Discussions By Condition: I cannot get a diagnosis.

Urticaria, joint pain, fever raised ESR.

Posted In: I cannot get a diagnosis. 14 Replies
  • Posted By: mazhug
  • February 18, 2007
  • 11:53 PM

My Mum has been undiagnosed for more than 15 yrs now. She intermittently gets severe urticaria (raised angry red rash all over body, concentrated on abdomen), associated with fever, joint pain, nausea, loss of appetite and elevated ESR during attacks.
Initially it was brought under control with cyclophosphmide and steroids. The cyclophosphmide was discontinued after a few years and then the episodes were maintained on steroids. With outbreaks, steroids were increased and reduced after but she remained on maintenance doses the lowest 7.5mg.
She has been thoroughly investigated over the years, allergies have been ruled out and no diagnosis has been offered.
She has never been able to come off steroids and she has now reached a point where 10mg daily maintenance dose is not keeping attacks at bay. They are now increasing in frequency and severity and she is again looking at going back on cyclophosphmide. The attacks would also seem to be in some way related to increased stress levels but not always.
If anybody has any ideas it would be greatly appreciated.

Maz

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14 Replies:

  • has your mom been checked for auto innune diseases like lupus> just a thought......
    Anonymous 42789 Replies
    • February 20, 2007
    • 11:51 AM
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  • Thanks Fair, but yes she has been tested and that's been ruled out as well.
    mazhug 1 Replies
    • February 21, 2007
    • 11:30 PM
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  • I am 61 years old. at the age of 27 I developed first hives then angeoedema (see definition on website). The hives appeared first on my torso, then on my hands over a period of several weeks. Within a month they were everywhere intermittently. Within six months I had them several times a week. By then I had been through two dermatologists and an immunologist. At first they supposed an allergic reaction. No antihistamine worked. Allergy tests showed that I am virtually allergic to nothing! Then nerves. (this was in 1972 when they knew even less about immunology than they do today) which is the diagnosis usually given when the doctors havn't a clue.. At this time my sed rate was normal. Within a year the hives had progressed to angeoedema, joint pain, malaise, and I had two trips to the emergency room because I got angeoedema (deep, horrid hives) head to toe, on my lips and eyes, in my mouth, and going down my throat. My sed rate was rising and I started having a low-grade temp. The joint pain was awful whether or not I had a "whelt" over the joint. I also started having severe pain under the sturnum which we later found out I was getting internal angeoedema in my esophagus and probably elsewhere which probably contributed to the malaise. The dermatologist/immunologist then prescribed prednisone because I was suffering virtually every day by then and had to lay in bed in agony. The prednisone like a miracle immediately cleared the hives/angeoedema. I was suddenly back to normal after 1 1/2 years of ***l. It was then that I was referred to one of the top immunologists in the world, Dr schaffer at Harvard (fortunately I lived in Boston). He wanted me off prednisone of course and tried virtually everything (every antihistamine known, in combination, and even in huge doses) none worked. Then he tried methyltrexate. No effect. I was tested for everything Lupis, hereditary angeoedems (C-1), thyroid, etc., etc., I went to the Mayo Clinic for a week of diagnostics. Nothing. The only test that showed anything was a skin biopsy that showed I had small vessel vasculitis of the hypersensitivity type which means the hives appeared to be cause by an allergic reaction but I wasn't allergic to anything but myself. (Also called leukocytoclastic vasculitis). In order to reduce the prednisone (I was on as much as 65mg/ day) I had to live completely sedentary because activity and pressure made the hives worse. I was able to get the prednisone down, but never could go to every other day I lived this way for the next 27 years!!! I had several periods of remission lasting a week or two, and once for about a month. There is no explanation for this. Then about 8 years ago the hives started getting less and less until I was without any symptoms and off prednisone for almost 8 years!!! Then suddenly six months ago it came back with a vengence with all the symptoms, and I'm back on prednisone. THERE IS STILL NO KNOWN CAUSE FOR THIS. IT IS AUTOIMMUNE. So don't beat yourself up trying