View Full Version : Can an Immunologist treat and oversee Wegs?

Col 23
05-07-2010, 05:40 AM
Hi. Just wondering can an Immunologist treat and oversee Wed?
Col 23

05-07-2010, 05:42 AM
I would say no, because they really don't know much about Wegeners disease. I know one personally and he was not comfortable at all and sent me to a Rheumatologist who knew Wegeners disease.

Col 23
05-07-2010, 05:48 AM
Hi Elephant
thanks for getting back to me so quickly. Having a few problems with getting sorted out. I know Im having a flare as my eye has pressure and the eye doc advised me he can do no more and I must continue to be treated systemicly for the eye. I continue with steriod drops each day. Going to the docs tomorrow. Some pain in chest and feet are begining to hurt again. I feel so frustrated with all doctors at the moment. Had a lot of nausea and some vomiting this week, felt really low at times and just kept distracting myself that why I havent posted for a few days.

05-07-2010, 06:27 AM
In the U.S., immunologists mainly treat allergies and asthma. Rheumotologists treat autoimmune diseases like WG. Most rheumys can't treat it well though as it's so unusual, and most have never seen any of us!

05-07-2010, 08:01 AM
hi col23
my consult is an immunoligists but has research and treated wg for over ten yrs
i have confidence in the way he treats me because i dont make life easy for him we often think i moving forward and them wham i do something to prove him wrong just like having these blood clots in my lungs and its usually when hes on holiday has happened the last three times he say he will have to start taking me with him !!
i dont have a rheumotologist which i actually see but wg consult ,consults one about my case
i can understand what you mean about so many docs
when i was in hospital last week it became so confusing who needed to be notified about what ENT KIDNEY IMMINOLOGY GP an so it goes on
even to whos ward i should be on i ended up in a room on would you believe infectious dieases mainly because they knew me from when i had cellultus in leg but because it was the best place to be as immuine compromised and the where able to barrier nurse on the ward felt isolate because the room was down a corridor on its own but as they said better safe than sorry
its a bit of a joke with my admin supervisor about how many (OLIGIST) i see she things im just working through the alphabet . she said she would be worried if i get to z zooliigst
but joking a part it was my immunologist who dxt wg and has given me support and made me believe that it was not just in my head which other dr had made me feel that way
hope that make sense better stop now i think DEEx
ps this weeks new oligist is heamotologist because of me starting warfarin :)

05-07-2010, 10:26 AM
Col, I am so sorry you are feeling so bad. If your having chest pain, you really need to get it checked out. Col you know your body, need to tell the doctors "Loud and Clear" how you are feeling. I hope you get some relief fast!

05-07-2010, 11:28 AM
Col, my alarms are going off with your symptoms. I know you're feeling overwhelmed and sick of all these doctors and the whole mess. But you've got to get yourself to a doc asap to be thoroughly checked out. I agree with the others that you need a rheumy (and one who really knows Wegs).

If you can't get in to a proper doc immediately, I suggest you go to the ER and get a chest CT. Your lungs may be bleeding or you may have a clot. Let them know that Weggies are prone to blood clots-- they won't know that, and they have to do a special type of CT to look for clots.

05-07-2010, 11:30 AM
Col, I agree with Sangye.

05-07-2010, 03:50 PM
i agree with them both espeicallly in the blood clot department get it checked to scary but a great releif when given the right treatment for DEEx

05-07-2010, 08:56 PM
Good evening Col23,
You really are not having a good run at the moment, hang in there, I hope you get on well at the DRs tomorrow and things will start to improve soon.

