I trust you all had as good a xmas as possible given the diseases we endure. I have been like an hermit and not even had one drink but it doesn’t bother me. I’ve never been keen on feeling out of control.
I have a question for Hidden
Since the first infusion of the Rituximab biosimilar I’ve noticed a big change in bowel habits, bloating in the area where my liver is & please look away if offended by talk of poo but I’m noticing pale stools plus floating of stools. Is this something that can happen with use of the drug please ? The bloating doesn’t hurt but I feel like I have a blockage in the area. To be frank I have not been eating well as my appetite is poor.
I also have noticed I feel really quite agitated the longer I stay up and sleep is extremely hard to come by plus I have bone pain.
I have been told to stop the azathioprine but to stick to 10 mg of prednisolone one day then 5 mg the next and then 5 mg one day and none the next, after a month.
Is this something I need to talk to my GP about or is this kind of thing quite normal when first going onto the drug please ? I’ve had no appointments to have blood tests and feel really quite abandoned. My next appointment as it stands is in April.
Thank you in advance & I hope I have addressed this to the right person. Apologies if not. The lack of sleep and agitation are really getting me down. The bowel stuff worries me. Oh, I had a depomedrone shot of 120ml of prednisolone just 2 weeks prior to the treatment as I could not rise from my bed or hold a cup due to the bone pain so I really should not be having bone pain so soon after. Normally the Injection lasts around 4-5 months.
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Balderick
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I am feeling the same at the moment. I have been told that the bloating is probably the pred. Mine seems to be worse when taking omeprazol so I have not taken it for 2days to see if it is. I remember I did have to come of Lanzoprazole for the same reason. I have some rani tardiness which I will try in a couple of days. Until then I am taking gaviscon.
My appetite is also rubbish. I am currently eating jacket potatoes and salad. And milky puds. It is all I fancy.
Go to you GP and see what they say. Or ring your consultant help line if you have one. It's a long time to suffer till your next appointment. If you don't get in touch they will assume you are well.
I remember when you start reducing pred you feel a bit worse at first.
It seems you and I are in the same boat, very much so ! I have ranitidine & omeprazole and I am told to take them without fail and every night. 1 x rantidine and 2 x omeprazole but it’s stopping the acid but not the fluid build up on my lungs.
I do understand that the Rituximab is very new for me and am told can take up to 16 weeks to show real benefits in some. It does seem to have stopped the blood at least but not the bitter and yellow fluid that seems to come from my stomach and onto my lungs.
Can I ask, do you feel tender where the bloating is ? I do not and it’s actually not too hard when touched. My buddy who I met via siciak media, he lives in the USA and he too gets bloat, bone pain & chronic insomnia after an infusion. It was the 15th that I had my last infusion & I was awoken by the hip pain and chest being very noisy. I need help but fear that because I am alone and own my home that I could be taken into care & so I tend to keep quiet about certain things BUT please don’t think I woukd ever keep quiet if I thought I would be a danger to others.
I didn’t know the omeprazole can cause bloat but then again now I have read great Rituximab common side effects all over again it does say loose stool and some bloat can occour.
Thank you so much as your reply seems more relevant to the others as you are going through basically the same things as me
Thanks for your reply & sorry for the tardiness of mine. I’ve been unwell for what seems like forever & had it get myself into the right mood to reply if that makes any sense to you
Pale floating stools are typical of gall bladder problems - and that would also account for the bloating and poor appetite. It could be coincidence - I've looked but can't find anything about rituximab and gall bladder problems in the usual side effects documentation but that means nothing. I have found a paper which I think describes a case of cholestasis associated with rituximab but it won't download for me to read it all. Cholestatis is a reduction in the production or flow of bile - the bitter yellow fluid you bring back when you have puked and puked. It means you don't digest fats properly when there isn't enough.
Yes, you should mention it to your GP or even better to your rheumatology specialist nurse - I assume you have one? Stomach pain is one thing to be mentioned to your doctor when on rituximab anyway - in my book telling them something once too many is better than once too few! Is your urine dark in colour or are your skin/eyes a bit yellowish? Are you itchy? They are all also symptoms.
Sorry for the late reply. I have IBD and thenspecialistnin bristol, a Doctor,Tom Creed says I have elements of both ulcerative colitis & Crohn’s so I am left unsure as to which I have. The treatment is near as damn it the same as it is for vasculitis. I think that dr Clarke said that because of the steroids & various immunosuppressive drugs since being diagnosed in 2010 had saved my kidneys frim the vasculitis.
My lungs are the worst. If I eat anything with cream in it then it ends up on my lungs. I’ve been given ranitidine & omeprazole but it doesn’t stop the bringing up of what I can only descaribe as liquid food plus phlegm. This morning I was rattling so bad that I used an old inhaler that my dad ( RIP)used to get for COPD, the brown and blue inhalers. They were the only thing that habe made thwnrattling stop. On the plus side, I habe noticed very little blood coming up and this woukd habe syafyed off an episode of fevers before the Rituximab.
