[cliff-cleary]

Hi Charlene,

I was first diagnosed with allergies and was treated for them for about 3-4 years, then emphysema for another 2 years. Then in 2015 I was diagnosed with IPF.

Last November I was rushed to hospital and diagnosed with Anca Vasculitis and nearly died. Funnily enough the Vasculitis has similar symptoms to IPF so at the time I thought it was IPF that was going bad and that it would lead to my passing. Fortunately my GP kept researching my blood tests and found an abnormally with my kidneys.

Now the specialists are not sure how to treat me as they have not seen anyone with my two diseases together. There is even a thought that the Vasculitis has been the cause of my lung disease, it’s thought that maybe the Vasculitis has been in my body for quite some time before the episode in November.

Cheers

Cliff

[cliff-cleary]

Hi Charlene,

Firstly let me say that I marvel how you put so much into these forums and I admire how you are coping with this horrible disease at such a young age.

I’m 63 and was diagnosed in Sept 2015, that was after being misdiagnosed for a number of years. I have been struggling with chronic pain and depression since 2006 due to injuries from a car accident.

The two main issues for me has been missing out on doing more with my children as everything has just been to hard, my stepdaughter 26, son 19 and the youngest daughter 15 have missed out on a lot of things growing up, because dad was always not well or to tired etc.

The other issue is nit being able to work or do everyday chores and always having to rely on someone else, fortunately I have had my own business and been able to potter around at my own leisure but it’s still very difficult. All the thins I could be doing if I wasn’t so sick and tired.

Cheers

Cliff

 

[cliff-cleary]

Hi Pamela,

Interesting to hear of your use of prednisone, my doctors are reluctant to keep me on them and at the moment I’m on a very low dosage. I’m currently taking 12.5mg per day.

I would like to know what dosage your pills are and what others are on. I’m in Australia and it doesn’t seem that prednisone is being used much for IPF here.

Cheers

Cliff

[cliff-cleary]

Hi All,

It’s quite an eye opener to read about other IPF sufferers experiences from another country, over here downunder we can sometimes be a bit behind. I have also found from  reading articles and this forum and from other sufferers that medication and dosages can differ greatly.

If I find out if there’s any problems with Pirfenidone and Prednisone together I will post. I  was put on Prednisone for my Anca Vasculitis which had a positive effect on my IPF as well, my Renal specialist said they didn’t want me on it to long because of the side effects. I also have Osteoporosis, apparently Prednisone has a negative effect on the bones.

Aishia, interesting to hear you’re on both, I will definitely be discussing this with my doctors.

Cheers Cliff

 

 

[cliff-cleary]

Hi Everyone,

I was diagnosed with IPF in September 2015, I was taking Pirfenidone until November 2017 when I was diagnosed with Anca Vasculitis. I was put on Prednisone for the new diagnosis and then taken off the Pirfenidone as doctors were concerned there might be a reaction with the two drugs.

I started on 30mg Prednisone and it was helping my conditions enormously, the doctors started to reduce the dose gradually until I got to 7.5mg  (daily) but my condition worsened and I was put back up to 15mg. I’m now on 10mg.

On the high dosage I had a few side effects including the shakes, mood swings, sleeping problems but on the lower dosage I don’t have any issues.

Cheers

Cliff

[cliff-cleary]

Hi Charlene,

I’m not sure there’s any reaction between Pirfenidone and prednisone, I’m still waiting to hear back from doctors.

While I was on 30mg prednisone it did help my IPF symptoms quite a bit, the only problem is I’m not sure if it was the Anca Vasculitis or IPF that was the major problem as they both have similar symptoms. The doctors are also unsure as they haven’t had many if any patients with my two diseases together.

I thought I was on a high dosage of prednisone but going on Terry’s post mine is quite low. I’m not sure what’s going to happen with my dosage but the 10mg is not enough and I have been told they want to get me off it as soon as they can.

Cheers

Cliff