I usually post on the PMR/GCA site as that's what I have. [ 16 years ] However you may recall me posting on here last year Re also having symptoms of WG, but all tests were negative, I was on around 25gs Pred at the time so that probably didn't help with the test results ? Since then I reduced my dose and got to 10mgs. a few weeks ago, and things seemed better. However after being on 10 mgs for a couple of weeks I started to have a flare with really bad headache, lethargy, sore nose, bleeding sinus, [not heavy just spotting,] and a hoarse throat, and generally feel unwell, [ last month my ESR 21 CRP 11] so not too high, Now was/is this WG or my GCA or both ?
I reported this to my Dr as I wanted it to go on my file. I cant see that he would send me for tests again so soon, especially as it was only 6 months since I had them, and all negative, so I didn't even ask for that same reason, I am now back on 30 mgs Pred. I have had another blood test [ ESR/CRP ] and waiting for the results of that. I feel like I'm losing the plot and even shed a tear in the surgery, not usually like me as I have a good sense of humour.
Thanks for listening
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bowler
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You would not be the first person to be diagnosed with GCA and then at a later date diagnosed with WG (GPA) Bowler. I will get John to write a reply for you later today but he is in the middle of a writing a consultation document at the moment regarding a drug for treating Large Vessel Vasculitis and the dead line is tomorrow.
But we will get back to you
Susan
Hi Bowler,
I have been following your saga on here. I think part of the problem is that prednisolone effectively masks symptoms and blood results making a diagnosis more challenging. The fact that you have had GCA for some considerable time won't be helping.
I know that you have been seen at Addenbrookes but by Rheumatology, not the Vasculitis Clinic. I wonder if the only way to get a definitive answer is to ask for a referral to the Vasculitis Clinic at Addenbrookes headed by Dr David Jayne who is a nephrologist, not a Rheumatologist.
Do you think your GP would facilitate a referral? It may be an idea to wean your prednisolone back down before the appt in order for a clearer clinical picture to emerge.
I suppose I could ask for a referral. I really don't know why Rheumatology at Addenbrook's didn't refer me to the Vasculitis clinic the last time I had this flare, and suspected WG, or don't they share these things?
I live in a small village and had the same Dr's [ man and wife ] for 28 years, they retired 2 years ago and since then the surgery has been run by Locum's so never see the same Dr. for continuity, [ the same for Rheumatology I never see the same one and they all differ with their treatment ] the Dr. at our surgery who did send me for all the tests last year was so very good, but alas he left.
I also have several other health issues, stage 3 kidney disease, gall stones, and Bowen's disease, which has reared it's ugly head again, I recently had another biopsy for that, and a call from Addenbrooks yesterday said that it is positive again, so waiting to hear what the next plan of treatment is, no
wonder I'm losing the plot with it all,
I did have a urine infection before this last flare which I thought may have caused the flare ?
Bowler, you aren't going on, you have very good reason to be totally fed up with your symptoms and the situation.
I would hazard a guess that the Rheumatology Dept at Addenbrookes feel they are as qualified as the Vasculitis Clinic to diagnose and then treat WG which is why you weren't referred on. You may have your own views on that!
Do they know the cause of your stage 3 kidney disease and is it definitely nothing to do with an underlying Vasculitic process?
I think if you want clarity around this then you need a referral to the person that can provide that. No Consultant is always 100% right but I think it's true to say that some are better than others. I would think about requesting another referral.
I think my CKD [stage 3b ] could be due to hypertension, or long term use of steroids ? I was told that I wouldn't be referred until I got to stage 4.
I understand what you mean re no consultant is 100% so perhaps I should accept what I have, and I cant really fault Addenbrook's over the 16 years, they have been excellent and done all the tests required. I just need to get out of this depression which isn't helping.
Thank God for the Pred I know I call it the "Devils drug," but it's the only thing that does the trick. I have tried Methotrexate and Azathioprin but both gave me bad side effects.
It's 5 am. and I have been up since 3 due to the higher dose of pred. I have made a steak pudding ready to put in the slow cooker.
The need for a definitive diagnosis and how far we push things is a very personal choice. Reading between the lines the fact that you are asking for advice and people's experiences indicate to me that you still have unanswered questions.
I have been on the multi disciplinary merry go round for 3.5 yrs. I was treated and then my illness was labelled psychosomatic. I weaned myself off prednisolone, which was effectively masking my symptoms, and have recently started biologic drugs ( after making a formal complaint about my care ) which are making a difference.
There was a lot of heartache, travelling around the country seeing different specialists and angst along the way.
My bottom line was a need to know, I said to my GP if I could live with my symptoms I would do but they were becoming intolerable.
You wouldn't have anything to lose but perhaps much to gain with a Vasculitis Clinic referral.
I seem to remember on some of your older posts that you travelled down from Scotland to Addenbrook's
Like you say it's the need to know although most Vasculitis problems are treated with Pred. [ but nice to know which one we have,] however the Pred. helps but it doesn't really cure it.
I had a call from the nurse practitioner this morning re my b/tests, ESR 25 CRP 11 White blood cells slightly raised at 12.6 so still some inflammation, was told to stay on 25mgs Pred. for a while.
Kidney function 40. raised Creatinine 115 which is about normal for me with my CKD.
other result abnormalities I wont bother you with.
I did ask her about a referral to the vasculitis clinic [she obviously cant refer me ] but she did say for me to write down everything I wanted to ask/say when I next go to rheumatology in March and ask them about being referred to the Vasculitis clinic, as she said there's no arm in asking, hopefully by then I will be on a lower dose of Pred.