to find a diagnosis as all that can be done is treat the symptoms anyway. Meanwhile my mother developed a similar condition called polymyalgia (there is another word on this I don't remember which makes it a specific kind) which often hits older people that has all the same symptoms including the elevated sed rate and fever. She is on prednisone. It is the only treatment. The malaise is awful. I was too young to have that diagnosis before but maybe I am an aberration. It is awful to have a disease that can not be diagnosed because the doctors really don't want to have you as a patient. It is very frustrating. However, if you can respond to prednisone or any other treatment, be happy with that (you could be worse-off) until medicing discovers a lot more about the immune system. My aunt who had vasculitis could not take prednisone because she had side effects. I've taken it for over 30 years and have had no side effects at all except for skin thinning and weight gain (Cushings). It's a miracle. Good luck
    Anonymous 42789 Replies
    • February 23, 2007
    • 00:53 PM
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  • hi - i am a 37 year old female who has had a history of migratory joint pain. i've tested negative for all of the autoimmune disease tests. i just broke out in hives a few weeks ago. my doc gave me a steroid drug, which got rid of them thank God. i then had the joint pain flare up, particularly in my shoulders. my hand was tingly/numb, and i noticed that my veins in my hand on the palm side were very prominent. my blood work is normal. my doc thinks i'm crazy and that i just had an allergic reaction to something. i'm afraid this is part of a bigger picture. if anyone has any info on similar symptoms/experiences, please write to me at cas95osu@hotmail.com thank you.
    Anonymous 42789 Replies
    • October 7, 2007
    • 03:55 PM
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  • Have you been tested for Babesia,Bartonella, Ehrlichiosis, or Borellia? Some times one of them are at the bottom of unexplained illness and auto-immune problems . They also cause hives, rashes and joint pain. Feel better ~~Dee
    Anonymous 42789 Replies
    • October 8, 2007
    • 10:33 AM
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  • I recently came down suddenly with acute symptoms of joint pain - starting in hands but moving into other joints throughout body, accompanied by spiking fevers, quite high for several days, fatigue and a terrible red rash with hives on my Torso. My grandkids school had reported a Fifth Disease (parvovirus) outbreak several weeks before. My daughter and her whole family subsequently displayed symptoms of this disease - the kids only had facial rash and very slight fever briefly, my daughter and her husband had symptoms similar to mine (Parvovirus can cause more intense disease in adults). I spend a lot of time with them, provide part-time day care, etc.I came down with these symptoms about 2 weeks later. Went to the doctor who ordered tests. Tests showed elevated ESR, and liver enzynmes. The Parvovirus test, which came in a couple of weeks later, indicated I have had Parvovirus in past, but not recently - doctor says it must have been something else.Note that I "do" have Lupus, but have never experienced it manifesting in any way like this in past - mostly mild chronic symptoms (was diagnosed 10 years ago). And it seems terribly coincidental that I develop these acute symptoms that so closely match those described for adult Parvovirus, soon after Parvovirus is confirmed in my grandkids school, and the rest of the family also come down with symptoms. Any thoughts on other viruses that could cause this? My search showed up Stills - but my rash was much more severe than described, and Rheumatic fever - but I had no sore throat.
    Anonymous 42789 Replies
    • January 3, 2008
    • 04:29 PM
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  • 4 months ago i came out in severe urticaria all over my body very very itchy and sore with face and hand swelling, I was commenced on TElfast (antihistamine) 180mg 2 x a day, this did not help, then started on citirizine which just made me even more drowsy than i already was without tablets, i then got prednisilone (steroids) 35mg 2 x a day reducing dose by 5 mg every day. this was amazing all my symptoms disappeared apart from the drowsiness.when the steroid dose became very low my urticaria returned and now the doctors refuse to give me anymore saying it is not a long term option. my face continues to swell i feel like i have been punched in the face repeatedly, when my hands swell they go burning hot and i lose the use of them untill the sewlling goes down, ive been seen by two dermatologists one took blood samples all came back negative no aneamia or thyroid problems or allergens which are all major triggers of urticaria, my condition is now classed as chronic ruling out all allergens however my ana blood test came back positive 1:80 but the dermatologist and my doctor do not think this a cause for concern so until my chronic urticaria compkletely goes away which could take 5 -10 years all they will do for me is continue my anihistamines which have no effect do not stop flare ups and offer no relief.can someone offer any advice??
