Do I Gamble Lungs or RA, Mattcass

After a discussion with Fran about my RA situation I am caught in two minds either accept what the RA is doing to me or do I gamble with my Lungs, From the offset I was informed that only one type of RA treatment I could receive was Hydroxy which has not worked up till now as any other RA treatment could and would do my lungs serious damage, At that time I was in a bad way compared to what I am now, Everyone assumed I would get some sort of pain relief with a combination of meds when the bad times hit me like they are now but this is not the case, I asked Fran what would the Chest Consultant say if I asked them to allow another one of the RA treatments I don’t want to do this but I have been to hell and back this week in fact over 4 days I used 7 days meds and not one worked even now my wrists are very sore and getting worse every day. Has anyone been in this situation I’m in now?

8 Replies

  • I think not so many people in your situation Matt bless you! Don't know what Fran thinks but she seems a very sensible caring woman.

    Both situations are bad never mind together. In balance do you think pain from RA or not being able to breathe from lung damage would be worse, I don't envy your dilemma at all. I suppose you could chat again with the British Lung Foundation or your chest specialist nurse to see if they could help you. Then you will be forearmed for the chat with the chest specialist.

    Does your hospital have an actual pain clinic with specialists to discuss further increasing your pain relief , it looks as though just the status quo isn't enough. Have u tried acupuncture yet? It was one of the things that controlled my knee pain for nearly a year. Done b my specialist physiotherapist?

    Of course I am waffling again with little bits of thoughts but hope you get the advice you need very soon. Xxxx

  • What a dreadful dilemma you and Fran are facing Matt. I wouldn't begin to know how to answer it but personally I think I would probably keep the lungs as good as possible. But then we all respond differently to pain of course. Some can bear what others find intolerable.

    But RA can flare up and die away just as quickly as it arrived and there are, as Allanah pints out, some more holistic or complimentary things you can get for your RA such as acupuncture and tai chi? Also you may be able to get counselling and attend a pain clinic perhaps - whereas lungs are more immediate. Those are my very little and probably not very useful thoughts on this but I really do feel for you terribly. X

  • I have read your post. I am afraid I can only offer you my best thoughts about your choice. Think Allanah has given you the best advice. Anyway best wishes for the right decision. Love Annieseedxx

  • Hi again - I also wanted to point out that you need to add to the pros and cons (or gamble as you describe it ) that RA drugs don't always work for everyone either and, lungs aside, there can be other unpleasant side effects. Tilda x

  • Hi Matt, you really need some expert input here. It cannot be beyond the scope of the various depts to have a joint consultation with both drs at the same time. I have has a Skype-type link up with my rheumy and renal consultants whilst I was in the room - and even my dentist has phoned and spoken to the renal consultant [about steroid cover for a dental procedure] whilst I was in her surgery.

    It seems that pain control is the immediate issue followed by joint protection without damaging your new lungs. Morphine patches can be very helpful when nothing else is working. I would phone the secretary for each consultant, explain your situation 'in extremis' and ask them to urgently consult with each other [this week] and come up with a Care Plan and some solutions.

    I'm very sorry that you are in so much pain, know that we really hear you - and are sending strong positive and supportive thoughts in your direction.

    Cece x

  • Hi Matt, my thoughts & prayers are with you & Fran in that you choose the best course of action you feel is best. Everybody has given such good advice and I really hope you find some very much needed relief asap.

    Take care & big hugs xx

  • Hi Matt, this is really tough and I am sorry to hear you're having such a horrendous time. I agree with Scouser - I think it's essential that your chest consultant talks to your rheumatologist & you're involved in the discussion about treatment. I'm actually going to try & speak to both of them on Monday. I was recently diagnosed with bronchiectasis but before I knew I had lung problems was told that it it is ok to start a biologic (Humira). I hope that the experts can give you the right info to help you make this difficult decision.

    All the best, Fran

  • Hello, my name is Trulyfedup. I have only joined this site two days ago so am new to all this. I've had R/a for over eight years now I also have cronic leukemia. The treatment for both is quite powerful. The methatrexate makes me vomit,have mouth ulcers blisters on my torso. I am very near the thought of coming off MTX but as we both know it is a progressive I am nervous of coming off and taking my chances. My GP is all for me coming off and having pain relief..which includes morphine now and then but consultants want me to continue...I am so out of breath at the moment I'm having a base line X-ray on my lungs. I am frightened to make a choice to be honest. I hope for make a choice that gives you quality but its a very difficult crossroads to be standing at.

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