Medical Forum / Diseases and Disorders / Lupus / February 2005
Hives from exercise ?? this part of my lupus
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Jacquie - 30 Jan 2005 15:58 GMT Hello all, My name is Jacquie from Canada and I have recently been diagnosed with Lupus with SLE. For years I've had kidney problems and fatigue however no doctor could figure out why. I finally have the diagnosis and am happy to say I'm not a hypocondriac I knew something was always seriously wrong!! However the weird thing I have been struggling with for 10 years since this started is the situation of hives! It's awful, everytime I start exercising, running or any serious movement that breaks a slight sweat I get hives all over my legs. It's very painful and itchy as hecK!!! It's mainly in my legs. As a runner this has always been a serious issue to deal with. I have found one thing that helps, lots and lots annd lots and lots of drinking water along with electrolytes. I suppose it helps me avoid water retention and dehydration. I have good days of course and have been able to run 3 marathons but only if I am extra careful and over induldge on water. I'm guessing this has something to do with my kidney damage and lupus as it all started at the same time. Has anyone else had this? It's so frustrating as people think I'm nuts! Any info!? No doctors seemed to ever have heard of this condition! Although even after 10 years no doctors even thought of testing for Lupus so I suppose they're not the ones to ask, No better people to ask then similar people like you.... any info? Thank you so much!! JACquie
pellmellwillynilly@hotmail.com - 30 Jan 2005 16:48 GMT Hi, Jacquie, and welcome!
As far as I know, my kidneys are OK. However, I share your problem with the hives on the legs when I run or even walk fast for a substantial length of time. It doesn't usually happen in a few minutes, but I can pretty much count on it in 45 minutes. It also happens more in warmer temperatures than colder. I haven't found a solution. Perhaps your sports drink idea would help.
I have not had the problem so much with other kinds of sweat-breaking exercise. For example, I don't have the problem with Nia, yoga, weight-lifting, or belly-dancing, all of which make me sweat.
Pell
> Hello all, My name is Jacquie from Canada and I have recently been > diagnosed with Lupus with SLE. For years I've had kidney problems and [quoted text clipped - 19 lines] > ask then similar people like you.... any info? Thank you so much!! > JACquie Artist - 30 Jan 2005 18:07 GMT Thank you for your welcome and reply, I thought I was alone with this problem. Do you have Lupus?
I have done some more research online and found others with the same problem and they call it cholinergic urticaria, something to do with the blood vessels expanding, pores opening and releasing toxins. like an allergic relaction but these people don't have lupus. So I'm curious if it's a Lupus side effect I am having or maybe I too have Cholinergic Urticaria. It's something few doctors seem to know about and I've had to struggle with it for years.
Yes stick with lots of water and I actually take electrolyte tablets which helps. Also the more you run the better it gets over time but if you stop running or exercising for weeks at a time, when you start back up it increases.
Like you say I don't get it from other exercise either, I can do aerobics and I'm fine, I can ski and dance and no problems. Just walking, hiking or running. Seems very very odd!! I'm curious if more people with Lupus have this condition. Jacquie
pellmellwillyni...@hotmail.com wrote:
> Hi, Jacquie, and welcome! > [quoted text clipped - 35 lines] > > ask then similar people like you.... any info? Thank you so much!! > > JACquie Shelagh - 30 Jan 2005 20:53 GMT I too fit into this category with heat induced 'urticaria' or hive like splotches. For me it is always heat induced/involved and the addition of stress just provokes and adds to the resultant 'rash'. (ie: riding my exercycle/vacuuming/just overdoing generally in a physical sense and any added mental stress worsens it) Mine are for the most part just very hot and red and on my upper torso and even my face but the itching is not so much the problem. It is good to hear that I am not alone with this thing; (hmmm...why is it that misery loves company?) | :^) hugs, Shelagh
> Thank you for your welcome and reply, I thought I was alone with this > problem. Do you have Lupus? [quoted text clipped - 66 lines] >> > ask then similar people like you.... any info? Thank you so much!! >> > JACquie BJ - 30 Jan 2005 19:31 GMT Hi Jacquie, I would like to welcome you. I am Canadian too. There are actually quite a few of us here. I have had a problem with hives for many years. Mine started long before I was ever diagnosed with lupus. I get them from being overheated. It is almost as though I were allergic to my own sweat. I can even get them if the bathwater is too hot. I go through periods when it occurs all of the time, then long intervals without it. I do not have kidney problems. My lupus expresses itself with blood, skin and vascular/circulatory ways. I take an antihistamine called Aerius(sp?) during troublesome periods. It is a non-drowsy, one a day pill. It helps with the itching and seems to give me control over the hives. BJ-Sk. Canada
> Hello all, My name is Jacquie from Canada and I have recently been > diagnosed with Lupus with SLE. For years I've had kidney problems and [quoted text clipped - 19 lines] > ask then similar people like you.... any info? Thank you so much!! > JACquie J - 30 Jan 2005 20:34 GMT > Hi Jacquie, > I would like to welcome you. I am Canadian too. There are actually quite a [quoted text clipped - 7 lines] > troublesome periods. It is a non-drowsy, one a day pill. It helps with the > itching and seems to give me control over the hives. <http://www.docguide.com/dg.nsf/PrintPrint/7BEFD8F863E2FE6785256E5F004F9764> over the counter - Canadian In the case of severe renal insufficiency, Aerius® should be used with caution. Aerius® is not to be used by pregnant or nursing women. The efficacy and safety of Aerius® tablets in children under 12 years of age has not been established.
