How quickly can you relapse after rituximab

[Vqueen]

Hi on rituximab for anca vasculitis. Was told two weeks ago that I was in remission. My breathing is now awful and wheezy and coughing up green gunk. Is it possible to relapse so quickly. It was the 18th march I had my last infusion.

[Main1234]

Hi could you have a chest infection? I know everyone thinks of Covid these days , are you able to get tested ?

Are you able to contact your rheumatologist or nurse specialist to discuss as they will have your last blood results.

Were these your symptoms when you were initially diagnosed?

Hope begin to feel better very soon

[Vqueen in reply to Main1234]

Hi, yes it was respiratory issues when I was diagnosed. Im having bloods done tomorrow and a second iron transfusion Monday. I've done a lateral flow test and it was negative. I'm petrified of more damage being done. My last bloods were ok I think other than being severely anaemic they just said my results are no worser than the originals ones before treatment was started. Thankfully I was diagnosed and started treatment relatively quickly after moving hospitals. Although for 18momths before this I had respiratory problems but just being incorrectly diagnosed with copd among other things so there was a certain amount of damage already done.

Thanks for the speedy reply 👍

[JAQUEKB]

Hi, I had Rituximab last year at the beginning of November and just now I went on remission. Everybody reacts different to it. My took time to see and feel the benefits. The first time I had it I was ok fir nearly 2 years. I wish you all the best. X

[Investigator1]

Hi Vqueen. I have ANCA Vasculitis and breathing was a major issue when diagnosed which is unusual due to my level of fitness. I breezed through last summer without my inhaler then after the switch from Azathioprine to Rituximab I again started to need my inhaler. I like you though “oh no” here we go again but I was astonished to learn my ANCA had gone down to its lowest level and since then has dropped even further. My consultant thinks it’s the Rituximab as it is a side effect but a good trade off.

[Mooka]

It sounds to me like a chest infection. Rituximab lowers your ability to fight these bugs. Your blood tests will show if your crp has gone up and you should then do a sputum test to see which bug you have. Good luck. Let us know how you get on.

[Vqueen in reply to Mooka]

Who should it be that deals with it my GP or rheumatologist?

[Mooka in reply to Vqueen]

You should get in touch with you GP. You will probably need to explain that rituximab is an immune suppressant but they can deal with chest infections. I had loads after starting rituximab eventually leading to me getting Bronchiectasis. I now keep antibiotics at home to take at the first sign of an infection. When you have bloods taken they usually test your CRP which shows up if you have inflammation in your body. This will be a good indicator if you have an infection.

[Vqueen in reply to Mooka]

Hi, already on co trimoxazole as a preventative. My lungs are quite damaged after several bouts of pneumonia and from the disease length of activity being nearly 2 years as I was misdiagnosed for 2 years until I changed hospitals. Then they found several granulomas. I'll give GP a rimg Monday however he has not been very helpful or supportive even with my consultant having provided all his findings, the gp still tries to be awkward. Thanks for the reply 👍

[louise112 in reply to Vqueen]

Hi I have been on 200 mg azathioprine since Nov 2019 and get ritux every 6 months. I am on 100 mg dapsone daily you can't take co trimoxazole as it interacts with azathioprine. Speak to your consultant. Look it up. All the best

[louise112 in reply to louise112]

I take the azathioprine daily why are they making you wait 4 months after ritux before taking it.

[cazy-g]

Rituximab takes a good few weeks to impact. You may have a chest infection and hayfever is around at present. Ritux worked well for me after all other failed, I would give it time. Hope you improve soon

[Vqueen in reply to cazy-g]

Hi, there was nothing else tried before rituximab and prednisolone. I was late being diagnosed so they just went straight in with the good stuff my consultant said. I'm weaning down my pred at the moment and am due to start azathioprine four months after rituximab. Its just very overwhelming feel like I'm In a very bad nightmare. Hope you are safe and well

[cazy-g in reply to Vqueen]

Could be withdrawal symptoms from pred , powerful little tabs that pack a punch. Reduce these slowly and take care, you will get there in the end

[Cloe]

Hi Vqueen, sort to hear of your struggles. Rituximab usually takes up to 2 years to come out of your system. Can you get referred to a Vasculitus clinic? What area are you? I would contact whoever your specialist is, your GP may be able to help with symptoms but I’d always go for specialist advice when it comes to Vasculitus.

The specialist care we get at Addenbrooks Vasculitus clinic is second to none. We contacted Addenbrooks and they advised us how to ask our previous rheumatologist to refer to Addenbrooks.

Wishing you better health 🥰😔

[pigeon12]

I had pneumonia a few weeks after my second rituximab infusion. It was caused by a fungus that is common in the lung but can become a problem in immunosupressed individuals. I was treated with septrin, an antibiotic and it cleared up.