I have idiopathic pulmonary fibrosis(uip)i have started taking perfenidone starting phase ie 3 tablets a day...im having side effects

[aditya18]

Im having small blisters all round my body...n my platelets count of my blood is also decreasing...is anyone else havin d same problem??

[TheAuthor]

Hi aditya18

I am so sorry to read that you are having this horrendous side effect and I really would discuss this with your GP to make them aware of this issue.

Take care

Ken

[stella08]

Hi aditya 18

My husband has been taking full dose Perfenidone for 18 months so he is very aware of the problem of blisters. ( I cant comment on his blood patelet readings because I don know.)

Have you been advised about taking the maximum amount of care if you have to go out into the sun? Avoid if if you can. Otherwise cover up as much as possible - hat, long trousers, long sleeve blouse of shirt. It is really crucial because for my husband the first time he did not pay attention, blisters were the result and as you know its very painful.

This is a known side effect from this treatment. But you can deal with it. We went to Argentina in March (he had a supply of oxygen arranged by British Airways all the way, which he definitely needed - wonderful free of charge service) and we spent a month in a sunny climate without these consequences, so if you take care, its fine.

Keep smiling

Stella

[aditya18 in reply to stella08]

Thanx a lot stella...am aware of dis...as doctors have told to apply sun block...wen am outside...bt still d blisters r comin...am afraid wen illb on full dose..wat wud b d outcome...

[aditya18 in reply to stella08]

Fr how long have ur hubby being diagnosed??

[Sooki in reply to stella08]

I am interested who you were insured with,I don't need oxygen on the plane,but do need it to walk about,I am either refused insurance because of the oxygen or quoted astronomical amounts,I am an IPF sufferer and also take pirfenidone,I have had reaction to the sun,so I now take all the necessary precautions.Thanks Sooki

[stella08 in reply to Sooki]

Hi Sooki

My husbands oxygen levels are usually pretty good (around 95) under normal everyday conditions. Because it was a long flight (14 hours) at a very high altitude the levels dropped significantly hence the need for the oxygen. If you want to send me a private message I can tell you how we dealt with the insurance problem. Its complicated. Stella

[stella08]

Hi aditya18

My husband started to notice difficulty in breathing in January 2012 just before our daughter got married. He just thought it was a consequence of age although he is only 63. With lots of personal stuff happening in that summer he tried to ignore it (mistake) until September when he went to his GP who had seen a previous case of IPF and recognised the symptoms and sent him to a specialist. He started taking Perfenidone early in 2013. (We live in France and this drug was available here before it became available in the UK)

As regards putting on sun block - yes very good idea but perhaps covering up completely might help even more. I know its a nuisance when everyone else is busy taking off their clothes to lie in the sun but I think it is worth it not to suffer afterwards.

Stella