possible flare: hi i have had GPA pr3 for... - Vasculitis UK

Vasculitis UK

7,869 members6,900 posts

possible flare

tomo1854 profile image
14 Replies

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

Written by
tomo1854 profile image
tomo1854
To view profiles and participate in discussions please or .
Read more about...
14 Replies
AmyS1 profile image
AmyS1

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

Nell profile image
Nell

I totally agree. Contact your team asap.

zoe69 profile image
zoe69ModeratorVolunteerVasculitis 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 profile image
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 profile image
tomo1854

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

tomo1854 profile image
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 profile image
Main1234 in reply totomo1854

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 profile image
tomo1854 in reply toMain1234

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 profile image
Main1234 in reply totomo1854

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 profile image
AndrewT

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

AndrewT

tomo1854 profile image
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 profile image
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 profile image
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 profile image
tomo1854 in reply totomo1854

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

Not what you're looking for?

You may also like...

Flu and Flare-up

In early March I caught the flu. I completely lost my appetite. I didn't want to eat anything. On...
lfu2 profile image

Possible CNS involvement with ANCA Vasc

Since my last post, I received a call from my consultant on Monday evening. He asked me to come in...
Vo321 profile image

vascular consultants

I have a question,Purely out of interest, If Vasculitis is inflamation of the blood vessels why are...
jackrussell profile image

Vasculitis in the pancreas?

Has anyone with GPA or MPA been diagnosed with pancreatic issues due to vasculitis? Hubby had has...

Possible Vasculitis

First of all I would like to say what a fantastic site. I have found all comments extremely...
Ianhend profile image

Moderation team

See all
Suzi70 profile image
Suzi70Administrator
JaneLE profile image
JaneLEAdministrator
Charlie_Harper profile image
Charlie_HarperAdministrator

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.