British Lung Foundation
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IPF and the Gilead Sciences trial Rainier

Hello everyone.

Is anyone taking Pirfenidone and has started on the drug trial for a product to be called Simtuzumab. Are you unusually suffering weak muscles, painful and inflamed joints making it almost impossible to walk, or use your hands, plus loss of balance.

We dont know if it is related to the drugs or a totally different problem other than the IPF.

Keep smiling.

3 Replies

hello I'm on perfenidone, 14 months now .I suffer with osteoarthitis and spondylosis ,I take meds for angina as well. I get joint and muscle pain every day mostly unberable, pain killers don't seem to work to well! I to am not sure if its the meds making it worse or a natural progression ,these problems are more trouble to me than my I.P.F .I saw my lung doctor this week he told me the RAINIER study was open to people on perfenidone now, but their has to be a significant drop in your condition before they offer it .My condition had dopped a bit but not enough to qualify.I suppose thats a plus , as long as it will still be on offer later.Hope this has been some help. weelspeed all the best .


Hello Weelspeed. Thank you for your response. Did you have the osteoarthritis and sponylosis before being diagnosed by the IPF and before you started taking Pirfenidone? We live in France and the consultant did not indicate that there was a particular level of condition to which the Rainier trial could be applied. We were just wondering if it was this new drug which was contributing to his sudden joint and muscle pain which he did not have previously. He has been on Pirfenidone for more than 2 years without these symptoms.

Look after yourself and I hope the warmer weather will contribute to you feeling better soon.


Hello stella08 I've had the arthritis /spondylosis for years,but I do think it could be made worse with the meds I take for Angina and I.P.F. the side effects lists joint and muscle pain for both these meds. I only know what i put in the last reply,that is if you've had ipf over 3 years , and the codition gets significantly worse on perfenidone they may allow you on the Reiniers study.thanks for getting in touch all the best.


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