Still undecided

[Blyth1]

Hi all, I have an appointment this afternoon with my pulmonary consultant. When seen 3 months ago she suggested I start anti fibrotic tablets. I am currently on Prednisone. The thing is everything I read has been about negative side effects that people have when taking these tablets. Do you think anyone out there takes them and feels fine???

I know the decision is mine to make, I have discussed it with my family who say I must do what I feel is right for me.

Sorry about the moan/ wobble just thought this group would understand my emotions at the moment.

Take care everyone X

[Ern007]

I think it depends how bad your condition is and how you feel. These drugs to have side effects, so does " Prednisone." for that matter.

On the other had - I have read they can reduce mortality.

I have Fibrosis in lung but have never heard of this,

ncbi.nlm.nih.gov/pmc/articl....

[Alberta56]

Totally understand the moan/ wobble, but have no experience of these drastic sounding pills. I hope the consultant will help you decide what to do.

[Blyth1 in reply to Alberta56]

Thank you both for your replies. Had my appointment, consultant was great. We have a plan to go forward with my meds. Double Prednisolone for now, appointment to be arranged to see pharmacist in hospital to discuss either steroid sparing drugs or anti fibrotics. Feel happy with that. I really appreciate you both taking the time to reply. Thank you so much.😊

[Troilus]

Hi Blyth. People react differently to drugs. Why not give them a try? You might not have side effects and if you do and find them intolerable then you could always stop.

[Blyth1]

thank you for replying Troilus, your post and my reply obviously being done at the same time. I think I had only read negative reviews of these drugs, which was putting me off a bit. Will now happily take them, or alternative when I have had chat with pharmacist. Apparently everyone has this discussion before starting new drug regime, not me being a special case🤣

[Izb1]

I am sure everybody feels the same starting news meds Blyth1, when you read up side effects it puts you right of. I felt the same when starting Methotrexate for my R.A. Sounds like you have a good consultant who understands you and that is rare x

[Cloudancer]

Only picked up your post this morning and just wanted to say that am so pleased that your appointment went well and that your consultant was empathic and you both came up with a plan.Remember there are always folk on this site to give encouragement and to share their experiences you are never alone.

[Germantara]

I would advise to stop reading about medication no matter what it is I myself use read or Google and scared myself to the extent I wouldn't take it I did more harm now I take all meds and inhalers if not suitable go back but I've had that medication on and off over last years don't be put off hope you get sorted

[PaulineHM]

Hello Blyth1,

Yes, oral corticosteroids will make you feel good/fantastic in the short term but in the long run they tend to bring more problems than they solve! If they are the only option then try to manage on the lowest dose

Can you request an appointment with your pharmacist, hospital or primary care to discuss your options ? I often find I get a better consultation from the pharmacist than from a doctor. Well worth asking I would suggest.

Let us know how you get on.

Go well,

Pauline

[Blyth1 in reply to PaulineHM]

Thanks to all who have kindly replied, much appreciated.

Yes PaulineHM I will get an appointment with the hospital pharmacist, arranged by consultant, to discuss all medications. Trying to go forward with an open mind, feel better after having appointment yesterday. Have a good weekend everyone. X

[PaulineHM]

So pleased you have a plan!

Wishing you well.

Pauline

[Hazel-mary]

Hi Blyth1

I take Pirfenidone, anti fibrotic meds, I’ve been on it almost a year. It has taken a while to work through the side effects. Mine have mostly been feeling sick and dizzy and for a while I was taking anti sickness tablets which really helped. The side effects have seemed to wear off or my body has just got used to the tablets the longer I’ve been on them.

Like you I read a lot of articles on the tablets before I started taking them and was unsure whether to try or not. I am glad I am giving it a go in the hope that in the long term they are slowing down the progression of the pulmonary fibrosis.

Pease let me know if I can help with any other questions or just to chat

Take care

Hazel x

[Biker88]

If we read the side effects of any medication we would never take any thing, taking meds is always a balance between the negative side effects and the positive reactions on our conditions. We are all different and the side effects are different for all of us, I hear regular stories on how the side effects of powerful anti fungal meds affect people, some don’t notice side effects while others suffer. With any strong meds you should be regularly monitored by your medical team,.