Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Purpura - vasculitic?

Has anyone ever suffered from purpura? It's dark red/purpley/burgandy colored blood spots under the skin?

Seems there are several reasons for it (when I googled it) could be a vasculitis? I've got in on my arms.

Any takers on this one?


Jewelz

i have this and it has been getting worse as i get older it seems, what is it and why?

hmmm, I don't know badbackytoo. We sure sound alike in our problems. Have you been diagnosed?

I have neck problems, tendonitis all over body, rotator cuff, elbows, patellar tendonitis, achillies tendonitis, etcc.....

could be, but i tested out as - for hbla, and my sed rate goes up and down like a seesaw...i am not normal no fusion for illiac either but i have all the other symptoms...? ya think? most of the rhuemys have been perplexed bby me....

Rheumys are also purplexed by me. I am also negative for HLA-B27. My sed rate and crp and platelets are high. I also have a high alpha2 glomulin. Hematologist says all together it paints the picture of systemic inflammation.

I've had this for 5 years now. And it just keeps getting worse and worse.

Hi Jewelz

I have purpura, at times on my arms and legs. They look like bruises under the skin - like how you describe it. Like a blood clot, just under skin - mine about size of dime.

I read also that is could be vasculitis. Not sure Rheumy didn't seem to recognise pictures I took. It's understandable especially when, I am not a good picture taker.

Hugs
Gerri

Hi Jewelz, yes we do sound similar. i had my left rotator cuff sewen back on in 2004, bone spurs grew into them and tore the cuff off. full labrum tear. bone spurs in my neck and in spine, and who knows where else. swollen tendons all over my body, red rash in behind my scalp back of my head above my neck some, it comes and goes, not fungal not infection been there since 2003. tried tons of stuff to help it will not go away. scarlet in color, sometimes it itches sometimes it doesnt. not plaque in style. maybe ezecma or something been to tons of different docs to DX it but no one has been able to so far. fingernails pitted and break -vertical splints which look like fine splinters redish in color underneath fingernails at times. in toenails also. creptations in both shoulders very loud when i move my shoulders and in my neck, doc says some endplate stenosis in spinal verterbre but not fused. no illiac joint fused. skin bone dry, eyes dry, nose dry mouth dry, sjorens. drink tons of water and yet still feel dehydrated, no caffine, no chololate, no booze, no smoking.
heel spurs give me plantar facitis, and i have both achelles tendons torn with the hallmark bumps.
left one worse than the other. that is only for starters...cant sleep, and up all night, feet go numb, was tested for sleep apnea, negative. went to a crin doc no diebeties. have odd and unusual strong sense of smell-- hyper smelling abilities, to the point of distraction. do not play tennis, golf, etc, can do walking can do on a limited basis. i like to garden on good days, and that means pretty much try to throw down a few seeds and see what happens. have lots of bursitis issues all over. no TTG was tested for gluten sensitivity negative for that although my mom had it later on in years.
do have gerd and acid backup at night forwhich i take prisolec. i am taking dilaudid right now for pain issues, sometimes tylenol, tried ALL NASIDS and got bleeds from them all.
rhemy wants me to take arava.
and do pt for tendons in elbows, she is not a very good rhuemy but i have not too many choices as most will not take my ins.
am on medicare/medcaid which limits me as to my choices.
i pretty much quit on a concsise DX, she says i have PsA. not sure what i got, a combination of stuff. my bloods dont show anything although the sed/cpr have seesaw many times. old rhuemys says it is nothing, see i am an odd ball. my bloods will not usually show anything until i am half dead, went into have an op on 2002 and they gave me 4 pints of blood, the docs say i am a ''bleeder'' what ever that means.
so now i give up. i think it is a toss up between AS and PsA, sometimes these things can overlap my guess is.OH yah, i forgot totell you i have plenty of stiffness/soreness/acheyness, etc that just goes without saying!! or someone can have mild cases of both i would think? thanks for reading this.

sorry to hear about all this with you Jewel.
We all seem to have this very unplesant illness dont we....
i do not understand how the docs can make such great progess in other areas of illnesses and this one not too much is going on except for dmards.
i suppose if we had this 20-30 yrs ago we would be even worse off though. <k
but still that is not helping us now is it. they can send a man to the moon and clone people so why cant they cure or give us all a better fix for us! I do not know how old you are sweetie but i am glad i am nearly 54 and not just starting out in life with this. i hope you have some pain free days. what are you taking for pain?

