Auto Immune Flare Up Why?
elainebadknee
Bots Posts: 3,703
Hi Guys
I know this aint arthritis and may get told off but hey, ive got arfur and this is part of me so here goes!
Ive got idiopathic urticaria and angioedema which having seen an immunologist last september it has on the whole seemed to have calmed down. Last week however in the evening could feel hot burning upper arm, looked at it and it was from my armpit to my mid arm, red, itchy, burning (aqueous cream just slid off it, it were that hot)....I went to docs next morn could only see nurse prac who at first said had i shaved my arms (think she thought had used razor on whole arm) and gasped....Gave me prednisolone and it took 2-3 days to calm down...Then this morning the other arm has flared back up, have been on 25mg pred, and got a wedding in Inverness this weekend so dont want to be uncomfortable.....So again I goes to 48hr cliniuc sees another nurse practitioner who gasps again, strokes it, feels the heat off it and it totally flumoxed by it, says he doesnt know what it is, can i wait and see a doctor? I see said doctor she too admits they are not sure what they are dealing with and think need blood tests, immunolgy tests as have never seen anything like it before......Am now on 40mg pred to try and control this till after wedding...
Why has this happened, i go hardly anywhere and now one weekend i get this frightening me...I know its not going to kill me, but I dont know how to deal with it, and it scares me they dont seem to know what it is either...I can deal with what sort of animal I know but its the unknown...I think its urticarial vasculitis from my immunolgy leaflet.....
Its also going to hamper my weight loss being on steroids...Im a bit hacked off...Sorry to whinge...
Elaine :-((
I know this aint arthritis and may get told off but hey, ive got arfur and this is part of me so here goes!
Ive got idiopathic urticaria and angioedema which having seen an immunologist last september it has on the whole seemed to have calmed down. Last week however in the evening could feel hot burning upper arm, looked at it and it was from my armpit to my mid arm, red, itchy, burning (aqueous cream just slid off it, it were that hot)....I went to docs next morn could only see nurse prac who at first said had i shaved my arms (think she thought had used razor on whole arm) and gasped....Gave me prednisolone and it took 2-3 days to calm down...Then this morning the other arm has flared back up, have been on 25mg pred, and got a wedding in Inverness this weekend so dont want to be uncomfortable.....So again I goes to 48hr cliniuc sees another nurse practitioner who gasps again, strokes it, feels the heat off it and it totally flumoxed by it, says he doesnt know what it is, can i wait and see a doctor? I see said doctor she too admits they are not sure what they are dealing with and think need blood tests, immunolgy tests as have never seen anything like it before......Am now on 40mg pred to try and control this till after wedding...
Why has this happened, i go hardly anywhere and now one weekend i get this frightening me...I know its not going to kill me, but I dont know how to deal with it, and it scares me they dont seem to know what it is either...I can deal with what sort of animal I know but its the unknown...I think its urticarial vasculitis from my immunolgy leaflet.....
Its also going to hamper my weight loss being on steroids...Im a bit hacked off...Sorry to whinge...
Elaine :-((
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Comments
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hi elaine....well i am sorry to say i cant help you, there were some long words there i have never heard of.
(I only recognised predisolone )
I do hope though that the amount you are on now gets rid of the symptoms. I hope the bloods come back and gives the doc an Idea of what is wrong. (should they have really increased the dose if they are not sure what it is though :???: )
Well like I say, I hope it clears up for the weekend for you and you have a good time
Take care
Juliepf x0 -
Hope things settle for the wedding,am thinking of you.Mig0
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All of us who have auto-immune conditions wonder this from time to time and I hope the person who discovers the answer gets the Nobel prize for medicine.
The immune system is a temperamental beast, those who have a normal one don't know what 'fun' they are missing. :roll: I hope they can discover what triggered this episode so that you know what to avoid in the future. The pred is only a temporary solution perhaps, so weight gain may not be an immediate problem. I hope they can discover what is going on with this, and soon. I wish you well and I hope you enjoy the wedding. DDHave you got the despatches? No, I always walk like this. Eddie Braben0 -
Hi Julie
Well the long words basically mean big flare ups, weals that go from armpit to elbow with a heat that could fry an egg!! The last ones vasculitis is very rare but they are not ruling out ive got it as im a medical mystery to all at surgery, seeing my own doc thursday at 08.20 as she is dermatologist at practice but think she will order blood, immunology apps...
Im driving for wedding which dont bother me too much....Im not sleeping too good on steroids though but rather be weal free, or safer...
Elainexjulie47 wrote:hi elaine....well i am sorry to say i cant help you, there were some long words there i have never heard of.
(I only recognised predisolone )
I do hope though that the amount you are on now gets rid of the symptoms. I hope the bloods come back and gives the doc an Idea of what is wrong. (should they have really increased the dose if they are not sure what it is though :???: )
Well like I say, I hope it clears up for the weekend for you and you have a good time
Take care
Juliepf x0 -
Hi Mig
Its going to be soft drinks for me but will still enjoy the shenaligons!!
Elainexmig wrote:Hope things settle for the wedding,am thinking of you.Mig0 -
Hi DD
Its just so annoying that since last immunology app last sept, have been virtually flare free...Its seems to follow a funny cycle - last week when on right arm it flared after dinner (7.30pm) and was so hot...On left arm it flares at bedtime and my wrists become inflamed too....
I cant think of anything that has triggered this off, eat a pretty plain diet, have used soya vanilla yogurt recently but doubt that could cause this??I can deal with what i know but this isnt my usual weals that disappear with aqueous after an hour or so...They dont worry me at all now but this does....
I hope the steroids arent long term, still exercising but dont want to aggravate this stupid thing!! Its definitely called idiopathic for a reason!!
Elainexdreamdaisy wrote:All of us who have auto-immune conditions wonder this from time to time and I hope the person who discovers the answer gets the Nobel prize for medicine.
The immune system is a temperamental beast, those who have a normal one don't know what 'fun' they are missing. :roll: I hope they can discover what triggered this episode so that you know what to avoid in the future. The pred is only a temporary solution perhaps, so weight gain may not be an immediate problem. I hope they can discover what is going on with this, and soon. I wish you well and I hope you enjoy the wedding. DD0 -
Oh Elaine... I'm so sorry you've got this to deal with on top of everything else. :sad: and you are definitely not whingeing!...it's understandable you are worried about this 'new' development.
I hope the steroids help and that you get a diagnosis of what exactly is causing this flare.... it does sound so very painful. :shock:
thinking of you
iris xx0 -
Hi Iris
Its the timing of it..The last time I was out was honestly a few months ago to Pizza Express with niece and sister and now ive got this wedding in Inverness from 1.30pm till 12.30am approx its so annoying....
When it was on the left arm it was hotter, came up after tea, now its on right arm it likes to come alive after 11pm and isnt as hot....Its bruised as well and tender...Like I say I can deal with what I know but this isnt like my other rashes that go away in an hour or so...
The steroids arent great, not sleeping great but need to keep this beast at bay and get it caged and named!!!
Hope you are keeping well yourself...
Elaine & Sol
xx xdorcas wrote:Oh Elaine... I'm so sorry you've got this to deal with on top of everything else. :sad: and you are definitely not whingeing!...it's understandable you are worried about this 'new' development.
I hope the steroids help and that you get a diagnosis of what exactly is causing this flare.... it does sound so very painful. :shock:
thinking of you
iris xx0
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