Apparently it's aka Clarinex (in the US) http://www.americanameds.com/prodinfo.php?func=search&proid=183 Manufactured by Schering Canada Inc. This Product is called Aerius in Canada.This medicine is an antihistamine used to treat the symptoms of hay fever and other allergic conditions such as watery eyes, runny nose, itching eyes, and sneezing. It may also be used to treat hives. This medicine may also be used to treat other conditions as determined by your doctor.
J - 30 Jan 2005 21:12 GMT > . My lupus expresses itself with blood, skin and > vascular/circulatory ways. I take an antihistamine called Aerius(sp?) during > troublesome periods. It is a non-drowsy, one a day pill. It helps with the > itching and seems to give me control over the hives. Geez, my post never showed up, so trying again.
Aerius (Canada) is Clarinex (in the US) <http://www.docguide.com/dg.nsf/PrintPrint/ 7BEFD8F863E2FE6785256E5F004F9764> has a renal warning (and other) on it.
<http://www.americanameds.com/prodinfo. php?func=search&proid=183> Aerius Antihistamine (known in the US as Clarinex) No prescription required in Canada. J
J - 30 Jan 2005 21:14 GMT > > . My lupus expresses itself with blood, skin and > > vascular/circulatory ways. I take an antihistamine called Aerius(sp?) during [quoted text clipped - 5 lines] > Aerius (Canada) is Clarinex (in the US) > <http://www.docguide.com/dg.nsf/PrintPrint/7BEFD8F863E2FE6785256E5F004F9764> fixed that url (hopefully)
> has a renal warning (and other) on it. > > <http://www.americanameds.com/prodinfo. php?func=search&proid=183> > Aerius Antihistamine (known in the US as Clarinex) No prescription required in > Canada. > J KCat - 30 Jan 2005 20:07 GMT Hi Jacquie.
Actually - I just posted about this a few weeks back. I'll see if I can dig up the post. What I get doesn't look like typical hives but looks more like mosquito bites. But they are definitely related to getting overheated during exercise or housework. A direct quote from the 1st Edition of The Lupus Book.
"At some point in the course of their disease, 10 percent of patients with [SLE] wil develop hives."
The medical term is "urticaria".
From 1994 Current Medical Diagnosis and TReatment (ed. L. Tierney Jr.) - "For cholinergic urticaria, associated with hot showers or a rise in core body temperature after exercise, there is often a wheal 2-3 mm in diameter with a large surrrounding red flare."
My Dorland's Med. Dictionary says that this type is not *thought* to be immunologic but rather a hypersensitivity of the parasympathetic nervous system. Of course, we know that hypersensitivities are common in lupus patients.
specifically it read: "thought to be a nonimmunologic hypersensitivity reaction in which acetylcholine released from parasympathetic or motor nerve terminals induces release of mediators from mast cells, and evoked by conditions of exertion, stress or increased envrionmentla heat."
In English that means that certain nerves are releasing a neurotransmitter (acetylcholine) which triggers the cells that are responsible for histamine release (mast cells) to react. Histamine is what then triggers the rash.
