seems to be very effective as well.

      Corticosteroids – Prednisone, etc.

      Intravenous immunoglobulin - human immunoglobulin

      Omalizumab – Xolair Injection / Anti-Inflammatory

      Hydroxychloroquine - Immunosuppressive drug and anti-parasite

      Colchicine – Anti-Inflammatory (Gout)

      Dapsone - Anti-Inflammatory and antibiotics

      Sulfasalazine – Anti-Inflammatory (ulcerative colitis and rheumatoid arthritis)

      Leukotriene receptor antagonist (Montelukast) Anti-Inflammatory (Asthma)

      Anticoagulants – Blood Thinners

      Levothyroxine – Hormone (Hypothyroidism)

      Anti-CD20 drugs (Rituximab and other)

      Anti-TNF-alpha agents

      Cyclosporine – Immunosuppressive drug

      Methotrexate – Immunosuppresive drug and chemotherapy

      Cyclophosphamide - Immunosuppresive drug and chemotherapy

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    • Posted

      Thanks Deb i will research these and talk to my dr about them.. yes the xolair shot is insanely expensive i am grateful my insurance covers it.. But i will take this list to my dr to see what she says as well.. maybe something else would work better
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    • Posted

      Hi Deb and Jana

      Xolair did not work for me.....tried it for 6 months.  Dapsone worked to rid the hives but had to stop immediately after a couple months as my red blood cells went very low and had to go to hematologist to build back up. You need to get frequent blood checks while on Dapsone....I had a good doctor that caught it.  I don't want to discourage just want to share my experience.  Cyclosporine and adding Prednisone was the only thing that worked for me.  I have been off Cyclosporine for over a year but still on low dose Prednisone..I fluctuate between 2-4mg a day and with Allegra. I did not realize there were so many more meds!  I would love to go into remission naturally.  That DAO sounds interesting taking the enzymes .....relieving inflammation is so key with  this awful Urticaria!  Grateful we can share our experiences and keep in mind our bodies react differently.

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    • Posted

      Hi Wendy

      I have been on xolair over a year and it was working well then i extended my last shot and not sure if that is making me have so many breakthru hives now or what.. It was working so well.. I changed my shot time back to every 28 days now so we shall see.. tonight i had hives on my lips and itch all over.. took a benedryl hoping this will not go into angioedema.. I do have some prednisone and may take that if it gets worse. 

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    • Posted

      Hi Jana

      I'm sorry to hear of your breakouts.  Have you heard of anyone that has gone into remission after stopping the Xolair injections?  Is it safe for you to get injections for long term?  How many mg of Prednisone do you take for a flare up?  We all need to heal from within and fix the root of the problem.  I am so grateful that I have been mostly hive free for the past almost 2 years but that is having to be on low dose Prednisone.  Hoping that low dose won't do damage long term. My specialist talked with me at my past appointment about going back on an immune suppressant as she knows I would like to get off Prednisone....just don't want to do that either...ugh.  I wish we knew more about the enzymes DAO...we need to get rid of inflammation......the histamines that are going crazy in our bodies!

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    • Posted

      Hi Wendy 

      I dont know of anyone personally who takes the xolair except me.. I dont know how long i can take it.. I tried to get off of it by extending my shots and now have it back with the shot .. not bad but still have them  All meds are dangerous but i dont know what else to do .. Prednisone is not good either.. It would be easy to heal if we knew what was causing it .. I do not know...it is just so frustrating.. 

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    • Posted

      You are right...Prednisone is not the best to be on either! I'm just relieved that  I can be at a low dose.  My Urticaria could be stress related....although I have had this bout of hives this time since July 2015.  Other times the hives would last about two years then go away for a decade.  This time longer probably due to my age as I'm 66 .  Do you take any antihistamines if you get a breakout while Xolair shots?  Are you in the US I can't remember if you said.

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    • Posted

      yes i am in the US .. i take benedryl if the break out is bad.. if only a little i take nothing and put emuaid on it.. and i am around your age too and had them when we first moved here for about a yr then they went totally away for 8 months then i got them back and they have never left it has been over two years now...
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    • Posted

      Was there stress involved with a move maybe? Actually it's Three years now for me...It doesn't seem that long I guess because I'm managing the hives to stay away......I wish I was "healing them".  When they started up in 2015 they were awful...could not sleep they were severe all over feeling like thousands of bee sting I even went to the ER twice but could not be helped....that was scary.   Went to my dermatologist/ allergist/ immunologist she could not help me so had to go to Johns Hopkins where I found my doctor that was able to get them under control and then hive free...such a blessing!  So you don't know what your trigger might have been to cause the Urticaria?