GCA is one of the few variants of Vasculitis where the mainstay of treatment is prednisolone, most other types are treated with other immunosuppressants.
As you say no harm in asking for a referral, they may have a few suggestions for the GCA as well.
I may be wrong - but the current procedure in England is maybe still that consultants can't do sideways referrals any more. It certainly was a few years ago and I can't imagine it has been put back to how it was. It is to do with the funding - the consultant should refer back to the GP who then refers to the other team. It's crackers and time wasting but I won't get into the politics. If the consultant believes he has the answers - he isn't going to refer back and have to admit he doesn't really know is he?
If you are on pred that is enough to raise the white cell count - you cannot rely on that as an indicator of inflammation. Though you should have an idea from the ESR/CRP if they are up compared with your own personal normal.
I did have a problem [ referrals ] when the Rheumatologist had to write to my GP to get me referred to the ENT dept., for a nose biopsy re HIS investigation of WG yet he [ the Rheumatologist ] was able to refer me to have a head scan, all in the same hospital, crazy, no wonder it takes weeks for investigations.
My Inflammatory markers have never been that high even when diagnosed with GCA my ESR was 36. but I sure know when I'm having a flare even on low test result, I often wonder if a very, very high ESR rate would result in worse symptoms?
Totally depends on the person. There are doctors who claim that a higher ESR/CRP is more indicative of GCA - but there are still 20% of people with GCA who have normal blood markers - and that high values are suggestive of a long prognosis with PMR. My ESR has, once, hit the dizzy heights of 7. It is usually 4. But I have now had PMR for 11 years and the rheumatologist here shares my opinion that I have GCA in thoracic arteries, given some of the presenting symptoms (the ones I didn't make a fuss about because in those days I didn't know any better!).
Having a diagnostic procedure like a scan can be requested by any consultant within the hospital or at whichever hospital provides the service for them. The difference is the referral from primary to secondary care. It is utterly daft - and a few hospitals have the gumption to form multi-disciplinary teams to be able to avoid the problem to some extent. But it still requires that you see a consultant who is part of that team - so if you see another one, they can't/won't refer. In the old days you just referred sideways...
You do seem to be going through it - I know many of us totally empthathize with your frustration with the medical profession ( and doing housework in the middle of the night due to Pred). I find your post interesting as about a year prior to my GCA being diagnosed I had cauterisation to my nose for a bleeding blood vessel. It had bleed 13 times but was more a stab in the dark by ENT who thought the area looked friable rather than bleeding. Since then I have almost lost my sense of smell and from time ttime get the taste of blood in the back of my throat. I have also had dental abscesses, and supposedly needed root canals refilled, along with tinnitus. ......... I guess all these things just need a watching brief, but it sometimes feels as if it is our own learnt expertise through this site and Vasculitis UK that join up the dots . Hope you get sorted soon - best wishes Maxine
These sites are a God send and I have learnt a great deal through them, I'd never heard of WG. like you say, we learn through the help and knowledge of this site and join up the dots, and put 2 and 2 together, although it's not a good thing to self diagnose, but it does help.
I had to have biopsy done from my nose, which wasn't a good result as the surgeon didn't take enough tissue, I also have a problem with smell, or lack of it, I get tinnitus and ear ache, and a hoarse throat but I think they can be symptom's of WG which I call the " Wicked Granny "
Sorry to hear about your dental abscesses, very painful,
Hi and sorry for your troubles. Just to say I did get a referral to ENT in a different trust via my rheumatologist in Kent using the 2 week rule as he knows my GP practice is not good so it is possible.
He was suspecting something sinister - luckily I got the all clear yesterday.
Hello Bowler, I so feel for you and I do understand that you feel poorly and afraid. I have decided not to tell you about my journey through misdiagnosis and mal treatment of this disease. But I want you to know that I am still alive regardless and am off the preds and touch wood will survive as you will too. lots of love and support She x
I suppose it's the not knowing, but I will have a talk with my Rheumy at my next appointment for my GCA, that's not till March. I have several other health problems going on at the moment, and several hospital appointments coming up for those, so that doesn't help. Perhaps one day I will be off the Pred. but after taking them for 16 years I doubt it, I can only dream.
Hi, I just feel that you are not getting the best advice. I am being treated at a clinic specialising in vasculitis. At last after a challenge to my adrenal glands for steroid production my level was ok, so after years on steroids my own adrenals had not gone awol my disease seems to be in remission just on mycophenolate daily 1000mgs/day. I hope you are in the best hands and please ignore me if you sure....every one of us do have a different path to negotiate and hopefully get the best treatment and Doctors. Take care, She x
I have said many times that I'm not sure why GCA is treated by a Rheumatologist, although they have been very good and have given me all the tests necessary, but all being negative, and as I was on a higher dose of pred, I don't think that helped the results, however the symptoms subsided, ie, bleeding from sinus, hoarse throat, ear ache, etc., and I started to reduce the pred, and got to 10mg.
I then had a recently flare, but not quite so bad, [but some sinus bleeding, hoarse throat ] mainly headache, so Dr put that down to my GCA so upped the steroids again, my inflammatory markers were up also. Seems strange that my recent flare was just after a urine infection, [ I get quite a few, I do have stage 3 kidney disease ] so perhaps one inflammation sets off another ?
I wouldn't mind if I was only dealing with GCA/PMR and maybe WG ?? BUT it's all the other stuff I have to cope with that probably causes me stress and doesn't help the GCA , vicious circle. Oh well there's always someone worse off, my friends daughter has been diagnosed with breast cancer and only in her 30s, so sad.
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