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Medical Forum / Diseases and Disorders / Lupus / October 2006Chronic Urticaria / Delayed Pressure Urticaria connection?
I have a history of unexplained hives/urticaria. My allergy doctor says these are technically not "hives" because they are not an allergic reaction...rather they are caused by an underlying autoimmune condition. I have had them on and off since my teenage years...never an identifiable cause...and they typically last for several months. I have had regular Chronic Urticaria, but I have also had a more rare type called Delayed Pressure Urticaria (where Hives develop following any kind of pressure on the skin...typically where shoes rub, waist-band, hands after using scissors...etc). The longest bout has lasted 10 months and no drugs (benadryl, steroids, plaquenil, gout drugs....) ever provided any relief. The episodes ended as spontaneously as they began. I have Autoimmune hypothyroidism, and have recently had bloodwork with a postive RF and the SSA antibody present. Additional bloodwork was done to confirm that the SSA was not a false positive. I do indeed have the SSA antibody. I had a lip biopsy, which proved inconclusive for sjogren's as they said there was inflammation present in the cells but not enough to warrant a sjogren's diagnosis. I do not have dry eyes or mouth, so I really do not believe I have sjogrens. I do however have incredible fatigue. That is my biggest symptom. It's crazy to the point where I don't usually feel like getting out of bed. I want to sleep all the time. Or I could be up for a couple of hours and later feel incredibly exhausted. My Rheumy says because I have no rash or rashes that she doesn't want to diagnose SLE even though that's the most likely choice. (I was under the impression that many SLE sufferers have no rash). She sent me to a sleep clinic to be sure i have no sleep disorders. I did a full night and day study where no sleep disorders were found. So, I thought about all the weird health issues I have found and I wondered could there be a connection between my Chronic Urticaria, Delayed pressure Urticaria, and this fatigue. I read and actually found that both Thyroid and Lupus issues can be related. The thyroid is under control...so now I am back to thinking about Lupus. I know I've said a lot. I'm curious if any other people with Lupus have had Chronic Urticaria or Delayed Pressure Urticaria. Please let me know. My Allergy doctor said that my hives were some of the most severe he's ever seen. Needless to say I have been somewhat miserable over the years, but I manage to keep my spirits up. Any discussion or feedback is welcome and appreciated. Thanks! <snip> "ChelleSmiles" wrote in message >I have a history of unexplained hives/urticaria. My allergy > doctor says these are technically not "hives" because they are >not an allergic reaction... [quoted text clipped - 13 lines] > Needless to say I have been somewhat miserable over the years, >but I manage to keep my spirits up. > Any discussion or feedback is welcome and appreciated. </snip> You sound like so many lupus patients, pre diagnosis! Yes, we all go through many iffy dx's before getting the real deal so that we can be treated appropriately! and once treated? well, the relief is phenomenal for most of us -- although I wouldn't wish this illness on anyone with all of it's twists and turns and absolutely nothing is sacred systemically speaking! Frustrating? for sure! I too have had hives as you have described, once as a teen and once a month ago out of the blue! and also labelled urticaria although it is vascular urticaria.... and they were very annoying! although for me the benadryl topical ointment and the tablets at night worked well for the constant and painful itch they produced! Your symptoms do sound as if you have autoimmune issues and probably will be dx'd, in the near future provided you continue to push your rheumy into the tests necessary to get a dx of one of the many sister AI diseases. Hashimotos (AI thyroid illness) and lupus can travel together as can lupus and sjogens, lupus and raynauds and lupus can also mimic the symptoms of all the other 'sister illnesses' out there, confusing the heck out of not only you but your specialists as well so you need to have a wellspring of patience for all the testing and time involved in getting a dx! It took all my doctors along with a trip to the mayo clinic at one point as a teen to get my dx straightened out at age almost 30 ~~ and I had lived with it since age 'about 12' according to my docs, medical histories. labs and symptoms/flares (including severe nephritis for 3 years) all told! (but that was 25 years ago! we have come a long way since then.... but still... time it does take!) So you are NOT alone ..... keep on pushing with your docs and remain an active self advocate as that imho, is most necessary in order to get an accurate dx, being lupus or not.... .... it is a difficult disease to diagnose in part because of it's multisystemic issues and also whether your labs show up as negative or positive at different times you have them done (they can change in results just like your symptoms).... So, it is just that much more difficult without an active