    Anonymous 42789 Replies Flag this Response
  • Jeni9,Sorry to hear of your problems. I have many of the same symptoms (hives from head to toe, swelling and burning of my hands, low grade fever, itching that isn't relieved by anything, pain in my joints and bones.) If you or anyone else has any new info you can share, please let me know. It's been 5 weeks of this and I'm not sure I can take much more.Thanks and Best Wishes to Everyone,tmed
    Anonymous 42789 Replies Flag this Response
  • Mazhug, you and Same Symptoms *should* be thnking about Hereditary Angioedema. Same Symptoms, I hope you read this because your doctor is wrong-- there is a third type of HAE called HAE III which is *not* picked up by blood tests. I have it. Your doctor (Sheffer) told me there was no such thing as HAE III. He's flat wrong. Go here: http://www.ncbi.nlm.nih.gov/entrez/dispomim.cgi?id=610618
    aquila 1263 Replies Flag this Response
  • I think you might find a very good homeopathic doctor where you live and he will be able to help mum a great deal.
    Monsterlove 2921 Replies Flag this Response
  • Much as I agree with you lots of times, Monsterlove, if this is HAE it is nothing to fool around with. 20-30% of people who have it die without warning.
    aquila 1263 Replies Flag this Response
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  • I would say you don't understand homeopathic medicine.
    Monsterlove 2921 Replies Flag this Response
  • I have been suffering from chronic hives for 4 loooong years. It all started when I noticed red swelling, burning, itchyness on my hands and feet and gradually spread over my whole body. Including my tounge, eyes, lips and more recently throat. I have never been so frustrated before in my life. I am totally restricted to what I can do, it is induced by any kind of pressure (ex. carrying grocery bags on my wrists) exercising, some foods trigger it (I think) and stress. I have been on Prednisone for 4 years which for the most part suppresses them with occasional flare-ups. If I don't take the prednisone which I have done a few times so that at dr.s appts. they can see what I go through, I am a complete disaster. My whole body swells, aches and I just feel like crying and giving up! I have seen numerous rheumetologysts and had tonnes of bloodwork done. My ANA test came back with a strong positive. I am now seeing a new rheumetologyst/dermatologyst who says I have chronic urtecaria. He is putting me on Aerius for 2weeks and I will be incorporating Singulair for another 2 weeks together with the prednisone (i'll lower the dosage to see if it has any effect). I'm all game for trying something new, anything to get off the steroids but I have been doing my own research and have come across something called Autoimmune Progesterone Dermatitis. Apparently rare, but seems that has come up in people that have prevously had some interaction with progesterone/synthetic progesterone. I took the Depo Provera birth control shot for 7 years which contains an artifical form of progesterone. I am now convinced I may have Autoimmune Progesterone Dermatitis and the hives were triggered by the Depro Provera birth control shot!! I have an appt. with an allergyst in a few weeks for allergy testing. If the results come back with no allergies I will sugest to the dermatologyst to do hormone/progesterone testing to see if the allergy lies there. Have any of you experiencing hives also taken this shot? Does anyone know anything about Autoimmune Progesterone Dermatitis? Any feedback is appreciated.
    Kimber 3 Replies Flag this Response
  • The attacks would also seem to be in some way related to increased stress levels but not always.If anybody has any ideas it would be greatly appreciated. MazHas she been checked for Reiter's Syndrome? It is an autoimmune disease that is triggered by a seemingly unrelated infection. There is a marker that they can check for and if they also rule out rheumatoid arthritis this "syndrome" is the likely cause. It also goes by the classification name of Reactive Arthritis.
    owndao 1 Replies
    • November 20, 2009
    • 06:30 PM
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