Advice needed please

[Fleen]

I've had GPA for 25 years with 2 relapses. I last had Rituximab in June 21, I then in November had Covid with 2 hospital admissions. I now have long Covid. I cannot have RTmab because my Immune system is so low, Igg 3.4IgA 0.48

IgM 0.42p

Yesterday I was walking around and felt extreme fatigue, hip joint pain. I went home but then had horrible rigors and a high temperature. Took panadol and I've woken up today and touch wood, I feel OK. I'm worried incase I'm relapsing. Last relapse 2014. Long Covid doesn't help matters either

[Main1234]

hi how are you feeling today? Are your symptoms the same as when you had a flare? Could be long Covid but with GPA it’s better to have new symptoms checked out.

I’m guessing you are still under a consultant, are you due any blood works?

Might be worth trying to contact your consultant or GP if they are knowledgeable.

Let us know how you get on. Best wishes

[Fleen in reply to Main1234]

Hi there, haven't seen my consultant this year, had bloods done in September but request for my Anca's was declined by GP. She stated I would always be positive 🫣. Feel much better today thank you x

[Main1234 in reply to Fleen]

Glad you feel better, if symptoms return hope you are able to get done help/ support.

[Investigator1]

Hi Fleen. An ANCA count is a must. Why? because your levels may be rising. I understand you may always have positive ANCA, me too, but it has to be controlled. This is what I was told, Covid!? Your immune system will respond even though you are on Rituximab, Fitness? You will produce more white blood cells, fuel for ANCA. I have had Covid twice and each time my ANCA marker has been higher. Please get it checked,. Nick

[Mooka]

You need to see an immunologist. Sadly there are a few of us that have low immunoglobulin levels after rituximab. It is a well known side effect. You can replace your IGg. I had infusions every three weeks for six months and have been self injecting every week ever since. It’s very expensive so they are reluctant to give it to you. Without this you will be prone to infections. BTW the added bonus is it helps prevents flares.

[AmyS1]

Do you have a vasculitis clinical nurse specialist you could speak to? They can help you try to distinguish a relapse from long covid or an infection. It is not so easy to distinguish as people think.

[Fleen in reply to AmyS1]

Thanks Amy, done a covid test and negative. Feel exhausted and coughing. Will ring them tomorrow x

[yogarita1955]

what medication are you on ??

[Fleen]

None! Had my last flare 2014, had to stop RTX after last dose in June 2021 due to deranged blood results. Its like a sword of damacles hanging over me.

[Fleen]

Well I've grown staphylococcus aureus in my sputum, now on antibiotics. No wonder I felt so awful