flareup at the time of a doctor appt. in the office or a trip to the ER with a flare, both of which help to make the dx easier. Wishing you well and keep those spirits up as you will need that strength to keep on with it all! my hugs to you, from Shelagh http://clik.to/lupus (don't forget to sign our guest map!) > <snip> > "ChelleSmiles" wrote in message [quoted text clipped - 34 lines] > from Shelagh > http://clik.to/lupus (don't forget to sign our guest map!) Thanks for your insight. (I signed the guest map at the site you linked, too!) I will be 30 in 2 weeks, and I've been a living mystery of unexplained symptoms for what seems like an eternity...mostly beginning in my teens with the weird hives. I have gone to multiple doctors...been sent on wild goose chases, and quite frankly feel like a human guinea pig. (no offense to the furry little creatures). If I could get a dx and subsequent treatment for WHATEVER it is that I have, it would be such a relief. I almost (*almost*) wish I would have another urticaria flare (as miserable as they are) just so I could be tested during a flare up...since every time I had the hives before no one was even talking rheumatoid factors, lupus, sjogren's, etc. At the same time I hope I never have another outbreak of the dreaded miserable hives since there has never been a remedy. Like you said, it's frustrating. I do have the hashimotos type of thyroid issues, so I know I'm already working in that arena. I just feel like my doctors are so blasee about it. Anyway, I'm digging up old medical records. I even called an old allergy doctor from about 10 yrs ago when I went to him with terrible hives...I'm paying to have them get my records out of storage and send them to me. At the very least to have documented accounts will be helpful. In the meantime, getting feedback from you and others here is much appreciated. *clicks heels 3 times and wishes for a diagnosis* I can absolutely relate - and actually this is the first message that I've seen that confirmed that I wasn't experiencing something totally crazy. Ok - well, it's crazy anyhow, but at least I know that I'm not alone. For quite a long time I've had issues with delayed pressure urticaria...I was diagnosed with lupus 7-8 years ago (i'm 28 now) and was also sick for most of my teens. Recently I finally got on a regimen that seems to be suppressing the hives (or whatever you want to call them). I take a variety of allergy pills daily - loratadine and singulair, and the one that really makes the difference is the cimetidine. you can get it over the counter as tagament - it's an h2 blocker. essentially I was taking the loratadine and singulair before and still had the urticaria - however, once I added the cimetidine to to the mix, the hives greatly improved! if I skip a few days, it comes back...so for me that's pretty good evidence that it's working. has anyone else had any luck with this or anything else? hang in there! best, j > > <snip> > > "ChelleSmiles" wrote in message [quoted text clipped - 64 lines] > > *clicks heels 3 times and wishes for a diagnosis* J...Wow! I have never ever personally met or heard of anyone one else who has suffered from DPU. I know exactly how frustrating it is. I bought cans of paint at the hardware store and then feared carrying them out because I new the pressure from the thin wire handles would induce additional 'hives.' I never had anything that helped. It spontaneously ended. While I had the DPU, I took tagament with no relief. I think they tried every possible drug they could think of and ultimately just told me it would have to run its course...which ended up being over 6 months. If you're like me, you've dealt with people suggesting you're allergic to your laundry detergent or fabric softener....all sorts of things that eventually get old even though people mean well. nothing topical ever provided relief...they gave me cortisone cream...then I just felt like a greasy, itchy, red mess. haha. Not that I'm happy you have DPU, but it is definitly exciting (in a weird way) to talk to someone else who knows and has experienced DPU--mostly (like you said) just knowing that I'm not alone kinda makes it feel less crazy. I had one suspicion that my thyroid was slightly related because the DPU seemed to calm down after my doctor raised my dosage on my thyroid medicine...could have been coincidence or could have been the answer. It will be the first thing I try if I ever have another DPU outbreak. Hope this helps, and hang in there. :-) > I can absolutely relate - and actually this is the first message that > I've seen that confirmed that I wasn't experiencing something totally [quoted text clipped - 87 lines] > > > > *clicks heels 3 times and wishes for a diagnosis* Shelagh wrote: > <snip> > "ChelleSmiles" wrote in message [quoted text clipped - 19 lines] > You sound like so many lupus patients, pre diagnosis! > Yes, we all go through many iffy dx's before getting the real deal so that we can be treated appropriately! and once treated? well, the relief is phenomenal for most of us -- although I wouldn't wish this illness on anyone with all of it's twists and turns and absolutely nothing is sacred systemically speaking! > Frustrating? for sure! > I too have