Am seeing my rheumatologist privately next week for a chat as I am becoming increasingly concerned about the number of infections I am experiencing whilst on rituximab therapy. I have been on rituximab now for ten years and it has proved to be a wonderful treatment for my RD of 43 years. It has improved my quality of life tremendously and reduced the pain and further damage to my joints.
This said I am now becoming worried about the frequency of infections. The past year has been very difficult. June15 UTI requiring antibiotics, R Hip replacement July 15 (successful), Oct 15 another UTI(attended GP and told her I had a UTI) but she admitted me to Addenbrooke's with suspected appendicitis. Discharged 3 days later with antibiotics for UTI! November - February problems with left knee which cleared with steroid injections. March shingles again for second time, treated with antivirals. March - April rituximab infusions. May severe respiratory tract infection which required 2 courses of antibiotics.
July went on holiday to Portugal and developed gastroenteritis. Saw doc in Portugal who wouldn't prescribe antibiotics. On my return went to GP when I developed shingles for 3rd time and put on antivirals. Told him about gastroenteritis. Took in sample following day. Had to visit GP again 2 days later as I was very ill with symptoms of gastroenteritis. I was refused antibiotics until results of sample were known. I told doc I thought it was campylobacter as I had this about five years ago. Two days later results returned confirming campylobacter and started on antibiotics! Just to emphasise this wasn't just a tummy upset, I have lost 6 kgs in 21/2 weeks and felt absolutely wretched with that and the shingles.
This isn't just a tale of woe, I am interested to know if others are experiencing the same problems. Do you ever get asked at your rheumatology appts if you have had had any infections? Are the experts aware of the prevalence of so called minor infections? If any of you a have had shingles or campylobacter would you describe them as minor infections?
Think it would be useful if our GPs were more aware of the implications for patients who are immunosuppressed who develop viral or bacterial infections and perhaps listen more closely when we tell them what we know is wrong with us. Don't get me wrong, don't want to put the medical profession down. I am an ex health care professional, was a nurse and graduate psychologist & feel competent to evaluate my own health.
Would appreciate any response about your experience of rituximab or other similar drugs and infection.
Best wishes Pam
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While on enbrel, and while attending med school (so, I'm around bugs while on rotations), I've had impetigo, neutropenia, my CD counts are all off, numerous viral infections, and severe hematochezia whose cause has not been determined. I get the same thing you do at the GP. I think that I need to dose down or even change anti-TNF drugs. I also feel like there needs to be new protocol for antiviral immune support for us patients. Support without revving up our anti-immunity. What do you think?
Definitely agree about the much needed new protocol for those with reduced immunity. How do we go about it? That was why I posted. Wanted to evaluate the extent of the need for it, and by the number of responses I have had there is a need.
Have been looking at some of the research on the subject and it is rather scant.
It's so hard because anything we bring to rheumy's attention is looked at as anecdotal (read: unproven). I am currently taking a vitamin pack from melaleuca. It has helped, and I just started.
Hi Pam. I am not on Ritiximab and have not ever been on a biologic drug to date - but suspect I may be offered it soon for primary Sjogrens/ secondary RA, so am interested in learning more about people's experiences of it. I must say that it sounds as if you are having a rotten time with your health - you poor thing.
Last year was a little similar for me with four week long hospital admissions for various acute infections. Plus a bout of pneumonia prior to these. I wasn't on any immunesuppresant medications at the time though but had suffered a traumatic lumbar puncture followed by a terrible time trying to come off Duloxetine the previous month.
Two of these subsequent admissions were caused by a pancreatic reaction to Azathioprine, which the surgeon misdiagnosed and treated as a UTI sepsis. I knew exactly what was causing me to be so very ill but the surgeon didn't seem to trust my judgement and administered IV Gentamicin with amoxicillin. Before this first admission, a duty GP said I couldn't have pancreatitis or I would "be on the floor screaming with pain". My own two GPs insisted I must have Cholecystitis - despite the scans showing I clearly didn't. It was never acknowledged properly on my records until I wrote to my new rheumy and GP describing the two Aza related episodes. I've had to flag up all four of my drug allergies to get them formally listed on my hospital and GP records.
So my feeling is that you are right that GPs and other general doctors, surgeons etc need to gem up more on the potential risks that attend these powerful medicines. And if they don't know enough then they must at least learn to trust their patients more when it comes to us knowing our own bodies and improve their abilities to listen harder than ever to our descriptions of symptoms. Most of us do our research before taking and while on these drugs.
