Cholinergic Urticaria

Help, I beg you! What worked for you?

by

I’m a 25-year-old man that has had it great for 24 years of his life–active, HAPPY. I’m a guy that was envied because of how happy and cheerful I was. That was untill September 2015.

I get the needle prickly sensation everywhere in my body ( no hives ). I live in a very hot country. that is hot almost all year, even winters. I haven’t seen the sun since September due to my fear of the pain I get from these needle pricks. I’m a medical doctor, so frankly, I’m meant to help you, not ask for help. However, I can’t.

I’ve tried everything I can think of. I’m shoving every medicine I’ve read in med school that has to do with allergies down my throat–that’s how desperate I am. ( Please don’t do this, this is medically, ethically, and logically very wrong ). What worked for you? which combination of medication or which combination of food? What kind of treatment?

I wrote “Beg” in the title of the question very consciously, which is what I told my dermatologist the last time I saw him. Unfortunately, he thinks it’s stress related, but I’ll mention it again: the only thing I get stressed about is this condition, nothing else ever stresses me.

I just walked for six minutes, slow paced to the corner store, and got an attack. That was at 9pm. the attack was so painful that I stayed inside the corner store, which is less than 600 meters away from my house. I called a taxi because I was too scared to walk back.

Thanks,

-Call Me Rick

Comments

  1. Allegra, zyrtec, hydroxyzine are antihistamines some people use. I get same thing and when drink beer it never happens. Zinc sun screen works really good.

  3. Sounds like your condition is pretty severe. What works best for some people is forcing an outbreak early in the morning, which usually breaks the thresh hold for the day where they can usually not have to worry about another outbreak. Talk to your doctor to make sure it’s safe for you. I would do this sometimes with a really hot shower before work in the morning. Thankfully about 2 or 3 weeks ago, my CU cleared up for the warm summer months and I am sweating normally again with no outbreaks. I haven’t taken my Allegra for about a week now.

  4. Try 3 very small healthy meals a day. Chew food slow. Cut back on sugar and carbs drink only water. A small snack In between meals like a banana or Apple. Talk to your doctor to see if it is safe for you to try 1 Zantac and 1 Zyrtec morning and before bed. This helps me. When I start over eating a lot of junk my utericaria gets worse. It takes about 3 days to see a difference. Good luck

  5. Rick,

    I am recently suffering as well and have not found relief. 3 months in. I just started taking Claritin in the a.m. but it has not helped. I have spent my entire life working out, physical fitness and nutrition. Now 30 minutes into the gym and I look like a tomato but feel like the burning man, very painful burning. Once it hits my lips and tongue, I have to stop and sit in the a.c, for a minimum of 30 minutes. But I get these outbreaks/reactions throughout the day, its never just one and done.

    Do I need to take Zyrtec instead of Claritin?

    • If Claritin works then continue what helps me is 1 zertec and 1 Zantac in morning and again before i go to bed

  6. It seems like you are in the medical field or at least understand the lingo so I won’t spare any details.

    A little history: I’m just like you. Happy, athletic, loving life till age 24, then my immune system went nuclear. It’s not like I never had warning signs all my life. From a young age, spicy foods made my scalp itch and hot showers made my body itch for a while after. But these symptoms were all bearable.

    Then after 24 things got progressively worse until least winter, i couldn’t laugh, cough, have sex, or sneeze without breaking out. Then I developed dermatographia which hurt when I wore clothes, toweled after a shower etc. Could barely survive my friends wedding. I had tried other remedies but they failed but I knew that like any other disease, it was getting progressively worse and if I didn’t chose the nuclear option/s, the illness would snowball to a point where nothing but a skin transplant would work. The pain was so intense and my quality of life was pretty nonexistent and I figured that if the drugs I chose took 10-20 years off my life, I didn’t care anymore.

    You can try antihistamines but they are usually useless but try them anyway. I t ried the homeopathic stuff, obviously didn’t work. Then I tried autologous blood and plasma injections and they did work slightly. What worked was a combination of immunomodulators and high dose corticosteroids. The first immunomodulator I tried was cyclosporine. It didn’t do much and the side effects were unbearable. Then I switched to methotrexate and quarterly steroid injections (I’m around 240lbs so I required around 200mg kenalog im injections over the course of 3 weeks that lasted for 3 months).

    I’m lucky I never had the fluid retention from the steroids but that’s because I sent back to being active when drinking the recommended amount of free water (167oz) per day and low salt diet. Steroids lower potassium and magnesium, so people have to supplement or they will get lots of charlie horses, spasms and cramps. FINALLY, you must keep glucose low and eat high glycemic index sugars as corticosteroids can cause insulin resistance. You don’t need diabetes on your medical history too.

    You may get attacks still but rarely and they will be so mild!!! Your doctor might not agree with your plan but let him or her know that your quality of life is what truly matters (if that’s the case with you).

    Sorry for the long essay but that’s my experience.

    I wish you well!!!

  8. I started on 10mg Loratidine + 150mg Ranitidine (twice daily) + 50mg Prednisolone (two days)/25mg (three days)/10mg (four days) and for the immune system: 1000 IU Vitamin D3 (4 drops).

    I tried Allegra (Fexofenadine) and it didn’t work for me. Adding the Ranitidine so as to have both H1 & H2 blockers I think did the final trick.

