on pirfenidone for 2 weeks,gave up,still feeling lousy-difficulty sleeping,appetite down,occasional nausea,anyone else had similar reaction?

[terence2]

spasmodic stomach pain too

[imelda16]

I will be starting Pirfenidone in August so will be really interested in your tolerance of the drug. The consultant was willing to start me in April but the Sun sensitify worried me not that I sit in the sun but the precautions that have to be taken seemed a bit too much at this time of year. We all react differently to medication so we have to try it if there is going to be any help from it. I think you will have to reduce the dose until your body gets used to it then try increasing . Good Luck terence2

[Sooki]

Yes all of the above,and rash from the sun,my fault on that,didn't cover up.Stay with it,I've been on it since November,your body does adjust,I take my tablets just after food,I have very little appetite so eat what ever I fancy.i am also occasionally sick,but I have stayed stable for the last 6 months,due another check up end of July.Its the only medication we have still the moment ,so I am staying on it.Sooki.

[stella08]

Hi terence2. My husband has been taking Pirfenidone since February 2013 and has suffered all the symptoms you mentioned plus indigestion. However he did say to encourage you to try again because you do adjust and it becomes tolerable if you can put up with it for a while longer. Pirfenidone seems to be helping him to stay stable and as it is the only treatment option we have for IPF, a shame for you not to persevere and benefit from it.

Few tips - really take seriously the need to cover up in the sun. Also eat sufficient at each of your 3 meals to absorb the pills. You may feel sick if you take them on an empty stomach or with little food. Exercise as much as possible. Keep doing all the things you enjoy.

Good luck and keep going. xxx