Hi,
I’ve had cholinergic urticaria since childhood but it was never really noticeable; the occasional itch with spicy food, brief hives every summer or so without an itch etc. However, about 4 years ago, my CU went into second gear and the following year, third gear etc.
It was initially controllable with antihistamines, then steroids, but now it’s uncontrollable. As of last year, it only itched when I got hot from exercise, a heated room, sex etc. As of a month ago, it had progressed to itching with laughter, vomiting, anxiety, any form of physical activity, and I began to experience exercise induced shortness of breath, kind of like when I had bad asthma as a kid.
This month though, things have gone into overdrive: I get nausea and vomiting, scalp itching (my head was never affected), itchy after showers, itchy when about to #2 in the bathroom and now dermatographism. That’s right, when ever I scratch, I’d see a nicely hived outline of my scratch.
I immediately went to a doc and started cyclosporine for the past 10 days now. I can now laugh and stay in a hot room but I still cannot exercise for long without symptoms(I tried today, no luck). Basically I know I’ll have to try maybe steroids with the cyclosporine to go into remission as the cyclosporine isn’t enough on its own (I’m on the highest dose).
My question for those seasoned veterans of this disease out there: Have any of you noticed a progression like mine in which you started developing other forms of hives? What drug remedies have you tried that worked?
Note: I have tried elimination diets, humidifiers, saunas, sweating through the pain, showers without soap, hypoallergenic laundry detergent, antihistamines and steroids to no relief.
Sorry for the gory details, but I guess I needed to vent a little. Please feel free to write whatever. Every comment helps.
-Tom
Marcia Hildreth McGrath says
So sorry, Tom. This is somewhat similar to what has happened with my son, though antihistamines have done him pretty much no good the whole time. It appears from what I’ve read (on this website and other places as well) that diet changes have been what have helped the most people. You may want to try an elimination diet. I will be praying for you. I know this is a terrible thing to endure. Hang in there.
Shelley says
Hi Tom,
I’ve been dealing with chronic hives for two years now, it was triggered by an allergic reaction.
I’ve taken cyclosporine and it really does work, the problem is that you can’t safety be on it for long term.
My husband and I recently moved from NH to AZ, he had fibromyalgia and just couldn’t handle the extreme cold of winter and the humidity of the summers in NH. And I came hoping that the change of climate would work, as my hives are not only triggered by heat, but also humidity. Well, so far, the much drier air has worked!!!
Additionally, I’ve begun seeing a new allergist. This new dr had already ran a battery of food allergy and household allergy tests, which shed a lot of light on my problematic hives. Turns out I’m allergic to squash, very allergic. Used to eat it all the time, I’ve eliminated it and I’m better, not cured, but much better.
Have you had any allergy testing done? If not, I encourage you to speak with your Dr. Also, take 2000mg of vitamin C with rosehios daily and 1000 mg of evening primrose daily has really helped me.
Hope this helps.
Shelley
Anonymous says
Hey tom, which foods did you eliminate when you tried an elimination diet?
Tom says
Basically everything and all I ate was rice, vegetables and salmon/lamb for months. No result
Ron G. says
Wow. I am sorry for your condition. I have just really begun trying to do something about my condition. I never had an issue growing up with CU (I was raised in Houston, TX). However, once I arrived in Colorado Springs for college (altitude 7250ft vs Houston’s 33ft), I started developing the symptoms. Whenever my body would heat up (exercise, stress, etc) I would itch, get hives, etc. Since I went to the Air Force Academy, the worst time was during meal formations, standing at attention. All of a sudden, the symptoms would come on. But I couldn’t do anything about it until we got into the building. It was terrible.
I never went to a doctor about it over the five years I was at USAFA and the Prep School. Once I graduated and began active duty (i.e. leaving Colorado), the symptoms went away. After USAFA, I was in Oklahoma, Florida, and North Dakota where I had not problems. Then I had an assignment to Utah (alt approx 4500ft). I was there three years and the symptoms came back during that time. Same symptoms. I did see a naturalpathic doctor but nothing changed. Eventually, before I left Utah, the symptoms went away.
After Utah (left in May 1997), I had assignments in California, Virginia, Ohio, and back to Virginia in 2004 (where I currently live). During that period I had no issues until I took an extend trip to Colorado Springs in October 2014 (5 days). Upon return to Virginia, the symptoms returned. The itching tends to be on my forearms, back of the neck, torso, and back of the legs. The worst symptoms I have however, is when my hands get itching. It can be terrible. Sometimes I wake up at night itching. I just grin and bear it because I don’t want to disturb my wife. I’ve been dealing with the symptoms from October 2014.
I have seen a doctor at the VA and he diagnosed CU and have prescribed one Ranitidine HCL 150MG tablet plus a 25MG tablet of benadryl twice a day. Additionally, he subscribed camphor 0.5/menthol 0.5% lotion to use twice a day. I usually take the pills and lotion in the morning (usually before a workout) and before bed. These seem to help as I can tell the difference after starting my workout about an hour or so after taking the pills and using the lotion.
However, this doesn’t last a full day thus, I’ve decided to try a mixture of antihistamines during the mid portion of the day spread out about 5 hours apart. I will take 75MG of benadryl at mid day and one Zantac in the evening, then the last of the ranitidine before bed. For the most part, I seem to be okay however it is not totally gone. I can deal with it.
It seems I do best in real humid climates where I can keep my body somewhat moist because of the sweating that occurs in humidity. Thus, going home to Houston seems to work out okay because I sweat enough to where I can get through the first wave. Additionally, I try to work out most days and in particular, go to the sauna and grind out the first wave so I can get through the day. That makes it most bearable as well.
I do wonder if there is a connection between the lack of oxygen at high altitudes and the onset of CU. It seems that it occurred after spending time at high altitudes. I like Colorado and wouldn’t mind living there for retirement, but if there is a real link to the high altitudes, then that probably won’t work. If anyone has experienced this link with high altitudes and CU, I’d like to read your story.
Sorry for the extend post. I appreciate this blog and hopefully, I can share something that would help someone else.
Ted says
Hi Tom – very sorry to hear of your issues with CU. Have you considered Xolair?