I've got DPU - hope you figure something out -- I've basically given up. I think a lot of people don't realize how much self control it takes to walk around with hives and stay calm. The swelling, itching and burning can be overwhelming sometimes. If there is too much pressure in any one spot on any given day, I end up breaking out all over my body. It starts localized where the pressure was but then, if it was bad enough, it spreads into my joints and muscles and all over my skin.
Anywho, if you figure anything out let me know. Acupuncture mildly helps me - but my doctor has never been physically rough with me in anyway near the ways you described. He just puts the needles in and then sometimes in the bad spots will hook up an electro-stimulator to some of the needles. He says my Qi is all screwed up - I have no idea what that means but I roll with it. I can't really get massages because I will break out, so the acupuncture is a good alternative way to relax muscles.
I have something very similar to your condition which I have been a suffer since a young age of 12 im now 23. My doctors call it dematographism uticaria, even the slightest pressure of holding someones hand or yawning will cause me to break out in hives around the general area. I have been on singulair and prednisone yet my hives still could not be controlled. I currently take xantac and xyzal to manage my hives, without it my whole body would be consumed by hives.. Good luck on your journey!
Don't have any advice ( I'm dealing with a hive-y foot just now!), but wanted to thank you for posting your trials and hope you find something that works for you. From what I'm gathering, it seems what works for one may not help another, so we can't even rely fully on that! But, hopefully with awareness comes results! *fingers crossed* :)
@ronjoe1 thanks for your input.....i'm hoping to have something helpful in upcoming weeks. Hopefully, you're situation will tone down with no lasting impact. Best wishes friend!! Keep me posted.
Just wanted to thank you for posting. I just starting having outbreaks this year after big cake projects (lotsa standing and kneading). I kept mentioning to the doc's that it seemed pressure triggered & just got dismissed. So, just hearing that this is something that happens to others at least lessens that stress of me just being a crazy person!
my doc prescribed zantac (!) yes, the anti-acid is apparently also known to take care of the symptoms of urticaria, i am on it for the last 3 days and have noticed minor improvements, and have not had to take any anti-histamines that i normally take to help me deal with the hives... so yeah, not sure if you want to give that a try
Thank you for sharing this with the world. I'm from Belgium and it seems like I'm the only one to have DPU in this country. I have it for 26 years and when I went to doctors, even in University Hospitals, they listened to me as if I was an alien or a women who looked for attention. Since a year I am taking pictures and gather them all togheter to get a real docu. I didn't go for years to doctors because I'm tiered to pay all these doctors without any outcome to cure. I try to live with it !!
@ydila Thank you for sharing your experience. I completely understand what you're going through. Due to a change in my employment, my insurance coverage has changed; as a result, I'll be going to a new doctor. Hopefully, I'll have something new to share. Currently, I'm taking 10mg of Prednisone per day which keeps the symptoms calm. Also, I've been on a very strict diet and exercise program...I'm hoping to post a new video next month with an update.
Thanks for all the videos! I have had DPU for about 5 years. I have not been to the doctor because I don't have insurance. I just self diagnosed my self by finding stuff like this online. My foot is swollen today. It hurts really bad to walk. I get little hives on my body for no reason some times. But also if I have any pressure I know it will be hurting later. Sometimes if it is a bad flare up it will hurt into my muscle also and very painful!
beware of singulair, it made me extremely depressed, i'm having a difficult time with hives, idk if its a long term effect of scarlet fever, or water urticaria but i get them religiously every time i shower for over 2 yrs and cant figure it out, sooo frustrating, but i seemed to get them shortly after i got over scarlet fever which makes me think theyre from that :/ good luck!
I've noticed that if I stop any sort of routine pressure-inducing activity for more than 3 days, I get the swelling back. Of course, the first time doing any new activity causes hives and swelling.
I've had this for over a year now and have been put on a diet by my allergist, who thinks I'm intolerant to salicylates, which are mostly found in fresh fruit and veg! I wondered why things would improve if I ate junk food! It hasn't got rid of it completely but it has helped. Obviously everyone's different and may be able to tolerate some 'forbidden' foods. I'm still sensitive to nuts shellfish and salt, which are allowed on the diet.