We know that lupies tend to have more allergies and seemingly our mast cells are more reactive. Hives can be made worse by stress - so if you combine the temp increase with stress... I had not had them for a couple of weeks, then we had to go to a stressful meeting with our builder and last night I decided to vacuum. By the time I was done with only about 15 mins of housework, my legs and arms were itching like mad.
I doubt that the kidney problems themselves have anything to do with it - though I suppose there could be some complex mechanism from the adrenals to the parasympathetic nervous system (I don't have my neuro book in hand) that would somehow mediate acetylcholine release.
There is a "heat urticaria" that seems to be an extreme version of this reaction and not dependent on having an autoimmune disease.
I shouldn't be surprised that your docs hadn't heard of this - but I am. My sister presented with hives and it was what led her to see a doctor and which then led to a diagnosis. Some 17 years ago.
As far as treatment - the only treatment is antihistamine and I would guess that H1 antihistamines are more helpful. But of course, you have to be able to predict when you will get overheated. And if you're running - you probably don't want to be taking an antihistamine because it *is* anticholinergic and will reduce sweating and tend to dry out mucous membranes. And I don't like to take H1s because they make me sleepy (though this would, by default) reduce my activity, wouldn't it <g>).
I've gotten no help from topicals on this. The only way I've found to reduce it, is not something one can do in public. Well, maybe on some beaches in Europe or Australia. But not in the US. :-) That is, if my skin is open to the air when I work out or do house work, i have less trouble. I do pilates as a workout and this will evoke the reaction just as easily as other exercise.
BTB, for me, I started noticing a problem when I would be out in public and standing in line at a store. My feet would suddenly get very hot (I have Raynaud's so this is probably factoring in there) and itch like mad. I know I got strange looks when I slipped out of my shoes and scratched one foot with the other while in line. :)
boy - I bet my big brother is going to have a blast with this post. if he reads it all. :-)
HTH, KCat
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Jacquie - 30 Jan 2005 21:04 GMT Wow that is so helpful! Thank u so much for so much info! I've been searching answers for years and I've gotten more information today then I have from countless doctors over the years. I'm going to see a specialist soon so he'll be interested to hear all of this I'm sure. It is a learning process for everyone really. So much is yet unknown of the disease. I wonder why since it is an allergic reaction why electrolytes and water have been helping me somewhat. ?? curious. It is iffy to take allergy medicine before exercise because it does usually make me drousy, I wonder if any allergy shots would help. I don't like taking drugs but I guess if I have to, what's one more right. I just would have thought that that reaction would be a different kind of Lupus where as I have systemic Lupus. Interesting! THanks again!!! JAcquie
KCat - 31 Jan 2005 01:22 GMT > the disease. I wonder why since it is an allergic reaction why > electrolytes and water have been helping me somewhat. ?? no idea - other than when we get dehydrated it does upset the balance of so many things including pH of the serum which could have an impact on histamine release or neurotransmitter mediation. I once was a lab tech in an immunology research lab and the complexity of the immune system - well, it's just so elegant and so mind boggling at the same time.
> would have thought that that reaction would be a different kind of > Lupus where as I have systemic Lupus. Interesting! THanks again!!! > JAcquie Weeel... Systemic does essentially mean "system wide" so it can do whatever it darn well pleases with whatever organ system it pleases. :-)
Good luck and keep us updated on this! KCat
Shelagh - 31 Jan 2005 18:10 GMT "KCat" <kcattx@sbcglobal.net> wrote in message
>> would have thought that that reaction would be a different kind of >> Lupus where as I have systemic Lupus. Interesting! THanks again!!! [quoted text clipped - 3 lines] > it darn well pleases with whatever organ system it pleases. :-) > KCat And don't forget that our skin is the largest organ system of our bodies!! ~Shelagh
Andy - 31 Jan 2005 11:54 GMT [at interesting length]
>boy - I bet my big brother is going to have a blast with this post. if he >reads it all. :-) It explains why in Houston nobody answers the door when someone knocks on it :)
 Signature Andy Taylor [Chair, N E Lupus Group] See http://www.northeastlupus.org.uk for more!
