Rituximab and Lung problems

Colin1
Colin1 Member Posts: 1,769
edited 24. Feb 2012, 05:53 in Living with Arthritis archive
Hi all, as most of you know I have a whole bunch problems RA PA FM heart disease but doing OK. After my heart attack I started to get breathing problems. Shortness of breath when active not terribly bad but enough to be of concern, Round this time I was started on Rituximab at the time my disease was very bad and I spent most of my time in a wheelchair and struggled badly coping with the pain Disease wise I have had a really good 17 months and am now out of the wheelchair not pain free but its changed my life dramatically.
However I am starting to go down hill again and in need of a third lot of infusions I see my consultant on the 27th Feb. But I have a snag my lungs have got worse and it now takes me all my time to breath I’m told its not Fibrosis but COPD by The Lung consultant but as its getting worse he’s scratching his head and can’t come up with an answer. I have read all sorts of stuff on the WWW and its not uncommon for lung problems with Rituximab. I’m scared of the lung disease but scared of going back to the way I was and in the wheelchair. When I tell the Rheumy next week she will stop my infusion of rituximab but if I could get a fix for the lungs I could continue with it. RA PA and the meds we use are hard to understand but I feel the Lung Specialist has a lack of knowledge regarding the type of meds we take, I feel like I have had to excerpt myself with some health pros to get any results. Have any of you suffered the same problems or similar problems with the lungs.
Sorry to go on its not a moan I’m just looking for information.
Colin

Comments

  • towyview
    towyview Member Posts: 25
    edited 30. Nov -1, 00:00
    Hi Colin,

    I am not on Rituximab but I have been on Enbrel for 7 years with wonderful effect.
    For the last 18 months or so I have had a cough which lasts for a few weeks at a time and also began suffering from breathlessness. Rheumy says see your GP, GP says see your Rheumy.
    In all I have had CT scan of my lungs (some inflammation), lung function test, (inconclusive but could be asthma) GP took me off blood pressure tablet because it could cause cough etc. This caused palpitations and and the next GP doubled my blood pressure med. I have now had a heart monitor and wait the result.
    As you say, Colin, your GP and other med people do not understand our medication and there is never a straight answer. It would be nice it they could communicate or we could see them all in the same room at the same time. I hope I can solve this as I really do not want to stop the Enbrel. Hope you can solve your problem too.

    Take care
    Dorothy
  • tillytop
    tillytop Member Posts: 3,460
    edited 30. Nov -1, 00:00
    Hello Colin

    I have just spent about 20 mins typing a reply and it "disappeared" grrrr so here goes again (and hopefully I can remember what I said the first time) :roll:

    I am so sorry you are having problems with your breathing and worries about the Rituximab. I kind of know how you feel because my Rituximab has been on hold pending chest investigations (amongst other things) and I too have been going round the "what if" loop re joints vs breathing problems. I know my breathlessness is not caused by the Ritux because I have had it since before the Ritux was started but I have been concerned about whether I will be allowed to have it while they don't really know what's going on with my breathing.

    A couple of things which might help you:

    At the hospital recently I was chatting to a man who has rheumatoid lung disease and he was still able to have his Rituximab infusions. My understanding is that rheumatoid lung disease is not one single condition but more an "umbrella" term for various lung complications of RA.

    I know from my own recent problems that, apart from drug reactions, RA itself can sometimes cause lung problems and, like you, I was initially suspected of having lung fibrosis, either meth related or as a general RA complication. COPD was briefly mentioned to me too, because my Mum has a long history of breathing problems, but in my case I think that has now been ruled out. Has your chest consultant made a definite diagnosis of COPD for you? Do you know if he has considered bronchiolitis obliterans, as a complication of RA? The reason I ask that is because that is my current potential diagnosis and apparently it can be very hard to diagnose because chest x-rays can be almost normal, even when breathing is severely affected. I have had 2 high res CT scans now and they are still not completely sure. My understanding is that bronchiolitis obliterans and its evil cousin obliterative bronchiolitis are caused by inflammation inside the lungs and that they are managed by high dose steroids and sometimes by a particular sort of antibiotics and DMARDS.

    I have noticed that my breathing gets better with higher doses of pred and, unless I am getting you confused with someone else (apologies if so) I think I remember you saying you had cut down on your pred recently?. If that is the case, I just wonder if that is why your breathing has got worse again? Also, if you actually have some kind of inflammatory lung condition, could it be getting worse because the Ritux is wearing off?

    On a practical note, I wonder if it would be worth you trying to speak to a rheumatology nurse in advance of your consultant appt next week so that you could tell them what is happening. That way, if they feel it is appropriate, they may be able to speak to the lung consultant before they see you. I was lucky because my referral to the lung consultant came from the rheumatologist and they have been communicating directly, rather than me having to play "piggy in the middle" which does make things easier.

