Newly diagnosed

I was diagnosed in Dec 2012, Initially was given an injection of steroids, which didn't really help, then was given two types of drugs which I had a really bad reaction to, and was hospitalised twice in January, went to see my consultant on Monday, and he advised Gold injections, then rang me to say I couldn't go on those either. I also have chronic idiopathic Fibrosiis of the lungs, and unfortunately some of the drugs affect the lungs. Has anybody else got fibrosis of the lungs? My consultant said their is a link between the two conditions. At the moment I take co~dydramol for the pain. I am just concerned about getting disfigured joints and the intense pain when I have a bad flare up! Xxx

8 Replies

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  • Hi 7thheaven. Sorry to hear about your condition. Alot of the treatments for RA can not be given to people with lung problems. I was only reading about this y'day, thats why we have to have regular chest xrays. I hope you can stay possitive it must be terrible to think you may not be able to start any treatment but i'm sure there is some help you can get. Also try creams to rub into your joints they can help. Take care. Xx Alison

  • Thankyou for your suggestions, I will try with creams, I am also allergic to brufen, so have to be careful, but I will have a look to see what I can use. Thanks Alison xx

  • Hi

    How awful that you are not able to take so many meds to help you. Alison has a good suggestion about creams. If you can use Voltarol to rub in, that helped me when my achilles was inflamed. I take mtx but if you have lung problems I guess you cant take it - I havent been x-rayed since I started on it 13 yrs ago but I am aware it can cause lung problems. Stay positive and put all your qeustions and concerns to the consultant so all your worries are addressed. As far as disfigured joints - my knees are ugly and fat but they had been a bit chubby all my life. I think if you can do gentle exercises, especially the hand and knee ones that Arthritis Care has leaflets on - or log on to their website - arthritiscare.org.uk - and search for exercises, they have pdf documents you can download that will give you useful exercises. They have helped me and I do exercise as much as I can to keep supple; walking and Wii Fit.

    I also take supplements that i believe help me - there is info. on that as well on the website. The first thing is to get your meds sorted and get as much info. as you can.

    This website will prove a boon for you as there's so much support and helpful advice for you.

    Lynn xx

  • thanKyou lynne. I will have a look at voltarol, has it got ibuprofen in it? As allergic to that too! Yes that's a good idea doing exercise, will look on that website you mentioned. I have just joined a hydrotherapy class, and I do chi Kung, which helps on all levels. What type of supplements do you take?? Thank you lynne xx

  • Hi so sorry to hear, I am newly diagnosed too has your rheumy mentioned oral steroids they help the lungs as well. So far I am ok with the Mtx I have asthma so they are keeping an eye on it. I worry like you about the joints but I think the main is getting your pain under control, to give you some relief. Hope you find the right drug soon.

    Hugs

    Lorraine xx

  • Thankyou Lorraine, I am not too happy about taking oral steroids as they thin the bones and I have already got brittle bones and osteopenia. But thanks anyway, I am looking down the complementary route and been given a good web site by arthritic care.

    Love Josephine xxx

  • Hi 7thheaven

    I hope they are able to find something suitable for you soon. I'm not sure if this may be the website that Arthritis Care have suggested, but Arthritis Research UK have quite a lot of useful information on complementary and alternative therapies and supplements including 2 very thorough reports which you can download from their website: arthritisresearchuk.org/art...

    It may also be worth contacting the British Lung Foundation for further information on fibrosis: blf.org.uk/Home

    Kind regards

    Sarah Kate

    NRAS

  • Thankyou Sarah, yesi I have looked at the research site too. I will b in touch with the lung foundation group again. Thanks again for all your suggestions and support, it means a lot xxxx

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