Need Advice From IPF/RA 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

[watson3]

Hi matt

There are lots of DMARDS out there check out on the NRSA website. Not sure tho which ones can be used with your lung condition also.

Hope you get someone else to help you.

Your photographs on facebook are fantastic.

Carole

[mattcass in reply to watson3]

Hi Carole Thank You. Matt

[Beachgirl]

Do hope you can get yourself sorted mattcass, truly admire anyone thats holding a job down with RA, thats how I started with my flare my hands were virtually useless and my legs well I know how the tin man felt in the wizard of oz,not on any meds now, but good luck xxx

[magglen]

for goodness sake, push your GP to get you to see an RA specialist ASP.. If there is a long waiting list can you afford to go privately? I had to do that and wish I had gone earlier. The sooner you get onto decent meds the better xx

[mattcass in reply to magglen]

Hi Magglen Thank You, If RA cant do anything for me why should I even bother going to their clinic Enuffs Enuffs,

[Trulyfedup]

Poor you it sounds horrendous. I've got R/A in most joints..I'm ok today my doc gave me a steroid injection yesterday as like yourself I. Great pain. I've just come off Methatrexate as side effectsp were becoming a problem. I'm off to hospital for infusion of infliximub today...also been influmonide (probably wrong spelling) I had a bad reaction to that...also I couldn't tolerate sulphapziline ( blimey can't spell that either!). So I've tried a few I don't know if you have had any of those. I hope list helps you and I wish you well. Mary.x

[mattcass in reply to Trulyfedup]

Hi Mary Thank You the only meds for my RA is Hydroxy.

[Trulyfedup]

Just been to hospital for my infusion of infliximub and they wouldn't give it to me so I'm off methatrexate and that for an infifinite period......really worried about the pain on the way. The docs told me to contact my GP for more morphine...my worry is that whilst I'm not taking any drugs for complaint it will progress. Bugger bugger bugger!!! X

[mattcass in reply to Trulyfedup]

Hi Mary Morphine and me don't see eye to eye or it would probably help with pain I go through, as for not taking drugs to fight the RA I to have asked that question several times without a reply or we don't know, Sorry Matt

[Trulyfedup]

Thank you for your reply. My next appt with the Professor isn't until the end of November. The staff nurse did say she would try and get me in sooner. Fingers crossed. How do you cope with the pain? Mary.

[Kathyfitz12]

Am I getting confused or are you saying your doctor won't offer you an alternative drug even though you are still in agony when taking hydroxy? If that is the case please change your doctor or at least insist you want an immediate referral to a Consultant Rheumatologist. You must see the miriad of drugs we on this site get offered - there must be somethong else you can try - a lot of GP's aren't too clued upon RA so please do get a second opinion. Good Luck .Kathy

[mattcass in reply to Kathyfitz12]

Hi Kathy because of my lung problems i was told that all RA drugs would and could cause me more serious lung damage, it was the top Respiratory Professor in Scotland who gave permission for me to try Hydroxy as it's the mildest RA meds there is and if this worked fine if not i could not try any others,This is all down to my Rheumy Doc trying to get my steroid level down to 5mgs i have been on 15mgs for 4 weeks and have just been through the most painful 4 weeks of my life, from this morning I upped my steroids to 30mgs and all i need to know what is the worst scenario

for me staying at this level. Matt

[Kathyfitz12]

I'm so sorry Matt I missed the bit about your lung problems.

I'm afraid I don't know the answer to what the effect of 30mgs of steroids would be - I can't take oral steroids at all - they fry my brain and send me loopy and that was on 10mg a day!

I think all you can do is get another appointment with the Respiratory Professor and see if he can point you in the right direction. I hope you get some relief from the steroids you are now taking - but do see you GP & get his opinion on what your next move should be....best of luck - I really hope you get some relief soon....Kathy

[mattcass in reply to Kathyfitz12]

Thank You Kathy. Matt

[summer32]

oral steroids for a long time at that level can cause possibly cause cataracts, high blood pressure. bone depeletion, and diabetes.. will increase the risk of the above problems ..

I used to have gold injections for my arthritis but these may be a problem with your lung condition?

[Victoria-NRAS Partner Moderator NRAS]

Hi Matt

It's hard to speculate on what you might be able to have instead of hydroxychloroquine, as I am sure they would have good reasons for feeling that the other drugs would not be good options for you. However, if you are not confident that this is the case, maybe it would be worth asking your GP to refer you for a second opinion?

Kind regards

Victoria

(NRAS Helpline)