My cure for hives after 21 years
Posted , 24 users are following.
I thought after 21 years, I would NEVER find a cure. I was diagnosed after taking two Ibuprofen. It almost killed me, and the lasting effect was hives. I couldn't do anything or go anywhere without being covered in hives. I could no longer wear sundresses, shorts or capris because my legs and arms were ALWAYS covered in hives. I went to bed with them and I woke up with them. I was allergic to everything. I saw more than my share of doctors, even a Hematologist. Nothing worked. I took every prescription, cream, lotion, and shot available, including two cycles of Xolair. Nothing. The stress of itching all day, every day was overwhelming. The swelling it caused in my hands and feet was unbearable. Then one day, I remember having an allergic reaction to Aleve years ago, ending up in the ER where they gave me an IV drip of Pepcid. I thought that was odd. I even mentioned it to my doctor, and he said huh, an H20 inhibitor. Not knowing what he meant by that, it didn't mean anything to me. All these years I continued to suffer with no hope in sight. One day I started thinking about the drip they gave me and while I have been on Prilosec for years due to having Asthma and Acid Reflux, I had never taken Pepcid AC. I had been on Zyrtec for years for my allergies, but it did nothing for my hives. I decided to switch fro Prilosec to Pepcid AC and used it with my Zyrtec instead. After a few days, I couldn't believe my eyes. I had them before on my hands and feet. Now, nothing! I was shocked they were going away. Over time, they continued to disappear. It's been about a year now, and I have not had one hive. I feel as though there are phantom hives on me, when I look, there's nothing there. I am so relieved of the stress of having to deal with it everyday. I know this may not be a cure for anyone, but for me it was a Godsend, because I was at the end of my rope. I take 4 Zyrtec and two Pepcid AC everyday. NO HIVES in almost a year. My doctor was shocked that that combination worked, but since he was at the end of his rope and there was nothing else he could do, I think he was relieved I healed myself. I didn't change my diet, my environment, or anything. Good luck to you all and I hope you find a cure, because I know exactly what hell you are going through. After 21 years, I AM CURED!!!!
7 likes, 71 replies
Jmoney74 rene87378
Posted
This isnt a cure. What happens when you stop taking the meds... Does it come back?
I'm finally getting over hives but it took awhile to figure it out. There is some truth to leaky gut but nobody really knows how to cure it. Usually our stomach lining is thick and has mucus to take care of the bacteria and histamines. When compromised it will lead to immune reactions like anxiety fatigue and hives. When it all began for me I started taking benedryl. Then Allegra. Then Allegra and pepcid. Worked for the hives but everything got worse. Eventually had to take more and more to keep it down.
Unfortunately I found out I had an hour pylori infection which causes damage to the gut. Finally took two rounds of antibiotics and got rid of it. My gut was a mess. Took probiotics because all the blogs told me to. Made it worse and hives were just as bad. Decided to cut the antihistamines for good. That helped as it seems to just hold the hives back to only have a strong reaction later. Also read that a bad gut can't heal when you keep giving it more bacteria. So took another round of antibiotics and I'm finally feeling better. So here are some tips.
Get checks for h pylori
Go on a clean diet. No spices. Alcohol. Caffeine. Citrus. Plain and easy to digest is key.
Stop taking the antihistamines. It just makes it worse. It slows down the bodies natural healing so you'll be caught Ina longer cycle.