I have been suffering with this for years. Your story is just like mine. My DPU was severe and became worse . After the past year of trying everything Singulair, hydroxizine, reactine, zantac and cycle after cycle of prednisone, I have found relief in PLAQUENIL. Took about 3mths to work( very slow acting-stick with it), but now I am free of this condition. It is amazing. I can't remember if you tried this, if not I would ask your Dr. Take Care
Normally, I can cope with it with a couple of Zyrtec (cetirizine) a day. I've tried other antihistamines but not with the same results. I've tried homeopathy, and I have had temporarily relief with Nystatine powder, which is actually an antifungal.
Seeing a new doctor in september to try new combinations.
I also want to let you know about this yahoo newsgroup that i'm subscribed to - very useful to learn and share:
@supamarkzyxe I saw your comments on the other vids and feel for you bro. As far as avoiding being hit by objects....try the best that you can. It really depends on your sensitivity to pressure. I can rest my arm on the back of a chair, and have welts a few hours later....or sleep on the same side for the night and wake up with a welted rib cage or shoulder blades. Still fighting this thing...keep the faith bud.
@grizzlemeat You mean it will just go faster to react if keeping hitting on objects? And there is no long term treatment for this. damn. what a curse.
Had to sell my dirt bike yesterday... I was a motocross racer in my younger days and it's been a part my life most of my life. Because of DPU, I can can no longer enjoy a simple trail ride anymore. So I'm pretty bummed.
Anyway, I'll quit feeling sorry for myself for a moment to ask any and all out there with DPU a question. Have any of you looked at the connection between Candida and DPU?
@demodoc72 Wow...that seriously bums me. I haven't tried Candida, however, it really couldn't hurt. Be ready for hard core discipline. Let me know if you discover something.
I found that quercitin and bioflavonoid is nature ingredients that contains anti histamine. But its hard to find here.so I hope this might be helpful.Keep the spirit.and looking forward for your next video.
Thank you Grizzlemeat for ur video.I'm in indonesia having this DPU for almost 2 months now.My doctor gives me telfast HD 180mg fexofenadine(anti histamine)and I use only when necessary because I'm afraid for the side effects.Now,I'm trying to find anti histamine but comes from nature ingredients.
Hi, I understand your condition as I have had DPU i for 10 yrs. I take Loratadine (antihistamine) to keep just hives from a appearing on my body but nothing I have taken for D.P. has worked. Steriods are just a quick fix. They gave me the ultimate drug an anti cancer drug (can't remember the name of it) 6 years ago which didn't work. I have Chronic Urtacria & this has taken over my life. I feel I should be in a bubble. Wearing glasses will bring your face up as does mine. Keep in touch. Eve :)
When I first researched this disease I thought well, I'll only have this for approximately 9 yrs. according to what I read. Several years on now and more research I'm finding out that this may not be true at all. Now, I'm becoming increasingly despondent. Has anyone out there with DPU had it go away or is it a safe assumption that it will always return?
@demodoc72 Unfortunately, I've had this condition for most of the last 25 years. It did subside for a few years, however, a little over a year ago, it came back and has continued up to the present. I'm currently traveling and had to up my dosage of Prednisone to 15 mg per day; that is barely holding back the extreme symptoms. Let me know if you come across anything new. Next week I'm doing a 2nd lever/gull bladder cleanse. I did experience some good benefits from doing this. Take care :)
@demodoc72 I have had D.P.U. for 10 years now, has never gone away & of all the pills I have taken nothing has stopped it not even the ultimate anti cancer drug didn't help. I sympathize with you all. Eve :))
@gamerhack at the moment, I'm on the road and will be for another 2 weeks. I want to put another vid together at the end of June. The new vid will be an update and will I'll be documenting a couple of cleanses that might be helpful. Sorry, for the delay. Things got a little busy lately. Hope you're doing good.
My special thanks go for my GOD that help me, I have had chronic urticaria for 2 years ,but now mine is disappear i hope you will be cured as soon as possible best wishes brother
Thanks for the info. Just got officially diagnosed this week, dr is starting me on some meds. Hopefully I can start doing things without worrying about hurting later. Good luck finding a treatment for it, I hope I can too!
Very useful stuff indeed. I have just started to experience similar (but lighter) symptoms 12 to 15 weeks ago - so no advice or wisdom from me at this point. However, you are helping me a lot.
hope u do beacuse i no what your going threw i am too they look like mosqutio bites and there itchy zrytec gets them away but 24 hrs later there back i am going to a allgerist she says that i should be inproveing saying that she might give me a shot of eppypin idk but hope u get better
I see you're down with the flu. It reminded me of something. When I have the flu I break out with intense, painful hives from head to toe. Do you experience the same thing?
