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View Full Version : Does anyone know why Rheumys manages Weggies?



Allisonquast
02-23-2014, 05:55 AM
I am just curious as to why it is rheumatologists that are the docs that manage weggies.

windchime
02-23-2014, 06:29 AM
I am just curious as to why it is rheumatologists that are the docs that manage weggies.

Here is the wikipedia version. Rheumatology - Wikipedia, the free encyclopedia (http://en.wikipedia.org/wiki/Rheumatology)

Allisonquast
02-23-2014, 09:10 AM
Thanks so much Cindy, I guess I could have looked it up myself, seems like vasculitis should be managed by Hematologists.

pberggren1
02-23-2014, 10:13 AM
Most of Wegs cases are probably managed by Rheumys but many others are managed by Pulmys and Nephs as well. My last 2 Wegs docs have been Nephs.

windchime
02-23-2014, 10:20 AM
Thanks so much Cindy, I guess I could have looked it up myself, seems like vasculitis should be managed by Hematologists.

No problem, I just thought it was easier to do that than paraphrase. I'm feeling a little lazy today. :wink1: I'm currently being managed by a pulmonologist only cause he got me first.

Rose
02-23-2014, 09:07 PM
I was initially treated by a Nephrologist. When I complained of a mild rash a few weeks after starting medication that had erupted all over my body I was told "I am a Nephrologist, not a Dermatologisrt" And when I complained about 3 months into my monthly IV Cyclophosphomide treatment of feeling extremely ill and gettiing worse her answer to was "What do you expect, you have a serious disease and on toxic medication". A few weeks later I noticed my urine was a bit darker than usual and was it that the whites of my eyes were showing a tinge of yellow? I was unsure and a bit hesitant to phone her because of previous responses and as I had an appointment coming up in a few days I decided to wait until then to speak to her. At the consultation she went over the recent blood results, checked BP and looked for any signs of swelling. I sort of expected her to tell me something was going on, something would be showing in my blood results but she was sending me on my way telling me all was fine when I asked her " Dont you think I am a bit jaundiced"

To cut a long story short ......I was admitted to hospital within hours, into an isolation ward as I obviously had hepatitis. Turned out to be drug induced hepatitis and my liver enzyme levels were off the board. She was extremely concerned, so much so she was phoning the ward during the night to see how I was doing. She admitted to me she almost killed me. One of the drugs I was initially put on in March had hepatitis as a possible side effect. I developed my rash a few weeks later and she took no notice. By the time I was hospitalized in mid June I had a welt like rash all over my body....a rash that she had been seeing getting worse over almost 3 months. A Dermatilogist was summoned soon after I was admitted to hospital and he took a biopsy. The biopsy results received a week or so later stated that it was caused by an allergic reaction All meds were stopped immediately on admission to hospital but as my liver function improved I recommenced the WG medicine. It took well over a year for my liver enzymes to return to normal.

The Nephrologist I am sure was not monitoring my liver function. Had she been doing so this problem would never have got so serious. She was just focused on her speciality. To me that is why you should be 'managed' by a Rheumatologist. He is experienced in the medicines used in autoimmune disease, he knows their side effects and he knows what to monitor and should there be a problem, he will then refer you to the relevant specialist and that specialist can focus on that specific problem The Rheumatologist should continue to monitor you.

Just my experience...and opinion

Rose

ingemlb
02-23-2014, 11:03 PM
Thanks that makes it very clear Rose. I was told that my main treatment doctor will be the rheumotologist and he would call on other specialusts as required. Sounds like a specialists nightmare when so many parts of the body can be involved.

mishb
02-23-2014, 11:19 PM
The first guy for me was ENT and it was over a 6 months later that I was referred to a Rheumatologist.
I thought it was because of my RA but then realized that the Rheumatologist sees all Autoimmune conditions - RA being one of them, also Lupus etc.
Basically anything to do with inflammation of the joints and or joint pain.
The hematologist was the guy that made sure all of my meds were correct and that everyone was on the same page.

Rose, I'm sorry that you had to go through all of that :crying:

gilders
02-24-2014, 02:35 AM
Most of Wegs cases are probably managed by Rheumys but many others are managed by Pulmys and Nephs as well. My last 2 Wegs docs have been Nephs.

My main Wegs Dr is also a nephrologist. It was when my kidneys failed that probably, in a twist of fate, saved my life as it was the nephrologist that diagnosed WG and in reality saved my life.
He has managed my condition and every relapse/flare for the last 19 years. It was only this latest relapse that I'm currently going through that he also called in a rheumatologist for a second opinion. The reason being this relapse didn't seem to be responding to treatment. Fortunately I think I am turning the corner now and the meds seem to be working.

KimH
02-27-2014, 12:55 AM
I am followed by my rheumatologist but he works with my ENT. My GP is a pulmonalogist and keeps tabs on my lungs by telling my rheumatologist when it is time for scans. My rhuemy had sent me to a nephrologist for an initial consult. My rhuemy is not one of the docs from a major center but I am fortunate that he sends me out for consults and that Dr Lebovics is on the team. Thanks to everyone on here I have found guidance that I feel that I have been on the right track. Would it be correct to say that we may end up by being cared for by the type of Dr that specializes in the area of our body that is the most affected? Sometimes but not always?

marta
02-27-2014, 02:38 AM
Thanks that makes it very clear Rose. I was told that my main treatment doctor will be the rheumotologist and he would call on other specialusts as required. Sounds like a specialists nightmare when so many parts of the body can be involved.

