Can Anabolic Steroids (Danazol) or Corticosteroids (Prednisone) Treat Cholinergic Urticaria?
Post by: threesixmafia on August 01, 2008, 12:17:48 PM
I’ve been reading and researching a lot about this new drug. It seems to have been really beneficial to severe patients. Anybody know any other info about this drug?
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Title: Re: Danazol
Post by: jga on August 01, 2008, 05:04:27 PM
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isn’t it a steroid? it has a lot of side effects, I wouldn’t take it personally
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Title: Re: Danazol
Post by: HivesGuy on August 01, 2008, 05:57:43 PM
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Yeah, it is a steroid. I have also read quite a few cases where danazol has been used in the treatment of cholinergic urticaria. But like JGA pointed out, steroids are pretty serious and I wouldn’t take them either personally. I don’t think it is necessarily new, but just new as in a new way to possibly treat Cholinergic Urticaria in research studies.
Here was one article I have read before, where a person in the military had cholinergic urticaria. Apparently the danazol worked for a while to relieve his symptoms on a high dose, but then quit working & he was eventually discharged.
So personally I wouldn’t try it considering the many potential (and serious) side effects of steroids (hair loss, cancer, acne, etc.). Not to mention in the medical article above, the person actually still had Cholinergic Urticaria after all of that & was discharged from the miliary. It only went away under very high doses, and then returned (probably when his body adjusted to the high dose).
Update, I did try corticosteroids to treat cholinergic urticaria, read that article for more. It didn’t work. I’m sure in a high dose it would knock down the symptoms, but the side effects and risks wouldn’t make it worth it (or healthy), especially long-term.
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Title: Re: Danazol
Post by: threesixmafia on August 08, 2008, 01:38:07 PM
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i don’t know about u guys but. it’s not that it’s just the attacks. like right now in a 80 temp room with a fan on full blast i don’t get an attack. however i get prickles every minute signaling an attack is coming. meaning i have to run to the bathroom every 2 minutes cool down come back, and repeat every 2 minutes. u guys have it to so i don’t need to elaborate.
but it’s not that we simply aren’t able to feel emotions and do physical activity. it’s when when we are forced to it hurts. like hell. or at least when u have it severely.
i rather run this risk of getting what acne? hair loss? possibly cancer down the road, for a health normal life where i don’t get stabbed by needles even by typing this post cause of the emotions involved.
im trying dandazol tomorrow. i will for sure update u guys on how it goes
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Title: Re: Danazol
Post by: billysielu on August 09, 2008, 01:11:30 AM
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i dont get prickles every minute when it’s hot. i normally get it for 10 mins or so, then it doesn’t happen again for an hour or two.
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Title: Re: Danazol
Post by: HivesGuy on August 09, 2008, 08:14:34 AM
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Thanks for your reply threesixmafia,
I know what you mean about the frustrating prickly sensation. Based on what you said on having to go to cool yourself off every few minutes, I would say it sounds like a very intense case of Cholinergic Urticaria at the moment. I usually only have a breakout when getting really hot or exercising (at the moment anyways).
I recently went through a period where I was just super reactive, but it only lasted about a week, and it calmed down a lot. I don’t know if it was the diet I tried or just a regular cycle.
Also, I want to point out that when I first got Cholinergic Urticaria several years ago-It was really reactive all the time. It was very depressing. But then, magically it went away after a few months. And I didn’t have it for like 2-3 years. Then it came back.
So maybe sometimes Cholinergic Urticaria is like the old saying goes, “It is always darkest before the dawn.”
Anyways, thanks for letting us know that you may be trying danazol. Just please talk it over with your doctor about all the possible risks, benefits, etc. But thanks for the update & let us know how everything goes & if you decide to get any treatments.
I sure hope your hives back down soon and you can get some relief!!
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Title: Re: Danazol
Post by: jga on August 10, 2008, 10:29:33 PM
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When I first got Cholinergic Urticaria I was super sensitive to the sensations, I think over time if you exercise regularly the itch/pain is tolerable (either because of desensitization or the Cholinergic Urticaria itself just gets weaker???) so that’s why I haven’t resorted to steroids. Steroids are pretty serious stuff, good luck with them, hopefully they work and you don’t get all the side effects of it.
