hi everybody!
I was diagnose with solar and heat urticaria four years ago. My life since then has change dramatically.
my dr just recommended for me to star with XOLAIR .has anybody taken this drug? Did it help?
Hi I finally got a dermatologist and on the 3rd visit I got a dr that actually listened ,who was interested in my urtucaria and to find a solution , i kept asking for the xolair injections and he is now sending me to a clinic just for urticaria and there i will get the injections. how lucky was i to have a dr that actually cared it has given me a big boost, just waiting for the appointment.....so I hope they work for me as I've read so many good things about it to treat this condition
Hello Daniela
How did your doctor diagnose you with solar and heat urticaria. Was it your GP doctor or specialty doctor dermatologist or Allergist? My doctor was recommending the Xolair shots as it was working very well with her urticaria patient. Keep us informed!
Wendy
Hi Michael
I have had solar urticaria now for 4 years , this condition has limited the quality of my life. I love the beach, gardening and so many other things that I can not longer do. Even driving the car on a sunny day is a problem.
My urticaria is to sun and heat only. So I was diagnosed immediately . I went to an allergiest in Italy that tested me for all inmonology
deceases and I have none.
Finally I went back to my Dr. because I just can accept that there is no cure for this urticaria and he just told me to take Xolair.
I have been reading about this drug and I am concern with the side effects. Is it safe?
I want to find somebody with urticaria that has actually taken the Xolair.
When are you going to try it?
Let me know
Thanks
Hi Wendy
The allergist diagnose me with solar and heat urticaria 4 years ago.
I have taken many anthihistamins but no improvement at all
I just found about Xolair a week ago.
The allergist who told me to take it is in Ecuador. I live in Ecuador now
Do you have solar urticaria ?
im waiting for an appointment, but read other peoples status who have tried xolair on here daniela ,also read up about it on the net
Hi Daniela
How did your doctor diagnose you with solar and heat? Did he do a test on you? I thought my Chronic Urticaria was stress related as I would have an outbreak during stressful times or thereafter. When we went away on Vacation I broke out in hives while sunning buy the pool. And my past outbreak was during the June July months during summer......hummmmm.. Maybe I have the same issues. I look forward to hearing how your doctor tested you with the solar and heat. do you just break out in the sunlight. Do you have hives when indoors?
Have a good day
Wendy
Hi Wendy
Mine was easy to diagnose because I only have it when espouse to the son or heat, hot water, holding a cup of hot coffe.
If I stay in the sun for more than 4 minutes I get all red and itchy.
Mine is very specific
I think I will try the drug Xolair in the next coplu of month
You should try to espose yourself to hot elements and see what happens.
Hope I helped you
Let me know
Bye
Hi Daniela
i don't think mine is caused by heat as I can take hot showers and rinse dishes with hot water with no affect. When I get the hives....unfortunately they stay with me all the time unless I'm on Prednisone which im coming off now and do pray the hives are gone this time!! Sometimes they last up to 2 years then goes away as fast as they came and then didn't get them back over a decade later......go figure! I wish someone would come up with a cure! I live in Virginia, USA. Keep me posted!
Best Regards
Wendy
Thank you
Hi Wendy
He did not test me. It was obvious to the dr and to me. I show him the pictures I had taken of myself.
I can not stay under the sun for more than 3 minutes, can not take hot showers, no sauna, etc .
I always get the same allergic reaction. Therefore, all the Dr I saw gave me the same answer. Heat and sun urticaria
Daniela
Have you tried Quercetin?? A must!!!!!!!!!!!!!!
There are may be different names and types of utricaria and many originate in Mast cell activation disorder.
There is " Mast cell activation disease: a concise practical guide for diagnostic workup and therapeutic options" available on web.
Mine is contact,pressure(seat belt,bra straps,blankets,etc.),body heat (execises,even swimming) utricaria. Taking Quercetin helps with keeping symptoms under control.