Definitely don't take pain killers. These stop your gut from healing (ibprofein etc)
wendy62425 Jmoney74
Posted
Hello
this is all so depressing. I have had hive breakouts a few times in my life each time lasting about 2 years and was able to keep the hives away with Claritin one time Singular the other and now on Allegra, Montelukast and have been down to 1mg Prednisone. I am now 66 and the hives were so severe NOTHING WORKED...Xolair Etc...etc.... that doctor had to put me on Cyclosporine and Prednisone with very slow going down and off the Cyclosporine and down to the 1mg of Prednisone ( it has taken a year to go down). She does it so gradual by 1mg at a time for a few weeks then down again 1mg and so on....so your body slowly gets use to the less amounts of Prednisone going in your body.......otherwise I would break out terribly. We are working on getting totally off the Prednisone using the Allegra and Montelukast......all so gradual to wean off meds. I had gone to a naturalpath doctor prior and she put me on probiotics to help the Gut. It's amazing what works for some does not work for others. Fermented foods are suppose to be good as well for Urticaria. All I know is that I needed quality of life to be hive free. My hives were so severe when I went to doctor at Hopkins she could not believe how bad...I was not able to sleep and was in agony 24 7.!! So I will continue to slowly wean off these medications........and pray that I can go into remission. If I were to stop all meds now I would be right back where I started.....in a very bad place. And that place was having to go to the ER and doctors unable to help me. They could give me a shot but as they said after it wears off I will be suffering again. They could not help me........
its an awful disease. My breakouts seem to be brought on by stresses in my life each time. I'm just greatful for my doctor for trying this method on me. As she said...."..I never want to see you like that ever again".......as she left the examine room. she gave me hope that she would try her best to help me.
I am thankful for these blogs
i wish you all well! Let's keep these blogs going.
Blessings,
Wendy
robnjessmom Jmoney74
Posted
Jmoney74 robnjessmom
Posted
I took them separately but it made my gut worse. The meds won't let your gut heal.
stephen12189 rene87378
Posted
It's H-2 blocker, not "H20" ..... H2 is a histamine blocker; your body's natural way to deal with histamines is to dissipate through hives on the skin. The Pepcid AC blocks histamine receptors, thus eliminating the hives. Try drinking lots of water instead, and I mean at least a gallon every day.
wendy62425 stephen12189
Posted
What does drinking a lot of water do for the body for the hives?
thank you for posting.
Wendy
arlinda24661 rene87378
Posted
I've been having hives for about 2 years but was on cyclosporine for over a year and hive free. I took six 25mg twice a day and started weening myself off a few months ago, because I was starting to affect my kidneys, and now I'm down to one once a day but the hives are coming back. I was taking two Allegra twice a day and my husband started reading online and told me to substitute two zyrtec for allegra and to take zantac. I remembered that the allergist had me on pepcid so I stated taking one of those at night and a zantac at night. I haven't been brave enough to take two zyrtec because it really makes me drowsy but since I'm still getting the hives, and they're getting worse I'm going to try it tonight but I think I'm going to have to stick with the allegra in the morning because I don't think that I can function with Zyrtec during the day. I'll keep you posted because the hive are really coming back, I even have one on the bottom of my foot. Do you take four zyrtec at once? Doesn't it stop you up? I'll keep you abreast of my progress.
sandi65070 arlinda24661
Posted
Have you tried Xyzal? The allergist I saw said I could take 4 times the amount recommended plus Pepcid. She also said that they now have a biologic that they've had good results with and no one in her practice has had side effects from it.
good luck - hives are horrible!
wendy62425 sandi65070
Posted
what is the biologic and what is it good for? Do you like Xyzal better than Allegra?
sandi65070 wendy62425
Posted
There are at least 3 that are approved for CU. Omalizumab, rituximab and IVIG. The allergist I saw said that everyone she has treated responded well to the biologic. I asked about side effects and she said she hadn't had a patient who had any. At least there is some hope on the horizon!
i like Allegra, it's a good med. Xyzal is supposed to work immediately, it's 24 hrs and no tired feeling. It's tiny and makes me feel like I'm taking less medicine.
arlinda24661 sandi65070
Posted
cotty rene87378
Posted
Yes H1 and H2 really do make an impact (H1 being antihistamine & H2 being an antacid - I use ranitidine) .... it doesn’t cure it, but it stops the outbreak at that time. You may find you can react to other stimuli in your lifetime. But this DEFINITELY keeps you sane and the rest of the population safe whilst the toxin buildup clears. 👍
arlinda24661 cotty
Posted
sandi65070 arlinda24661
Posted
Arlinda,
Oh my goodness, what is that? Why is it different from regular hives? I've thought for awhile that allergies themselves have a lot of characteristics of autoimmune illness, but dr. says no. It's an over active immune system not one that's attacking your body - he says it just feels like your body is trying to kill you - it really is being over protective. Not sure if I buy it, if so its a very fine line.