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Title: Re: Danazol
Post by: threesixmafia on August 12, 2008, 03:19:39 PM
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maybe there’s two danazol’s?
cause according to this site danazol doesn’t seem to be a steroid:
though great news i’m on my 3rd day 2 full days so 7 pills total, 200mg everytime, 600mg per day.
by the first day i was better about 10%
2nd day 25% today, i was out shopping for colelge stuff at 12-3.
exactly 2 weeks ago i did the same thing even went to the same stores at way later 3-6 and i had 37 attacks (mom makes me keep track).
today i only felt the prickling sensation once, meaning it was leading up to an attack. but this was after i had moved all the heavy goods into the car while standing outside in the heat. granted there was a decent breeze, but i know before danazol i woulf of for sure crumpled in pain. so, so far very good success i hope it continues!
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Title: Re: Danazol
Post by: mazefall on August 12, 2008, 04:31:23 PM
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i agree with you threesix mafia, but sometimes cooling your body before the attacks come is not the best choice, during summer was hell for me, i thought i was going to die if these symptoms would not perish, but then i realize that if i force myself through that pain it will soon go away, ( i dont mind the hives, its the prickly needle sensation that drives me insane). i started exercising, then it worked, the first 15 minutes were hell but then again i started to sweat in my forehead, then in my back, then after 20 minutes i started to sweat in my entire body, and im tellin you, it feels great ;D. i haven’t had the needles and pins sensation for a month, only a few itches there but then all of that went away. fall was coming, the temperature was drooping, and then it all came back again >:(, i swear that pissed me off :-[. i realized tha t my pores needed to be open at least everyday so i wont get those attacks later on. its a way of my body of telling me “get Ur lazy butt and exercise, i soon learned never to underestimated the body way of sweating because i had a remarked that i that didnt exersice or sweat during the whole winter season even before that :-, but it wasnt enough, and the sweating method will not cure my hive, but would give me relief in the rest of the day.
the candida yeast is kinda interested, because before i had the Cholinergic Urticaria i had a fungal effection through my back and chest and i was given a lot of antibiotics. i donk know if candida is related to fungal or the antibiotic that was given to me, it would be helpful to know though
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Title: Re: Danazol
Post by: HivesGuy on August 13, 2008, 02:50:12 PM
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Thanks for the update threesixmafia, and welcome to the forum mazefall!
It could be that there are 2 different kinds of danazol, but the one I have always read about online was a form of a steroid. So your doctor could probably tell you for sure if it is steroid based & what type, etc.
The link you provided said it was a synthetic hormone, which is what steroids are. They simulate a hormone that is already produced by the body (usually different forms of testosterone-a male hormone produced by the testicles). That is why sometimes men’s testicles will actually decrease in size (such as bodybuilder’s, etc), because the steroids are providing much more testosterones than the testicles normally produce, so the testes tend to decrease in size. At least, that is what most info says that I have read about concerning steroids & other artificial hormones.
So it looks like Danazol is probably a type of steroid.
Anyways, thanks for updating us with your progress. I hope you find some relief, and you don’t experience any type of side effects while trying this treatment. Let us know how everything goes.
Mazefall,
I agree about the sweating it out helping. The only thing that frustrates me about it, is that I had some great “sweat” days earlier this summer where my Cholinergic Urticaria started to back off & I enjoyed some sweating. But after just about 3 days of staying indoors, the Cholinergic Urticaria was right back to its same annoying self.
So in my experience sweating & working out really helps. But the only thing that frustrates me is that if you don’t keep it up all the time, it comes right back.
That is one reason why I think it is not just sweating alone. Because how many people live a sedentary lifestyle, but then never get Cholinergic Urticaria? Oh well, hopefully time will tell us all what causes this.