    I don't know if any of this is of any help Colin but I do hope you can get things moving forward again soon, both in terms of the Ritux and the breathing. Please feel free to PM me anytime if you think further discussion would help.

    Tillyxxx
  • barbara12
    barbara12 Member Posts: 21,276
    edited 30. Nov -1, 00:00
    Oh Colin I really do wish I could offer you some help, I knew from your post that you had been feeling better, and now this.
    I cant help with the meds but I just want to offer you my support, and I hope that things improve for you very soon.
    And if you need a rant we are always here.x
  • dibdab
    dibdab Member Posts: 1,498
    edited 30. Nov -1, 00:00
    Hi Colin,

    I have RA and take sulfa salazine and plaquinel, like you I have lung problems(11 chest infections in 14 months including a bout of pneumonia despite having had the pneumonia vaccination). I was desperate for answers so changed rheumatologist (after a battle with the authorities). The new guy is marvellous and immediately referred me for CT scan and xrays- it revealed I had bronchiectasis (a form of COPD) which is probably related to the RA- he referred me to a lung specialist who has prescribed a variety of medication including daily antibiotics, and physio support ot clear the lungs. It has worked for me so far- 9 weeks without a chest infection is great. So there is hope, hang in there and be persistent in getting the help you need.

    I hope that things start to look up soon.
    Blessings
    Deb
  • salamander
    salamander Member Posts: 1,906
    edited 30. Nov -1, 00:00
    I am very interested in this thread as am currently being investigated for lung problems by a chest consultant. I've got RA and was on Mtx then Cimzia and got repeated chest infections on both. Just had lung function tests and they were all good, much to my surprise as had a chest infection at the time and was feeling quite bad. Am waiting the result of a CT scan to look for bronchiectasis - which I was told was not a form of COPD but a result of life long asthma (which the guy who was doing the lung function test said he could see no sign of :o either the asthma or COPD.)

    I have always had problems with my lungs and had many infections but they are much harder to clear up on anti tnfs. Am about to start Enbrel and chest consultant says I must have a supply of antibiotics at home and he may put me on a small permanent dose like you dibdab. That would be my preference but he won't do that unless I start getting infections on the Enbrel.

    Hope you get some answers Colin but maybe it is the drop in pred as someone else here has said. It's seems to be really hard for some of us to get the balance right with our meds. I completely see where you are coming from as I had more or less decided to stay of the anti tnfs but the arthritis got so bad, changed my mind.
  • Colin1
    Colin1 Member Posts: 1,769
    edited 30. Nov -1, 00:00
    Hello Dorothy and thanks I hope you eventually get your meds sorted , Where Doctor talks to doctor and they all the people caring for you know whats going on and communicate with each other. That’s called holistic care and been one of the new buzz words around the health service for some time but it doesen’t happen and never will.

    Thanks Barbara its nice to know people think of you

    Hi Deb and thanks, it seems your having your own share of problems. Yes I got pneumonia it was quite bad I was in intensive care for a while My rheumy said it was the medication each time I got a chest infection it would take me longer to get shut of it. Glad things have settled a bit for you.

    Hi Salamanda yes it a bit like Hobsons choice with the Anti TNFs I got so bad I think I would have taken anything I got my first chest infection on Enbrel and must admit I never suffered with my chest until I went on Anti TNFs. I thought it was the Methotrexate causing it I hate that drug but it wasent.I do hope things improve for you too.

    Hey Tilly thats an epic looks like the first chapter of a book lol just joking Tilly. I have done quite a bit of reading over the past few days and the incidence of lung problems caused by Rituximab is quite high. But what the specialists investigating it say is that it hasen’t been getting reported on.
    Consultant says I do have bronchiolitis along with COPD but not what type it is he described it as a type of inflammation of the lining of the lungs and says he can treat this. should start that treatment next week.
    Yes Tilly I did talk to you about the pred I have been trying to get off it, I got down to 7.1/2mg but put it back to 10mg my GP says I have become steroid dependant. I want to increase but have been trying to get off them for so long. I’m going to ask my rheumy can I see the encronolegist sorry about spelling. It seems I’m doing better managing myself but this breathing I cant seem to do anything about. My Rheumy Nurse is really nice I have now left two messages on her answer phone but she hasent got back yet and I see the rheumy in 5 days. Thanks alot for post and yes it does help some of the things you mentioned have been going through my mind. Just trying to hang on now to speak to Rheumy and Lung consultant. Thank you.
    Thanks all
    Colin
  • tillytop
    tillytop Member Posts: 3,460
    edited 30. Nov -1, 00:00
    Hello again Colin

    Sorry about the "War and Peace" :lol:

    Would be very interested to know what they give you to help with the bronchiolitis Colin - and really hope it helps you. I know what you mean about the steroids and how hard it is to reduce.