What surprised me is the amount of antihistamines you can use. 4x the dosage on the bottle plus 2 antacids per day. Seems like a lot.
i really hate hives on my feet! I get them on my hands and feet first, then it spreads. I get them on the palms of my hands too, which isn't supposed to happen.
Has anyone out there tried a biologic?
arlinda24661 sandi65070
Posted
The way the allergist explained autoimmune urticaria to me was that my body thinks that my skin is a foreign object so it attacks my skin. I agree that it’s amazing how much antihistamine you can take. I’m taking two Zyrtec at night and two Allegra in the morning and of course a Pepcid in the morning and at night. I had a pretty good day yesterday but the hives went crazy last night so I ended up taking two Benadryl at 3am. Oh, and I’m taking two cyclosporine twice a day. I may have to bump it up to three twice a day until I can get it back under control. I’m surprised that the antihistamines seem to be helping now because when I started taking them prior to starting cyclosporine it didn’t touch the hives. I’m praying that I can get them under control and take a low dose of cyclosporine because of the risk to kidneys and the fact that I won’t have insurance soon because I quit my job last week. Please pray, cross your fingers and/or have good thoughts for me. Thanks!
wendy62425 arlinda24661
Posted
how many mg of the Cycl
wendy62425 arlinda24661
Posted
ill try again. How many Mg of Cyclosporine are you taking? I was on it for almost a year along with Prednisone both slow going up and once completely hive free going extremely slow down off both. I am only on 1mg Prednisone and 1 Allegra a day to keep hives away.
sandi65070 arlinda24661
Posted
Arlinda,,
I have never heard of Cyclosporine for hives but if your doc thinks it's autoimmune, it makes sense. Does it work well? I think I will bring it up on my next visit and see what kind of response I get.
While I'm on prednisone, the hives go away. As soon as I'm off, they're back again. I have cold induced hives but air conditioning will set it off or sometimes my system perceives that it's cold when it really isn't. On some occasions the hives on my legs turn into bruises. Everything I've read makes me think no one really has a handle on the cause or the cure. 🙁
i will absolutely pray for you. Take care!
arlinda24661 wendy62425
Posted
I’m prescribed 6-25 mg pills 2x per day. I was on that for almost two years but started tapering myself, as my allergist recommended, and the first time I tried it I got down to three and then the hives came back in full force so I went back up to six. This time I did well until I got to one but the hives are getting really bad now so I ended up taking three tonight. Unfortunately I may need to go all the way back to six until I get them under control because it’s hard for me to sleep at night because of the itching. 😝😝😝
arlinda24661 wendy62425
Posted
arlinda24661 sandi65070
Posted
Thank you so much Sandi, I need all the prayers that I can get! Oh, and my legs and arms usually have bruises on them after that hives in that spot go down. At this rate by the end of the week I’ll be polka dot!😂🤣🤣
wendy62425 arlinda24661
Posted
Good Morning Arlinda
I have been off Cyclosporine for over a year now. I was up to 150mg a day and still broke out in hives so my doctor added the Prednisone and when I had no more hives she kept me on both for a couple months then slowly went down on the Cyclosporine....took months. Then as I was still hive free she had me go down slowly 1 mg at a time for a couple of weeks then if still hive free I would go down another 1mg for a couple weeks and so on. As mentioned I'm down to 1 mg Prednisone in the morning and 1 Allegra at night. If I start to break out then I add another Allegra.. we are tryin to minimizing the Prednisone. I was down to 1 mg every other day and was so excited that the Urticaria was gone but I had a stressful time and unfortunately started to breakout again so I had to add more Prednisone to 3mg a day for a week then slowly went down to the 1mg a day with Allegra. Every now and then I'll get some hives but mostly I am okay. I did wake up last night with a few hives on my back. I added another Allegra this morning to my 1 Prednisone and I am okay again. I just pray that we will all be able to go into remission and not have to take any more meds. I have had this 3 times in my life and all lasted 2 years then went away on its own. In my earlier years I was able to get them under control with Claritin. I am now 66 and it has taken much more meds to become hive free.....ugh! However it is a blessing to be okay with such a low dose of Prednisone.....it could be worse. I have gone through hundreds of 1mg Prednisone. I think my doctor is great and understand why she has me go down slowly so my body will slowly feel the change. Every time I tried to go off Prednisone with different doctor I would breakout all over again as she did not do such a gradual down in dosage as my doctor now does. I hope this helps.