Yeah, while the flu was kicking my butt, so was an intense 4 day outbreak of hives. I finally ended up in the ER for about 5 hours on Saturday (02/13). They gave me a heavy I.V. of Benadryl, Steroid, and something else, Pepcid, I think. Now, I'm on a 2 week course of Prednisone....sigh. The hives and overall DPU sensativity definately increases when i'm sick.
@grizzlemeat , Interesting! I had a very bad stomach flu in february. It somehow triggered that I had no DPU outbreak for 3 weeks afterwards. Gradually they have come back. I had a batch of them yesterday but they have calmed down now. I am still on Zyzal and if the outbreak is particularly bad I add 2 zyrtec as well. I found the horrible muscle cramps i was experiencing were from a blood pressure drug I was taking, Norvasc. Next day the cramps backed off in intensity & frequency.
I'm 45 and have been suffering from delayed pressure urticaria for approx. 5 yrs. Most people I talk to about this either look at me like I'm crazy or think they know what it is and associate it with another disease. DPU can be very painful. Hives, flu-like symptoms and joint pain make this an aggravating disease. For those of you suffering with this I feel your pain, literally. I've noticed you haven't posted anything since Oct. 2009. How are you doing?
@demodoc72 - Yeah, it's a very strange disease, and very few people have ever heard of it. I've been wanting to get another video up, however, the past few months has been very hectic. I've been off all meds for a couple of weeks now...I've had at least a minimal presence of hives on a daily basis, with 1 outbreak almost immediately after the meds ended. I'll try to put a video up after I see my allergist next week. Hang in there...thanks for posting.
Thanks for responding. FYI, I found out quite by accident that Trazodone reduced my hives considerably. I had been taking it for anxiety and sleeplessness. I found out later from a nurse friend of my wife that Trazodone is a histamine blocker. I've noticed that when I run out, the hives attack with a vengeance.
Maybe this information can help you or someone out there.
@demodoc72 Thanks for posing...in a strange way, it's comforting to know that others are dealing with the same thing. I'll try to post an update in the next week or so. Keep the faith my friend :)
Even on Zyzal I still have some swelling but it's not debilitating. I use a combo of Voltarin and Clobetasol cream on any spots as they start to pop up and between the three medication it seems to at least limit the hives to 24-36 hours in length, and they do't rise nearly as much as without the meds.
I've never had success with any of the topicals...the hives just seem to run their course (2 to 3 days for the typical outbreak). I recently ran out of the Prednisone and after about 4 days of hives, my allergist put me back on a 5mg per day dosage. Unfortunately, that wasn't really holding back the hives, so I bumped it up to 10mg per day and it's barely working. On a severe outbreak, I do get the symptoms that you've described. Keep me posted on your progress...best wishes.
The Zyzal has been holding back maybe maybe 75-80% of the flare-ups. But then as like today I've got the hives and a few hours later starts the joint pains usually in the wrists, thumbs and shoulders and the muscle cramping, neck, shoulder, trapezius etc. IThe Voltarin and Clobesterol just make the hives less itchy and painful than the Zyzal alone. But even Zyzal doesn't totally take them away. It just makes it more managable. I wish I could figure out if the initial trigger is an allergy.
My dermatologist is still not sure whether I have DPU or early Erythema Multiforme. I think its DPU because the lesions are not characteristic E.M. and come up about 8 hours after I have had pressure in an area. But I also get tired, and pain like a tendinitis like pain that lasts a day or two in various joints. Do you get these symptoms as well?
4 weeks on Zyzal (newest type of Zyrtec) and the frequency and severity of the outbreaks is much less, but ins. doesn't cover much of the cost.
I'm so glad I found your videos and Jim the snow boarder 12 comments.. I just started zyzal tonight. I'll let you know what happens.
Can you tell me your history with this disease? Has it worsened over time? Stronger reaction over time? Have you ever developed blisters that seem to come up st the peak of swelling or just after the bumps start going down? I've been dealing with this for around 6 months and I'm very intrigued to see there are others like me. Thanks.
Yeah, it helps to know that there are others suffering from this ailment. I've never developed blisters, just hives..especially where pressure has been applied to the skin. I'm currently on a 5mg Prednisone course which is barely keeping the outbreaks at bay. Keep me posted on your progress.
