Vasculitis UK

7 Week Wait for First Rheumatologist Appointment

Hi,

I’d like to thank everyone for the tips on referral and especially the guidance notes which I gave to my GP.

After a bit of a wait I have now received a referral to a rheumatologist for positive ANCA and plenty of various symptoms but it’s a 7 week wait. Only I’ve now started having various pain almost daily and picking up a cup of tea was tricky the other night because of joint pain and stiffness. I’m hiding it well though.

I’ve been frightened of taking zinc and herbal anti inflammatory which helps a great deal at the moment in case it decreases the likelihood of being correctly diagnosed. (It seems as if only numbers on blood tests matter rather than symptoms.) On the other hand I don’t want to be in pain.

I wanted to ask is 7 week wait normal and does anyone have ideas of how to handle the uncertainty and pain before diagnosis?

9 Replies
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We're all different so it's difficult to generalise.

My problem was a blood for test for other reasons which showed reduced kidney function, but with no symptoms. It took many months on waiting lists to investigate this. I did not challenge this because nothing was said to indicate urgency.

However things accelerated rapidly once I had a biopsy. I saw a vasculitis specialist in 4 weeks. Blood tests were taken that day and an appointment to review them fixed for 2 weeks hence. Next day the consultant phoned to say we could not wait 2 weeks as the results were worse than expected and to come in within 1 week. At that attendance (a Friday) I was given a confirmed vasculitis diagnosis and discussed treatment options. On the Monday I was started on cyclophosphamide infusion.

Comparing this with your position where you already have strong indications of vasculitis and have worsening painful symptoms which restrict your daily living, I would say 7 weeks is too long to wait to be seen.

Hope this helps.

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Oh gosh, I hope your kidney function has improved and things are going better for you.

I can see your point now that I’m a bit more rested - it is all so different for everyone. I think the trouble in my case is the immunologist who commented on my blood report suggested the possibility for vasculitis but my GP seemed less convinced and so my referral letter may not have stated it so clearly. I’m trying to keep calm while I wait for the consultation but there’s so many odd things happening. Just the other night both palms went dark blue-black as if I had terrible bruises for a minute or so and then slowly recovered so I’ve added it to a list as I have a poor memory at the moment. As I’m still standing as it were I guess it’s just part of something chronic but I’m wondering how to manage symptoms and concerns between now and the first appointment.

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Thank you for your good wishes regarding kidney function and for things getting better for me. However the point here is that when I was diagnosed I had no symptoms and my loss of kidney function was not severe, yet I was started on treatment for the vasculitis effectively the next day. This action was totally effective because, despite the vasculitis flaring up from time to time, I remain without symptoms and the kidney function has marginally improved.

This is a total contrast with your situation whereby you have a vasculitis diagnosis - or at least a preliminary diagnosis - plus a range of unpleasant and painful symptons. All this is not being taken sufficiently seriously by one or more doctors who are not specialists in this rare disease.

Apart from saying that I don't think you should have to wait seven weeks I don't feel qualified to say more. I would therefore most strongly recommend that you contact the Helpline people first thing Monday morning vasculitis.org.uk/helpline to ask where your nearest vasculitis specialist is located and see if they can advise how to get a rapid appointment.

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Thank you! I’m going to a different GP in the same practice tomorrow about it. Hopefully things will move along a bit quicker but if not I’ll contact the help line.

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Good luck.

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Thank-you! Sadly it would seem I didn’t have enough luck. I should wait and take asprin until appointment in 5 weeks and I’m to call emergency services if my lips go blue. I was hoping the GP would have relayed the details to the hospital consultant and my appointment brought forward but I don’t think that has happened.

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Sorry to read this.

I don't feel I can say anything more that is useful, as I have no experience of trying to accelerate what seems to be an urgent need to see a consultant who is experienced in vasculitis.

I would again suggest you contact the Helpline - they may be able to offer such advice.

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To see a vasculitis specialist at John's Hopkins took 5 Months! ; an inexperienced local rheumatologist is not that long in the US; unfortunately depends on the quality of care you want; even the vasculitis specialist was "off the mark" with me, and that was a one time consult.

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In fairness to medicine, it does sometimes take a long time for a diagnosis to evolve. The problem is lack of communication and consistency in the system as a whole.

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