sandi65070 arlinda24661
Posted
To Arlinda and Wendy
Since the cyclosporine is an immune drug, did you find yourselves getting more than usual garden variety illnesses? Colds, flu, viruses?
i had cold induced hives when I was a child but it went away and just returned 5 yrs ago. My granddaughter has also experienced them especially while swimming so I'm assuming there is some kind of genetic thing going on.
I'll bet there is not much research going on out there on hives.
wendy62425 sandi65070
Posted
Hi Sandi
actually I did well when I was on the Cyclosporine. No side effects or illnesses which I was grateful.....the same with Prednisone. I think my Chronic Urticaria is either immune or leaky Gut.
arlinda24661 wendy62425
Posted
I went to my allergist today and she suggested that I try to stay at 150 mg of cyclosporine instead of the 300mg that I started out taking. She also gave me prednisone 60 mg for 10 days, isn’t that a lot? She also gave me samples of Zyrtec and xyzol. I haven’t been hive free for anytime without medication. 🙁
arlinda24661 sandi65070
Posted
wendy62425 arlinda24661
Posted
Please read my post from a day ago. So important to go down on the Prednisone as my doctor had me go down otherwise too much change for your body....what works is gradual going down on the Prednisone 1 mg at a time for couple of weeks. This has worked for me.....when I went off like you are on the Prednisone I broke out again. Please reread my long post and ask your doctor about it. Are you in the US?
wendy
sandi65070 wendy62425
Posted
Arlinda,
i agree with Wendy on the prednisone. Sometimes the doc will prescribe a "burst" of prednisone which is 5 to 7 days. Apparently if you are only on it a short time, you don't need to go down gradually. But it is a lower dose, say 20 mg. But 60 mg seems too high to do a short course. Maybe call and ask the doc if you should go down gradually. I just got off pred. and I took 60 for 3 days, then 40 for three days, then 20 for three days, then 10 for 3 days. Your system needs time to start producing its own cortisol, hence the gradual decline. If you go off 60 abruptly, you might have a fierce return of your symptoms.
wendy62425 sandi65070
Posted
Hi Sandi
Please let us know how you do going off the Prednisone the way you have done it. Give it a week or so. We all react differently to meds but going down the way My doctor has me do has worked for me. Yes it takes along time going down 1 mg at a time for one to two weeks but it kept the hives away and gave me back quality of life.
keep us posted 😊
wendy62425 arlinda24661
Posted
Hi arlinda
how many Mg did your doctor start you out at with the Cyclosporine? I started at 25 mg for couple of weeks then 50 mg then 100mg then 150mg....actually I may have gone up to 200mg.......that is when she added the Prednisone as I was still breaking out. I didn't want to go higher than 200mg on the Cyclosporine. The combination Cyclosporine and Prednisone seem to get me to be hive free.