In a few days, my Prednisone course will end. When that happens, my fall-back plan will include a varied dose of Zyrtec and Singulair, which according to my doctor, will hopefully keep the major outbreaks at bay. I'll have to look into the Zantac. As for the angiodema, I wasn't diagnosed with that, however, I have had some deep tissue urticaria which caused some throat constriction and required a couple of 911 visits to the emergency room. Thanks for the posting and best wishes.
you should try it. Zantac is an H2 histamine antagonist. zrytec and singulair are H1 histamine antagonist. When I combine them together, i have no break outs at all I have been on this for over 2 years now and it still has great results.
I'll definately give that a try. I think the H1/H2 blocker makes sense. I'm currently at the end of a prednisone course and will look into the zantac / zyrtec combo.
I haven't tried zantac, however, I've tried some other H1 blockers and they didn't seem to do anything. I mentioned Zantac to my doctor yesterday and he said to give a try and let him know the results. Thanks for the input. Best wishes.
I had no success with a detox diet for my Chronic Urticaria and Angioedema. Vitamins can make my hives worse. But the low histamine/salicylates diet has helped enormously. It's not easy but it's better than having the hives every day!
I'm wondering if you've tried the liver/gallbladder flush? And have you ever tried the Paleo-diet for a few weeks? (just cutting dairy and grains from your diet completely could also be a big change)
I understand it is difficult and you're grabbing every straw to cure yourself, but all these medications are probably not addressing the root cause of your DPU... most likely they stop/diminish some symptoms, but worsen other metabolic processes.
My doctor has me on a "taper" down dosage of Prednisone at the moment; that should last about 3 more weeks. After I come off the Prednisone, I'll be doing the liver/gallbladder flush and making a video(s) about it. Your're right about the meds and worsen other metabolic processes...that's been my concern too. After the "flush", I'm hoping to go a few months with no meds and really do a focus on strict diet. I'll be looking at the Paleo-diet...haven't read up on that as of yet. Thx friend.
I've got DPU - hope you figure something out -- I've basically given up. I think a lot of people don't realize how much self control it takes to walk around with hives and stay calm. The swelling, itching and burning can be overwhelming sometimes. If there is too much pressure in any one spot on any given day, I end up breaking out all over my body. It starts localized where the pressure was but then, if it was bad enough, it spreads into my joints and muscles and all over my skin.
bubonicnate 6 months ago
Anywho, if you figure anything out let me know. Acupuncture mildly helps me - but my doctor has never been physically rough with me in anyway near the ways you described. He just puts the needles in and then sometimes in the bad spots will hook up an electro-stimulator to some of the needles. He says my Qi is all screwed up - I have no idea what that means but I roll with it. I can't really get massages because I will break out, so the acupuncture is a good alternative way to relax muscles.
bubonicnate 6 months ago
I have something very similar to your condition which I have been a suffer since a young age of 12 im now 23. My doctors call it dematographism uticaria, even the slightest pressure of holding someones hand or yawning will cause me to break out in hives around the general area. I have been on singulair and prednisone yet my hives still could not be controlled. I currently take xantac and xyzal to manage my hives, without it my whole body would be consumed by hives.. Good luck on your journey!
xRhapsodyBluesx 6 months ago
Don't have any advice ( I'm dealing with a hive-y foot just now!), but wanted to thank you for posting your trials and hope you find something that works for you. From what I'm gathering, it seems what works for one may not help another, so we can't even rely fully on that! But, hopefully with awareness comes results! *fingers crossed* :)
ronjoe1 7 months ago
@ronjoe1 thanks for your input.....i'm hoping to have something helpful in upcoming weeks. Hopefully, you're situation will tone down with no lasting impact. Best wishes friend!! Keep me posted.
grizzlemeat 7 months ago
Just wanted to thank you for posting. I just starting having outbreaks this year after big cake projects (lotsa standing and kneading). I kept mentioning to the doc's that it seemed pressure triggered & just got dismissed. So, just hearing that this is something that happens to others at least lessens that stress of me just being a crazy person!
