Posted , 7 users are following.
Anyone who has had CHOLOGERNIC UTICARIA please reply I'm 19 and I feel like my life is ending before it's started, I'm not one to exaggerate but I can't do anything please help or give advice I'm greatful for anything
0 likes, 13 replies
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omer93457 joe333
Posted
Joe so sorry to hear all the problem your having but I got that over 4 years now and I'm final on Xolair shot 2 shot at a time and just had my other 2 shot in June and will go for 2 more in July but right now the redness seem much better but still have some itch but not as bad as before so I hope it will go away soon. Thank god my plan of health accepted this medication cost $1500.00 a shot. Maybe you should try that if you can but there no guarantee it will work, wish you a lot of luck young man and I'm praying for a cure for everyone it's so depressing and ruins your life. good luck my friend
joe333 omer93457
Posted
I live in England so it's different here. How have you managed 4 years?!?! I'm struggling so much I want to live my life but I can't! I'm so depressed and I do need to try different medication. Are you on benifits or are you working?
Jmoney74 joe333
Posted
Hi Joe
Uticaria sucks! Before you go on, did you check all your blood work and do the scans? I had H Pylori. Antihistamines don't work for your condition.. it just holds the hives in place until they unleash their wrath later. Try to stop taking them and start living healthy. Also do a hormone test. I don't have Chologernic but I have chronic hives for about a year now. Just got on Cyclosporine which is doing it's job but we'll see if it will indeed cure me. If anything, Antihistamines makes things worse. Also, don't take the steroids.
joe333 Jmoney74
Posted
I haven't had either tests yet, what is the difference between chronic and chologernic uticaria? I have so many question! Thankyou for replying and for the advice I'm struggling here
omer93457 joe333
Posted
I'm a retired man and I have my plan from work and had to fight for this medication but I agree with you it's very depressing and I am suffering for years but I feel so sorry for the younger people to have this cause I'm older but still doesn't me I should suffer, just I'm sad for you, hope you can find something, I wish you lot of luck and hope you get cure cause I still have it and it's hard.
joe333 omer93457
Posted
What medication are you on and is it working? How old were you when you first had it? The most annoying things is that there is no substantial cure for this disease, just because it's not life threatening people don't think of it as such a bad disease but it turns your life upside down, I cannot live with this disease there is no point what quality of life is that for me? I need to find a cure or some way or controlling it fast! Thankyou
omer93457 joe333
Posted
Hello Joe, sorry about the way you are with this itch, just like I said I'm on Xolair right not and already had 4 shots but the redness not so bad but the itch I can take a bit but not as bad as before so my next 2 shots are in July and hope will be gone. I agree with you it ruins our life, can't live normally and scare to go out cause of the itch and redness. Well if I get completely cure from this I will let you know if Xolair was worth it cause my plan covers it and cost $1500.00 dollars a shot, thank god I don't have to pay it so expensive here in Canada. I wish you the best my friend and hope something works for you, take care.
ryan59726 joe333
Posted
Hello, Joe, I suffered severely from cholinergic Urticaria and I FOUND my cure. This is what worked for me
1. NEVER USE AN AIR CONDITIONER!!!! for some reason when I used one in my house it brought them back
2. SWEAT AS MUCH AS POSSIBLE!!! I'm really not kidding when I say this. This is when the reaction is the WORST but, what I found is if you sweat CONTINUOUSLY, IT GOES AWAY after about a week.
3. antihistamines only made it WORST!!!!
I noticed that my reactions only came on in the winter mostly so I've experienced with myself severely and came to the conclusion that everything I said was valid based on personal experience. I never had reactions until I started using an air conditioner and eliminated my sweating.
Again, this is based on my personal experience I know how you guys feel. I have to leave gym class, every class in general, COULDN'T work because it was so severe. I've been free from it for 10 months now and I will NEVER use an air conditioner on for a period of time because through a lot of trial and error I found out why I was getting my reactions.
Please let me know if you have any questions. I suffered from this every gym class from 7th-12th grade along with my entire 7th, 8th, and 12-grade experience. Oh yeah. It also prevented me from DRIVING
joe333 ryan59726
Posted
Hi Ryan! I'm sorry to hear your suffering also. Do you work? Or do you have benifits? Air conditioning helps me because when I cool down quickly it seems to stop the hives coming up. I've had this for 8-9months now and still causing me so much grief I'm becoming depressed and stuck inside all day everyday and I hate it so much. Are you on benefits? Everyone I see on this forum seems to be from america and I know the benefit system is different as I live in England. What medication are you on or we're on? I've also had to stop driving, it's putting a lot of pressure on my relationship with my girlfriend and prevents me from doing anything, currently summer now and we are having such a hot summer which is making it worse I'm on high doses of ceritzine but not working I need medication which will hopefully get rid of this fully I want to live my life, thinking about this makes me more depressed and more stressful which definitely won't help the condition. Hope to hear from you Ryan!
SebastianCHN joe333
Posted
michelle07282 joe333
Posted
Hi joe, nice to see someone from England with a similar problem. I have chronic spontaneous urticaria and chronic delayed pressure urticaria. I have had to give up work due to being so ill. I have been for a health assessment with the health and disability centre to which they have said I'm entitled to ESA but England are so behind in this illness. Even my surgery can't help me and now seeing a specialist at guys in London. Visited my doctor today and was told sorry we have never had a patient with this illness and really don't know what to advise between appointments to London. I went from being really healthy, working full time, to covered in hives, regular days of complete swollen face and joints, itching, no sleep, depression and it's also having a huge impact on my relationship. It's nice to see there is other people out there as it's a very isolating illness and no one understands let alone heard of it where I'm from. This weather really affects it, so it's inside keeping cool away from the sunshine for me. Wish there was some sort of support group in England where people like us could go. Just to share their experiences with others alike.
SebastianCHN michelle07282
Posted
Jmoney74 joe333
Posted