I am trying to keep a gallows humour here but it’s very difficult and I don’t want to say too much as I am in my 50’s and alone apart from neighbours looking in on me from time to time. I fear that I could be taken into care as I own my home and know how they “ dealt” with my parents.
I have left messages on the Rheumatology line but no replies as yet and also emailed my GP who asked me to direct this at the vasculitis specialists.
It seems to me that each time I think I am maybe getting a slight handle on this then something else comes along to smack me down. My disease has been labelled as GPA but also as anca generalised vasculitis & so that complicates things. The team here in bristol has 3-4 specialists and I see Dr Lynsey Clarke but also one of 3 others. Dr Harsha Gunawardena was first to see me but then I never got to see him after the 3rd visit.
I have made friends with a guy in the states who I find a great help. He has made me feel better in sharing my experiences with him and he also suffers bone pain and insomnia after the Rituximab.
Thank you for your reply. It’s very kind of you. I don’t post often as I have never used any type of forum before as I admit that I get scared when I read some of the posts. I am not afraid of destiny but I am afraid of the constant suffering, travelling to various hospitals and the many biopsies and tests. I AM grateful for the help but travelling to Cambridge alone worries me. I find driving further than 40-50 miles quite worrying. Maybe some kind of phobia even.
In closing, do you think it would be unreasonable of me to ask for a video/FaceTime consultation with Addenbrookes? They don’t do any tests other than bloods & surely they could be done here in Bristol ?
To be frank, I feel like the team in Bristol don’t know what else to do so they keep putting off appointments and my next one is in April.
Please feel free to be totally frank as I think I need that right now as I have had an awful Xmas and haven’t ventured outside if the house since my last Rituximab infusion on the 15th.
I have inflammatory bowel disease. They specialist says it’s a mix of both Crohn’s and colitis. One of the things that can come with this is PSC or primary schlerosing cholangitis. Apparently around 2% of IBD sufferers go onto get this & a transplant is the only way to help. I’m getting more & more of the lung rattling and breathing problems too as liquid food keeps coming up onto my lungs. I have now been put on ranitidine & omeprazole to help but I have to clear my chest most mornings now and it’s a pale yellow liquid that comes up.
I fear saying anymore to the doctors as I feel I am a burden as it is. For example, I had my last Rituximab infusion on the 15th and have had really bad major joint pain as well as the lung stuff. My gut feel is that dr Clarke really does not know what else to do but I’m not angry or upset as it must be very difficult to try to deal with someone who has multiple illnesses. Travel to Addenbrookes is just not possible with me this unwell but I fear saying anymore for fear of having my license taken. Can drive up to 50 miles on my own ok but 3.5 hours to Cambridge is overwhelming and I cannot find anyone to give me a lift. I am on disability so paying over £140 is too much & this was the cheapest quote I got from taxis.
If ANYONE knows of any organisation that can provide help with travel then please let me know.
Thanks for your reply and sorry again for my late reply,y
Yellow and bitter fluid is what is coming up from my lungs. I also have Crohn’s/colitis is there is a risk of PSC or primary schlerosing cholangitis with this & liver transplant is the only way of treating this
I was itchy for around 5 days after the infusion but ok on that front now. Piriton antihistamine helped me. I just have this bad bone pain and continuing lung problem ongoing but at least I’ve noticed very little or maybe even no blood coming up now so thabk god for small mercies.
It seems that if I have anything with cream in it then it sets this off. I had one very small glass of baileys and I started to get the rattling lungs very quickly and while the ranitidine & omeprazole helped to stop any acid, it didn’t stop my lungs from rattling and filling with this yellow fluid.
I sometimes wonder if I’d be better off not saying anything. I try to fill my time with reading books or self help stuff but my health seems to be deteriorating in the neantime.
Thank you for your reply and sorry for my late reply. I’ve been quite low with the bone pain over the Xmas period and stupidly allowed myself to run out of the tramadol that I take when the Pain gets too bad. I have a GP appointment on the 2nd but have placed a repeat prescription in via the electronic system right now.
Thanks for you reply & apologies for my tardy reply. I have not used forums before Apart from a rugby one and that got very argumentative so I quit it.
There is really no need at all to apologise for being late replying - that is the good thing about the forums, people are around at all sorts of times.
There is no harm in emailing Addenbrookes and asking what they think/are able to offer.
Please don't feel you shouldn't mention things to the doctors - they are there to help you manage your illness better and they have to know all the clues to be able to do that. They are just specialised detectives really!
I don't know much about volunteer transport in the UK - here where I live the White Cross have such drivers and if you join you get 6 "free" transports per year! I have just googled it and the Red Cross does a similar service - whether that applies for longer distances I'm not sure but it won't hurt to ask them.
This is a link to another group, again it may be just local transport they offer:
I wouldn't feel too bad about not being able to drive far - I know lots of people who find more than 50 miles a major expedition. If you are on disablility benefits - do they also help with the costs of hospital visits?
I do hope you start to feel better - and I'd avoid the Baileys! Is it just cream or is it anything with fat you struggle with?
Firstly, thank you for the reply and the kindness shown. I find that butter and fatty things and especially ice cream, will kick off a range of issues with me but the Baileys seems to be the one thing that starts those issues off very quickly and stay with me for at least a whole 24 hours afterwards.