I hope your rheumatologist can help you find a way forward with your treatment for your RD and that others comment here on their experiences with Rituximab.
Thanks for your reply. Glad to know I am not alone in my experiences. We need some new guidance for docs with regard to those of us who are immune suppressed. You sound like me. Have always tried to inform myself on this disease and manage my own case. Can be difficult though if the docs don't listen.
Sorry to hear you're feeling so bad. I've only just started on Rituximab and am still waiting (and hoping) the effects will kick in soon. I take antivirals daily as a preventative measure so I don't suffer the awful cold sores I used to get when on Enbrel, it's more tablets to take but at least I don't get cold sores any more. You could ask your GP if the same approach could prevent more shingles?
Good luck with your appointment with the rheumatologist.
Many GP's or other medical professions apart from rheumy specialists have very little knowledge of the 'biologic' group of treatments. Many had their training before these were widely used or they may only have a few patients within their practice using these drugs. I try and keep the medicine leaflet with me in case I have to see anybody if only to get the spelling right and it has the alternative drug name on them.
On Enbrel I had more sinus problems but on other biologics I have been fine. On Abatacept at the moment and have been running very low on neutrophil count and white blood count for the last year but so far no issues.
Looks as if everything is jumping on the bandwagon for you at the moment. Hope you get some answers. Farm
3 treatments with Rituximab at about 6 monthly intervals back in 2006-8 put me into remission, only needing a 4th in June 2015. While on the 'regular' treatment in 2006-8, I experienced more cold sores (Herpes Simplex) than normal. otherwise no extra infecions noticed.
Hi there not really introduced my self I've had ra since 1994 been on all drugs that available was 10 years on methotrexate which then became ineffective I'm now going in on wed for my 6th cycle of rituximab my very 1st cycle of treatment lasted 18months but since then I seem to need it every 6/8 months the unit I'm under as controlled my ra for 22years iv not had infections from my treatment as my unit as gone into depth how to keep away from crowds etc so after my treatment which is very much needed. I hibernate and inform family and friends if they feel poorly not to visit as we are all aware when we feel poorly it hits us and we go downhill very fast I harp on at them I can't afford to be ill as we struggle so much with every day issues fingers crossed after treatment I'll be bouncing and able to do some things around the home hope my post helps take care and keep smiling
Thanks for your reply. I always find that I am at my most susceptible to infection from 6-8 weeks following treatment. Sure I got the chest infection after flight home from Jersey and campylobacter infection caught in Portugal!
Am as careful as I can but enjoy my holidays and am not prepared to become a recluse. Interested to know that you have rituximab without metho as I was told the two should be taken together.
Hi there. Clinical studies show that both drugs taken together is far more effective alas this wasn't in my case I do class my self a bit of an oddity on the medical front I baffle them and myself every one so different we like a box of chocolates just don't know what we going to get take care
I'm on humira and MTX and feeling well (hoorah) so have increased the gap between injections and decreased the MTX. So my WBC is now higher than its been in years!
However although the local consultant is happy about the MTX she wants me to delay reducing the humira for another year. I'm also seeing a consultant at the Royal Hospital for Integrated Medicine and he's happy with me reducing the humira, so that what I'm doing.
A bit of history on this type of thing here.........
I've had a bladder problem with recurring frequent UTIs for getting on 4 years. I was on mtx when the problem started and both my old rheumatologist and I decided to see how I went by stopping the mtx in the hope that this would reduce the number of UTIs I was getting, plus we could see how my RA was without meds. Unfortunately the pain became too much after approx 2 months so I had to go back on mtx. Some time later mtx started to lose it's effect and after trying a couple of other meds, which also weren't much help, my new rheumy decided to start me on enbrel. Unfortunately for me this turned out to be a big mistake! The enbrel worked a treat as far as the RA was concerned, but a couple of months after starting it I developed a UTI, which although responding to antibiotics apparently managed to get into my bloodstream with the result that I was admitted to hospital with septic arthritis in my hip, which required two bouts of surgery, 10 days in hospital and 6 weeks of powerful antibiotics to clear the infection. According to my orthopedic consultant at the time, enbrel played a significant part in allowing the UTI bug into my bloodstream and told me I should not take it again.