From AARDA (American Autoimmune Related Disease Association AARDA (http://www.aarda.org)) "Unlike cancer, which is an umbrella category for a range of diseases (leukemia, breast cancer, prostate cancer, non-Hodgkin’s lymphoma, et al.), autoimmunity has yet to be embraced by the medical community (and the public) as a category of disease. Because these diseases cross the different medical specialties, such as rheumatology, endocrinology, hematology, neurology, cardiology, gastroenterology, and dermatology, and because such specialties usually focus on singular diseases within their particular category, there has been virtually no general focus on autoimmunity as the underlying cause. It has been estimated that autoimmune diseases cost $86 billion per year."

and

"Autoimmune Disease …faces critical obstacles in diagnosis and treatment.
• Symptoms cross many specialties and can affect all body organs.
• Medical education provides minimal learning about autoimmune disease.
• Specialists are generally unaware of interrelationships among the different autoimmune diseases or advances in treatment outside their own specialty area.
• Initial symptoms are often intermittent and unspecific until the disease becomes acute.
• Research is generally disease-specific and limited in scope. More information-sharing and crossover among research projects on different autoimmune diseases is needed."

This is why I'm doing PJ Day... this is a huge problem and someone other than a single organization in the US needs to address it. Who better than people who understand the problem?
Wear your PJ's Friday and let's show them all we're not taking it anymore.

BTW Alisson, it was a total pleasure meeting you and Colin this month.
Three Weggies in one room.
That was pretty cool from my perspective. Rini was totally stoked too.
I look forward to more meetings and some sick tree skiing next year. :scared:

pberggren1
02-27-2014, 08:09 AM
Every day is PJ day for me.......:flapper:

ingemlb
02-28-2014, 11:39 AM
yes that is what I am learning. Everyone works in a box with blinkers on :( And you are right ... there ought to be an Autoimmune Disease Specialist. There is a LOT of research into Autoimmune disease but it's not hitting the medical professionals not even hitting Universities from what I gather. My Rheumatologist is also an Immunologist. Does that make him closer to the area?
I am just happy that each of the specialists I saw got me with the diagnosis of Wegener's already in place and that every one of them seemed to have come across someone with Wegener's albeit at the rate of one a year at most. My Gastroenterologist seemed totally not worried about the state of my bowels or my stomach ulcers but shrugged her shoulders and said "it's All Wegener's" so I have to hope that the Rheumatologist has chosen the best treatment and that when I get all these organs retested in 6 month's time there is some improvement.
Yes ... me too Phil. Every day is PJ day but only my husband gets to see them lol. I am still not game to venture forth outside at this stage. Inge.

Allisonquast
03-02-2014, 04:18 PM
From AARDA (American Autoimmune Related Disease Association AARDA (http://www.aarda.org)) "Unlike cancer, which is an umbrella category for a range of diseases (leukemia, breast cancer, prostate cancer, non-Hodgkin’s lymphoma, et al.), autoimmunity has yet to be embraced by the medical community (and the public) as a category of disease. Because these diseases cross the different medical specialties, such as rheumatology, endocrinology, hematology, neurology, cardiology, gastroenterology, and dermatology, and because such specialties usually focus on singular diseases within their particular category, there has been virtually no general focus on autoimmunity as the underlying cause. It has been estimated that autoimmune diseases cost $86 billion per year."

and

"Autoimmune Disease …faces critical obstacles in diagnosis and treatment.
• Symptoms cross many specialties and can affect all body organs.
• Medical education provides minimal learning about autoimmune disease.
• Specialists are generally unaware of interrelationships among the different autoimmune diseases or advances in treatment outside their own specialty area.
• Initial symptoms are often intermittent and unspecific until the disease becomes acute.
• Research is generally disease-specific and limited in scope. More information-sharing and crossover among research projects on different autoimmune diseases is needed."

This is why I'm doing PJ Day... this is a huge problem and someone other than a single organization in the US needs to address it. Who better than people who understand the problem?
Wear your PJ's Friday and let's show them all we're not taking it anymore.

BTW Alisson, it was a total pleasure meeting you and Colin this month.
Three Weggies in one room.
That was pretty cool from my perspective. Rini was totally stoked too.
I look forward to more meetings and some sick tree skiing next year. :scared:


We we loved meeting you all too and look forward to future visits ! You too Riny,we may just come to Indianapolis! Hugs to you both !

RudiK
03-06-2014, 01:38 PM
My primary WG doc is a Nephrologist since the WG severely damaged my kidneys, I also see a Neurologist due to sever nerve damage in my feet, legs and finger tips. My PCP is an Internist, she is also the one that recognized the illness after I "wandered for one year in the wildernist".

Lilly
04-29-2014, 01:15 AM
In my case, 24 yrs ago, it was because the main issue I was having was arthritis. It was moving from place to place on my body at first. But right before I was diagnosed, I had arthritis in every joint of my body. A lot of Autoimmune diseases have arthritis as a beginning symptom, so rheumatologists usually have knowledge of a lot of autoimmune diseases. So other Drs, like EENT's, Pulmonaries, and kidney drs. usually ask them to help diagnose their pt. if they are experiencing arthritis, along with other problems. That's how it happened to me. :-)