Cholinergic Urticaria has ruined my life

Hello....I have four doctors. They are always coming up with different meds and treatments to try. UVB light therapy is helping. I am also getting two injections of Xolair monthly. This drug was originally prescribed to asthma sufferers and now has a very high success rate in helping skin disorders. I have also started taking Naltrexone along with six other medications Naltrexone is given to people going through drug withdrawal to lesson their itch I had six months of IVG therapy but it was not much help. I have been accepted as a patient at the Mayo Clinic. I will post any new meds or treatments. Remember, out there is person itchy and feeling the same way you are.

I just bought a new car and have only put on 18 miles since march 14 due to the fact I break out everytime I get in it.  It takes a few hours for the hives to show up but they do every single time.  The dealer puts a spray on the outside and inside of the cars so I had them wipe it out but the job they did I think was pretty crappy as they used a baby wipe.  I still broke out afterwards so I decided to wipe it out myself, put on rubber gloves and stayed out of it as much as I could to do this job.  That night in the middle of the night I woke up with my lip swelling up and I called a nurse line and she said to to ER immediately as my tongue would be next.  I did so and they gave me steroids and pepsid since I had already taken benedryl so I could make it to the hospital.  I have to ask you is your car new??  My husband has been researching what goes into the cars now as far as seats and everything is recycled and they use such things as battery casings, recycled yarn which you can't trace!  I found an article on which cars are using PVC in their cars and bromine is showing up!  Do you think it could be your car????

Read if you can Can your car make you sick on EmaxHealth site!!

By the way, the doctor who failed to see the link between Thyroid issues and hives is not very well informed. There are definite links between thyroid issues and hives. For a start, they can both by autoimmune conditions. You should get tested for Thyroid antibodies and also be checked for autoimmune antibodies related to hives. You should go and see an immunologist or dermatologist who specialises in Urticaria. I've heard Dr Sabroe in Sheffield is good and I've seen Dr Marsland in Salford Royal who is very knowledgable and helpful with urticaria.

I was thinking, there might be jobs you could do. I once did some summer work for a company that did forestry/florist work and working in the refrigated warehouse, it was cold all the time, even in the height of summer. There are other jobs where you will work in highly air conditioned or refrigerated conditions all the time. 

I hope things have improved for you since you posted this discussion. Did you manage to find a solution or comprise for the situation?

You need a immunologist, not dermatologist. It is a problem with your immune system. It has to do with mast cells. Some research shows it may also relate to an issue with proteases, causing the release of histamines.

I have a question for you. Prior to this occurrence, were you on a new drug (antibiotics perhaps) or, even better, vaccinated for something? If so, what?

Toxicities can trigger immune responses; sweating would cause it to affect skin. Many toxins are in our fatty tissues and exercise would raise available toxins.

Your thyroid issue may relate to endocrine disruptor in your foods, which would/could relate back to the original issue. Try eating whole foods ( organic veggies and fruits), meats without antibiotics and steroids. No grains or rice ( high arsenic, GMO and chemicals). Lots of beans (not soy. Beans are Chelators due to healthy metals to counter toxic metals. Example, high copper overload disrupts immune function, you need zinc to bring it down). No alcohol or sugar.. Avoid chemicals ( use natural products. Inclusive of shampoo, deodorant,... ).

If this is a protease related disorder, you need to take enzymes (multi enzyme complex. Buy via a nutritionist - see if you can get Nutrizyme by American Nutriceuticals). Also, biggie, find refrigerated probiotics with various species. Gut health affects immune system. Bad bacteria overgrowth means high toxins.

Diseases, and disorders, are issues in biochemistry. Doctors do not do biochemistry, they treat symptoms with more chemical toxins (alien chemicals to our systems). Taking antihistamines solves the problem now, but not the cause ( mast cell hyperactivity and protease). For that matter, high sulfate and sulfite intake can cause similar issues (found in foods, hygiene products... My family has this issue in our genetics).

Try for two months, see if any of this helps. What do you have to loose?

I have had cholinergic urticaria for 12 years, since I was 14. It killed me! I was so trapped and alone. I would cry for hours as a kid. My arms, ankles, back, hands, face,....... Would be so itchy especially in the winter! I now finally found out how to repress the itch.

When I sweat more often and break through the itching I can go for a period of time without getting itchy. It's almost like building up my amine system to be able to handle heat for a bit. I found out if I sweat more often for long periods of time I could go weeks without symptoms. When I lived in Hawaii for 6 months doing construction I literally forgot I had it, because I was always hot and sweaty.

Back in Seattle though I had start using saunas and steam rooms to break through the itch and then go work out for a bit. This would relieve my pain for enough time to not feel controlled.

Today I still have cholinergic urticaria and I look at it as a blessing not a curse. Now I am encouraged to work out and stay fit.

CU12- I'm so interested to hear any updates you have or anything that you find that works for you.

This is the first time in years of searching I found someone that described this the way I try to constantly. My specialist told me he'd never seen a case as severe as mine too and basically has all but given up on trying to explain anything to me or help me try to find some new way to treat this. 

