Hi,Just a quick question, is anybody seen by vasculitis clinic and rheumatology, or just one or the other.
I am only seen by rheumatology but at first diagnosis I was seen in the vasculitis clinic . I have poly granulamotis along with rheumatoid arthritis, but I am getting the feeling when I go to my appointments, my vasculitis is not being addressed, I just feel as though I am complaining about some symptoms that are more vasculitis related. Would love to hear other people's views or experiences about this.
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tina73
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I too have Vasculitis but only see a rheumatologist and like yourself the Vasculitis doesn't seem to be addressed. Everything I've tried aggravates my stomach as I also have gastritis. Ho hum!!
Neither! Have never been seen by a rheumatologist or a Vasculitis expert. My Consultant is a Renal expert who takes advice from the various departments but I am very lucky because she is brilliant and wouldn’t swap a thing. I have always believed one point of contact works better and it has for me considering I was in proper trouble with GPA 3 years ago. Please take care all, I sympathise with a lot of our kind because the NHS is in such a mess, expecting communication between departments has become a hope rather than a certainty and people are suffering. Front line staff are brilliant but the admin is what is letting the NHS down and has been for years. Take care all. Nick.
My Vasculitis (GPA) caused kidney failure and it was a very knowledgeable Nephrologist who diagnosed me. He said when he was going through medical school in the 80s, that's when he learned that GPA was one of the causes of kidney failure so he made a point to study it in depth. When I started seeing him for my kidney issues, I asked him if I should seek out a Rheumatologist for the GPA and he said that he probably knows more about it than any in our area. He was the one that prescribed all the meds for GPA and now I see him every 3 months. He has me do labs each time and he adds the ANCA lab test every 6 months. He has been very good at taking care of me.
Hi LLWegeners, yeah I have had a similar situation, when first diagnosed my kidneys were going downhill until the pumped me full of liquid steroids, a few days later they picked up. I saw a professor once and she said there are a lot of brilliant Renal experts but not as many outstanding Rheumatologists and that’s not a slur on them at all, as I understand it Rheumatology is generally a “second” subject for consultants so it must be difficult. I did ask the question once “does this hospital have a rheumatology department” to be told by the renal nurses “they are next door but you’re better off here” who knows. Nick.
I have EGPA, diagnosed in Jan this year, I get seen at the rheumatology clinic but they know about EPGA and are treating me for that. I was high pred reduced to 10mg now once the inflammation markers came down. Am now on Methotraxate and folic acid and changing that to address my reactions. Methotraxate seems to give me a slight headache for a day and half and I have had stomache upset problems but I think they are related to the folic acid. I monitor everything and get copies of my blood tests to see the trends and this informs my questions for the nurses and the doctors. Hope this helps.
I have a Vasculitis consultant who is part of a Vasculitis and Lupus clinic under the renal department. They have been excellent. I feel they really understand my condition, and pushed a treatment programme that got it under control quickly, and then focused on maintaining my remission. I have also taken part in some studies as it is part of Edinburgh University.
I'm seen only by rheumatologist. I have relapsing polychondritis and primary sjogrens syndrome.Like The_Expanse, methotrexate and folic acid and i record my monthly blood results too.
Like you I have a rheumatological condition and vasculitis, in my case the vasculitis is secondary to my primary condition. I was under a neurologist as well as a rheumatologist as my vasculitis causes neuro symptoms but haven’t seen a neurologist for some time. My rheumatologist is great but like you I feel many of my problems are caused by vasculitis and he can’t answer some of my questions. It’s hard to know too which condition causes which symptoms.
I used to be under a rheumatology department which had a vasculitis clinic too. This was at Guys, are you in the London area?
I have vasculitis and have developed lupus. I used to a vasculitis consultant but he has forwarded me to a lupus consultant because the therapy is being issued by the lupus/rheumatogology dept. I too have noticed that my lupus consultant doesn't address more vasculitic expression on my skin such as hives/blisters. But between the two consultants I have experienced the same therapy. As a way of making sure I can address any vasculitis concern, I see my vasculitis consultant once a year regularly and also I can always ask to see him should my needs arise. Would it be possible for you to ask to see a vasculitis consultant separately? That should be allowed. It doesn't have to a regular consultation.
I have had EGPA for 13 years. The first hospital I was seen by medical consultant I think because the EGPA kindly gave me brittle asthma, I was also seen by rheumatologist. I was attending two different clinics. I asked to be referred to Addenbrooks which provides an excellent service for all vasculitis sufferers. My clinic appointment starts with lung function test then onto the clinic where I usually see medical consultant and then onto the vasculitis team who are renal consultants. The last stage is bloods and I can see the results in a few days.
The team also has an excellent nurse Stella who is able to sort out our problems, you can also email her and she will reply usually the same day or ask to speak to her. We moved house 9years ago but my care is still with Addenbrooks.
