possible flare

[tomo1854]

hi i have had GPA pr3 for 2 years now after all the treatments to put me in remission and things were going ok apart from the usual side effects of the meds I am on 7.5mg prednisolone and 150mg azathioprine over the weekend I felt rough with a fever which only lasted till the next morning but I noticed streaks of blood in my phlegm not bad but enough to make me wonder if the vasculitis could be back I had lung involvement when I was diagnosed also kidney and nose involvement don't know if I should get checked out again I had my monthly bloods on Friday but not heard anything yet i think because its bank holiday has anybody else had a flare with blood in there phlegm

[AmyS1]

For get it checked! It is a red flag ! Check it out!

[Nell]

I totally agree. Contact your team asap.

[zoe69 Administrator Volunteer Vasculitis UK]

Any new or reoccurring symptoms should be reported to your doctor. This is not something to overlook. Get in touch with your doctor asap.

[Investigator1]

Hi tomo1864, yes get in touch with the meds these guys are right but at least you bloods are done. Please don’t think I am stating the obvious but have you had a Covid test? I had a bit of blood in my phlegm when I caught it and I felt rough. Take care. Nick

[tomo1854]

Well I was admitted to hospital last night waiting fothe verdict will keep you posted

[tomo1854]

Well stuck in hospital again it is a flare up starting the treatments again I am hoping to get retiximab again i had 2 doses last time but they would not let me have any more gave me azathioprine instead said it was their protocol? Will see consultant today its a nasty disease 2 steps forward 3 back I will keep you all updated

[Main1234 in reply to tomo1854]

Thank you for your update. Wishing you well and back on track once your new treatment commences.

This disease certainly keeps you on your toes .

Are you treated by an experienced consultant with knowledge of vasculitis? It can make a big difference to outcome.

Best wishes

[tomo1854 in reply to Main1234]

Hi yes I was diagnosed by a kidney biopsy was transferred to the QE where I saw many specialists included a professor of vasculitis my follow up consultant is a renal specialist who is very knowledgeable with vasculitis at the present hospital I have seen a few doctors i am on a respiratory ward and being treated with intravenous antibiotics possible cause infection due to vasculitis waiting for an anca bloods results my rash is fading so its a bit of a jigsaw puzzle at the moment ps I should have added about a month ago I had covid which caused a really bad hacking cough but I recovered well to my surprise testing clear soon after just wandering if there could be a link?

[Main1234 in reply to tomo1854]

Thank you for your response. Hope they manage to sort you out and you can return home . As you say QE is a centre of excellence. Keep us all in touch with your progress .

[AndrewT]

I would get this 'Checked', just to be Safe Tomo.

AndrewT

[tomo1854]

Hi all just another little update they have decided to give me 3 infusions of predisinone to see if that could put me back into remission I have had no mention of ritiximab I think its a taboo word I had 2 infusions of ritiximab when I was diagnosed but only azathioprine as a maintainance drug I can't work out why they won't give me ritiximab they say its not protocol?

[Investigator1]

Hi tomo, blimey mate through the ringer. Protocol? Only locally otherwise rubbish! It’s all about money, I have had 4 doses of Rituximab and have been told by my consultant (also a renal consultant) after my 5th due in November I will be put onto another maintenance therapy (not Azathioprine) as it didn’t work for me, clearly you either and if my new therapy doesn't work I will be on Rituximab for life. So that’s a completely different story. I was told that Azathioprine costs about 70p per tablet and an infusion of Rituximab costs 4-5k. It’s your life buddy and difficult as it is I would push them about this protocol business, if it’s a local protocol then I can’t comment but if they say it’s national NHS protocol they are lying. Nick.

[tomo1854]

Thanks nick I will see what i can get done i am going to try to get back to the QE because when I was admitted to my present hospital I was put into a side room because of my suppressed imune system but yesterday after upping my azathioprine and steroid Infusions, without any reason given put me on a ward with poor people with respiratory problems coughing and barking all night I cannot understand why they did this they should no I am immune suppressed and trying to to fight off a relapse i am really thinking of discharging myself its a right mess any advice would be appreciated

[tomo1854 in reply to tomo1854]

Hi all just another update was discharged from hospital yesterday after 8 days markers are have all come down crp was 139 when admitted now 5? Still very breathless, and nose crusting kidneys seemed to have escaped this flare so far but I have to get a plan into place with my consultant and gp to discuss the future,I still think I could need ritiximab to get fully into remission but has I have said it seems like my area except the QE will administer it? They have stopped my azathioprine for now and pushed the predisinone up to 20mg I still don't feel right but have stopped coughing up blood just another part of the journey