I had a phone call from my Gp today to say my anaemia has deteriorated. My usual level is 106 and it’s dropped to 94 for no apparent reason. I have stage 4 kidney failure, no dialysis yet and Vasculitis. I take iron tablets and Aranesp injections to increase my Hb levels.
I’m waiting for Addenbrookes to get back to me next week, but just wondered if this had happened to anyone else.
Any comments and advice will be gratefully appreciated,
Thanks
Jill
Hello, Essex-Jill. I have MPA and Stage 3 kidney disease and my Hb. goes up and down occasionally - like you, I am also on Aranesp. I presume your Consultant is at Addenbrookes (mine,too!) and,. if the team there have been informed, that is the best action you could take. I'm sure they will deal with it. Hope this is of some help.
Hi trebar
Thanks for your reply.
Yes my consultant is David Jayne at Addenbrookes and I’m sure he will say to increase iron tablets and Aranesp. My Hb normally only drops when I’m very unwell, was hospitalised in early March with flu and a chest infection but it was back up to 106 in April.
Will just have to wait to see what they say next week.
Take care
Best of luck. Hopefully, the 'flu season is coming to an end at last. I was in hospital late last year with ? infection but it turned out to be quite a nasty flare of vasculitis for which I was treated with Rituximab at Addenbrookes. Still struggling with it a bit but going in the right direction, I hope!
Look after yourself.
Trebar
I too have Rituximab and I’m due my next infusion in July, but as we all know it leaves us open to infection. But I still cal,it my ‘wonder drug’
JIll
My Mum had very bad anemia when she was being treated for vasculitis and required regular red blood cell transfusions.
Her anemia reduced as her health generally improved.
I looked up anemia caused by inflammation which is well understood.
I hope you get on well, good luck and my best wishes for you.
If aranesp alone isn’t helping your Hb levels, then they might offer you an iron infusion (far more effective than tablets). Hubby (on dialysis from kidney failure caused by MPA) gives himself aranesp every 3 weeks, and has a long lasting iron infusion every few months (there is a shorter lasting version given more frequently to those dialysing in hospital but he does haemodialysis at home)
He found the first time he had an iron infusion it gave him sudden backache, so he got them to slow the infusion down and now it’s done over 30+ minutes causes him no problems. He’s not had the shorter lasting one so I don’t know if that had the same possible side effect.
As he’s waiting for transplant it’s very important that he avoids blood transfusions (make transplant very difficult) so they might offer you a transfusion instead as I guess (hope) transplant is never on the cards for you.
Best of luck, at one stage hubby was in the 50’s Hb and he felt really rough! Now they keep him at 110-115ish (can’t go back to normal healthy levels on haemodialysis as it’s bad for the heart) but he feels pretty good now. Hope you feel better soon
Thanks Lesha
I’m not sure if they will give me an iron infusion as my iron levels are normal.
But thanks for the advice about your husband asking them to slow it down, will remember that just in case I need it.
I’m really just hoping I can increase Aranesp and increase my Hb and have more energy soon.
Good luck and hope your husband hears soon about his transplant.
JIll
Just thought I would update everyone.
Had a cal back from the team at Addenbrookes today and advised to increase my Aranesp injections to twice a month and repeat full blood count, CRP and ferritin mid May and if no improvement then I will need an iron infusion at the same time as my usual Rituximab.
Thank you everyone for your help and advice
Take care
JIll
travel insurance - am I in remission
I found out yesterday it runs in my family Dad side !
In Early Stages of Testing for Wegeners 
Raising a little awareness of vasculitis in our village
