Hi,
Dose anyone have Rheumatoid vasculitis? What were Your first symptoms? Did You have RA first and then later develop vasculitis?
Has anyone had vasculitis before the development of RA?
Thanks Kat
That would be me. It is very serious. Mine started with my skin and my eyes. It seems to be under control, better than my RA is.
What symptoms are you having?
I started with uveitis and am testing high pos for RA. A few weeks ago I was dx with ischemic colitis which causes the blood to stop flowing into the colon. Then the cells and tussue die and it causes colitis and ulcers. This happens in elderly patents with vasscular heart disease. That's not me. It can also be caused by vasculitis and blood cloting. My dr started me on MTX last week finaly.
My sis was dx with RA a few months ago and she already needs knee replacments and she has also developed Rheumatoid nodules. It is happening so fast in her that I am very worried.
Kat, it does happen really fast in some people and not others. Just because it is with your sister, doesn't mean it will with you.
Did they do a colonoscopy on you? Is that how they reached they diagnosis? If not, maybe they should because that's what they did when they suspected it in my bowels. I didn't have it there, thank goodness. I did have a bacterial infection, (which they could have found with a simple blood test).
It is very scary what you seem to be experiencing. Keep forcing answers and try for the best treatment you can get. The biologics are supposed to be helpful for keeping this under control.
Also, if you start to have symptoms that worry you, get into the doctor right away. You need to let any doctor, ER, etc. know that they suspect both RA and vasculitis. That means probably more tests than you need, but it also means that they can head off a serious problem if it starts to develop.
Vasculitis was my first symptom. It happened with my eyes. They thought I had temporal artertis, which you are not supposed to get unless you are in your 70s. I couldn't see and was having extremely weird headaches like the top of my head was cold and split and half. So they did a temporal biopsy which came out clean. That doesn't mean I still don't have it. But they also put me on really high dosages of prednisone (60 mg) and MTX (25 mg) right away. That might have stopped it.
You want to keep an eye on your Sed rate whenever they do your blood work. That's one of the indicators for inflammation. It can be high with RA, but also with vasculitis.
Read up on vasculitis at the John Hopkins and Mayo Clinic web sites. They will give you a good over view so you can ask your doctor the right questions. If your doctor doesn't seem to know how to handle this, then get yourself to one with more experience.
I also think you need a good gasterologinist on your team.
All of this stuff can attack pretty quickly in some people. But you get as informed as possible and your sister too. Maybe you can help each other through this.
Please keep us informed.
Hey Deanna!
Is this the same Deanna from 4RA Talk? This is Kathy we have talked before on the other site. I did not know that You also have vasculitis. So nice to talk to You again.
Yes they did do a colonoscopy 5 days later it should have been done within 24 hours and this is how they found the Ischemic colitis but they did not do an ANGIOGRAPHY which would have shown vasculitis if it was present.
I told the Dr about the Uveitis so he was checking for Crohn's.
It all stated with my eye's as the first symptom and I also have Discoid lupus and Psoriasis but I have had these for many years all sle lupus test are neg with a weak pos ANA.
As You know my sis is also Schizophrenic so I can't even explain to her how serious her RA illness is. At this point she has NO clue and is in denial about the Dr's recamendation for knee replacements. I worrie that she won't take her meds it's so very hard with her.
I had told You that my Opth wanted me on MTX and RD wanted to wait for more symptoms, well now because of the colitis the RD is finally treating me.
I am sorry to here about Your eye's I have done alot of research into the eye disease so I have a good idea what You went through. How are Your eye's now? Also did the vasculitis happen before Your DX of RA?
Thanks again and I hope to hear from You soon.
P.S. how is Your daughter doing I hope she is well
Kathy
THis crap never ends does it? We just get more dx.
I have IBS, and sometimes it is terrible so I really feel for you I really do. I think I have the shingles again, yes again.......anyway, I haev the symptoms for the vasculitis but I guess I must not have it cause I have had all the tests...at least I think so. I always forget to tell the ER Dr. I have IBS. Been hospitalized 2 times for stomack and bowel trouble, guess I had better make an appt,. with my internist.
This site helps in that it makes you think and remember to do things and points things out that you think are not important but really are.
jode
Kathy,
Yes, I'm the same Deanna for 4ratalk. You have a lot going on. However, I believe Enbrel and Remicade are both used to treat Chrohn's and Psoriasis.
I forgot that you sister is Schizophrenic. It is possible to get medical power of attorney over her if you cannot get her treated any other way. That would be an awfully big step and a real stressor. You may be able to get her nurses that come by and help her take the medicines and get her to doctor's. You would need to check with whatever mental services she is being provided. But they won't even talk to you unless your sister has signed some kind of permission.
It all comes down to how serious her condition is and what you can get her do. That's why the only way you may be able to help her is power of attorney or getting her in a 24 hour Long Term Care facility that will also deal with her medical problems. That's a real tough one.
I've faced those decisions with my daughter. But being bipolar is very different than being Schizophrenic because my daughter has a good sense of reality and my understanding is that Schizophrenics don't always have this unless their meds are under good control.
I have to be real cautious with my eyes. I get checkups every four months with occassional trips in to check for inflammation. Some years are better than others. I can't read as much as I would like because it hurts my eyes and I can't be on the computer for long periods any more. Those of two of my favorite things. For a period of several months, I couldn't hardly see at all. But that turned out to be more Sjogren's. If I suspect anything, the eye doctor insists that I come in right away. They keep a close "eye" on the optic nerve. I also have glaucoma, so the eye pressure really important. I've also had bleeding from the eyes, which scared the hell out of me and my daughter.
They did all the tests then too and they came back ok. But I know there's still a problem because something is always going on.
And, the problem with my eyes was the first thing. When I was looking on my medical records, they put down vasculitis long before they put down RA.
Jody,
I wanted to answer your question separately. With all those problems, you definitely want to stay on top of it. For instance, I had to go to the ER because of a stomach virus. I was sick so suddenly. So, they did an x-ray to make sure nothing else was going on.
Anyone who takes a lot of pain killers has to watch for the possibility of stomach ulcers, etc. These can be life threatening and are one of the things that can cause death in RA patients. So, you are doing the right thing in checking it out.
Also, Jody, are you being treated for the shingles. It can be very bad if it gets in the eyes as it can cause blindness. It seems like you have a lot going on and each thing needs to be addressed. I think you definitely need to keep seeing the doctors until these things are all under control.
Boy, just when you think you've had enough, they pile on more.
Thankyou Deanna, I did nto realize that about the pain meds, take a half tab every 4 hrs. to keep my pain at bay.
I have to make an appt. with my internist yet, my daughters' car broke down so I have been running her to get it fixed, another 0 dollars! Regardless, I will have the possible shingles checked out, didn;t know it could make you go blind, but it makes sense that it would. Hopefully it is just stress and a pain in the side from my muscles........
It is always something it seems and it doesn't seem to get much easier, just more complicated as the years go by. At least my daughter is healthy! *knock on wood*
jode
Deanna.
I want to thank You for Your extreamly helpfull information. I am leaving You a few links to some eye disease sites. You probably already know all of this but I would like to help if I can.
http://www.uveitis.org/patient/articles/articles/background. html
At this site You can ask the DR any question regarding Your eye's . Not just uveitis. He is also a rheumatologist . He is amazing.
http://forums.uveitis.org/index.php?pid=view_forums
Thanks again Kathy