Referral to a vasculitis clinic

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.

If you've had excellent treatment for many years why would you want to change? There's a lot to be said for doctors who actually know you (as long as they're good doctors!) and can see any changes that you yourself might not be aware of.

Hi bowler, I am treated by the vasculitis clinic at Addy's and the Rheumatology dept for arthritis. Quite honestly I have found a massive difference between the two. Vasculitis clinic is always available to talk to, whether it be urgent like a relapse, or just a question you might need an answer to.

As you probably know, the specialist Rheumatology nurses take days, and sometimes a week to call back.

You have the right to change clinics - it happens all the time. Do yourself a favour and get referred asap. Horses for courses?

Good luck.

Hi Bowler im going through the same thing and i did ask to be referred to addenbrooks i took all my blood results and they seemed to be in agreement that wg was in remission,which i dont understand because of the pain im in, but did say it was damaged already done by the illness and suggested a pain clinic good luck what ever you decide .

Hi tracey65

what were your symptoms of WG ?

thanks bowler

aches pains swelling in joints i had kidney failure but had no symptoms for that it was only because i had a biopsy they discovered and diagnosed wg.it took 8 yrs for a diagnosis at one stage i was unable to walk bath etc my hands seized up they thought it was reuhmatoid at first so yes over the yrs i have made progress but i still dont feel 100% and they think i may have a touch of osteo arthritis.also nasal problems but nothing major.hope this helps

Thanks for your reply

My symptoms are crusty sore nose, red eyes, aches and pains, headache, pins and needles in the feet, however my GCA/PMR

causes headache's and aches and pains, so it's probably hard to get a diagnosis. Perhaps I have had WG along with GCA/PMR for a long time but taking steroids has masked it ?

Hi tracey65

I forgot to say in my last post , how awful it must have been for you all those 8 years waiting for a diagnosis, and how you must have suffered. Once diagnosed was you treated with steroids ?

I have stage 3 kidney disease, so I'm hoping that doesn't get any worse.

best wishes

bowler

HI i was treated with steroids and all the other drugs going even had rituximab my kidneys are fine now

I agree with bowler. But this could be sadly common..some are unlucky enough to die..The longer the inflammation went on, the cumulative damage over the "years" may become permanent. That's how I look at it myself. Unfortunately, damages on small vessels may not be so easy to detect, at times, it would never get recognised. Biopsies may come back eternally negative once immunosuppression starts..(?) But I digress..!!

Hi they did say that is was damage already done and would have to live with it but didnt ask what damage so you think its the vessels that are damaged thanks

Yes, I believe so. It's the damage in the vessels (areas of narrowing ) as vessels tend to swell up with inflammation. Deadly stuff! Thank you.

Bowler

My advice is don't worry about hurting doctors feeling. You are the important one here not their egos! I had that same opinion and trusted my respiratory specialist for 10 years who was treating me for Churg Strauss Syndrome. Yes he saved my life but forgot to check my heart after all the ANCA tests being consistently negative. I now have severe cardiomyopathy linked to Churg Strauss Syndrome.

Get as many second opinions you feel is necessary. I take no prisoners now especially where the NHS is concerned.

Oh and I forgot to mention that during most of this time I was supposedly in remission. I'm a believer that even when remission occurs inflammation happens otherwise how could I have developed cardiomyopathy? No family heart problems and no coronary disease.

There is a post titled 'Why use a Rheumatologist' which got a 'popular' rating with lots of for and against responses.

Hi Bowler,

You may have had excellent treatment for your PMR/ GCA but that doesn't mean that they will be able to diagnose and treat WG as well.

When you say the tests were negative do you mean the ANCA blood test as it isn't always positive in WG.

I think the fact that you are asking the question speaks volumes. Sometimes a fresh pair of eyes is just what is needed, as you already attend Addenbrookes then there will be no problem with sharing of tests results etc.

Sometimes Vasculitis is a clinical diagnosis and you need to see someone with a lot of experience who has the confidence to make that diagnosis. They may just have something to suggest for the PMR/ GCA as well, 16 yrs on steroids is a very long time!

Good luck with it all.

Hello keyes

I had 2 ANCA tests both negative, also nose biopsy also negative, I have frequent bulging red eyes, but a thorough eye test at Addenbrooks was all OK. thyroid tests also OK.

I have tried Methotrexate and Azathioprine but had bad reaction to those. I was thinking of asking for a test to see if my adrenal glands are still working after all these years on steroids?

I'm not a forceful person and just go along with the tide so to speak, BUT at my next appointment I am going to be asking a lot more questions, and as you say 16 years on steroids is a long time, also due to a few other ailments I have it's all beginning to get me down a bit.

bowler