had hives as you have described, once as a teen and once a month ago out of the blue! and also labelled urticaria although it is vascular urticaria.... and they were very annoying! although for me the benadryl topical ointment and the tablets at night worked well for the constant and painful itch they produced! > Your symptoms do sound as if you have autoimmune issues and probably will be dx'd, in the near future provided you continue to push your rheumy into the tests necessary to get a dx of one of the many sister AI diseases. > Hashimotos (AI thyroid illness) and lupus can travel together > as can lupus and sjogens, lupus and raynauds and lupus can also mimic the symptoms of all the other 'sister illnesses' out there, confusing the heck out of not only you but your specialists as well > so you need to have a wellspring of patience for all the testing and time involved in getting a dx! > It took all my doctors along with a trip to the mayo clinic at one point as a teen to get my dx straightened out at age almost 30 ~~ and I had lived with it since age 'about 12' according to my docs, medical histories. labs and symptoms/flares (including severe nephritis for 3 years) all told! > (but that was 25 years ago! we have come a long way since then.... but still... time it does take!) > So you are NOT alone ..... keep on pushing with your docs and remain an active self advocate as that imho, is most necessary in order to get an accurate dx, being lupus or not.... > .... it is a difficult disease to diagnose in part because of it's multisystemic issues and also whether your labs show up as negative or positive at different times you have them done (they can change in results just like your symptoms).... > So, it is just that much more difficult without an active flareup at the time of a doctor appt. in the office or a trip to the ER with a flare, both of which help to make the dx easier. > Wishing you well and keep those spirits up as you will need that strength to keep on with it all! > my hugs to you, > from Shelagh > http://clik.to/lupus (don't forget to sign our guest map!) Thanks for your insight. (I signed the guest map at the site you linked, too!) I will be 30 in 2 weeks, and I've been a living mystery of unexplained symptoms for what seems like an eternity...mostly beginning in my teens with the weird hives. I have gone to multiple doctors...been sent on wild goose chases, and quite frankly feel like a human guinea pig. (no offense to the furry little creatures). If I could get a dx and subsequent treatment for WHATEVER it is that I have, it would be such a relief. I almost (*almost*) wish I would have another urticaria flare (as miserable as they are) just so I could be tested during a flare up...since every time I had the hives before no one was even talking rheumatoid factors, lupus, sjogren's, etc. At the same time I hope I never have another outbreak of the dreaded miserable hives since there has never been a remedy. Like you said, it's frustrating. I do have the hashimotos type of thyroid issues, so I know I'm already working in that arena. I just feel like my doctors are so blasee about it. Anyway, I'm digging up old medical records. I even called an old allergy doctor from about 10 yrs ago when I went to him with terrible hives...I'm paying to have them get my records out of storage and send them to me. At the very least to have documented accounts will be helpful. In the meantime, getting feedback from you and others here is much appreciated. *clicks heels 3 times and wishes for a diagnosis* ~~~~~~~~~~~~~~~~~~~~~~~~~~ Hello, I have a neighbor that has Lupus and she gets hives. She takes about 7 different medications so I don't know whether the hives are the result of Lupus or a side effect of one of the medications. Perhaps someone else in this newsgroup can answer this question. I once asked my neighbor why she get hives and it's her theory that it's because of the Lupus. Jason ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ http://www.dermnetnz.org/vascular/urticarial-vasculitis.html Hi Jason, the link above will give insight as to what I broke out in a month ago, out of the clear blue! there are other types of 'hives/urticaria' as well and if you just put in a search to google with either of those words you will get a bunch of hits for your own research... Wishes of good luck to your neighbour! btw, in her case it may be the lupus that is at fault and exacerbating the hive outbreaks... read on anyhow! hugs, Shelagh http://clik.to/lupus "Jason Johnson" <jason@nospam.com> wrote in message > Hello, > I have a neighbor that has Lupus and she gets hives. She takes about 7 > different medications so I don't know whether the hives are the result of > Lupus or a side effect of one of the medications. Perhaps someone else in > this newsgroup can answer this question. I once asked my neighbor why she > get hives and it's her theory that it's because of the Lupus. > Jason Hey again Jason..... forgot to add this one on your post: ---> http://www.urticaria.thunderworksinc.com/pages/whatis.htm <quote> "Urticaria can be a manifestation of many conditions and illnesses, rather than one illness. Current research has shown that up to half of all CU is autoimmune, which