N&W - 31 Jan 2005 22:48 GMT > [at interesting length] > > [quoted text clipped - 3 lines] > It explains why in Houston nobody answers the door when someone knocks > on it :) I think he read it Kc. Hi you guys! W
KCat - 01 Feb 2005 17:53 GMT > > In article <U7bLd.25662$iC4.3011@newssvr30.news.prodigy.com>, > > It explains why in Houston nobody answers the door when someone knocks
> > on it :) > I think he read it Kc. Hi you guys! W Heh.. Hi W! He's only half-right though. Though that is a big part of it for me. Also why I have blackout curtains. :-)
The other reason - is that no one pays any *#$&*(&#$ attention to the signs posted throughout the neighbourhood that say "No Soliciting."
which could lead big bro down yet another tacky path...
Andy - 01 Feb 2005 18:49 GMT >> > In article <U7bLd.25662$iC4.3011@newssvr30.news.prodigy.com>, > > It >explains why in Houston nobody answers the door when someone knocks [quoted text clipped - 8 lines] > >which could lead big bro down yet another tacky path... Oh, I'm extremely solicitous.
 Signature Andy Taylor [Chair, N E Lupus Group] See http://www.northeastlupus.org.uk for more!
N&W - 31 Jan 2005 20:45 GMT Hey K.C. I do that scratching thing too, while waiting in line at the grocery store(Wal-Mart). My Raynauds is especially bad this winter. I get the hives from all kinds of things or just doing nothing. The thing that really ticks me off is when they decide to break out on my face! Good grief. I am having my worst flare of this disease ever. The pain is excruciating. It is making me nauseated. So I am in misery and have been for two weeks. You guys hang in there! Janers, I want to come south!!! The cold is doing a number on me, Wende
> Hi Jacquie. > [quoted text clipped - 79 lines] > For Lupus Support and Info > http://www.ghg.net/schwerpt/ASLFAQ/ KCat - 01 Feb 2005 17:56 GMT > Hey K.C. I do that scratching thing too, while waiting in line at the > grocery store(Wal-Mart). My Raynauds is especially bad this winter. It's been a strange winter. I don't know about ya'll up there but 80 degree days followed by 40 and rainy does play havoc with the Raynaud's. I know there is some evidence (from Andy's research) that the sudden changes in temp are as bad for the condition as just the cold temps.
> I get the hives from all kinds of things or just doing nothing. The thing > that really ticks me off is when they decide to break out on my face! Good > grief. so far - no such luck there for me. <knocking on wood>
> I am having my worst flare of this disease ever. The pain is excruciating. > It is making me nauseated. So I am in misery and have been for two weeks. > You guys hang in there! Janers, I want to come south!!! The cold is doing a > number on me, Wende
:( I'm sorry you're feeling so bad. Ihad a bad time during Christmas but seem to be out of it for the most part. I've been on my feet a lot so the tendonitis in my left foot has been a real pain. But I can still walk so I won't complain too much. You are in my thoughts. I hope you come out of this flare soon.
hugs, kcat
Andy - 01 Feb 2005 18:50 GMT [
>so far - no such luck there for me. <knocking on wood> Stop it - you'll get a headache....
 Signature Andy Taylor [Chair, N E Lupus Group] See http://www.northeastlupus.org.uk for more!
KCat - 01 Feb 2005 20:58 GMT > [ > >so far - no such luck there for me. <knocking on wood> > > > Stop it - you'll get a headache.... *That's* what's causing that! And here I thought it was all the hot air blowing in from the UK.
Dandelion77 - 22 Feb 2005 02:54 GMT > Hello all, My name is Jacquie from Canada and I have recently been > diagnosed with Lupus with SLE. For years I've had kidney problems and [quoted text clipped - 19 lines] > ask then similar people like you.... any info? Thank you so much!! > JACquie I have chronic solar urticaria which won't go away , so I know about physical hives. BUT perhaps your itching might be an allergy from something you wear - clothing, soap, laundry soap, lotion, sunscreen etc.??? Salty wet sweat makes any contact allergy much worse. (I would get round circles of hives from a metal snap on my shirt when I sweated.) Physical hives you can't do nothing to fix, but a contact allergy is something you can fix.
I had itching and rashes when I sweated, but after a visit to the allergist and months of battling the problem, I am winning. The cause of sweating/itching is laundry soap, bath soap and anything with fragrances or preservatives. Also nickel.
Dandelion
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