Suffer from Rituximab induced Hypogammaglobulinaemia which means than my immune system has been compromised by 12 years treatment with Rituximab. I now require immunoglobulin infusions weekly to maintain my immune system. Have been careful over the last month or so but am now going into purdah as I am in a very high risk group.
Please be careful all you people who are at risk until things become clearer. Best wishes.
Pam
Understandable Pam, I wish you well. Keep in touch, let us know how you are getting on?
Take care Pam, I hope you manage to keep well.
Ouch, poor you. You have been so unlucky. I hope with the weekly infusions you can manage to keep some level of Ig.
How are you managing to get the infusions?
Sounds like you are being very sensible so stay well.
Discovered this problem 3 years ago and has been a nightmare to get it under control to avoid the numerous infections. Was initially 3 weekly intravenous infusions in hospital to maintain health, but now weekly subcutaneous infusions at home which my husband does, as I struggle with my mobility. Immunoglobulins supplied by NHS via home delivery. Great service. IGg levels OK at the moment. Thanks for your concern.
Pam
Thank goodness you don’t have to go to a hospital to get the infusions! Well done hubby....
Sending my best wishes. Your plan sounds very sensible X
Sending you love and best wishes. Very sensible to keep yourself safe and thank goodness you have a lovely husband to look after you. x
Take care and the very best of luck going forward. X
Hello Pam
I have not had Retuximab as long but after my infusion in November I developed a chest infection which has waxed and waned but still around even now. So I have decided to avoid crowded places, tube and bus... not going mad... still doing one to one meet ups but I think we must be sensible. What you have decided to do seems very prudent ... best of luck! xx
Hey Pam-51 I’m in the same situation as you hypogamma due to rituximab infusions. I’ve had one chest infection after another all winter since October I think I’ve finally turned the corner and am now over it 🤞 I’m isolating myself too I haven’t been out for weeks and I’m now very bored. I’ve had the odd visitor but only close family without even a sniffle and I’ve still given them a wide berth. Hopefully you’ll be ok and won’t get the virus and even if you do as your IGG’s are being propped up by infusion you will ok. I’m not so lucky my immune system is still in my boots and no chance of ivig anytime soon. I’ve had to stop my meds too so only getting by with 5mg of prednisone currently my R.A. is raging and I’m hoping if I manage to stay healthy for the next couple of weeks I can re-start the baricitinib because boy do I need it. Stay well and good luck 🤗.
Hello,
Good to hear from someone else with this condition. Have never met or spoken to anyone who has developed this complication of Rituximab. I diagnosed myself three years ago after several years of suffering recurrent infections including shingles five times! My immunoglobulin levels had been low since 2012 but the results had been overlooked. When I spoke to my rheumatologist he confirmed my suspicions and referred me to Immunology.
I am surprised you have not been offered treatment. When were you diagnosed? I do know that this complication is increasing in frequency as more people are on Rituximab therapy for various conditions. Assumed everyone was receiving treatment as I am in Cambridge.
My treatment initially was IV infusions 3 weekly at the hospital. Now SC infusions weekly at home. I must be one of the lucky ones to have been offered treatment.
I wish you well and it would be good to hear from you.
Best wishes Pam
I too have had repeated chest infections for the last two years after three years of being clear on Rituximab. I read after 3 or 4 rounds of infusion it can happen like that. That would seem to make sense when I started with the chest things two years ago. I’ve had a clear lungs CT and have 3 monthly check ups with a respiratory consultant who says my lungs are strong and clear but I’m prone now to chest infections due to RTX. I get wheezing catahhr and can’t stop coughing. After Doxycycline I am back to normal. I am told my immunoglobulin is not too low by my biologics nurse. Wonder if worth chasing that up again. I also got shingles (for the first time) two weeks after my last Rtx infusions in October. They were mild and in one place (hip) I was told but I had to have Acyclovir. x
Do get a copy of your blood results and check for yourself and in the future ensure you monitor your results as I do. Also, ensure you tell your rheumatologist about any infections as we see our GP for these problems and they are unaware of them if we don’t tell them. GPs receive a letter from the rheumatologist after your visit but there is no reciprocal correspondence monitored.
When I got shingles for the fifth time I researched the issues and diagnosed myself and confronted the consultant rheumatologist. In my case the immunoglobulin results had been overlooked. Trust it never happens to anyone else. I repeat monitor your own illness to be sure things are OK.