means your body is making antibodies against itself, resulting in activation of basophils and mast cells. When these cells are activated, they release many different chemicals, including histamine, which results in hives, and in some people other allergy-like symptoms as well." </quote> hugs, Shelagh http://clik.to/lupus "Jason Johnson" <jason@nospam.com> wrote in message > Hello, > I have a neighbor that has Lupus and she gets hives. She takes about 7 > different medications so I don't know whether the hives are the result of [quoted text clipped - 3 lines] > Jason > ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Hey again Jason..... forgot to add this one on your post: ---> http://www.urticaria.thunderworksinc.com/pages/whatis.htm <quote> "Urticaria can be a manifestation of many conditions and illnesses, = rather than one illness. Current research has shown that up to half of = all CU is autoimmune, which means your body is making antibodies against = itself, resulting in activation of basophils and mast cells. When these = cells are activated, they release many different chemicals, including = histamine, which results in hives, and in some people other allergy-like = symptoms as well." </quote> hugs, Shelagh http://clik.to/lupus ~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Shelagh, Thanks. You done a great job answering my question. You are a wonderful person. Jason ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ <snip> "ChelleSmiles" <tokatoda@yahoo.com> wrote in message > Thanks for your insight. (I signed the guest map at the site you > linked, too!) > Anyway, I'm digging up old medical records. I even called an >old allergy doctor from about 10 yrs ago when I went to him >with terrible hives...I'm paying to have them get my records out >of storage and send > them to me. At the very least to have documented accounts will >be helpful. > In the meantime, getting feedback from you and others here is >much appreciated. > *clicks heels 3 times and wishes for a diagnosis* </snip> Here is a good link: http://www.urticaria.thunderworksinc.com/pages/cutests.htm that may help you once you get back to the doc... print it out and ask for these lab tests to see what the heck is happening and why... may be able to read more into your case with the results? worth a try... Also here: http://www.urticaria.thunderworksinc.com/pages/whatis.htm quote: "Urticaria can be a manifestation of many conditions and illnesses, rather than one illness. Current research has shown that up to half of all CU is autoimmune, which means your body is making antibodies against itself, resulting in activation of basophils and mast cells. When these cells are activated, they release many different chemicals, including histamine, which results in hives, and in some people other allergy-like symptoms as well." btw, thanx for signing onto our groups guest map... hugs, Shelagh http://clik.to/lupus Thank you Shelagh (also best wishes to your neighbor, Jason), I have a folder of research I have found over the last couple of days that shows a clinically studied connection between AI diseases and urticarias like the ones I have experienced. I also called up the doctor I went to 10 years ago for my first HUGE outbreak of urticaria, and I'm paying to have them get my file out of storage and send everything they can to me. In addition to that, thankfully I took photos during 3 of the last 4 outbreaks...starting as long as 10 years ago. They are really gross to look at, but thankfully I have them because I think the visual impact will help to show my rheumy how these weren't just your average pesky allergy hives. Not to sound pathetic, but I had forgotten how bad it was until I pulled the photos out last night...I got a little choked up just remembering all I went though and continute to go through. Unfortunately my oldest photos weren't that good...they were from the days when few people owned digital cameras, and I didn't know that the quality was bad until I had the pics back from the photo lab. Anyway, I appreciate all the info. I will be printing and highlighting as much pertinent factual information as possible to present to my rheumy. I have an appointment with her tomorrow, so lets cross our fingers that I can get the important information across...because I feel that she's at the point where she's ready to just dismiss this or say it's just fibroyalgia (even though I have NO pain issues). I'm not giving up on this that easily. Thanks for all your support and help. I will keep you posted with what happens at the rheumy tomorrow morning. Michelle > <snip> > "ChelleSmiles" <tokatoda@yahoo.com> wrote in message > Thanks for your insight. (I signed the guest map at the site you [quoted text clipped - 17 lines] > Shelagh > http://clik.to/lupus I just got back from my rheumatologist. *sigh* She says she is keeping her mind open to the possibility of a lupus diagnosis but at this time she just wants to call it CFS. She said if I were having any pain she'd say I have fibromyalgia, but since I don't have the pain she is labeling me as having Chronic Fatigue Sydrome for now, and she gave me Flexeril, which she says should help relieve the neck tension I have (which she believes is interrupting my