    Read up on possible Vitamin D deficiency (search Hives): vitamindcouncil (dot) org
    And find a similar brand in your country to this: bioceuticals (dot) com (dot) au (search Vitamin D3 Drops Forte for immune/nervous system, also good for bones when taking Prednisolone)

    Hope this of help,

    Mel

  9. To get 24 hour relief, you must force an attack. To do this you need to make your body sweat. I do this personally do bike sprints in my gym. Full intensity for as long as i can. After doing this my body is forced to sweat and i get instant relief. I continue doing this for 30 minutes and to get relief for the whole day as long as my diet isnt terrible. Always talk to a doctor first to make sure this is safe for you. Good luck, Doc.

  10. Also you say “I just walked for six minutes, slow paced” this is the biggest mistake you can make because once you stop walking, your body temperature will go up slightly enough to bring on a full blown attack but not enough to start sweating, and this is what you want to avid at all costs because an attack like this is as bad as it gets and will onerously hurt. However, always talk to a doctor first to make sure this is safe for you.

  11. Seems like it’s everyone’s advice here ” Go hard till you break a sweat ” i’ll try it tomorrow, i know it will hurt, but hey, if that’s the cure. i was recently prescribed gabapentin, so i’ll try that too. Has “Breaking a sweat ” not worked for anyone?

    • And can anyone tell me for sure that sweating will evade the attack? tell me how to exercise, what to do if i get the sensations, for how long, etc.

      • Rick, I have many articles and a video on exercising with cholinergic urticaria. Sweat therapy is a method that works for some people, but it is not safe for everyone, especially those with a risk or history of anaphylactic shock. I advise you to talk with your doctor about the risks and even have an Epi-Pen available if you try it.

    • I have many articles and a video on exercising with cholinergic urticaria. Sweat therapy is a method that works for some people, but it is not safe for everyone, especially those with a risk for anaphylactic shock. I advise you to talk with your doctor about the risks and even have an Epi-Pen available if you try it.

  12. Definitely recommend sweating, preferably in a Sauna, Gyms often have ac and cool you down too quickly or they do for me. I go in the sauna for about 20-30 mins a day, i go on the top shelf and just sit there without any part of my body touching another part where possible, so legs wide apart, hands on knees. In my case the heat overwhelms my hives and I sweat loads after about 5 mins. Once i go out into the sauna lounge and the ac/ cool air hits me my hive flare up, but no itch or pain typically, just the spots.

    However, I did struggle at first, i would get the itch and pain before I’d sweat, and my diet greatly affects it, no milk, no wheat, little sugar. Im not cured but its manageable. Oh and vape weed.

  13. Anti-histamines only helped a bit, but still not able to sweat. Therefore I’m going to try immunnosuppressants like Ciclosporin (@Ben: why aren’t these meds mentioned in your overview on the website, the VS/EU urticaria guidelines are recommending immunnosuppr. as third step). From the literature it is know, that immunnosuppressants can indeed induce remission: http://www.jacionline.org/article/S0091-6749(14)01670-4/abstract

  14. Dear all,

    I’m a fellow cholinergic urticaria sufferer for more than 10 years now, living in the Netherlands (Europe). I’ve been educating myself by searching in databases like pubmed, clinicaltrails, etc. Recently I stumbled uppon an US-based research that is foccused on finding the (genetic) cause of different types of inducable urticaria’s – like cholinergic urticaria – and that is currently recruiting patients from the US. So, if you want to help with finding the genetic/biological cause of cholinergic urticaria, you might want to get in contact with these researchers…

    See: https://clinicaltrials.gov/ct2/show/NCT00887939

    A couple months ago researchers e.g. found the GENE that is responsible for vibratory urtcaria…. So who know’s whats next… 🙂

  15. TO EVERYONE WHO HAS THIS: HAVE YOUR DOCTOR CHECK YOUR —–C1 ESTERASE INHIBITOR——- LVLS. If they will be low, correcting this will cure your condition.

  16. TO EVERYONE WHO HAS THIS: HAVE YOUR DOCTOR CHECK YOUR —–C1 ESTERASE INHIBITOR——- LVLS. If they will be low, correcting this will cure your condition.

  17. This is my first summer with CU (had it about 9 months now), and I’m finding what Jeff (and others) says to be true. If I’m exposed to the heat long enough to sweat, the symptoms subside (80%), and subsequent breakouts are at that reduced level for the rest of the day. So, this summer has actually been easier for me than the past winter, when I could get hot, but not adequately sweat. Though the initial breakout may look very bad, with lots of red bumps covering my hands/arms, the prickly/itchy feelings are not severe for me. I haven’t tried a diet change, and only experimented a little with antihistamines, but they only seemed to provide a slight improvement. So, I typically don’t take them. Good luck. Stay positive and determined, and you will find something that works for you.

  18. I have had this condition for 5 years and must say I think I’ve tried every antihistamine on the market. However the one combination that has worked for me, and that I’ve been using for the past 3 years or so is a mix of 300mg Ranitidine and then 5mg Desloratadine, however depending on the temperature I increase the Desloratadine (1 for mild activities, 2 or 3 for summer and intense activities) and that seems to work extremely well (talk to your doctor before trying any medications). I live in Australia where the summers are 40+ degrees and although I still get the rash or other symptoms, the itching is almost 100% gone. Hope this helps!

  19. I’m share this same condition but it also sets me off into a panic attack. I used to love to play golf but no longer can. just wondering if anyone else suffers BP and Heart Rate rise (anxiety) other than me. Tyhanks
    James