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Title: Re: Danazol
Post by: threesixmafia on August 14, 2008, 03:14:25 PM
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after 2 great days it effects have backed off a little. it still helps but not as much as the first two days. well i have tried exercizing, exercizing til i collapse and my heart stays at 180 for a hour. i don’t sweat, no matter what i do.
during june there was a time when i was trying some new homeopathic thing that seemed to help a lot and i ran and it hurt but i was able to sweat, and like u guys said then my Cholinergic Urticaria got infinite times better. now i run i still don’t sweat.
how many times do u guys get that prickly sensation a day? i’ve been keeping track and it numbers from 100-300 times a day for me. with the symptoms (hives) showing up around 40 times if i don’t cool myself right away. it’s not hard to do jsut keep paer and pen by ur pocket and mark it each time u guys feel it. u’d be surrpised by the results
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Title: Re: Danazol
Post by: mazefall on August 14, 2008, 07:50:22 PM
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you are absolutely right hivesguy, as the body starts sweating, you get that feeling that the Cholinergic Urticaria will never come back, and then when the body start cooling itself, the anxiety kicks in :-and you start to feel some few icthes in which gives you less hope of the Cholinergic Urticaria to become cure someday. :-.
i start to realize that consuming lots of calcium or milk would abviously bring the hives back, i am not 100% sure, because my hives were gone after 1 month of no milk( but still have the pins and needles :-). and i also realized that vitamin D plays a big role on this symptom too, because exercising brings relief for only a day, but being exposed in the sun would bring more relief due to the vitamin D we are comsuming and also the toxins were release in which the symptoms wont be back in a couple of days.
fall and winter are coming soon( and i though summer will become a lot worst)
thanks hivesguy for making Cholinergic Urticaria sufferers likes us to gain hope for one day, that Cholinergic Urticaria will become a thing of a past
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Title: Re: Danazol
Post by: HivesGuy on August 15, 2008, 06:42:34 PM
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threesixmafia-
Thanks for the update. I hope your treatment helps you & makes you less reactive. As far as your question about the number of outbreaks- I have never really counted them. But if you are talking about moments where it stings/prickles right before a breakout–I would guess that probably happens about 10-20 times a day for me.
As far as really bad breakouts, It depends on whether or not I am at home. If I am at home, I can usually have entire days where I don’t have a “bad” breakout. However, if I am forced to go out in public in the high heat,etc, then I may have 2-5 pretty bad breakouts a day. I may try to keep track here in a few days to report a total number. I think that was a pretty good idea about keeping a journal about attacks.
In fact, it probably wouldn’t be a bad idea if we all kept a journal of attacks, and foods we ate, etc. Maybe a pattern could be pinpointed?
To Mazefall,
Thank you for your comments about giving Cholinergic Urticaria sufferers hope. I know first-hand that it can be downright difficult living with this. There have been so many times where I have wanted to “give up.” I have even had those moments where I felt my life was worthless & even cried (which I don’t do often) because I was so upset and aggravated from the daily annoyance of trying to do ANYTHING with these hives.
But we have to all hang in there. I try to remind myself that this can go away any time, and I have a lot of hope because others have had this condition clear up, and I myself even had a break for a couple of years from it. So I think in my heart deep down most if not all of us will eventually no longer have to deal with this. One day we can come on this forum & say….YES, the hives are gone! My life is normal again! I think we will all have that day one day.
As far as the vitamin D thing, I think that is a very good point. I basically get hardly NO sun exposure now days. I live in an apartment, and there isn’t really a place to go outside a lot (and when I do go there are neighbors everywhere so it is kind of uncomfortable). Sun produces a LOT of vitamin D, more than what most of us get through our diets.
The only time I have been getting sun exposure in the last couple of months is when my wife & I go the the local park for a couple of hours (usually once every week or two), and when I drive to do errands, etc.
So I think sometimes that sun exposure may have a LOT to do with this. I can’t wait until I get a house in the next year or two (hopefully), because I really want to get at least a good hour of outdoor weather each and every day. I also want to have my own garden & grow most of my food, which will not only save money and be healthy, but also in long term may have an effect on the hives as well… at least I hope.
Thanks again for the great post/updates everyone!
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Title: Hello my fellow Heat Hive sufferers, I’m new and this is my story.
