Repeated infections on Rituximab, Metho.and steroids

[Scorer]

Posted ten days ago about my recent problems with repeated infections, shingles X3 in 18 months, numerous chest infections, UTIs and now campylobacter ( gastroenteritis ). Well, am now on my second course of antibiotics for the campylobacter and still experiencing dreadful symptoms.

Decided to see my rheumatologist privately to discuss my problems and review my treatment. Did lots of research on rituximab and infections so went along well informed. He listened sympathetically to my tale of woe. The last 18 months have been miserable with all these problems plus a right hip replacement last June. He agreed with my assessment of the situation and assured me he would check my immunoglobulin levels on his return to the NHS hospital.

Prescribed antivirals and antibiotics for me to use in case of further infections. Discussed a strategy for me to discontinue my daily steroids as he feels they are contributing to my immune status. Will take 35 weeks to come off them as have been on them for 40 years. He has also recommended vaccinations given to people who are immunosuppressed including HiB and the shingles vaccine. Only 64 so not eligible at the moment for routine vaccination. Also discussed Rituximab dosage. Had read research that indicated half dosage of the drug is as effective as the usual 1 g. He agreed to try this strategy for my next infusions.

Received his letter today which is copied to my GP and Rheumatology Nurse. Letter states that my infections are associated with Rituximab and that I am hypogammaglobulinaemic, i.e.. clinically immunosuppressed after he has reviewed my blood results. These bloods were done April when I had my first of my Rituximab infusions (8th. cycle). So now more blood tests and then immunoglobulin treatment, 3 infusions every 3 weeks then repeat bloods. Has anyone else on this site had this treatment?

Am now feeling rather disillusioned with the medical profession.

I have questions that need answering now about why this condition was not picked up earlier. It is 4 months since the bloods were done. Who is responsible for checking our results?Have been to the GP for these repeated infections so why was there no suspicions about an underlying cause. It seems I had to diagnose myself and resort to seeing my Specialist privately to find the answers.

Sorry for such a long post but wanted to encourage everyone to monitor their own condition carefully. I will make sure that in future I ask for all my blood results and check them out myself. For your information the consultation cost only £100.00 and I feel it was money well spent.

Thank you for reading this post and do take care of yourselves.

Best wishes Pam

[Aureliabert]

I always get my blood resoult, for years. I don't trust nobady and than I go and read it and ,if I see somethings wrong I tell the doctor, REALLY nobady care more than ourself , we the patients need to be the investigator the adviser the one that monitor our medication our side effects and suggest our doctor what to do , is that crazy ? But unfortunately that is the reality of our medical world

Good luck to you

[Harpey]

Hi Pam

I'm on Rituximab and methotrexate (and sulfasalazine and hydroxy) and had to sign a form from my GP to say I would agree to get blood tests at least every six weeks to monitor the effect of the methotrexate. I was told that if I didn't get the tests they wouldn't be able to continue to prescribe methotrexate. When my lymphocytes were low my GP phoned me to ask me to get a repeat test to check the levels again - I assumed that was normal procedure (?). So presumably it should be up to whoever prescribes your methotrexate but I'm not sure if that's only because I'm on a 'shared care' arrangement with the hospital as I live just outside their area boundary?

Good luck with getting everything sorted.

[Hidden]

I too, monitor my blood test results and provided they are much the same as before, I do nothing. I am not convinced my doctor even looks at them.! I once had a problem with my liver on methotrexate,told the rheumy nurse she said come off mix but doctor just said a lot of people have a higher reading than mine.

[debsy29]

Hi I just had 2nd infusion on Tuesday (first 1 was 2 wks before), on Wednesday the ward rang me to say my neutrophils were too low (caused by rituximab), when I have looked at my bloods from the gp which I have done every 6 weeks they all say "abnormal but to be expected". Who checks how abnormal they are?? I now have to go back to the ward a week on Tuesday for further bloods doing to. See if I need further mess to put this right!

I hate taking these mess it's as though they cause other problems and I'm not too sure how well it helps the rd.

Hope you get sorted out soon 🙂🙂

[popsmith1874]

Hi I always get my results and check them as well because the surgery I attend is very busy so I just make sure nothing's un toward being on mtx and Benepali injections I think the doctor does check them but how often I don't know so it's better to keep on top off things

[kalel]

I agree we all need to monitor our own condition and be in charge of our own health. I have def realised that some Drs are better than others. I was told by one of the Drs that they never see side effects from these RA drugs but I have had to learn to just not say anything to certain Drs. The thing is having a health condition is hard work and we just need to be strong and stand our grand and realise we know what is best for us and our body.

I really hope you can get something sorted out with your rheumy. If you having side effects from the meds maybe they will consider changing the meds. All the best with everything. Take care.

[Scorer]

Hello All,

Thanks for your replies. Aflways check my 3 monthly bloods for metho but the immunoglobulins are done at the hospital prior to the first rituximab infusion. Since I haven't had a hospital appointment unable to find out the results.

Just wanted to emphasise the need to manage our own cases.

Best wishes Pam