I have chologernic uticaria and I hate my life

Hi Wendy, I live in England so insurance is different. I've been to a dermatologist who put me on high dose of cetirizine but they don't work, I have another appointment on 28 July with him and was hoping to find some different medication on which I could discuss to him about which may work? Or any other types of solutions. The reason I'm on here is because I read up on someone who said it has ruined there life and I could relate so much to it as it was very similar to me now, unable to work and not being to go out means that I'm stuck inside every day and I also in a relationship and meaning I can't go out or take her anywhere really restricts what we are able to do, I also had to stop driving lessons as it was coming up so regularly it was dangerous to drive. The pain is bad but it's more the severe itching and I think the worst thing about it is no one knows how long it will last everyone can have it for different periods. I just don't understand how some people have been able to tolerate it for so many years, my dermatologist has said it's severe but I cannot stay like this.

Hi Joe

i understand how you are feeling and suffering as I have been there too....my heart goes out to you.  I have had Chronic Urticaria three times in my life.  I am now 65.  Each time I broke out in the hives they lasted 2 years than completely went away.  There were about 10+ years in between when I was hive free.  I was able to keep the hives away then when I was younger with Claritin and Zantac...when the Claritin didn't work I was on Allegra.  This past breakout nothing would work...I was taking high doses of meds even tried an injection called Xolair but did not work for me...went to dermatologists but they could not help me and was recommended to go to Johns Hopkins in Maryland. I went to an immunologist doctor that slowly put me on low dose Cyclosporine Modified either 25 mg or 50mg to start I don't remember, for a couple of weeks before he bumped me up to the next higher dose until I reached 200 mg it took a couple of months .I was also taking Allegra once a day.  Since the hives only improved I was switched to a Rheumatologist doctor she added Prednisone to the Cyclosporine which took away the hives...she kept me on both for a couple of months then ever so slowly started going down on the meds...took a year.  The key is slowly and gradually going off the meds as not to shock your body.  The Cyclosporine is an immune suppressant so you have to be careful.  I have a friend in the U.K. That I met on this blog.  She just had to slowly go on the Cyclosporine up to 100 mg, became hive free her doctor kept her on it for several months then very slowly went down she also took Allegra.  We also both take a supplement  called L-glutamine.  My Urticaria was probably brought on by stress.  Also important do not drink alcohol!!  

Joe she lives in Beverly...East Riding of Yorkshire is that near you?  If so perhaps you could see her specialist that she highly recommends.  Her doctor was able to get her hive free. She did not have to go on Prednisone as I did.  Our bodies are all different.  There is hope Joe......Hang in there..please let me know if she is near you.

best regards

Wendy

Hi Wendy, thanks for replying. Yorkshire isn't too far from me is there anyway I can contact this person? Because I am desperate, this as realistically stopped me going to university and doing most things in my life. I believe mine has come on due to stress to. I see my dermatologist on 28th July and I have been reading this forum for a while until I've seen people who also have the same problem. Did you work while having this disease? Mine is so severe even when I laugh and cough it comes up. I have written down a lot of these medication that I have seen people having but I guess it's just a trial and error with the meds. Is there anyway you can get benefits of this? I want to enjoy life but I am constantly stuck inside and it's hard to explain to people my condition because people automatically assume it's just a slight heat rash so I have virtually no communication with my friends either. I think that because of the disease I have become more stressed and being in summer doesn't help. I need some type of medication which can control the itching and pain, the visual aspect of the rash I can live with but it's impossible nearly not to itch. Sorry about all the questions Wendy just I'm worried and scared to how long this will last.

Hi Joe I will email friend in Beverly to get the name of he specialist doctor that helped her and will get back to you.......Hang in there!

wendy

Joe

i hope you get this.  I just received response from my friend in UK.

Dr. Sabroe, dermatology

Sheffield Hallamshire Hospital, Sheffield

Friend said she does not accept private patients only NHS patients that are referred from patients General Practitioner.

i hope this helps...this doctor is wonderful and knows how to help Urticaria patients.

wendy

Thankyou very much Wendy this is much appreciated!! I just have some questions, were yu working when you had the rash? And if not were you on benifits?

Sorry Joe did not see your reply.  I am a travel agent so I had a part time position and was able to work out of my home which was a big help!  My hives were so severe I could not go out and sleeping was impossible.  I had to keep a bucket of cold water with washcloth next to our bed and would have to try and cool and calm the hives down so I could try to sleep.  The treatment from my doctor was life changing and got my life back  just as my U.K. Friend became hive free as well with her doctor. I am fortunate as my husband has medical insurance.  The two medications Cyclosporine Modified and Prednisone were not very expensive.  You have to be under doctors care when on these meds....very important.  How are you doing?