Post by: kl0ud on February 21, 2009, 05:19:06 PM
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I have had problems with heat hives since December 2008. It initially started out with an annoying itch, accompanied w/ some pin pricks. It only occurred when my body temperature increased from physical activity. I assumed that it was because it’s the winter season, and here in the bay area (California), it’s quite cold. My body was having a reaction from the drastic change in temperature. However, it is getting worse now. It occurs when I eat spicy foods (even wasabi! =), hot showers, exercise, being nervous, stressed out, laughing, etc. And during bad break outs, they are accompanied with red dots on my arms, neck forehead, chest, and legs. If it’s a mild out-break, they are just red dots on my skin. If it’s a severe reaction, the bumps are more clustered and are raised above my skin. At this point, it doesn’t itch, but hurts.
I’m lucky that I don’t work in a job setting that requires physical labor. I work in the health care industry, in a well conditioned building. My job isn’t stressful, but I am usually put on the spot: presenting information, sharing patient changes etc. w/ an interdisciplinary team of other health care professionals. I’m the type that always gets nervous, but is able to remain calm and reserved. You can’t tell that I am nervous or what not. I always put a good front. HOWEVER, now I’ll get hives just from it! Luckily, it has never occurred during a presentation – yet. However, once I cracked a joke and we all laughed. Even me! What happened? I felt the hives and the rush/waves of the pin pricks coming, then going, than instantly another wave. Immediately I left the meeting to cool down, then the bumps appeared. After 5 minutes, they usually start to subside and will eventually disappear.
Anyways, the frequency of the hives and the disruption of my lifestyle has really annoyed me. I really had to do something about it. I work w/ MDs, NPs, RNs, LVNs, RTs, PTs ,OTs., etc. I spoke my the MD at my work place and he said he assumes it’s an overproduction of histamine. He recommended Benadryl, as Claritin and Zrytec are very weak. Benadryl does seem to work, for the most part. However, I dislike the drowsy effect it has on me, especially that I have to assess patients and chart etc. So, I made an appointment to see my own PCP. The MD said she also has hives. She scratched her arm, and my arm. She explained I have an over production of histamine as my arm stayed red from the scratch longer than most. Hers was too. Although, she seemed surprised to hear of my triggers. Based on the conversation I had blood drawn for: CMP (Comprehensive Metabolic Panel – consists of glucose, hgb, hct, albumin, electrolytes), thyroid, and environmental allergy test (specific to California). Her goal is to determine the root of the problem. I was excited and very hopeful; however, based on most people’s discussion I kind of feel that it’s hopeless. This was drawn this past Wednesday, so the results are not in. I will definitely keep you all posted. I’ll post what I feel comfortable in the lab section of the forum.
My PCP has prescribed me on a tapering dose of Prednisone – starting at 40 mg. I’m on my fourth day, down to 30 mg. I will admit, it does seem to help out some. I feel that the threshold before I have an outbreak has increased. However, it does not fully get rid of the hives. I’m sorry this post is too long. I just have so much to say. I’ve joined this forum a while ago, but have never really posted. I’ve read and attempted some advice that I have read. But what my point is, today I went to the gym and jogged in shorts/t-shirt and about 1/2 mile the hives came before it become unbearable to continue. I previously ran in sweats/hoodie so that I could sweat more easily, and it was manageable that I was able to do cardio for 2 hours. (I read this in one of the forum posts). So, the Prednisone didn’t not really help to prevent it. My plan is to return to the gym at midnight tonight and try to work out in sweats/hoodie and see if it will work. Prednisone is an anti-inflammatory. With some nasty side effects – weight gain, increased appetite.. not to mention MOON FACE!!! So far, I haven’t experienced any of the following. Let’s hope I don’t by the time my treatment is over. I’m surprised I can’t handle spicy foods, since it has an anti-inflammatory effect. Perhaps, I will consider increasing omega 3 fatty acid consumption. Be careful w/ omega 3 and CHOs; may increase certain serum lipids.
So anyways, this is as far as I am w/ dealing with the hives. I will definitely keep you all posted with any news about my laboratory results; medication trials; etc. Sorry for the scrambled thoughts, typos, etc. I am generally impatient when it comes to sitting in front of a computer for a long period of time.
Just a quick background on me: I’m 24, live in California and am a Registered Dietitian.
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Title: Re: Hello my fellow Heat Hive sufferers, I’m new and this is my story.