I feel for you completely. I just turned 30 myself and had a completely active lifestyle before this. Now I cannot go anywhere. The fear of swelling is almost as bad as the swelling itself. I can't go out and enjoy my life anymore. What interested me though is how you spoke of how big your swells got. You're the first one I heard describing how bad it can be painwise. I keep hearing about people itching, but mine raise up in a horrifying way too. If your 'bad days' are even a bit like my own then I've felt that deep, depressed feeling. It is like being suicidal. Just wanting the pain to stop and not thinking you can live like this. You can. It just hurts. I'm so sorry to hear you're at this point but I want you to know you aren't alone. I want so badly to go out again and just run like I used to. You aren't alone.

They've recommended Xolair to me recently. I read about side effects/price/injects and got a bit nervous about it. In the mean time they have me on Ranitidine and Montelukast. Before that it was just throwing antihistamines at it and hoping something stuck. 

Have you come to anything after getting all this advice? You have over 177 replies, so I was curious if you've found anything in your discussions that really helped? 

                                              

Hello CU12, i have seen your letter and I hope that I can help you find a solution that will help you live in your skin, I too have chronic Uticaria Angioedema and vascilitis, and have been a hasimoto patient since I was 29, I have been suffering for only 6 weeks, but The first 3 weeks I was going through your feelings, my hives  are better controlled with a medication that is a H1 antihistamine it starts with hydro, it is great stuff, and can be helpful until you go into remission, also I am allegic to all material now so I use only 100% organic cotton sheets and only use cottinique clothing, I bought some stuff from Pact and will keep you updated on how it effects me but the close is  more going out friendly, have stomach issues that seem to come because of the allergy sensitivty, so if your having trouble eating mylanta is working for me, but there is a website that is a low histamine diet that is helping and no gluten and dairy may help too, my stomach is killing me, sometimes to have to go to zero and work foward again, also i have no energy and im not sure when that is going to come back a endocrinologist may help with you to check and see if your thyrod issue is autoimmune, my thyroid levels are controlled with SYnthroid and i still developed chronic uticaria, they run parrelel to eachother but are two different autoimmune disorders, good luck and I hope this helps cause my uticaria is better controlled. 

Emy

I haven't read all the replies so this may not help. Have you tried steroids - prednisolone?

I have just lost the job that l really love (working with children with Autism) because someone thought in their mind that l shouldn't be there due to my condition. They think that l am making it up and have had comments such as *who does she think she is * , and *get out of my office* .

l am.very low at the moment

Gm, I have been dealing with this for a few weeks now. I went to one doctor after taking benadryl and it didn't help. He gave me scripts for some over the counter meds Claratin and Tagamet that didn't help.

So the next day I went to another doctor , he gave me an injection of benadryl and another for a steroid of Dexamethasone and the actually helped. Now I am taking all three every 12 hours.

Don't forget you have to keep your skin cool when a break out comes or it gets worse . I hope this helps.

Hi There.

as you can see from messages on this board, i had this in 1977/8, and nothing until

now, you ask yourself why, what has changed, i lost my job etc in 77,

This time round there is more info on it as we have the internet,

Mine has recently been slowing down after a few months, a bit less violent urticaria, i went to see my Gp this week and he put me on prednislone course 6 a day,5mg, and also to take one 120mg of fexofenadine,, i took the first lot of prednistone in the evening, And took my normal antihistimine loradine, woke in the morning great no rash,, Next day after breakfast took the 6 prednislone and at 6pm i took the 1st fexofenadine,,  LEFT OUT my loradine,, i had a job to sleep  i was hot one minute cold  the next, and woke up with the rash , the rash was different very dotty also some like large solid patches of it with no breaks in it, so took in the morning the 6 prednisolone. and then last night took my usual loradine 10mg, and woke still much the same as the night before except no hot and cold feeling,, so weather there was still some of the fexofenadine in my system i dont know,, taken the last tablets in the course of prednisolone, this morning, so tonight will be just my normal loradine, i only take one a day,

I tried Cetrizine no good,, then the Gp said to take 3 instead of two a day, i took one one in morning, one at tea time and one at bed time,, woke up it was worse than ever,, so stopped taken them.. it sometime seems the more antihistimine you take it is worse not better,, so now i just take one loradine 10mg,, i had a full blood test last monday and waiting for results,,you watch it will say all ok.

I think it is to do with the hormones change as the body changes approx every 7 years, look at one of the ladys on here who after a few weeks into her pregnancy

and a few weeks after all was good,, we are mostly told it will go as it came, but how long will this take,, on the body i can bear with it,,,, but on the face NO that makes you house bound,,  i aske my gp why is ther no cure, why is there not a lot of research done for urticaria, and he said there is, because in 30 odd years ago when i first had it, to me they are still no further curing it, he said there are 1000's of things that can cause it, i to keep fit , dont smoke, very very rare have a drink,  not over weight etc,