Col 23
05-08-2010, 03:01 AM
Hi again
Ive been to the my GP today. I didnt go to the Rheumy on Wednesday couldnt do it. Have another appointment on the 19th. I did have a CT scan and bone density scan about 2 weeks ago. No body has rung to say all okay or not but thats normal so I take it that no news is good news. I wasnt able to use my appointment time to talk to the Rhuemy " as they dont do that". Just too busy to care or have the time to get back to you. Anyway I think whats happened because I just gave up and started to self medicate by reducing the pred from 25 to 20 I started having symptons again. However Great news my bloods have come back okay just some mild macrocytosis and borderline lymphocoytois. Gotta get the B12 into me. Doc has advised me to keep appointment on the 19th of this month with Rheumy and I will if I can. Upped antidepressant by 50mg. I told him that I was tapering and he advised me to now start going down by 2.5 instead of 5mg for a month and to do it very slowly as advised on this forum. So slowly I will go, will be impatient by I will do. Doc has advised me to be very careful I dont undo the last 6months of treatment. I still have the pressure around the right eye but I will see how it goes. I dont think there is anything else that can be done. Rest, go with flow and see how I go. ( I love my little rhymes). Thank you all for your responses, they are very much appreciated when I loose all hope and get abit over anxious, depressed and agitated. ( I hate the side effects of pred as we all do.) So I feel a little better knowing the FBC. (Full Blood Count). Got a weird dizzy head today, not sure what it is, blood pressure goes low when I usually have these little spin outs. Does anyone else get that.
By the way I brought these big sunnies the other day so no one could see me..Ha har.
Quote for the day. Bad is good when worse comes along.
cheers Col 23

05-08-2010, 03:52 AM
Col 23 ~ DO NOT self-medicate! There are some on this forum with sufficient experience with their disease and treatment to do this (though I suspect even they are circumspect when they do it). Steroids especially aren't to mess with because you can screw up your body's ability to produce the steroid on its own. You may be right, too, about inducing a flare. Please learn from this.

I don't know if I understood why the rheumatologist wouldn't talk with you. Was it because your appointment was with the GP and because you missed the Wednesday appointment with your rheumatologist? Doctors are a limited resource, and missing appointments (even for good reasons like you were hospitalized, as was the case with one weggie recently....!) wastes their time, deprives another patient a chance to see the doctor at that time, and generally goes over poorly. Some will refuse to see you in future (I know of this happening- it hasn't happened to me). If you weren't able to make it Wednesday, a phone call to the rheumatologist the day before or as early as possible Wednesday might have saved you grief, opened the door today.

I don't mean to be rough on you, Col 23, but you are dealing with a rough enough spell right now without hurting yourself.

Col 23
05-08-2010, 04:07 AM
Hi Doug, I hear you. I tried since Friday to talk to my Rheumy, promised to return calls, left me high and dry over the weekend and yes I did ring and cancel the appointment for various reasons and I did go to my GP on Monday but was too sick and walked out and had to make another appointment for today. If I told the full story you would not believe. I always keep appointmenst and call. I have expectations of them as well and now I have none. Lost faith in the whole system. However decided to put my faith in my local GP and also keep exploring for new Rheumy . My eye doc suggested the immunologist so thats why I posted about that. Yes I know I was nbad but I have decide anyway Im tapering as I will never ever go on Pred again. They will have to find something else it is not agreeing with me at all..
cheers Co 23

05-08-2010, 05:06 AM
Col, I think that is great that you are looking for a Rhuemy that you will feel comfortable with. That is so important, hope you find one soon!

Col 23
05-08-2010, 05:13 AM
Thanks Elephant
I think I will even speak to the Rheumy and tell her that I feel we are not connecting. Scary stuff but Im beyond massaging peoples egos.
cheers Col 23

Col 23
05-08-2010, 05:14 AM
Another thought I wonder if this is the Pred talking....
Col 23

05-08-2010, 05:56 AM
Col, I think it's the pred talking. You'll be able to tell how much it contributes to depression next year when you look back on it, but not when you're in it. The best you can do is keep moving forward. Take little steps each day-- look up a few doc names, etc... to keep yourself from sinking into despair. There is always a little bit of hope-- a little light. If you focus on it you'll pull yourself through this. We're here to remind you of it, too. I've had so many dark times and lost all but the smallest sliver of hope. I understand.