I try not to bother the Doctors with much of the smaller stuff as I have learned how to deal with them myself BUT I hear what you are saying as it could just be part of a bigger picture. My main worry is suffering. I have kind of reconciled myself to just being unlucky to have 3 chronic diseases but I am genuinely fed up of turning down invites and not being able to plan anything. It’s a bit like having an invisible sign on me saying unclean !
My life has changed so much. I used to be the first person on people’s party lists just for comedy value in itself. Now ? I am lucky if anyone phones me. I do not blame them either as there is only a certain amount of times that people will call you when they know that the answer will be no or I just can’t tell you if I will be there until the day. As you know each day brings its own twists & turns and I do sometimes wonder if the worry of feeling weak when around a good number of people can bring on symptoms as I have had this happen a fair few times.
Anyway, back on track. It seems that any fatty foods will kick me off but the bacon & sausages are the exception to this rule. If I plan to eat anything fatty then I make sure that it’s before noon and I end up ok but if I have ice cream or baileys or butter after around 4-5 pm then I’m going to be in for a rough night. I get what the good doctor explains to me as rigor. This is when I get the feeling of being ice cold but I have a really high fever. I get fever in excess of 103 & have been hospitalised several times with this. I try to not eat anything after 6 pm now and this makes my chances of having a decent night much better. I also have to be very careful of what I eat due to the bowel disease.
It just seems like I am constantly having to monitor what I eat and when I eat it plus, now I have reached that milestone of being a Male in my 50’s it’s the Male MOT clinics and prostate stuff they check for. It seems that I’m either at my GP surgery or hospital once a week at least and sometimes more.
Thanks for the link. I get no help with travel expense and have tried to talk about it a couple of times but Rheumatology Doctors are not going to want to waste their time taking about that I imagine as I’ve had no real help when I have asked.
Wishing you a happy new year
Hi Balderick,
Sorry to hear you have been feeling so unwell. As others have said pale, floating stools are something that need to be reported to your GP at least. Do you have regular liver function tests ( LFT's )?
I wonder if part of how you are feeling is due to the quick reduction in prednisolone? How long have you been taking them, if it's for quite a few months then that's a quick reduction. Do you have a Rheumatology specialist nurse you can contact?
Sorry forthe late reply. Oddly enough I went back to 15mg of steroid and feel a bit better so you could well be right.
I keep having what the specialist calls respiration. Food keeps on coming up onto my lungs and I rattle badly when I cut the prednisolone. I’m trying my best to be stoic but I’ve had a lot of bone pain in the mornings since I had the Rituximab infusions but my fellow sufferer in the USA says he gets the same so at least I know why and that calms me some.
Thank you for your reply. I will always reply but somedays I just can’t face it, if that makes any sense so I apologise for my tardy reply to your kind comments
Wishing you a happy healthy and prosperous new year
PMRpro I now have a pretty bad chest infection. It’s one thing I get often and was one of the things that led to the discovery of vasculitis.
The main problem is that I have the IBD & when I tame the antibiotics that flares right up and I end up going to the loo up to 30 times a day, passing blood and liquid. Apologies to those of a sensitive nature. I have let a couple of these infections just run their own course but, of course, I wasn’t on the rituxan at that time.
Do you think it could be dangerous if I say nothing and try to let it run it’s course please ?
I had a copy of a letter that Bristol Rheumatology sent to UHB ? Does anyone know where that is please. It’s specifucalky about my lungs so I will find a way to get there once I get an appointment. The last time I had a really bad chest infection I ended up unconcious and taken to hospital by ambulance. They said it was sepsis and I was treated with vancomycin and intravenous steroids. I was told it was touch and go for the first 2 days as my lungs were filling up with phlegm & blood BUT my legs were throwing clots. I was unaware of this as I was in and out of consciousness for the first 3 days. They later told me they would normally have given medication to thin the blood but that it was too risky with my legs clotting ??
I have real,y run the gauntlet this year. I shall be very happy to see the back of it. 54 hospital appointments. My record is 83 in 2015 when they were going through diagnosis and various tests and biopsies
Since you are in Bristol I'd think it would be the University hospital of Bristol NHS Trust.
You really MUST tell the doctors all about all these things. Are they sure it is IBD - and not something connected with your vasculitis? But when you have these problems it is a good idea to tell your doctors - it is easier to prevent you ending up sepsis and needing the intenive care unit.
And hopefully 2018 will have fewer hospital visits
My specialist on the Crohn’s/UC is Tom Creed. The hospital is a university one so they get the trial drugs and I’m on the lists for trials. I do wonder if I should now come off of that, due to the Rituximab ?
I'd stay on the list - they have criteria to be fulfilled and they do vary from trial to trial so they'll just look at it and make a decision at the time. I wouldn't worry about it now - but speak to your consultant if it bothers you.
Ok and thank you. I just worry about the interactions of the various and copious amounts of drugs I’m on right now let a,one trial drugs. I end up googling the various drugs to see if some of my symptoms can be related
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