I have just come back from my doctors and YAY my chest is clear but i have the mother of all sinus infection still and Urine infection still.UGGG!!!!! I also had a shock and I am still feeling really confused.My doc thinks I have vasculitis. I am seeing my new rheumy in September so will have to wait until then to find out what happens ( I know i have to have bloods and a skin biopsy done).I am in extreme pain at the moment in my right leg into my groin and stomach pains are terrible from the urine infection.I have burst blood vessels in my leg and I am still choking with this sinus cough. I also have dry eyes and little tiny white ulcers in my mouth(not thrush). I feel as if I am sinking badly. Hubby has put me to bed but too sore to sleep and typing is taking ages but i need to winge.Ack! I am so sorry sweetie, that sounds miserable. I think Deanna had or has had issue with vasculitis, maybe send her a pm? I don't really understand it well myself, sorry. Can your gp call the rheumy and see about getting your appt moved up?? Is humira the only thing you are on? Could the gp at least order the blood tests so the results will be ready when you do get to see the rheumy?? Sorry so many questions, just trying to brainstorm. I hope things ease up at a least a little for you. Love and hugs, whine away, you definitely deserve to!!!!
WHAT EXACTLY is vasculitis???? Feel better fast. OD yourself w/ vitamin C for that sinus infection. - MonkOOOOPPPS! PIN!!!
EEK!@vasculitis.
Its where your immune system attacks your blood vessels and makes them inflamed. Depending on where it is it can be dangerous, or not (like if it affects the heart).
I had cutaneous vasculitis a few years ago, so it was just my skin affected. They were going to sort it out by giving me a high dose of pred -60mgs (thats how I got started on the pred in the first place...) tapering down over 6 weeks. (2 years later and Im still on it!) but it cleared up by itself. They gave me the pred anyway, as they dont like to take risks with this sort of thing (at the lower dose of 30 ms), especially if theres a chance any organs may be affected (they thought my kidneys may be affected, but I managed to talk them out of doing a biopsy *EEK!* because the medication and doseage would have been the same whether my kidneys were affected or not).
It can happen as a result of an infection, if so then it should go away when the infection goes.
Sorry, thats all the info I have! I'm not sure whether its a common side effect of RA or not. The blood test should confirm whether you have vasculitis or not. I'd phone up the rheum nurse and get your results if you can, as you don't really want to hang around waiting for too long if you do have it.
Sorry to hear you're so poorly Pin, my hubby says sex is the best cure for everything!!** hee hee hee, yours obviously doesnt know about this cure!!
Oh, Lisa, I'm so sorry you are having so many problems. It seems like they all hit at once, doesn't it. I think urinary infections are one of the worst things there are. So incrediblly uncomforable and painful.
I honestly don't know much about vasculitis, except that it is something they watch for when you have RA. I don't really know how serious it is. I agree with Michele about trying to get your appointment moved up. I know how hard that can be with Rheumys though. At the very least, maybe you could call when you are feeling a little better, and see if the doctor can tell you anything about it.
I'm so sorry you are in so much pain! You are in my thoughts and prayers. Feel better very soon.
Gentle hugs,
Nini
Oh Pin, I'm sorry you're feeling so poorly but I'm glad you're going to be seeing another doctor. I agree with the others, please call your current doctor and ask him to intervene on your behalf for an earlier appointment. If you have to, fib a little and tell them you're feeling MUCH worse. In a case like this I think it's OK to be a little less than honest. Vasculitis can be very serious and I'd really feel better if you saw the new doctor ASAP. Your current doctor may believe that yours is a less serious skin type and therefore thinks there's no hurry, but if it were me, I wouldn't want to wait that long when I've been given a diagnosis of vasculitis. When my ANCA blood work came back high, which usually indicates vasculitis, my RD said the combo of MTX and Plaquenil would help to keep it from become full-blown. Please talk to your new doctor about the 1-2 punch of a combination of drugs. Many RDs, including my own, feel very strongly that a combination of two meds are much more effective than one alone. There seems to be many different combinations that can work, but the key is that two drugs are being used instead of one. Please keep us posted. I wouldn't wait for September to see a doctor if it might be vasculitis. That is inflammation of your blood vessels and I believe can be quite serious. Maybe you should try and see the doctor sooner?Poor you Pin! you've really had a rough month haven't you? Please get well soon and quit getting these weird ailments, you're giving me a complexThank you all for the info and i wil let you know what happens
Lisa,
Ugh, I feel for you, I had a lot at once like this when I was dx with vasculitis. The seriousness of it depends on if it is systemic or cutaneous or is from an allergic reaction. Cutaneous or allergic can be left to clear up, but systemic can be quite serious if it is untreated. Will your doc put you on prednisone? That is the first thing done for vasculitis anyway. Then usually mtx or plaquenil or immuran-so treatment is similiar to treatment for RA.
On a happier note, I had vasculitis for a year or more before being treated and I didn't keel over or anything-but I did feel miserably sick. It can be hard to diagnose. I was dx'd with vasculitis and now my rheum is waffeling a bit so I'm going in a couple weeks to a vasculitis doc for a 2nd opinion.
It is scary when you realize your vascular system is under attack. You may see lots of skin manifestations so be observant and note any unusual bruising, rashes, livedo reticularis, sores, etc. Let us know how you are doing. Try to take it easy, your body is under a lot fof stress.
ps - I am on longterm preventive antibiotics (macrodantin) for UTIs and that is working well for me. Maybe that would help you as well.
Laker
Sounds like you had a day from HELL. I hope you start feeling better soon.
I think I have taken a lot for granted. Thank You Pin for the lesson in humble.
Oh, Pin, that sounds rough but you will get a handle on it. Be gentle on yourself and take things slowly. You have a lot on your plate at the moment. Be thinking of you. Lisa, that's just awful to see that you are going through so much. You are certainly overdue for a good break. I surely hope tis thing is not too serious for you, but that they can get to the bottom of it and get you some relief. Hugs Hearing what you are going through is terrible. I think that is horrid about your father and I'm sorry you lost him due to your healthcare system.Pin did you manage to get an appt? My ent consultant let slip last year that if you are on their books you can generally ring in and say you need to see him urgently. Its only if you've not seen your consult. for a a period of 6 months that you'd have to go through the whole rigmarole of being re-referred. NHS rules & regs say that if you've not been back within 6 months that you're off the books.
As a result I always get the name of the consult.'s secretary and direct number (not difficult if you go through main reception at the hospital and plead agony. they can be really helpful). Then I just ring direct and tell them I'm dying and I need to see him asap. This has never failed to work at getting an appt. quicker than your GP writing a letter etc etc. If they want you to play by their rules you have to know how it works (which is why they dont tell you).
By the way, I was dx with chronic sinusitis last year, only option left is a scalpel to cut away the permanently swollen/infected tissue. I said no thanks, no more ops for me.... not for a while.... as much as I love the anaethestic!!
Give them a ring and pester them till you get somewhere..... be.... dare I say it... bolshy if you have to.