ronjoe1 7 months ago
my doc prescribed zantac (!) yes, the anti-acid is apparently also known to take care of the symptoms of urticaria, i am on it for the last 3 days and have noticed minor improvements, and have not had to take any anti-histamines that i normally take to help me deal with the hives... so yeah, not sure if you want to give that a try
twodice416 11 months ago
Thank you for sharing this with the world. I'm from Belgium and it seems like I'm the only one to have DPU in this country. I have it for 26 years and when I went to doctors, even in University Hospitals, they listened to me as if I was an alien or a women who looked for attention. Since a year I am taking pictures and gather them all togheter to get a real docu. I didn't go for years to doctors because I'm tiered to pay all these doctors without any outcome to cure. I try to live with it !!
ydila 11 months ago
@ydila Thank you for sharing your experience. I completely understand what you're going through. Due to a change in my employment, my insurance coverage has changed; as a result, I'll be going to a new doctor. Hopefully, I'll have something new to share. Currently, I'm taking 10mg of Prednisone per day which keeps the symptoms calm. Also, I've been on a very strict diet and exercise program...I'm hoping to post a new video next month with an update.
grizzlemeat 11 months ago
Thanks for all the videos! I have had DPU for about 5 years. I have not been to the doctor because I don't have insurance. I just self diagnosed my self by finding stuff like this online. My foot is swollen today. It hurts really bad to walk. I get little hives on my body for no reason some times. But also if I have any pressure I know it will be hurting later. Sometimes if it is a bad flare up it will hurt into my muscle also and very painful!
ncarolina76 1 year ago
beware of singulair, it made me extremely depressed, i'm having a difficult time with hives, idk if its a long term effect of scarlet fever, or water urticaria but i get them religiously every time i shower for over 2 yrs and cant figure it out, sooo frustrating, but i seemed to get them shortly after i got over scarlet fever which makes me think theyre from that :/ good luck!
jessikathleenorth 1 year ago
Ha ha! You kinda freaked me out with the "New Problem". Good one.
aubreyholman 1 year ago
I've noticed that if I stop any sort of routine pressure-inducing activity for more than 3 days, I get the swelling back. Of course, the first time doing any new activity causes hives and swelling.
aubreyholman 1 year ago
Thanks for posting your videos! Am experiencing something similar.
1iNDeFaTiGaBLe1 1 year ago
I've had this for over a year now and have been put on a diet by my allergist, who thinks I'm intolerant to salicylates, which are mostly found in fresh fruit and veg! I wondered why things would improve if I ate junk food! It hasn't got rid of it completely but it has helped. Obviously everyone's different and may be able to tolerate some 'forbidden' foods. I'm still sensitive to nuts shellfish and salt, which are allowed on the diet.
Tilly236 1 year ago
I have been suffering with this for years. Your story is just like mine. My DPU was severe and became worse . After the past year of trying everything Singulair, hydroxizine, reactine, zantac and cycle after cycle of prednisone, I have found relief in PLAQUENIL. Took about 3mths to work( very slow acting-stick with it), but now I am free of this condition. It is amazing. I can't remember if you tried this, if not I would ask your Dr. Take Care
ryanalfred 1 year ago
@ryanalfred Thanks for the info. I'll look into this. I'm still dealing with the same symptoms. Keep in touch and let me know how things go.
grizzlemeat 1 year ago
health.groups.yahoo.com SLASH group SLASH urticaria
which is linked to the ICUS (international chronic urticaria society) website
halfluke 1 year ago
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halfluke 1 year ago
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halfluke 1 year ago
Hi man,
thanks for your videos, I have been suffering from chronic urticaria, just another variation of DPU, for 7 years.
Just a couple of questions:
1 you never mention itch in your videos, itch is my main symptom and it really drives me crazy.
2 why have you stopped updaloading videos? have you lost your motivation to share? I would understand...
I was admitted to the hospital a year ago, maybe a reaction from antibiotics caused that huge outbreak.
halfluke 1 year ago
Normally, I can cope with it with a couple of Zyrtec (cetirizine) a day. I've tried other antihistamines but not with the same results. I've tried homeopathy, and I have had temporarily relief with Nystatine powder, which is actually an antifungal.
Seeing a new doctor in september to try new combinations.