Hi Badbackytoo, I've just turned 42 and I've had this for 5 years now. I just take tylenol for pain - I can't handle the oxycontin that I have, it makes me puke. But I have taken it during emergencies. Like you, tried all the NSAIDS and my tummy can't take them anymore. I do use Voltaren (diclofenac) gel on affected areas. I take prednisone and plaquenil. I was originally Dx'd with Rheumatoid arthritis. Was on methotrexate and Humira but it did not help with the tendon issues. My rheumy left the practice and got a different one and he recinded my Dx, says probably a spondy disease. Went to Mayo too, the rheumy there said probably a spondy disease but didn't know which one either. I've been getting worse and worse fairly quickly now since December last year. My feet are so bad that I'm now housebound. I've lost my career and many friends because I don't have any mobility. My feet are definately my worst area. I too have huge bone spurs, the achilles bumps and tendonitis, tendonitis all over my feet and now I've got 2 toes that have deformed just in the last 2 months. It's really bad.

I have a dear friend with PsA and she sounds alot like you with the fingernail pitting and stuff. Has anyone ever biopsied the rash in the back of your head? The docs can guess all they want about it - until they biopsy it. I wish someone would biopsy my tendons...maybe it would give an answer! They keep running the same blood work over and over and over. Seems like the saying "idocracy is doing the same thing over and over and expecting a differnt result"!

I take prilosec too - GERD also. No fingernail issues. No rashes. Epi-scleritis though. Loads of neck problems.



Hi Gerri! I just took pics tonight to make sure I have them for the doctors appt. IF I ever find out what they are for sure, I'll definately post it. I don't know what else it could be. My hematologist tested my platelets to make sure they were functioning properly and they were. So, I'm thinking it must be the blood vessel it'self.

Hugs
Jewelz

Hi Jewel, I call you that b/c you sound like a jewel of a lady. I am mostly house bound also. I HAVE NO FRIENDS AND HERE IS WHY.
I used to get invited to all kinds of events and such but b/c i never know if i am going to feel up to going or not i usually can not make a commitment and that makes people mad at me. they dont understand what is wrong with me and why the docs dont give me a clear concrete DX and fix me.

so i have lost most of my friends. i hada few older friends who were on the same par as me, i mean people who were in their 60-70-80's. I had one neighbor who was a 94 yr old man who was very nice to me and used to come over to check on me everyday, he lived 5 houses away and had more energy and used to ride his bike, i envyed him and at 94 he was healthier than i was until he got lung cancer and died on me in august, he would come over and keep me company and we would wathc old harrold llyold movies on TCM which we both laughed at. he had a charm to him and a young spirit about him. he was fun to be around. but he too, used to say to me , you are too young be be stuck at home and feeling ill, so he didnt understand either but he was not judgemental. but then he died in august. so i lost my only friend who used to care enough to call me every day and check on me.
people in their 50's still have life left in them so they wanna go and run the roads, well i cant do that anymore.

so i stay home.
my husband divorce me for a younger model. well i guess i cant say as though i blame him much on account of this illness is very taxing to any relationships. no one wants someone who whines all the time, and frankly, no one wants to listen to me -so i shut up, i learned i have to. i try to put on a happy face and when people ask me how i am i say fine /b/c they dont wantto really hear how i am doing. i sound like an old lady and no one wants to listen to this.
i learned it makes no sense to complain cause they cant help me anyway.
i live alone, things dont get done here. or only when i have the energy to do things as i can. i make everything microwave and eat lots of kashi cereal. easy stuff ya know. apples, stuff i do not have to cook, no processed foods.
i sleep alot.
i cant have a man tell me when to get up cause sometimes i do not get to sleep until late as i have insomina. so this is the best for me i guess. i have neighbors from time to time ask how i am or if i need help sometimes i do and they help when they can.
i go to docs, then come home tired out and depressed cause i still do not have answers, i get passed around from one doc to another doc. i feel like on i am on a railroad some days. i do not have any pets as i cant care for them.
plus i can not afford the expense. would like one though.
well that is pretty much it for me and i really do not see things changing much.
you mentioned about your neck, how does this figure it to it all with your syptoms?
TC, pain free days are around the corner, hope is on the horizon