I also see an Immunologist and our last contact we agreed she would review me annually with the usual caveat if I need to see her sooner just phone.
I live in the US, and was only seen by Rhuematologist. Diagnosed with GCA and have a Thoracic Aortic Aneurysm - almost 3 years ago. I did /do have right sided headaches, and in beginning crp and esr elevated, but came down to nothing after 2 months on prednisone.. I had a lot of symptoms that I questioned over the last 2t years, and simply got a “I don’t know”, and doctor added on methotrexate and Actemra as assumed they were from inflammation. After 2 plus years, I was still not feeling well, definitely not getting better, all my labs were getting worse. On my own got an appointment with vascular clinic at teaching hospital for second opinion. 6 months later, they did whole body CT w/ contrast, and it was discovered I have FMD( fibro muscular dysplasia) which is a non inflammatory vascular disease. So sadly I have been on the big boy meds for 2.5 years, and not needed. Tapering off of prednisone is still not easy. Medical care is so complicated, our doctors do their best, but I do wish my questions had been investigated…..as I told the vascular doctor, I felt as though I was treated as a RA patient, my knuckles were always looked at, etc, yet nothing to address my real issues/,questions.
I do not like this diagnosis as chance of stroke is 1:3….but at least now I know the cause of on going symptoms. Grateful someone listened!😊
Hi there 😊 I felt the same aswell (uk) I have vasculitis and severe uc. My ulcerative colitis is what they deal with. Rheumatology dealt with my arthritis and vasculitis but I got transferred to pyscio therapy to work on my strength and muscles.
Hope your ok , it is hard! Especially when in-between departments I'm with neurologicaist aswell.
I attend both clinics. When I was first diagnosed in 2008, I was treated in Rheumatology by a consultant who specialised in autoimmune illnesses, but when my kidneys were affected, I was referred to Nephrology and my consultant specialises in vasculitis. I also attend Dermatology once a year for a full body check because the immune suppressants make and other treatments make you prone to skin cancer.
Not all hospitals have vasculitis clinics, many patients are looked after by the rheumatology, renal or neurology department.Our local vasculitis and soft tissue disease clinic is in the rheumatology department and my appointments never say attend the clinic.
Could you ask your doctor? When your vasculitis was first diagnosed and you attended the vasculitis clinic were you seen by another doctor? Did they discharge you from the clinic?
More importantly, have you been tre6for your vasculitis?
hi my husband has vasculitis not been seeing anyone but renal unit no help no treatment nothing just been told lump in his neck maybe now sent to rheumatologist as they think has something to do with his condition
I suppose it depends how well controlled your level of disease is; I have a similar disease to you. When my disease was madly active about 15 years ago, I was being seen by a rheumatologist who I felt wasn't able to help me so I decided to ask to be referred to a vasculitis specialist at a different hospital. The clinic I attend in England is multidisciplinary, where I am able to be referred to whichever specialist is appropriate. I'm very lucky, but the point I'm making is please don't be afraid to voice your concerns and to act upon them. I wouldn't be writing this to you if I hadn't asked for that referral. Good hunting.
a really interesting and useful thread. Thank you.
A slightly tangential perspective: I was first dx with rheumatoid arthritis, then vasculitis. I could see my symptoms were slightly different from others with ra and v. Many here will know Prof. Jayne at Addenbrooke’s and know how excellent he is. The best person to ask about anything in this field. Well I have seen him for around 3 or 4yrs now. He had given me RTX and I have had a say 15% improvement. I asked him - as you’ve seen me for some time now, what do I actually have? He said well you could have rheumatoid arthritis, or you could have rheumatoid vasculitis, or you could have……lupus! He said there is enormous overlap and blurring around these diagnoses. I think he is Director of Vasculitis and Lupus and that he is a nephrologist. My instinct is to go for the vasculitis expert. However if you see a brilliant practitioner like e.g. Prof Jayne, then go for them and they will sort any crossover
Hi, my husband has a range of autoimmune diseases including peripheral neuropathy and Rheumatoid Arthritis. His GP referred him to a neurologist who said he needed to get to the bottom of the cause for the neuropathy. He was referred to Southampton for a nerve biopsy and the , culprit was Rheumatoid Vasculitis. The neurologist said his existing RA consultant was the most appropriate consultant to treat the vasculitis. Husband now has Rituximab infusions which helps his RA but has done nothing to help with the vasculitis or the neuropathy. He has permanent severe pins and needles and numbness in his feet so cannot feel where he is walking so also stumbles a lot and has had several falls. Because of lung problems and heart failure medication options are limited. We have slow walks and do gentle exercise specifically geared to peripheral neuropathy. We live in hope of a breakthrough but are not holding our breath!
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