To try and cut a long story short... after returning to mtx for a few months following the sepsis, rheumy stopped me taking it after I developed another UTI about 5 months ago, which I still have despite being treated with the appropriate antibiotic. So I'm currently taking hydroxy, which is a lot weaker than most other RD meds so has less effect on my immune system. The hydroxy does help a bit along with pain relief and anti-inflammatories, but life has definitely become a struggle for my wife and I.
Obviously my current UTI failing to respond to the appropriate antibiotic is a concern, but last week I had a bladder stone zapped with a laser, which my urologist seems confident is/was the reason why my current UTI is proving so stubborn - fingers crossed he's right on that one! I've got a week's antibiotics left to take so will find out soon after I've finished them.
I see my rheumatologist next month and providing the UTI has cleared, she is going to suggest that I start stronger medication as I am in a bit of a mess with my RA, but and it's a big BUT, even if the UTI has cleared, I'm not sure I want to go on anything stronger than hydroxy due to the risk of getting sepsis again. So I think I'll be soldiering on for as as long as I can with how things are.
Interestingly, following the sepsis episode I decided to go cold turkey as far as all RA meds were concerned. I managed to last 9 months before the debilitating pain became too much to bear. For most of that period I never had one UTI! Reckon I would have had at least 2, probably 3, during that that time if I was taking mtx.
So sorry to hear your story. My infections are relatively minor in comparison. Really emphasises the serious effects of infection in people who are immunosuppressed.
In my opinion more research is required on this subject and docs need to be better informed on the risks associated with these drugs. Reporting of infections whilst on these drugs would increase knowledge as to prevalence as the research seems to be rather scanty.
Making me think about my meds. This is why I have booked the private appointment with my consultant to have an in-depth discussion. Not possible on an NHS appt.
Have been on metho for over 30 years. Do you think the adverse effects are cumulative over time?
Do hope you find a treatment that works for you. Best wishes Pam
I think you are definitely doing the right thing having a private consultation. I too recently booked a private appointment with a urologist because I just could not get any solid info off anyone regarding my conditions (very frustrating!) especially on this long standing UTI, which is a serious concern due to antibiotic resistance - the type of bug I usually get has become resistant to at least two types of common antibiotics. I later cancelled it because I had a cystoscopy which showed a bladder stone, and as previously mentioned, my urologist seemed pretty confident this is why the UTI is not clearing. In fact he was so confident that he told me there was no need to go ahead with my private consultation.
As for doctors being aware of the issues with a compromised immune system and infections. Well, if my GPs were then they certainly didn't give me that impression. I always thought my UTIs were being treated very routinely, ie. like a young girl with a water infection for want of a more apt description. The sepsis episode seems to have prodded them out of their complacency and they now send all my urine samples straight off to the lab, which is something they never did before. My rheumatologist seemed more aware of the situation, I don't think she fully understood the risks involved though and seemed taken aback to find out I had sepsis. Also, I'm not so sure I should have been prescribed enbrel, but that's easy to say with hindsight and my RA was not good at the time so she thought she was doing her best to help me. Anyway, that's in the past and I can't fault my rheumatologist since the sepsis as she is very careful how she treats me....she reckons that it's like walking through a minefield trying to find the appropriate treatment. Can't help thinking on times that I must at the least be a very rare case. I might be wrong, but I still can't say I've got 100% faith in my GPs though.
I've had RA for nearly 14 years and bladder issues for approx the last 4. It's difficult to say if the adverse effects are cumulative over time. Hope I'm wrong but I do think that things have been gradually going downhill for me since getting the bladder condition and feel I'm in a vicious circle regarding meds and side effects etc. All I feel I can do is as I'm doing now, and that is to take the least amount of meds as possible even though it means having to put up with more pain and discomfort than I would if taking stronger meds.
Sorry for the long and rather depressing post but I'm just speaking as I find.
Hope you can get some solid advice with your forthcoming consultation, and that things work out fine for you.
I'm going on Rituximab in a few weeks...having had shingles 4 months ago & I still have the bad 'pins & needles' headaches. I'm wondering if I should ask to delay having the infusion until these headaches have gone? I've been on both Mtx& Leflunomide & although I had to stop both because of side effects I didn't have any infections whilst on them. My GP just says ask the Rheumy......doesn't seem to have any opinion of her own.....as you say GP's certainly need more RA training!
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