I was diagnosed with WG in Jan 2013 and am still not in remmission, it has affected my kidneys I am class 4 KFD, I have just been sent an appointment for March. It will be 8 months since I last saw him. I last saw my Rheumatologist in October I am due to see him in January but it will probably be another couple of months before I see him. I am told to have blood tests two weeks before I see him, which means I have bloo tests about every 5 months. Is this normal ? I would appreciate your views, maybe I am expecting to much but I thought the standard was every 3 months.

16 Replies

  • This does not sound normal to me... John has WG.. diagnosed nearly 14 years ago.. no Kidney involvement ... he has routine blood tests every month... kidney function blood test every 12 weeks.. and sees his Consultant every 12 weeks.. if you want to talk to John about your post valwood please write him an email or ring the helpline 03003650075


  • Thanks Suzym2u. I will contact John after the new year by phone. I have vasculitis in my eyes plus steroid induced catarracts so I don't see to well. I find the site difficult to use as I can' t expand the text.

  • i valwood, me again, l also ave vas in my eyes, plus steriod induced cataracts. l don't know weter you've tried tis but to expand te text, old down te ctrl key and at te same time roll te mouse weel forward ttis will enlarge te text, to rtn to small text, old ctrl key and using te mouse weel roll it backwards. ope tat elps. sally

  • Many thaanks but I use a tablet, don't think you can do that on here.

  • Many thaanks but I use a tablet, don't think you can do that on here.

  • I have blood tests every 4 weeks and see my consultant every 4 months.

  • I have wg with class 3 kfd,am in remission and doing very well my blood tests are monthly, and before I was seeing both rheumatologist and renal consultant on a monthly basis and now at 3 monthly visits to the consultants

  • I have similar protocol, my MPA in remission but stage 4 kidney failure. Monthly blood tests and 3 month nephrologist visit and 6 month rheumatologist visits.

  • Hi there,

    I was diagnosed in feb 2013 with the same. I have since October have blood tests every 7 weeks a week before I see my consultant who is a nephrologists on the 8th week.

    I think my 1:1 visits will continue to be 8 weeks and increase slowly. However I would be worried if my blood tests are not monthly....because they monitor the blood in order (for me particularly) to continue taking mycophenolate mofetil. We have discussed recently switching to aziathiropine. This is because as far as I know that the switch drugs may cause blood thinning or too a lower suppression of the white cells cannot recall which. My GP who gives the monthly repeats always asks when the last time was I had a blood test.

    I have never seen a rheumatologist but have had xrays in 2013 during the year quite regularly.

    But the more you see them - I think is good. A lot happens in between but we forget to tell them.

  • I am seen every 2-3 months and have bloods taken every three months. I have learnt that you need. To be proactive in the NHS. Ring the secretaries and get your appointments brought forward. If that doesn't work get your GP to intervene. I don't have a kidney problem but do see a rheumatologist. It seems routine for us all to be seen at very regular intervals. That is the norm when you have conditions such as ours.

    Good luck.


  • Thanks for all your replies. I have tried phoning secretaries but after leaving numerous messages I tend to give up. My GP has been very good but doesn't seemto have much luck. I am going to see her next week for yet another moan. I am finding the stress behind all this is making me feel ill all I want is to be properly monitored, then I can relax a bit

  • [broken keyboard/. i valwood, wit regards to appts. ave you tried pals at te ospital, l ad an issue wit te pain clinic and on te advice of stella addenbrooke's vas sister. l contacted pals and witin 10days l ad an appt. sally

  • Sima1952, I have just changed my keyboard. Replaced Logitec keyboard is ok if it's any good to you. Derek.

  • derek, tank you so muc for te offer but l've ordered a dolpin keyboard to go wit te new programme l sall be installing next week; te keyboard is supposed to be wit me by tuesday. sally

  • Thanks will give it a try.

  • Hello valwood,

    Sorry to read your WG is still not in remission (Although I'm not sure what that is with this condition). My appointments have not been routinely scheduled since i started my treatment 12 months ago. My blood tests have been random and as required (apart from the first 8 weeks on Azathioprine) my last blood test was done to satisfy the requirements of my new prescription, I couldn't tell you what the results were like as I didn't follow them up (I just assume all was ok as no one told me otherwise.) So, that's every 3 months for me then. As for appointments I think I have one when I need one. Very best wishes and I hope you can bring your appointment forward.

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