Definitely don't waste a minute with a doc who won't let you talk. You need and deserve better than that.

05-08-2010, 06:56 PM
Hey Col, sory you're going through this mess. I too think it's the Pred talking. It's the best of drugs and the worst of drugs at the same time :-) Keep plugging away and you'll get there.

05-09-2010, 07:23 AM
Way to go, Col! As difficult as it is to motivate oneself during the toughest parts of treatment (drugs and disease take their toll...!), you are doing the right thing for the single most important person in this equation, you the patient. Perhaps the rheumy had a bad day. Well, perhaps the patient has weeks of these bad days, and needs to talk about things that affect directly how she feels...! I repeat, good for you! I hope you find a doctor you can have discussions with because this is, truly, one of the biggies in getting well, confidence in the docotrs.

Col 23
05-10-2010, 10:55 AM
Thanks everyone for your feedback. Feeling much better although very tired but I think that just the meds. My eye is still a problem and I can feel some pressure in my nose. However as my bloods came back good I will just have to rely on the meds to mend it all.
Ill just keep plugging away on my good days and do. Ill see how the Rheumy is when I go next week and I will have a chat!!!
I just want to get back to my happy positive self as we all do.
cheers Col 23

05-10-2010, 03:01 PM
Col23, an immunologist is not able to treat you, even though it would seem that they should. They deal mainly with clinical studies (blood work up) and transplants.. A rheumy is realy the only one who should be your main wegs doc.

05-10-2010, 08:58 PM
Well I guess it depends on the Immunologist's background as with everything. For example, not every Rheumy can treat Wegs but those that have experience and training can. Same with Immunologists. My main Weggie doc is an Immunologist. Of course, I could be talking out my *** as Immunologists here on Oz might be different. To be honest, we're all 'different' over here :-)

Col 23
05-11-2010, 04:29 PM
Thanks everyone for your feedback.
Col 23

05-11-2010, 08:42 PM
Andrew my main WG doc is an IMMUNOLOGIST the only problem is hes always on hoilday when i have a flare said last week id better start going with hiom :) DEE x

05-13-2010, 02:07 AM
Ah you foreigners, you always get it right LOL. Unfortunately Immunologists in Canada and US are relegated mostly to lab work with some exceptions.

05-14-2010, 04:05 AM
Well I guess it depends on the Immunologist's background as with everything. For example, not every Rheumy can treat Wegs but those that have experience and training can. Same with Immunologists. My main Weggie doc is an Immunologist. Of course, I could be talking out my *** as Immunologists here on Oz might be different. To be honest, we're all 'different' over here :-)

You stand upside down, sorta, compared to how we are oriented up here in the Northern Latitudes. And your toilets flush backwards. Gad! My cat would go crazy.

would have gone crazy!]

05-15-2010, 04:06 AM
Ha ha ha ha ha ROFLOL

05-21-2010, 07:39 AM
I see a renal doctor, not a rheumotologist or immunologist.

05-31-2010, 03:36 PM

If you can you need to see a specialist & a rheumatologist. I see a specialist & a rheumatologist and they confer over my treatment. This is a new arrangement as I did not find a speacialist until April 2010. I am blessed with a wonderful rheuamtologist who is very concerned about my case. He and his associates in their practice have informed me that not only do I get my doc but I get all three. My wife has psoriatic arthritis and sees one of the other rheumy's in the clinic I use and both are top notch. Go to the vasculitis foundation website for a list of recommended physicians.

All the best,

05-31-2010, 03:49 PM

"...Go to the vasculitis foundation website for a list of recommended physicians...."WGREBEL

Here that website link is: Front Page | Vasculitis Foundation (http://vasculitisfoundation.org/)

05-31-2010, 06:54 PM
The main docs I see are from the Renal department, but they have a huge involvement in vasculitis research in collaboration with the Rheumatologists so I would not dismiss the involvement of docs from other departments.