Need Advice from RA & IPF Sufferers.

[mattcass]

Hi Guys, I am a bit confused on what meds you can get for your RA, I have been informed from the start that Hydroxycloriquine is the only meds i can get, I would like to know what med you are taking just now for your RA, 3 weeks constant pain my wrists and hands has rendered me useless cant even peel a piece of toilet roll off, And I am still going to my work in fact this is the only thing that is keeping me going I have to get up at 4 o'clock to try and get myself ready for my Son who takes me to work, Have a good Sunday. Matt

[cofdrop-UK]

Oh Mat I really empathise with you. I have inflammatory arthritis in pretty well most joints at one time or another. I cannot take NSAIs as they cause me GI problems. It seems Hydroxi is the gentlest and most suited to those with lung conditions. I started on hydroxy and did very well for about 12 weeks. Unfortunately in my case I started to get flashes in the outer corner of my eyes. This eventually became constant - like having migraine all the time. I'm pretty much intolerent to loads of drugs, so hopefully they will be just the job for you. they then tried Sulphasalazine and they didn't suit either. My rheumy wouldn't comtemplate Methotrexate and I wouldn't have taken it if she had because of my lungs.

So there is nothing I can take apart from paracetamol and tramadol if it becomes intolerable. Only recently she said she would allow me to have a steroid injection but only about every 6 months.

The thing I found really helpful was physiotherapy - it really does help you to either improve limited movement or at least prevent your movement getting worse. The physios arranged for me to have exercises in the hydropool and it was wonderful and the hot water helps you to move so much more freely. They concentratred on my neck and back and I was very impressed. So you might want to ask about physio if you are not getting that already.

Hope the hydroxi works well for you Mat.

love cx

[mattcass in reply to cofdrop-UK]

Hi C Thank You, i have just made a appointment with my Physio to discuss me getting to use the Hydro-pool. Matt

[Hidden]

Hi Mattcass,

I think that part of the trouble may be that these drugs, (ambrisentan, azathioprine, bosentan, co-trimoxazole, mycophenolate mofetil, prednisolone, sildenafil and warfarin) some of which would perhaps be prescribed for people suffering with RA, usually have to be avoided by anyone with IPF. I have taken Hydroxycloriquine for the last 3 months and so far haven't had a problem. My joints aren't too bad at the mo although the damp weather doesn't help but like cofdrop I have found that physio does help if they become too painful. When well enough I also do Pilates which is a very gentle exercise that helps to keep the joints as flexible as possible. Hope you soon feel a lot better.

[mattcass in reply to Hidden]

Hi mapal Thank You. Matt

[chrissie53]

Hi Mattcass

I to have RA in hands and wrists,,having tried MTX and Salvo which i reacted to quite badly, i,m now on Hydro,and it seems to be suiting me at the moment,,because of COPD he did,nt want to try it out on me because of breathelessness episodes, least my hands and wrists seem to be ok at the moment,,,he did give me a injection at my last appointment so that probably helped,,

[mattcass in reply to chrissie53]

Hi Chrissie Thank You. Matt

[Hidden]

I used to have 25mls Methotrexate injections once a week, with 10mg Leflunomide. Then I had to have chemo, so dropped the metho. Now I just have 10 mg Leflunomide . Because of Bronchiectasis I can't have TNFs.