I also want to let you know about this yahoo newsgroup that i'm subscribed to - very useful to learn and share:
halfluke 1 year ago
can i ask btw, what we will happen if not avoid on been hitting by objects that cause pressure urticaria.
supamarkzyxe 1 year ago
@supamarkzyxe I saw your comments on the other vids and feel for you bro. As far as avoiding being hit by objects....try the best that you can. It really depends on your sensitivity to pressure. I can rest my arm on the back of a chair, and have welts a few hours later....or sleep on the same side for the night and wake up with a welted rib cage or shoulder blades. Still fighting this thing...keep the faith bud.
grizzlemeat 1 year ago
@grizzlemeat You mean it will just go faster to react if keeping hitting on objects? And there is no long term treatment for this. damn. what a curse.
supamarkzyxe 1 year ago
Had to sell my dirt bike yesterday... I was a motocross racer in my younger days and it's been a part my life most of my life. Because of DPU, I can can no longer enjoy a simple trail ride anymore. So I'm pretty bummed.
Anyway, I'll quit feeling sorry for myself for a moment to ask any and all out there with DPU a question. Have any of you looked at the connection between Candida and DPU?
demodoc72 1 year ago
@demodoc72 Wow...that seriously bums me. I haven't tried Candida, however, it really couldn't hurt. Be ready for hard core discipline. Let me know if you discover something.
grizzlemeat 1 year ago
@grizzlemeat Thanks, I,ll let you know if I discover anything.
demodoc72 1 year ago
I found that quercitin and bioflavonoid is nature ingredients that contains anti histamine. But its hard to find here.so I hope this might be helpful.Keep the spirit.and looking forward for your next video.
Theloveabell 1 year ago
Thank you Grizzlemeat for ur video.I'm in indonesia having this DPU for almost 2 months now.My doctor gives me telfast HD 180mg fexofenadine(anti histamine)and I use only when necessary because I'm afraid for the side effects.Now,I'm trying to find anti histamine but comes from nature ingredients.
Theloveabell 1 year ago
Hi, I understand your condition as I have had DPU i for 10 yrs. I take Loratadine (antihistamine) to keep just hives from a appearing on my body but nothing I have taken for D.P. has worked. Steriods are just a quick fix. They gave me the ultimate drug an anti cancer drug (can't remember the name of it) 6 years ago which didn't work. I have Chronic Urtacria & this has taken over my life. I feel I should be in a bubble. Wearing glasses will bring your face up as does mine. Keep in touch. Eve :)
SuperEve1981 1 year ago
Are there any experimental drugs you've tried?
When I first researched this disease I thought well, I'll only have this for approximately 9 yrs. according to what I read. Several years on now and more research I'm finding out that this may not be true at all. Now, I'm becoming increasingly despondent. Has anyone out there with DPU had it go away or is it a safe assumption that it will always return?
demodoc72 1 year ago
@demodoc72 Unfortunately, I've had this condition for most of the last 25 years. It did subside for a few years, however, a little over a year ago, it came back and has continued up to the present. I'm currently traveling and had to up my dosage of Prednisone to 15 mg per day; that is barely holding back the extreme symptoms. Let me know if you come across anything new. Next week I'm doing a 2nd lever/gull bladder cleanse. I did experience some good benefits from doing this. Take care :)
grizzlemeat 1 year ago
@demodoc72 I have had D.P.U. for 10 years now, has never gone away & of all the pills I have taken nothing has stopped it not even the ultimate anti cancer drug didn't help. I sympathize with you all. Eve :))
SuperEve1981 1 year ago
any new vids/?
gamerhack 1 year ago
@gamerhack at the moment, I'm on the road and will be for another 2 weeks. I want to put another vid together at the end of June. The new vid will be an update and will I'll be documenting a couple of cleanses that might be helpful. Sorry, for the delay. Things got a little busy lately. Hope you're doing good.
grizzlemeat 1 year ago
My special thanks go for my GOD that help me, I have had chronic urticaria for 2 years ,but now mine is disappear i hope you will be cured as soon as possible best wishes brother
migjeniable 1 year ago
don't worry brother one day you will be cured
migjeniable 1 year ago
have you ever tryed ATARAX it works well
migjeniable 1 year ago
Thanks for the info. Just got officially diagnosed this week, dr is starting me on some meds. Hopefully I can start doing things without worrying about hurting later. Good luck finding a treatment for it, I hope I can too!
riotgurl7785 1 year ago
Jeff,
Very useful stuff indeed. I have just started to experience similar (but lighter) symptoms 12 to 15 weeks ago - so no advice or wisdom from me at this point. However, you are helping me a lot.