Keep well Pam X
Thank you, I am very keen to ensure I relay any GP and non rheumy info back to my rheumatologist to ensure they have all details. I’ve been doing this and reminding/prompting the medical people I’ve seen since the onset of my RA in 1995. You have to as they don’t all have cross-records of everything as you say. I arrive at my rheumy clinic with an up to date info sheet of where I am at and any letters etc from other consultants. I think they think I’m over efficient! You have to do this. I noticed my immunoglobulin results were on my last general blood print out but they are not always on. They weren’t asterisked as being out of sync but I’ll double check the figures and ensure I’m given these results On the print out each time I go for my infusions. I did mention this last year to my biologics Sister When taking about my chest infections and Rtx, saying some people on Rtx had had their immunoglobulin wiped out and she said .. yours is normal. Still we like to see the figures to prove it. I have my results printed out each infusion and blood test from the GP inbetween. They do them on a table also showing the last few years. I hope no more shingles for you. I know how they can keep coming back one you have had them. Thank you and good luck. x
I was diagnosed about 6 years ago with hypogammaglobulaemia. As a result I was told by my old consultant who has since retired thank god that they couldn’t offer me any treatment for my RA so until approximately just over a year ago I haven’t had any treatment at all except for the odd steroid injection. My condition has deteriorated as you can imagine and debility has been a way of life for many years too long if you ask me. I’m under immuno too but somehow I’ve managed to stay healthy until recently I’ve had four chest infections in 5 months. I only had four rounds of rituximab in total and wasn’t monitored properly. My new consultant who is fabulous started me on baricitinib a year ago and I was taking prophylactic antibiotics with them but I don’t do well on antibiotics I’m allergic to many of them. Rheumy have tried to get funding for ivig therapy twice but because until recently I’ve been healthy I didn’t meet the criteria. I’m not sure that’s not the case anymore but we will see. I’m in Leicestershire. To be honest if I can stay infection free I would sooner not have immunoglobulin therapy but I will have to see what my next appointment throws up. Fingers crossed we all manage to get through this terrible health crisis and come out the other side intact and no more vulnerable than we are currently. I wish you good health and stay strong and positive that you’ll be ok it’s all we can do really.
I think you have had less than satisfactory treatment and wonder why you think immunoglobulin therapy is not the answer. Since starting IGg therapy, 3 years ago I have had only three chest infections, successfully treated with antibiotics, no UTIs, no shingles and no campylobacter which were really debilitating. The IGg therapy is a life saver. Please push for the right treatment for your conditions.
Do demand immunoglobulin therapy as essential.
Best wishes PamXn
The only thing that’s stopped me from pushing for it is that I’ve been healthy so haven’t really needed it. I’ve been really lucky no infections of any kind until now. The thing I’d like to ask you though is does it prevent you from travelling ? Are you able to have treatment for R.A. ? I’m already virtually housebound through lack of being able to take any meds and of course being extra cautious with Coronavirus but when it’s all over and I can get back on my meds I hope to be able to go on holiday and visit family who live in the south.
Hello,
Just seen your last post so wanted to get back in touch to see how you are getting on. My husband and I are now in week 4 of isolation. Rather tedious and missing family and friends.
To answer your questions: Yes I am still on treatment, a maintenance dose of prednisolone 5 mg, celecoxib, methotrexate and folic acid. Still having Rituximab 6 monthly as well but only a half dose. So far things not too bad although have had recurrent chest infections since December. Keep thinking it has cleared, finished fourth course of antibiotics this week so fingers crossed. Immunology insists I have 2-3 weeks of antibiotics each course.
My mobility is better now than for many years as in the last three years have had a right hip replacement and left knee replacement so travelling is much easier. Couldn’t risk surgery before due to risk of infection. Previously had been using a wheelchair as I have been doing on and off for 20 years. So have enjoyed some lovely holidays and being on the immunoglobulins have had no infections following flights.
When all this is over I hope you can get the right treatments and recover some function. Do keep in touch whilst all this is happening. Nice to have people to talk to. Take care and keep safe.
Pam X
Hi I’m on week 4 of isolation too. Finally got a letter from immuno saying I’m in the very vulnerable group of people which I had to ask for but this has enabled my husband to be off for 12 weeks too it’s a big weight off our minds. My husband only goes into work when it’s absolutely necessary and then he deep cleans himself and the house when he comes in. Shopping is only done once a week too and he shops fo his parents who are in their 80’s at the same time. So all in all we are doing ok too. Thanks for replying re: travel when on immunoglobulin therapy that’s a question I’ve been meaning to ask but never got around to. Stay safe and well and hopefully we will be able to see friends and family soon, I’m missing them terribly but they keep in touch via Skype and FaceTime so not so bad.
You too. Good luck.
Hello Pam,
It's a difficult time at the moment, it's good that your looking after yourself. That's al, you can do. I'm trying to stay safe and hope others are too. Look after yourself.
Xx
Wishing you well, sending an ocean of love and good vibrations your way. I hope that at some point they can deliver this at home so you can avoid going to the hospital. Please let us know how your doing. Take care. fingers and toes crossed.x
I've had ra for 26 years, now rheumy wants be to take biologic and antiviral very worried,looking for alternatives?
Worried about going to appointments.
New/updated guidance from Government publications for Clinically Vulnerable and CEV (Update 4/1/22)
Does anyone suffer with warts since starting immune suppressant drugs for RA.
Very irritable eyes
