Allergic to water, my treatment his working but doc wants to stop :S

I have Aquagenic Urticaria since a year and I couldnt do anything, can even go out in the rain, can't sweet, can't cry, can't take a shower ( I take a real quick one 1 min shower) and sometimes have to take my epipen, if its hot or humid I have to stay in a cool place and can't go to the beach or pool :( Im on a treatment right now and can do all of that and my dermatologist want's to stop it :S I always dream about going to Cuba or some hot place and my doctor crash all of my dreams :((((( I just want to go to sleep and never wake up again from this nightmare :S

[Dr Santos]

Hi,
How are you? What medication are you taking right now? If your doctor wants to stop it, you need to talk to him or her and discuss the reason and if there are alternative management planned for you. Medications are usually indicated in treating the symptoms and not the cure of this condition. It is also important that you identify the exact cause, whether there are chemicals responsible for these attacks also. Hang on and stay positive. Take care and hope to hear from you soon.

[Maya_33]

Hi, right now Im on IVIG, that treatment his working, and she want's to stop it because she has no life since she's giving it to me, because she has to be in the city while the are doing it because if something happens :S that his not a good reason, and with that treatment I can do anything, go in the rain, showers, sweet and everything :) but she wants to strop :S And Im taking Reactine 20 mg qid, Zantac 150 mg bid, Atarax 25 mg qid, and she wants me on UVB but like my other doctor (allergist and immunologist) says my problem his my Immune System so she says its not going to help, and sometimes I take Prednisone and Im better, my dermatologist wants to document this because this condition his so rare that she wants people to know that something his really working for this condition, and it change my life, but she's going to change it again for the worse, mine his very severe I can stop breathing, my saturation goes down low if I go in the shower so I dont want to die :S

[Dr Santos]

Thanks for your reply. Were you able to talk to your attending physician about this? What are the other options presented? I strongly recommend open communication lines and discuss other options present, like if she can not be there during the treatment, other doctors  may be there instead. Support group will greatly help also ease any anxiety. There is a thread here in medhelp with members with the same condition that may be helpful. If possible, you can get in touch with these members and maybe you can get referrals to other doctors : http://www.medhelp.org/posts/Allergy/I-have-Aquagenic-Urticaria-does-any-one-else/show/4358
Hang on and stay positive always. Take care and best regards.

[Maya_33]

Thanks for the reply, I did talk to my family doctor last week and he took very good care of me this week with my transfusion, it was a hard week, with all the headaches, back pain and neck pain and nausea, with good meds even if I dont like to take them I have too it would be too painfull, I have to see another doctor before my next treatment, if not I could not drink or take a shower :( And Im sick and tired of this condition, some people don't understand :(

[Dr Santos]

Hi,
Thanks for the updates. It is good that your family doctor helped you with the transfusion this week. I know how hard to have these symptoms and there are times when you just want to give up because you are simply tired of it all. But be strong and think positive always. Take support with your loved ones and to others who have the same condition.  At this point, you need to take one step at a time. And in time, you will get to meet the doctor who will help you with your treatments and management.Take care always.

[Maya_33]

Thanks again for the reply, your advice helps me alote, I know in my heart I will find a good doctor who will help me and let my dreams come true, I just lost my father just a month ago and its hard and I promise him I will be better and live the life I always wanted to live and follow my dreams, I don't need a doctor who screams at me all the time I go see her, I want somebody who understands and listen, Im a nurse and I do listen to my patient and take care of them if their were my own family, thanks again and keep posting your giving me hope of keeping going in life and never giving up, I want to do it for my father who I love so much...