I have had excellent treatment at the Rheumatology clinic for my GCA/PMR for many years.
However, I have recently been having symptoms of W G but all tests came back negative , so no follow up except for my 6 monthly check with my Rheumy in Oct. who will probably discuss the results then. and to give them credit they [ Rheumatoloy clinic ] organised the tests.
I was wondering if I could ask to be referred to the vasculitis clinic without upsetting the Rheumy clinic, is this the done thing ? especially as the W G tests came back negative, but I'm still having some of the symptoms and just wondered if I would be better off being treated at the vasculitis clinic ?
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Hi bowler, I think this is a personal decision that you need to make.
If you are getting good care does that mean you do have confidence in your doctors?
Have you discussed these concerns with them? If you need to chat about the ongoing 'new' symptoms ask your GP to request an expedited appointment or ring the rheumatologist's Secretary to see if a message can be sent directly.
If you have concerns that you are not getting the level of care/expertise you condition requires then again you need to discuss this with your GP as they can help you with a referral to a more specialist consultant. (Do you know where you want to be treated?)
Either way, I don't think you should wait till October if your condition is worsening to discuss your concerns.
Personally, I found a consultant with a specialist interest in vasculitis and asked my GPs for a referral. At the time I was receiving no treatment, I was ANCA+ but had just had an inconclusive biopsy and just waiting in the 'system' for another department to look at me.
If you're genuinely worried you do have WG need to talk to your GP or rheumatologist, you can't afford just to wait and see.
Best wishes.
P.s. not everyone is seen at a specialist vasculitis clinic.
Thank you all for your varied posts, and advice.
Like I said, I have been very happy with my treatment for GCA/PMR in the Rheumatology clinic at Addenbrook's, I was diagnosed aged 54 I'm now 70.
I have never been off steroids in all those years and only managing to get down to 1mg for a very short time, it's been a roller coaster with the meds. ever since.
I obviously don't want to have WG. but all my symptoms seem to point that way hence the tests, but all negative. I just feel that it will be another case of "up the steroids it's your GCA and not WG " so did the upping of the Pred. to a higher dose mask the WG symptoms, who knows ?
Perhaps I could ask for a second opinion, BUT as the tests were all negative not sure what else they can do ? however as I am already being treated at Addenbrook's I understand that the vasculitis clinic there is very good so it's not as though I will have to go to another hospital.
I do find that every time I go to Rheumatology clinic I hardly ever see the same Dr. twice, and they all have their different opinions, but all very nice.
I feel that taking steroids for 16 years have taken their toll, and have masked a lot of my ailments, and caused some.
If you're already at Addenbrooks then definitely ask if you can get a referral. What's the harm in asking, a second opinion is better than one and it'll put your mind at rest.
Good luck.
Useful thread, bowler.
"I do find that every time I go to Rheumatology clinic I hardly ever see the same Dr. twice, and they all have their different opinions, but all very nice."
"Very nice" is nice (hard to achieve, sometimes) but "different opinions". Is this in terms of your original diagnosis e.g. GCA or your treatments? Has anyone "doubted" your original diagnosis? Hence your question of possible WG? I often do wonder how Rheumatologists diagnose certain V condition so firmly when someone is seronegative / almost seronegative..ANCA-wise (but based on what I read so far, seronegative ANCA could still cause some major health disasters!)
It sounds to me you are not quite happy in some ways - that is a GOOD REASON to see someone else. I would. V can be a fatal condition which leads to various complications..Good luck!!!
Hi
I will start at the beginning. I was diagnosed with GCA/PMR aged 54, I'm now 70. However my temporal artery biopsy was negative, but I had already been started on 60mgs of pred.
My symptoms were very bad headaches [ couldn't even put my head on the pillow,] aches and pains, raised inflamatory markers and generaly unwel.
I was slowly tapered down to 1 mg of pred but all symptoms came back. Cut a story, from then on I have been on a roller coaster of medications ever since to try and get me off of steroids to no avail.
It has been these past year 18 months that I felt things were different, not just headaches/aches and the pains of the GCA/PMR but sore crusty nose, bleeding sinus's, pins and needles, ear ache, constant red blood shot eye's, raised ESR CPR. So to give my GP and Rheumatologist credit they sent me for all the tests, although they took an age to get done and to get back the results, which were all negative.
I am convinced that I have had WG or perhaps another form of vasculitis ? [ some have the same symptoms ] BUT due to me being on steroids and was told to up the dose because of the raised ESR/CRP I have probably gone into remission as some of the symptoms have gone, ie, the bleeding sinus's and the red eye, I am once again on a slow reduction of the Pred. so will have to see how things go and will talk it over with the Rheumy at my next appointment.
Sorry for the long post, and thanks for listening, I don't know what we would do without these sites to rant on ?
although my husband is very sympathetic and a good listener he must get fed up with it.
bowler
bowler
I'm often amazed by others people's posts on their symptoms which are almost identical to my own though different people have different V diagnosis. Thank you.