    Really hope you hear back from the nurse soon Colin and that something can be done soon to help the breathing. If you need to talk to someone expert about lung stuff you might like to phone the British Lung Foundation helpline (if you type "British Lung Foundation" into Google the details will come up). I talked to their helpline and they were great. Their website also has some good info.

    Thinking of you.

    Tillyxxx
  • Colin1
    Colin1 Member Posts: 1,769
    edited 30. Nov -1, 00:00
    Hello again Tilly you really are a diamond thank you so much. I had a bit of an off day today so not been here, My rheumy nurse phoned today but we decided i would wait as its only 6 days to see Rheumy. But she did say she would mention our conversation to the Rheumy. Yes the Chest consultant kept putting back my appointment and i had to contact the BLF they where very good and after phoning them i got a call from my consultant who saw me that week. They put me onto a nurse specialist and she was really great. Anyway enough about me. you seem to be having lots of problems yourself. I tend to run on auto pilot but coping with this breathing is getting harder to do and i am so tired all the time. How have you been coping with it on top of all the other stuff you have going on. once again thank you
    Colin
  • Aprilann
    Aprilann Member Posts: 49
    edited 30. Nov -1, 00:00
    Chin up Colin - that's what my daughter says to me.

    I was diagnosed with bronchiolitis obliterans seven and a half years ago - apparently connected to RA which I have had for nearly 32 years. No exaggeration here my hands are SO badly deformed - I was only put on mild medication years ago - now they have anti-TNF which I don't know anything about (you don't see hands like mine these days). Christmas 2004 I had lung failure whereby my life was at risk but with high dose steroids, it could have been 40mg prednisolone, but definitely 30mg, antibiotics, oxygen and a nebuliser I recovered. I was that bad my consultant sent a letter to the lung transplant consultant for me for an appointment but I was turned down because of an illness I had only a couple of years previous. I was put on azathioprine for my bronchiolitis obliterans (which is an immuno-suppressant drug and is also used for RA which I think did the trick because my breathing is a little better). A year and a half ago I did some research on the internet and found an antibiotic called azithromycin for bronchiolitis obliterans which you take three times a week and I told my consultant and he then prescribed it for me. Shortly afterwards I was admitted into hospital with a chest infection and this time I was prescribed a steroid inhaler called Seretide (or Serevent -but it is definitely a steroid one (it's upstairs, oh dear, at the moment so I can't check)). They did another CT scan and now call it bronchiectases (never smoked). Since then I have been able to reduce prednisolone to 9mg and would be keen to try 8mg but unfortunately my RA is flaring up a bit so can't and I don't have to use the nebuliser four times a day now - that had atrovent and ventolin mixed together. Due to high dose steroids I have osteoporosis and broke a vertebrae in my spine last year which has left me with low back pain but NOTHING like the pain when I fractured my spine. My present position is a brace on my left arm due to a big fracture and now a healed fracture to my right wrist (which didn't bother me before but now does and sticks out considerably) which I received five days before Christmas. I was knocked off my mobility scooter by a man looking over his shoulder apologising to someone for knocking into them and at the same time walking into me, saving himself on my left arm and knocking me to the ground on my right side. They are hoping it will heal on its own and I must say it is feeling quite good. I can't have a general anaesthetic. This last problem has really knocked me for six and so I am feeling pretty down at the moment. When you have been on a high dose steroid for a few years you feel in good spirit but coming down to 9mg the misery starts and I find it very hard to smile. The good thing is my breathing is a great deal better - I'm sitting here knowing I don't have to use the nebuliser before I go to bed and my consultant was surprised how well I have done.
  • Colin1
    Colin1 Member Posts: 1,769
    edited 30. Nov -1, 00:00
    Hello April and thanks for your resoponce, Chin up is one I always use too, I do get fed up a bit from time to time but I try not to let myself get to low. Now my story some how seems to pail into insignificance along side yours.
    GOSH April I feel so sorry for you your having an awful time I do hope things improve for you soon. I have made a note of the medications you talked about and ill take it with me when I see the consultant. I am taking stuff to prevent the osteoporosis
    But I have my doubts I have kidney stones and the doctor want me off the osteoporosis
    Meds as it is one of the causes of calcium build up. I think you are spot on and that I may improve with an increase in steroids but having spent years trying to get off them I will wait and talk to Rheumy. I like you have had RA and PA since 1982 but was never told until about 7 years ago when I got really bad. My hands and fingers sound like yours with the deformity. And I think perhaps the RA is causing the lung problem as its in my muscles, my throat, voice box and my eyes. So there we have it, Once again April thank you so much i hope your feeling better soon.
    Colin

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