Post by: HivesGuy on February 22, 2009, 11:35:35 AM
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Hello kl0ud,
Excellent Post & Welcome to the forum!
I can totally relate with your experiences about the pin pricks, the episode you had at work, etc. I too get reactions to things as simple as spicy foods (in fact, sometimes the vinegar in ketchup or mustard can do it to me).
I really hate when I feel the rush of pin pricks that you described. I always start freaking out a little bit because I know it is going to get worse unless I can quickly cool down.
I too dislike the drowsiness of benadryl & other antihistamines. It seems that the drowsiness is probably the thing that helps the most with my hives, as my body is too tired to get hot lol. Once the drowsiness starts to wear off, the hives usually come back as well. So that is why I personally quit taking them.
I am really glad about your appointment with your PCP, as it sounds like they are a very good doctor since they took the time to listen & run some tests. I am really excited to hear if anything shows up, as I haven’t had the exact tests you have mentioned. I really appreciate (and I am sure everyone else does too), your willingness to let us know if anything major shows up on those tests that could be the cause.
I have read of others with this type of hives trying prednisone with good results. As you mentioned it is usually only a temporary thing. I had a steroid shot of what I assume was probably prednisone, which didn’t really help at all, but it was only one shot. But that is good that you think it is helping a little. Hopefully you and the rest of us will all be hives-free soon.
Anyways, thanks again so much for the AWESOME post & for sharing your story. Please let us know if they find anything in those tests, and good luck with everything!
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Title: Steroid injection every 6 months as treatment?
Post by: Sylvian on May 30, 2011, 07:22:43 AM
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Has anybody on here had this treatment and if so does it work?
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Title: Re: Steroid injection every 6 months as treatment?
Post by: HivesGuy on May 30, 2011, 09:22:49 AM
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By steroids do you mean corticosteroids (as in immune suppressive steroids), or anabolic steroids (muscle building). I have heard of both being used with Cholinergic Urticaria, although neither are ideal or used very often as a standard treatment.
The problem with corticosteroids is that you can have a “rebound effect,” where you immune system can suddenly go haywire and your hives could potentially get worse after the treatment. Also, corticosteroids are very unsafe with lots of side effects when used over the long term and can be really hard on your body and health. For example, I remember a few months ago when I was researching this possibility, and many doctors used to give people 1 shot per year for “hay fever” each summer. It worked, but over time they started getting pretty bad side effects. So now doctors really try their best to avoid this.
If you got only a short treatment every 6 months, I am not sure if that would really be enough to do anything, and the potential bad effects could outweight any positives, especially over time.
As far as anabolic steroids are concerned, I definitely don’t see any benefit of taking those every 6 months.
So in summary, my personal views is that it probably wouldn’t be something you wanted to do for long. I would try to find every other way of managing your hives if possible first. But you can always talk to your doctor about this if you want.
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Title: Re: Steroid injection every 6 months as treatment?
Post by: Sylvian on May 30, 2011, 09:45:58 AM
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The doctor was going to use anabolic every 6 months. As i am rake thin, i wouldnt mind this maybe build me up a bit lol. But if this doesnt stop the attack of hives every time i get hot and just gives side effects there is no point, as all i want is for this to go away so i can play sports again.
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Title: Re: Steroid injection every 6 months as treatment?
Post by: HivesGuy on May 30, 2011, 10:13:43 AM
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Ah, I see :).
Yeah, I have never in my life taken anabolic steroids, so I cannot comment on them at all. But, I do know that from the articles I have read about Danazol being used, it basically has to be taken often (and often in high doses) before it helped the Cholinergic Urticaria at all. In some cases, it didn’t even help. I know of at least 1 person on here who has tried it, and it didn’t help them.
So in my opinion, it probably wouldn’t be worth it at all. But I can totally understand what you’re going through.
By the way, you will probably gain weight as you age. I was super skinny when I was in my teens, but now that I am 28 I can find that I can put on a little beef easier it seems (and fat if I want too).
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Title: Re: Steroid injection every 6 months as treatment?
Post by: Sylvian on May 30, 2011, 10:28:05 AM
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Im 27 and i have never been above 10 stone and im 6,1 LOL.