I have Lupus and right now docs are believing I also have Vasculitis. I have gotten the "small red pin*****s" rash on my arms for a while now (a few times a year of the past two years). It seemed sun aggravated at the time...my skin would get hot, itch, and then there were spots.
This time is different. I do have an area on my shoulderblade (which was not sun exposed) larger than a silver dollar with the red pin***** rash. There are a few elsewhere but no big deal.
However, this time, I presented with a lump in my chest after a three week flare. It was tender to the touch. Within two days I had two more. In a week, I was up to at least 10. You can't see them on the outside (with the exception of two that made my skin bruise from the inside-out) but you can easily feel them. I don't know how many I have anymore. As I said, they are tender. I'm also having some problems with nausea and, of course, fatigue and pain.
I was put on a course of steriods and will continue with 10mg a day until I see my Rheumy. I have had both a mammogram and an ultrasound, and nothing was "red flag" enough for them to send a report right to my doc. They are still working on the diagnosis of Vasculitis at this time.
Has anyone else had this kind of Vasculitis? Seems most are mentioning sores and rashes, but no one with "tumor like lumps." I am having a very difficult time finding anything out.
Hi there, I have read your other messages on the Immune board and I think we are both seeking Vasculitis information (which is so hard to find) - maybe what I have learned will be of some help.
In my case I am looking for information because my father has developed vasculitis. He was diagnosed with RA ten years ago and has been on low dose prednisone to manage it ever since. At the time I only saw him once a year - I remember very clearly when I visited him at that time he had a terrible facial rash (now I know it was a classic malar rash, and he has also developed photosensitivity). So I wonder whether he has the correct diagnosis - in any event the point is he was on low dose prednisone and I believe he has stopped taking it because of concerns about side effects.
This year he has started with vasculitis - as you know there are many different kinds - in his case itchy rash starting on the lower legs and then moving to arms and rest of the body, and it is being treated with mega-doses of Predsinone - 80mg and tapering down.
I actually knew it was vasculitis before my father's third misdiagnosis because my sister-in-law (who has RA) developed it last year and we saw four doctors plus an ER visit without any diagnosis - one doctor prescribed the kind of dose you are on, which improved things for a week before they deteriorated again. It wasn't until I got on the internet and found vasculitis that we raised holy hell with the doctors and got some action.
This is a bit of a ramble, sorry. But my point is, from my experience:
- one in five doctors know what they are doing when it comes to vasculitis
- if you already have an autoimmune disease, it is the failure to manage that disease properly that results in vasculitis presenting (that is what I think is happening with my Dad - misdiagnosed and therefore under-treated)
- vasculitis is (can be) very serious and needs to be aggressively treated - 10 mg prednisone a day is nothing and you need urgent attention and much higher doses at this stage - I don't know how long before you see your rheumatologist, but in my SIL's case we pushed for an emergency consultation with the consultant rheumatologist at the hospital
- every day that goes by without adequate treatment makes the situation worse. I think I am a bit unique in seeing two people with this within the space of a year, because it is a rare condition. But the difference in it taking six weeks for SIL's diagnosis and appropriate treatment versus my father's two weeks is HUGE, so please act quickly
I am sorry if I am freaking you out here, but if the rash you have is vasculitis, then you need to be very vocal about getting appropriate treatment.
Please post updates, and I wish you all the very best.
I am seeing my Rheum a week from today. They double booked me to get in. I haven't noticed an improvement now that the higher course of Steroids is over. I'm only supposed to be on the 10 until I see the Rheum and then we go from there.
I still have the lumps and they are still tender. My reg doc said that it could take 2 weeks after steriods for improvement? That seems long to me.
Thank you so much for your reply. Any other info would be greatly appreciated. I'm just having a very hard time finding info because almost everything discusses vasculitis as visible from the outside of the skin, not mostly just lumps under the skin.
I only wish I had more information. One of the better sites I found was from one of the very high profile teaching hospital sites - I don't think we are allowed to mention the name here, but if you do a search on vasculitis center you should get there. They have an "ask an expert" service on their site _ I sent off a message a couple of days ago but have not had a response yet. But that may be worth a try, especially since your presentation is so unusual?
As for the recovery, from what I have seen it is more a case of weeks and months of gradual recovery (mainly from the fatigue). It can also have the characteristics of a flare - meaning the inflammation causing it can just go away eventually.
I am thinking of you, please post an update when you can. And good luck for the rheumatologist appointment.
Hi again - I've just checked my copy of The Autoimmune Connection" (Rita Baron-Faust). According to her the dosage depends on the kind of vascultis you have - lower dosage prednisone for polymyalgia rheumatica (PMR), and higher doses (40 to 60mg per day) to control other kinds.
I can't see anything in there that sounds like what you've got unless this makes sense to you "inflammation from vasculitis causes two types of damage. It can weaken a section of the blood vessel wall, causing it to stretch and bulge out like a tiny balloon....."
Me again (well you did say any more information is welcome ;-)
Actually I have found some very good material on the Lupus Foundation site - there is a 5 page article there you may want to read.