Bo
degror 2 years ago
Thanks. I should have an update next week. Be safe and well friend.
grizzlemeat 1 year ago
hope u do beacuse i no what your going threw i am too they look like mosqutio bites and there itchy zrytec gets them away but 24 hrs later there back i am going to a allgerist she says that i should be inproveing saying that she might give me a shot of eppypin idk but hope u get better
gamerhack 2 years ago
so u going to upload a new video on ur progress?
gamerhack 2 years ago
@gamerhack Yeah, I'm hoping to do an update next week. I'm currently down with the flu. Best wishes.
grizzlemeat 2 years ago
@grizzlemeat
I see you're down with the flu. It reminded me of something. When I have the flu I break out with intense, painful hives from head to toe. Do you experience the same thing?
demodoc72 2 years ago
Yeah, while the flu was kicking my butt, so was an intense 4 day outbreak of hives. I finally ended up in the ER for about 5 hours on Saturday (02/13). They gave me a heavy I.V. of Benadryl, Steroid, and something else, Pepcid, I think. Now, I'm on a 2 week course of Prednisone....sigh. The hives and overall DPU sensativity definately increases when i'm sick.
grizzlemeat 2 years ago
@grizzlemeat , Interesting! I had a very bad stomach flu in february. It somehow triggered that I had no DPU outbreak for 3 weeks afterwards. Gradually they have come back. I had a batch of them yesterday but they have calmed down now. I am still on Zyzal and if the outbreak is particularly bad I add 2 zyrtec as well. I found the horrible muscle cramps i was experiencing were from a blood pressure drug I was taking, Norvasc. Next day the cramps backed off in intensity & frequency.
venman2 1 year ago
I'm 45 and have been suffering from delayed pressure urticaria for approx. 5 yrs. Most people I talk to about this either look at me like I'm crazy or think they know what it is and associate it with another disease. DPU can be very painful. Hives, flu-like symptoms and joint pain make this an aggravating disease. For those of you suffering with this I feel your pain, literally. I've noticed you haven't posted anything since Oct. 2009. How are you doing?
demodoc72 2 years ago
@demodoc72 - Yeah, it's a very strange disease, and very few people have ever heard of it. I've been wanting to get another video up, however, the past few months has been very hectic. I've been off all meds for a couple of weeks now...I've had at least a minimal presence of hives on a daily basis, with 1 outbreak almost immediately after the meds ended. I'll try to put a video up after I see my allergist next week. Hang in there...thanks for posting.
grizzlemeat 2 years ago
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demodoc72 2 years ago
Thanks for responding. FYI, I found out quite by accident that Trazodone reduced my hives considerably. I had been taking it for anxiety and sleeplessness. I found out later from a nurse friend of my wife that Trazodone is a histamine blocker. I've noticed that when I run out, the hives attack with a vengeance.
Maybe this information can help you or someone out there.
demodoc72 2 years ago
@demodoc72 Thanks for posing...in a strange way, it's comforting to know that others are dealing with the same thing. I'll try to post an update in the next week or so. Keep the faith my friend :)
grizzlemeat 2 years ago
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demodoc72 2 years ago
Even on Zyzal I still have some swelling but it's not debilitating. I use a combo of Voltarin and Clobetasol cream on any spots as they start to pop up and between the three medication it seems to at least limit the hives to 24-36 hours in length, and they do't rise nearly as much as without the meds.
venman2 2 years ago
I've never had success with any of the topicals...the hives just seem to run their course (2 to 3 days for the typical outbreak). I recently ran out of the Prednisone and after about 4 days of hives, my allergist put me back on a 5mg per day dosage. Unfortunately, that wasn't really holding back the hives, so I bumped it up to 10mg per day and it's barely working. On a severe outbreak, I do get the symptoms that you've described. Keep me posted on your progress...best wishes.
grizzlemeat 2 years ago
The Zyzal has been holding back maybe maybe 75-80% of the flare-ups. But then as like today I've got the hives and a few hours later starts the joint pains usually in the wrists, thumbs and shoulders and the muscle cramping, neck, shoulder, trapezius etc. IThe Voltarin and Clobesterol just make the hives less itchy and painful than the Zyzal alone. But even Zyzal doesn't totally take them away. It just makes it more managable. I wish I could figure out if the initial trigger is an allergy.
venman2 2 years ago
My dermatologist is still not sure whether I have DPU or early Erythema Multiforme. I think its DPU because the lesions are not characteristic E.M. and come up about 8 hours after I have had pressure in an area. But I also get tired, and pain like a tendinitis like pain that lasts a day or two in various joints. Do you get these symptoms as well?