I have not tried. This is the first time I heard of it. I will do some research .
thank you for all the info
hi there. I have had solar urticaria for 5 years. I have seen nine doctors and all of them have told me there's nothing they can do for me. The last doctor I saw was an allergist, and he's the only one that has put effort into trying to find me some relief. He suggested xolair... My insurance should approve it in one week. I was wondering if you tried it, and how the results were. In trial the shot did so well, but what I'm reading online is that it's not doing so good for people with our issue. I'm interested to know your results.
Hello Chaseo
I have Chronic Idiopathic Urticaria and have had a breakout in hives three times in my life with decades in between with no hives. Mine are probably due to stress affecting the immune system. This last breakout started last summer and is by far the worst. My Allergist/ Immuologist doctor tried prednisone as it was bad then antihistamines which stopped working. It became so servere I had to go to the ER at hospital to try to get relief as I was so miserable and could not sleep because of it. She recommended the Xolair and was able to get it approved thank goodness. Within two days I was hive free!!., so relieved!! After the second week I started to breakout a little but was able to control them with an Allegra a day. I had my second shot last week but still break out a little but not bad but today had to take two Allegra...as I write this the hives have gone. My doctor said for some it could take a couple shots.....EVERYONE IS DIFFERENT!! And react differently. The hives right now are controllable so far after the Xolair.........and they were not before the shots. I highly recommend for you to try the shots.......it is so worth trying! I am going to continue to take the shots and pray that in time I too will become hive free as others have experienced. I wish you well...please keep us posted on how you are doing. I live in the U.S.
Wendy
Hi Chaseo
please let us know how you are doing after you get your Xolair shots. It's good for us all to share our experiences with the Xolair.
Thank you
Wendy
Hi folks,
Although Xolair clearly works for chronic urticaria, it appears to have the potential for serious side effects (although I haven't taken it myself). Would seem to be best to try the milder remedies first--quercetin (natural herbal ingredient in onions, etc. and available as a supplement); antihistamines (I still take Allegra and Zantac, but hope to discontinue them soon); and have your vitamin D level checked. (Mine was very low and now is remedied). Of course, there are many causes and types of urticaria, so it's best to get it properly diagnosed. I still have a pressure hive or two once in a while, but am pretty much all better. Good luck with this miserable affliction!
Hi Diotima
i unfortunately HAD to go on Xolair injections as my urticaria was so severe nothing worked and I was in and out of hospital and did nothing to relieve the horrible discomfort. As I comments earlier I don't know if the Xolair will kick in and help me but it is better even though I still break out every night......I do want to try the Quercetin supplement...what mg? How many Zantacs do you take with the fexofinadine?
thank you
Wendy
Hi Wendy,
You can take up to 500 mg of Quercetin per day, according to my allergist. Some versions come with vitamin C, and some add bromelain, or other ingredients. I like bromelain too, but that's not supposed to be taken indefinitely.
Re Zantac, I'm on a minimal dose (75 mg once a day). But folks here have recommended it somewhat more liberally. (Please check the other posts.) Interestingly, it's an antihistamine, and differs in function from fexofenadine, so supplements it.
I've had no side effects from the Quercetin/Allegra/Zantac trio. (I take Allegra and Zantac at night and Quercetin in the morning.)
Please have your vitamin D level checked, if you haven't already. Remedying my deficiency there made all the difference to me, and studies have shown that many CIU sufferers have low D blood levels.
All best,
Carol
p.s. While I was still actively suffering, I also took one of the hist tame type pills when I had a glass of wine or other fermented food item, as well as other histamine loaded foods. Now I don't find that necessary, but it was helpful at the time. They're expensive, but worthwhile.
Hello
thank you for your reply..I think it is so important to share with each other. I am currently taking Vitamin D2 50,000IU once a week as s I was low. Did not see any change but still taking them. How long have you had the hives and is this your first time with them? Do you think the Quercetin is what helped you the best? Should I get without the bromelain to start...which works the best? I hope I can take it along with the Xolair shots? The Zantac over the counter comes in 150 mg. I'll try the Allegra and Zantac tonight ;-)
All the the best to you too!
Wendy