sleep)...so she wants me to take the muscle relaxers before bedtime and see if that helps me sleep better. She still is insisting that the fatigue is from poor quality of sleep even though the sleep study showed I had relatively normal sleep with only a mild occurence of breathing related disturbances. Just the way I know my body, I have a hard time buying into this. I made mention of the urticaria, and she says that she does feel it could be related, but that's about all she had to say. I am very frustrated with all this, but I do appreciate everyone who has commented. Hopefully we will continue to hear any type of urticaria-autoimmune connection from people in this Google support group. Thanks again! > Thank you Shelagh (also best wishes to your neighbor, Jason), > [quoted text clipped - 51 lines] > > Shelagh > > http://clik.to/lupus Well just don't give up on all the medical pros out there! We have all had set backs regarding achieving a diagnosis and some of us more than others! Some docs just don't see the 'big picture' immediately and it may take one symptom that you show up with down the road that will shed some light on this for your docs.... a CFS dx is pretty shabby though! Definitely not credible nor worth the paper it is written on imo. <big sigh!!> Keep your spirits up and try keeping a journal/diary of your ongoing health issues on a daily or even weekly basis, is my best idea for now.... it will help with future ailments/symptoms re doctors and can be a positive step with regards to your own mental health while waiting for answers for how you are feeling ... the major downside of a lousy dx is the lousy treatment you get, or don't get because of the label you are stuck with... sometimes no dx is better than a weak one! Good luck to you anyway and keep reading and lurking... you may yet learn of something new that will help your docs to 're-label' you and so too to be able to better treat you at some point in time... hopefully sooner than later! hugs for ((you)), Shelagh http://clik.to/lupus >I just got back from my rheumatologist. > [quoted text clipped - 23 lines] > > Thanks again! Thank you Shelagh. I agree that CFS is a shabby dx...especially given the presence of the SSA antibody. My RF and ANA have fluctuated...sometimes positive RF, sometimes negative. I had begun an electronic file that chronologically charts things as well as I can remember. I don't know how much help a muscle relaxer will be for my fatigue, but at least if it will help with the neck tension I will be happy with that. I am trying to stay positive and doing as much research as possible. I know autoimmune issues are not easy to pinpoint and diagnose, and lucky for me (sarcasm) I'm one of those people who seems to always fall into a *gray* area. I realize I'm not alone in this, and that's where it helps to have a support group. I will be keeping up with reading and posting here on this site. See you around! > Well just don't give up on all the medical pros out there! > We have all had set backs regarding achieving a diagnosis and some of us more than others! [quoted text clipped - 36 lines] > > > > Thanks again! >I just got back from my rheumatologist. > >*sigh* > >She says she is keeping her mind open to the possibility of a lupus >diagnosis but at this time she just wants to call it CFS. So long as you get the correct treatment for your symptoms, it doesn't matter a lot which label they hang round your neck! [] > this Google support >group. There's a great big world outside Google ;)  SignatureAndy Taylor [Chair, N E Lupus Group] See http://www.northeastlupus.org.uk for more! Andy, I do agree about correct treatment being more important than the label. I just keep getting the guinea pig treatment, though. I could list approximately 10 different drugs they have had me try to "lets see if this helps" just from this year alone. Getting my hopes up each time that "this is going to finally make me feel better" is the tough part for me, I guess. So now I just try not to hope for too much and then maybe if it works I will be pleasantly surprised. And you're right on about more than just Google. Without the internet I don't think I could have believed in myself enought to be as good of a self-advocate as I have been. I also try not to spend all my time working on figuring out this mystery, though...keeping a nice balance between reasearching in pursuit of answers and keeping wonderful friends and hobbies in my life. Thanks for the comments. You will likely see me here again. Michelle > >I just got back from my rheumatologist. > > [quoted text clipped - 14 lines] > Andy Taylor [Chair, N E Lupus Group] > See http://www.northeastlupus.org.uk for more! >Andy, > >I do agree about correct treatment being more important than the label. > I just keep getting the guinea pig treatment, though. Ah yes, that's where they hold you up by the tail and see if your ears fall off :) SignatureAndy Taylor [Chair, N E Lupus Group] See http://www.northeastlupus.org.uk for more! Haha...so they've done that to you, too, eh? :-p > >Andy, > > [quoted text clipped - 6 lines] > Andy Taylor [Chair, N E Lupus Group] > See http://www.northeastlupus.org.uk for more! |
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