Hi. I apparently I have the above medical condition but in all honestly they admit they are not sure what I have. I have had every test imaginable but still not sure. I also suffer with Asthma, Osteoporosis, Blood pressure and am currently taking an unbelievable amount of pills. I have been on Prednisolone for a year and during this time I have taken some very heavy doses of 60 mg and 45 mgs. I have had the first infusion of Rutiximab but then I got Shingles and they are loath to give me the second infusion. I have clots on the lung and I am now anaemic. I really don't know where to go from here.
I have been treated in the local hospital but I'm wondering if anyone could recommend an outstanding consultant in Vasculitus 'cos I need someone who really specialises in this particular area. Thanks so much
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Oldharry
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I suggest you phone the Vasculitis UK helpline - vasculitis.org.uk/helpline - 0300 365 0075. The experienced volunteers there are ideally placed to answer your questions.
I think when you have all those medical conditions, you need a team and coordinated care. I imagine you are in England? You may just have to travel to get the care you need and deserve; you mentioned that you have ANCA vasculitis, and there is C-ANCA and P-ANCA. Have you been told what type. ?
If you are close enough to London, many on this site rave about Addenbrooks, but living in the states, I have no first hand knowledge.
You are right, you need physicians who are highly specialized. This area of medicine is very murky for doctors as well as for us. Being on steroids can make you very vulnerable.
Tests results can be wrong or inconsistent. What symptoms bother you the most?
Hello, hope you get sorted soon. I’m treated at Addenbrookes by Prof Jayne and team, and also by the respiratory, ophthalmology & neurology teams there. It’s taking time to get me sorted out but I do have great confidence in them, much more so than my local hospital in Colchester who referred me on because of the severity of my symptoms.
And Addenbrookes is in Cambridge, an hour or so from London, where I believe there’s some more great specialists.
Not knowing what exactly you have is unsettling. I went through same thing. In 9/16, I was fine and fit with perfect routine blood work. By the end of the month, I felt awful with new musculoskeletal pain and fatigue never had before; went to a rheumatologist who put me on 16mg prednisone; after 2 days, I felt terrific. When I returned, was told I was positive for C-ANCA vasculitis, now called granulomatosis polyangetitis; prior it was called Wegener's granulomatosis because Dr. W. was the first doctor to identify this disease. But they took Dr. Wegener's name out when it was found he was a Nazi sympathizer.
I did have a granuloma on my right hand removed and biopsied. Fatigue and musculoskeletal pain in upper body was new (shoulder. collarbone, wrist pain and hand pain with overwhelming fatigue.; could not roll over in bed during night without whimpering.
I sought a 2nd opinion at Johns Hopkins University which is a very prestigious institution. with a vasculitis unit in US; the doctor had already reviewed my records and, while I was there, repeated all blood work, examined me thoroughly and was very kind. She did not think I had it, and suggested a very slow taper off steroids. ; no more than 2.5 mg every 3 weeks.
My symptoms were more confused by the fact that the previous summer, I had a mosquito borne tropical virus which has similar symptoms after acute phase. The acute phase resolved in 5 days. Thereafter traveled to France with lingering hand pain in particular and spent almost 3 weeks in Normandy and had a great time.
So all this stuff happened upon return from the French Carribean and France. The rheumatologist pawned me off on a physician's assistant who put me on Methotrexate and started dramatically cutting down the steroids. I had a temporary loss of vision in left eye, but luckily came back within 10-15 minutes. Although you are supposed to rush to emergency with sudden vision loss, I did not , and increased my steroid dose myself.
Finally, I changed rheumatologists to a solo practitioner so no chance of a physician's assistant. He repeated the blood tests for C-ANCA /PR3, and sent slides to 3 different labs-all negative.
He thought my symptoms we're on point with polymyositis rheumatica; PMR and possibly giant cell arteritis because of the eye incident and headaches. Usually people with PMR have an elevated C-reactive protein and elevated sedimentation rate, but mine were normal. I learned from this website that up to 20% of people with PMR have normal results.
So we must conclude that rheumatological disorders are often bizarre in how they present, inconsistent blood test results in relation to symptoms, and it is not a precise science.
I decided to stop worrying about the diagnosis; I am down to 4 mg Prednisone and felt well enough until I fell down 13 hardwood stairs; no broken bones; just horrible bruising.(another story). No sign of lung or kidney damage so I am just not worrying about it anymore.
Now recovering from fall, but hope all will be well when the injury pain resolves. Better not to obsess with diagnosis; it will drive you crazy. Follow your own instincts, in consultation with your doctor.
Yes DO contact Dr David Jane's Team, at Addenbrooke's Hospital Cambridge, if only to get your Medication Checked. Dr Jane, who is also a Consultant to our 'Sister' organisation- Vasculitis UK- is Definitely to person to see. I have Opted, to see his Team, once a year- even though my Consultant, Dr Andi (at The Ipswich hospital) knows, 'quite a lot' about Vasculitis. (Dr Andi is aware that I see Addenbrooke's Annually and has no objection, at all).
I know that this Sounds 'Twee', maybe Condescending even, but I really do Wish you Well Harry. Please also know that ALL our Prayers are with you. If I said 'Try Not to Get into Too Much Trouble...…
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