How common is relapse within twelve months of rituximab?

[Vqueen]

How soon after rituximab did relapse happen for you? I was diagnosed with GPA December 2020, by March 18th I had my 2 covid jabs rushed to only 3 weeks apart then had 2 6 hour rounds of rituximab. Now it looks like I've relapsed. Is this common? I'm 34 with 2 young children and I'm petrified I'm not going to see them grow up. It's the unknown and the only people I think really know how i feel is all of you. Hope you're all keeping safe and well.

[DevonLottie]

Hi. I've had gpa for over 20 years now so please keep positive. We all respond differently to the drugs but when rituximab was introduced as a treatment for gpa about12 years ago I had it every 6 months and it made a huge difference to my gpa control. Now I only have a half dose once a year which seems to keep it at bay. Xx

[eh66]

There are many people on this forum who have had the condition for decades even relapses so don't loose hope. My consultant suspect that life style/environment may trigger relapse, though they weren't clear exactly what those triggers were. I for one would certainly like to know the original causes (a virus was suggested), and how to avoid relapse. Meanwhile I try to eat well and exercise, to hopefully keep other infections at arms length that may take a liking to my immune suppressed body.

[Mooka]

I think I went for about 18 months before I flared. I’d stopped maintenance doses as I was getting a lot of infections. I had another couple of doses of rituximab and then stopped them again because of infections but vasculitis was under control. My last dose of rituximab was 5 years ago and I haven’t flared since. I’m not on any immune suppressants. When I did flare my B cells had started to increase. Please don’t think that because you have flared you are not going to beat this. Good luck I hope you get your flare under control soon.

[Chris-Bromsgrove]

Hi Vqueen, hopefully the medics will get your GPA vasculitis sorted with Rituximab but if it doesn't work for you there are other tools in box. Ten years ago when I was treated the first choice treatment was pulses of cyclophosphamide. Rituximab was only just getting approved by NICE at that time, so it tended to be used as Plan B. Cyclophosphamide could be your plan B. It worked for me. Chris

[Investigator1]

Hi vqueen can I ask if your blood tests show relapse. I have been on Rituximab for 18 months now and it has brought my GPA under control but every so often I get exactly the same sensations I had just before diagnosis. My ANCA marker is less than 1/20th of what it was but I still get the same aches and pains, I was convinced it was attacking me but I was wrong.

[ZiggyDiego]

Don’t despair. I had my first relapse just 3 months after cyclophosphamide. Then I had rituximab & relapsed 8 months later in 2018. Since then I’ve had it every 5-6 months without another big relapse. I’m flaring frequently, but the symptoms tend to settle within a week or two. My doctor describes my GPA as very difficult to control and “flitting” constantly. I’ve got used to waiting to see what happens next with random symptoms that come and go, I’m off prednisolone now which has improved the quality of my life so much: it made me so vulnerable to infections and other problems. So hang on in there and hope things get better for you.

[Dangee]

Hi Vqueen & everyone else! I had my 1st infusion of Retiximab yesterday my GPA is localised apparently but what are signs of a relapse to look for physically & what are the general symptoms in general? I’m very recently diagnosed & hungry for as much info from yourselves as possible. Thanks. Dan.

[Binty1 in reply to Dangee]

Hi DanJust noticed a couple of your posts and am wondering how you are, 2 months on from your first infusion?

I dont have diagnosis yet, something autp-immuny, arthritisy,lupusy,vascularisy…got ct scan this week so we’ll see.

Anyways, your honesty and hunger for knowledge about whats going on right now struck a chord here, all the best Dan, hope you feeling a little better.

[Dangee in reply to Binty1]

Hi Blinty. So sorry, I didn’t see your message. Hope you are as well as you can be!

So, I’ve had 2 infusions now. The last was about 5 weeks ago.

I didn’t really notice a difference in how I feel although did feel a bit fatigued later in the days following he infusions .

About 2 weeks ago I did tell my wife that I felt fantastic (I actually said I felt like a teenager!)

I had a follow up appointment at the Royal Free in Hampstead on Monday where they said I’m a bit of a “special case”.

They seem happy that my GPA is localised & not spread elsewhere.

(It’s done damage to my eye socket, nose & top row of teeth)

They took a load of bloods to check the infection levels but haven’t heard back with the results yet.

They’ve said that if it works like they think it will, all I’ll need to regular blood tests to monitor the infection levels.

I’m at Moorfields next week for a check on the eye & socket which is a mess at the moment. They won’t do any reconstruction work for a couple of years unfortunately.

So regarding your question, I feel ok. I’ve continued working throughout everything, haven’t caught any bugs since the infusions & have basically just carried on as normal.

What are your symptoms? How are you getting on? I’m still a bit in the dark really, my GPA was unknowingly self inflicted unfortunately & the 1st sign of it for me was reduced movement in one eye early last year.

Have you got arthritis? I’ve had Gout since I was 14!! & am controlling it perfectly with allopurinol.

It seems to be such a wide range of symptoms.

What area are you in? Have you been getting care? Where are your scans focused on?

Regards.

Dan.

[Binty1 in reply to Dangee]

Hiya, Good to hear from you Dan. 😊Jeez, you have really been through it huh with your poor face. I hope you not in too much pain. And with a bit of luck, the meds may slow it down now for you.

Gout? Yes, me too! For years and years now and rheumy recently laughed when i told her. She wouldnt laugh if it was her toe!

Funnily enough, back in the day, hangovers for me = really sore feet 🤔

No diagnosis for me yet, i reckon RA, they were thinking psoriatic arthritis but now vasculitis in the mix too. Mainly hands and feet affected but lower back on one side has been a killer for over 2 months now. Swollen foot/ankle on that side too.

Still working but have to get up 3 hours before i leave the house cos thats how long it takes for me to transform from crippled, creaky, swollen oap mode to something nearer my actual 52 yo self.

Your comment, teenager again? Made me smile. My boyf bought us new tent today for (hopefully) a couple festivals this year. We put it up in garden, (practise run) and those were his words when we zipped it closed after dark 😊

Let me know how it goes at the eye place next week right?

Take care and keep on keeping on!

B x

[Dangee in reply to Binty1]

Same age as me! Same thing with my back as well. I’m a heating engineer/plumber & have always had a really strong back but in the last couple of years I can feel something “twanging” in my lower left side if I twist or bend to quickly. Especially in the morning. Putting my left sock on was a nightmare. It does seem better lately. I really didn’t manage my Gout properly for decades. My big toe joints were shocking, my knee & ankles were seizing & one of my little fingers had sort of deformed & hard yellow stuff was appearing through the skin.

But……

Got on the allopurinol just over a year ago. Have not forgotten to take it for a single day….. All my joints have returned to normal, can’t believe it. The allopurinol has removed all the build up.

When you say “back in the day”, we’re you a raver?

I was but over the years I transferred from pills (e) to powder & that is what caused my GPA. It’s an Italian cutting agent that affects your DNA permanently. That’s why for me it’s localised behind my nose etc.

Apparently it’s a common occurrence in areas like Milan. 1st I heard about it was from my nose consultant in December.

Anyway, don’t get down regarding your joints. I didn’t think I could feel completely pain free again but I have (on & off weirdly) recently. I really really hope it continues.