I Need some Help & advice. mattcass

I need to hear from others out there who have IPF and RA but only if they had the PF first and to let me know what meds they are on & mostly for their RA, I am so fed up with constant pain 24/7 only to be told there is nothing we can do even the strong P/Killers that sometimes help they don't want you having in case you get addicted, Thx Mattcass

5 Replies

  • Hi im not much help as i dont know much about ipf, but if the medication helps then you should be allowed to have it. No human should suffer pain. Hope you get sorted asap. Xx Alison

  • Hi Alison thank you I'm the one that normally tells them no Morphine based drugs but recently I have no option painwise. Matt

  • I have IPF and RA. I did have pf first and was prescribed Azythromycin three times weekly, Calcichew twice daily and Acetylcysteine three times daily. Have been on this for three year without any ill effects. For the ra I had an infusion of Retuximab in December and am now down to 5 mgs Prednisolone daily with permission to try 2.5 mgs when I'm ready. I take Salpadol for any pain which seems to work. I still get stiff hands, as though they need oiling!!

  • Hi Marm, Thank You for your reply for my RA I am 400mgs Hydroxy, 3000mgs Sulphasalasine, 180mgs Diclofenic, Daily I cannot get Biological agents like Retuximab because of my Lungs as the next infection will push me to Double Lung Transplant or Oxygen 24/7.

  • Sorry have had trouble with website. I can't have Diclofenic due to gastro problem so have to stick with Salpadol. The Retuximab hasn't had an adverse effect on me. The two consultants decided it was OK, as I've had adverse reactions to a couple of dimards but my lungs are not as bad as yours. Hope you find something that works better for you.

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