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    • Posted

      I believe Prednisone is one of the worst medications you can take, especially long term. You probably already know about the below list of side effects. I happen to have osteoporosis so I really have to be careful. I'm not sure that I made it clear that I don't stay on Sulfasalazine long term since it usually gets rid of the hives in 4-6 weeks. Some cases may take longer (6 months) after which I discontinue the medication and am usually free of hives for 8 months to a year before I have a problem again. My doctor will order a liver function test while I'm taking Sulfasalazine and tells me to take a folic acid supplement I have never had any serious issues.I realize this may not be a solution for everyone especially those who can't tolerate aspirin but it might be worth a try for those of you who want to discontinue long term use of prednisone.

      Side effects of oral corticosteroids – Prednisone

      Because oral corticosteroids affect your entire body instead of just a particular area, this route of administration is the most likely to cause significant side effects. Side effects depend on the dose of medication you receive and may include:

      Elevated pressure in the eyes (glaucoma)

      Fluid retention, causing swelling in your lower legs

      High blood pressure

      Problems with mood, memory, behavior and other psychological effects

      Weight gain, with fat deposits in your abdomen, face and the back of your neck

      When taking oral corticosteroids longer term, you may experience:

      Clouding of the lens in one or both eyes (cataracts)

      High blood sugar, which can trigger or worsen diabetes

      Increased risk of infections

      Thinning bones (osteoporosis) and fractures

      Suppressed adrenal gland hormone production

      Thin skin, bruising and slower wound healing

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    • Posted

      There is stress in just living day to day of some kind or another .. But i was so excited to move here and they didnt start till about a year later.. I have no idea what triggers the hives and two allergists, a dermotologist and three internists dont have a clue either.. They said most ppl will never find the reason why.. I just wish i could get mine under control again ... seems they are coming back
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    • Posted

      Hi Jana

      Have you tried Allegra instead of Benadryl?  It sure does work for me especially if you are just starting to breakout again.  I take one in the morning and one at night.  Idiopathic explains it for most of us...unsure of cause of Urticaria.....just wish we all knew the trigger and also wish someone would find a cure.

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    • Posted

      Hi Deb

      i know Prednisone is not good to take but many of the other medications are not good either as I have searched out many of them.  And honestly the Cyclosporine and Prednisone was the only thing that gave me quality of life back after suffering with my body covered with hives and if nothing else works then I had...or have no choice.  As mentioned I am trying to wean myself slowly off the Prednisone....I am down to 2 mg a day with 2 Allegra.  I am fortunate as I have not experienced any bad side effects.  My doctor has me do blood work often. I do have Osteopenia but I am 66.  No other side effects unless some thinning of skin but again is that part of aging?  When I tried Xolair I was losing hair ( some do and some don't I don't want to scare others from trying the Xolair because of that).  So any medications can cause side effects.....just wish we could treat naturally.  Urticaria is a not nice disease!

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    • Posted

      None of them worked for me either Jana......not..even Allegra.  After my doctor got the hives under control to hive free with the Cyclosporine and Prednisone and I got down to taking 2mg Prednisone she added the Allegra as every now and then I would mildly breakout in a few hives and the Allegra worked with low dose Prednisone to keep hives away.  I think she added the Allegra so when I go down again on Prednisone......the Allegra will help to keep the hives away and after I completely go off of Prednisone hopefully the Allegra will keep the hives away without going back on Prednisone.  This is hopeful thinking.

      but when I was severe....none that you mentioned worked for me.  How are you doing?

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    • Posted

      Hi Wendy, 

      When you say you have had urticaria for 3 year.. have you had it everyday for 3 years? This is my third time with Urticaria. I had it 10 years ago for a year, then 5 years ago for 5 months and it returned again last month.. really hoping it's going down in time as I can't stand this any longer.

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    • Posted

      Hi Philippa

      I have had the Urticaria now since July 2015....the first several months the hives were uncontrolled as I tried all kinds of medications.  Once I found doctor that knew how to treat the Urticaria....I became hive free the past 2 years with only a few breakouts.  However I am still on medication as mentioned that is keeping the hives away. 1mg Prednisone in morning with 1 Allegra and the same in the evening......that is what I am down to now...hoping to slowly wean off Prednisone and just be on Allegra....Lord willing!  This is the third time in my life that I have had Urticaria with decades in between with no hives.......I pray for remission!

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    • Posted

      Hi Wendy

      I have not had one hive for two days and have taken nothing... This just drives me nuts but that being said I have gone off my gluten free diet for a few days as my daughter in law is visiting and we have been going out to eat so we shall see what happens now .. fingers crossed . hope you are doing well...

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