The two things that stood out were, in the description of symptoms, this one:
"If a larger vessel is inflamed, it may swell and produce a nodule which may be felt if the blood vessel is close to the skin surface. "
and, in their advice on approach:
If you suspect that you or a friend or relative has vasculitis, a physician should be consulted as soon as possible. Remember:
vasculitis can be very mild and of little importance OR
very severe and life-threatening OR
any degree in between.
Does your doctor know you have to wait until next Monday to see a rheumatologist - could you perhaps call your doctor and ask him/her if they think there are any risks involved in you waiting that long?
Yes, he knows. He is in the "oh please can we pass her off now" stage. In other words, he has no clue what is going on, or what to do with me, so off I go to wait for the specialist (in whom I know I'll at least get more tests, if not answers. She's great).
So there aren't a lot of options for me...I mean...I could go to the ER, but since my symptoms are the same as they have been all along...it's not really an emergency, is it? They will also most likely just tell me to see my Rheum.
I'm starting to look like a battery victim though. I wore capri's today, and my husband suddenly says "What is wrong with your leg??!?!?!" Sure enough, three bruises I didn't even know where there!
For all you know, I am just a nutter on the internet who can read. I don't want to escalate any unnecessary concern, but from what I know this is potentially controllable AND potentially very dangerous if not controlled - not a lot of doctors know a lot about it. So whatever you can do in your own defence is worthwhile in my opinion and experience.
So, in your shoes, I would escalate it - get a second opinion, go to ER, let the rheumatologist know WHY you are going to see her. Do you have someone who could do this for you? (I know you must be very tired). In my SIL's case, my husband went completely berserk at her doctor (who had been looking at it for five weeks without knowing what it was) - not pretty - but it did get her a rheumatologist consult in three hours.
EMcreative, Good morning---and I agree with Georgie, that you definitely want a specialist to see your pin***** rashes & chest lump. After I started treatment for lupus & was on the upswing, I got into a talk with my wonderful plumber. From his face, I guessed he was on steroids. What a serious episode he had: a leg with serious vasculitis, furiously swollen and frightening to look at. He's fine now, but it took a specialist at a teaching hospital & perseverance to find that dr.
I have cutaneous vasculitis (ankles mostly) along with the SCLE subset of lupus---but it's mild---a far cry from serious or systemic vasculitis.
And because the lump on your chest may or may not be vasculitis is another reason to have it & the pin***** rashes checked out. GOOD LUCK! I hope you post updates when you can. Sincerely, Vee
I went and saw my Rheum today. She is so wonderful! She felt some of the lumps, and saw a few of the bruises. Luckily this time I'd remembered to take pics of the rash and the other bruises! She ordered a TON of bloodwork I had drawn while I was there. She also fast-tracked me to their dermotology specialists so they will hopefully biopsy one of them to see what's going on. I go there Wed. morning.
Her thinking right now is either vasculitis or panniculitis. I don't know how long after the derm appt I will get the biopsy, or how long for results, etc, so it's a waiting game now.
She is keeping me on 10 mg pred. and added plaquenil (I know I have spelled that wrong, but you know what I mean!)
Thanks so much for your info and support during all this. It has been nice to not feel so alone.
HI there, it is great to see you are getting such fast and competent attention!!!
From what I understand the only way to know exactly what is going on is through a biopsy - so your rheumy has you both on the fasttrack and the righttrack Here's hoping the Plaquinel does its thing and calms the inflammation down in the meantime.
I don't think I have ever heard of panniculitis so I had to look it up - that sounds like a tricky thing too - great that your rheumy seems so on to it!
In my father's case he has now gone three rounds of high-dose prednisone but the symptoms are still worsening, so he is being referred to another specialist.
All the best for the biopsy - I'll be thinking of you, and I'd be really grateful if you would give us an update on the results.
Last edited by georgie04; 09-17-2007 at 10:11 PM.
Reason: can't spell
In my experiences the dermatologist does the biopsy on the spot - but I realise this may be more invasive so maybe I was jumping the gun a little there.
Have you seen you also had a response on the Immune board? Good advice too and along the lines of what I (we) were saying - if you feel there is any kind of delay in getting competent attention please escalate it in any way you can. I know I had a very strange response from a dermatologist once - she was clearly wrong - so I'm just saying, don't be backward about being forward and get a second opinion if you are not seeing urgent attention being given to your situation.
Yay! I was able to get a biopsy today. Believe it or not, while I was sitting in the waiting room for the appointment, I "found" a new tender lump right under the bend in my elbow! It ended up this was the best spot for them to biopsy. They went in and said they were able to remove the "mass," and that it was very clear that it was tissue that was different from the rest of the tissue. I know it sounds odd to be happy about that, but I was. For once there is something they can ACTUALLY TEST and not just throw meds at it while they guess what it is!!
I should get my test results back in a week or two, and I'll let you all know how it goes. I'm also going to the plaquenil clinic on the 10th, which should also be interesting.
Oh that's excellent news Deborah, I know what you mean when you say it seems odd to be happy about it, but if it proves to be the fastest way to get the clearest answer, then that IS something to be happy about.
What you said about the tissue makes the lumps sound (according to Dr Wallace) more like panniculitis. He doesn't say much about it, but he does say it responds to antimalarials, so yay the Plaquenil clinic!!!!!
I'll be thinking of you, and hope you get the results back quickly.