4 weeks on Zyzal (newest type of Zyrtec) and the frequency and severity of the outbreaks is much less, but ins. doesn't cover much of the cost.
venman2 2 years ago
Try Cyclosporine - it works really well. I am treated at teh mayo Clinic for this.
logangoddard 2 years ago
Cyclosporine is a potent immune suppressive drug. it can really screw up your liver as I recall. Nothing else less intense works for you?
venman2 2 years ago
This is the only thing so far that I have found to work.
I am looking into trying the IVIG next as teh cyclosporine side effects are not great. I have had this for 10 years.
logangoddard 2 years ago
Im so happy to have found this. My Hives are the just awful too. I hope you are well. The Fatigue is the worst. Big hug to you.
TheGlossyglitz 2 years ago
I'm so glad I found your videos and Jim the snow boarder 12 comments.. I just started zyzal tonight. I'll let you know what happens.
Can you tell me your history with this disease? Has it worsened over time? Stronger reaction over time? Have you ever developed blisters that seem to come up st the peak of swelling or just after the bumps start going down? I've been dealing with this for around 6 months and I'm very intrigued to see there are others like me. Thanks.
venman2 2 years ago
Yeah, it helps to know that there are others suffering from this ailment. I've never developed blisters, just hives..especially where pressure has been applied to the skin. I'm currently on a 5mg Prednisone course which is barely keeping the outbreaks at bay. Keep me posted on your progress.
grizzlemeat 2 years ago
have you tried zantac in addition to zrytec. i take 20 mgs of zyrtec and 1 150 mg tablet of zantac and i am hive free. do you have angiodema as well
jimthesnowboarder12 2 years ago
In a few days, my Prednisone course will end. When that happens, my fall-back plan will include a varied dose of Zyrtec and Singulair, which according to my doctor, will hopefully keep the major outbreaks at bay. I'll have to look into the Zantac. As for the angiodema, I wasn't diagnosed with that, however, I have had some deep tissue urticaria which caused some throat constriction and required a couple of 911 visits to the emergency room. Thanks for the posting and best wishes.
grizzlemeat 2 years ago
you should try it. Zantac is an H2 histamine antagonist. zrytec and singulair are H1 histamine antagonist. When I combine them together, i have no break outs at all I have been on this for over 2 years now and it still has great results.
jimthesnowboarder12 2 years ago
I'll definately give that a try. I think the H1/H2 blocker makes sense. I'm currently at the end of a prednisone course and will look into the zantac / zyrtec combo.
grizzlemeat 2 years ago
I haven't tried zantac, however, I've tried some other H1 blockers and they didn't seem to do anything. I mentioned Zantac to my doctor yesterday and he said to give a try and let him know the results. Thanks for the input. Best wishes.
grizzlemeat 2 years ago
Zantac is an H2 blocker as I recall. H1 blockers are Zyrtec and Zyzal and the older ones like Clartin and Benedryl
But I've heard of folks having some success using an H1 and H2 blocker in combination at the same time. The dosage is unknown to me though.
venman2 2 years ago
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Ravenesque19 2 years ago
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Ravenesque19 2 years ago
I had no success with a detox diet for my Chronic Urticaria and Angioedema. Vitamins can make my hives worse. But the low histamine/salicylates diet has helped enormously. It's not easy but it's better than having the hives every day!
spiritcat77 2 years ago
Thanx for all the video's on DPU.
I'm wondering if you've tried the liver/gallbladder flush? And have you ever tried the Paleo-diet for a few weeks? (just cutting dairy and grains from your diet completely could also be a big change)
I understand it is difficult and you're grabbing every straw to cure yourself, but all these medications are probably not addressing the root cause of your DPU... most likely they stop/diminish some symptoms, but worsen other metabolic processes.
matrixview 2 years ago
My doctor has me on a "taper" down dosage of Prednisone at the moment; that should last about 3 more weeks. After I come off the Prednisone, I'll be doing the liver/gallbladder flush and making a video(s) about it. Your're right about the meds and worsen other metabolic processes...that's been my concern too. After the "flush", I'm hoping to go a few months with no meds and really do a focus on strict diet. I'll be looking at the Paleo-diet...haven't read up on that as of yet. Thx friend.
grizzlemeat 2 years ago