Bronchiectasis or other lung problems and inflammatory arthritis

[cofdrop-UK]

I am struggling so much with the pain of inflammatory arthritis and finding a drug which will help without b******** up my immune system with regard to the bronchiectasis.

I have tried hydroxycloriquin and they gave me migraine. For the last two weeks I have had a break from the troublesome HI and so started with sulphasalazine. I felt very wheezy on these and my stomach was so sore and raw it radiated up in my chest and I have been struggling to walk around because of the effects of the drugs and with the pain of the arth.

I am so concerned to try any more DMARDS eg methotrexate with regard to my lungs.

The pain has me waking up about every hour or so when I need to turn in bed and then I have to sit up to do so.

I am wondering if anyone has found anything which has worked for them. I am conerned the only answer will be steroids.

Any advice or experience will be appreciated.

With love

Cofdrop

[valm]

Hi and welcome Val

[Hidden]

Hi I use cortaflex - natural product. created first for horses joints, and now for us too worth a go, it's dear and in my opinion worth it ...check with your doc first though if you decide to buy some.

[BugsBunny]

Hi, Have you been to a lung specialist. The immune suppressants that I take for my Interstitial Lung Disease also knocks the rheumatoid arthritis on the head. Welcome to the forum.

Mandy

[Gilliam]

Hi I used to be on indomethacin and Humira (an anti TNF treatment) before my lung disease reared its ugly head. My lung specialist thinks the Humira caused further complications with my lungs. I am now on 10mg of steroids and mycophenelate (an immune suppressant). They have been keeping my arthritis pain (at least) under control, however this last week I feel as if the inflamation has come back particularly in my hands. Not sure what has caused this. I don't like being on steroids but I don't seem to have any alternative. Hope this helps.

[cofdrop-UK]

Thank you so much for your lovely welcome and for your helpful replies.

Julie - I have heard of peeps who use treatment originally used for horses but I didn't know the name of it, so thank you.

Mandy - Yes I have been seeing respiratory consultants for 64 years and my present one has a special interest in cystic fibrosis/non cf bronchiectasis and is very proactive.

I am really pleased your medication seems to be doing the trick for you and long may it continue. May I ask what the name of the medication is please?

Gilliam - Thank you for this info. It is really interesting to hear your resp cons opinion on Humira. So sorry it has caused further problems for you. May I ask do you take the mycophenelate orally or by injection, if orally do you find it effects your stomach? I can understand you not wanting to be on steroids all the time, but it gets to a point where you have to weigh up the lesser of two evils.

Thanks all again so much. I was feeling there was nothing out there. I am going tomorrow to see rheumy.

Really sorry you all have arth issues along with your lungs problems. It is sweet of you to find the time to reply and I appreciate it.

Love Sue

[Gilliam in reply to cofdrop-UK]

Hi Sue

sorry just realised you asked me a question. I take 750mg twice daily of mmycophenelate in tablet form.

How did you get on seeing the rheumy?

[cofdrop-UK]

Thank you so much for your reply Gilliam and really sorry not to get back until now on the outcome of my recent visit. Really sorry to hear the inflammation has reared it's ugly head despite your recent medication. I hope this turns out to be a temporary blip for you. It is so difficult and I sincerly hope they can sort this out for you.

Went to see rheumy with a heavy heart dreading whichever one it was would urge me to try mtx. Having heard what happended with the sulph he decided DMARDs were defo not for me. I can't tell you how relieved I was initially. He is a very upbeat character and suggested we try Celebrex for the time being. He knows I have been told by GI not to take NSAI but stated they had an inbuilt stomach protector. It was only later I realised I had been on them before and had stopped them but my brain let me down and I couldn't remember why!!! I just remember reading an article about a possible link with heart disease, which runs in my family, so maybe that's why I stopped them. Not tried them yet. Up to here with drugs but will give them a go. My main concern is that they do not halt progression.

I think initially both rheumy's found my reluctance to start the hydroxy and the sulpha as me being a little difficult. Nothing could be further from the truth. I couldn't start one because I had surgery at the melonoma clinic on my face and the pathology came back with some cells remaining in the margins. I had to put a cream on which latches onto the rogue cells and your immune system then attacks them. So that was for 13 weeks and my imm sys had to be tip top. Then this year the haemophylus influenzae colonisation - pretty conststant infections. On my last visit she did say 'you have a lot to cope with' and I think they have softened their approach and I feel they understand much more. I forgot to mention the ab Minocycline. Well maybe one for the future if Cel doesn't work out for me.

He is also referring me to a physio for the pain, mainly in my lower back and neck at the mo. Hopefully that will help. You never know I might get a professional session of physio for my lungs (yeah that'l be the day - think I had best get on with that one myself!)

Just want to thank you all so much again for your combined effort to come up with solutions to my probs. You are indeed lovely lovely peeps. I hope you are all at your optimum best.

XXXXXXX

[Gilliam]

Hi Sue

Wow the time has flown by - especially as I have been trying to entertain my 6 yr old! Back to school now so can keep up with emails and blogs!

Sounds like you are having a tough time of it what with trying out new medications and constant infections. I do hope the current meds are working better for you.

Turns out I had a virus which I picked up from the kids at school - the slapped cheek virus was doing the rounds in July and I ended up contracting it. In adults it causes painful joints (which would explain why my hands were more painful than usual) and tiredness (nothing new there!) Taking iron tablets now and due back for another blood test to see if it has gone!

I do feel better so hopefully it has gone.

I am due to start at my local gym tomorrow for an induction - it was felt pulmory rehab wasn't the best option for me. I just need to keep the motivation levels up!

Hope you are well.