Let the pred wean begin!: Finally have... - British Lung Foun...

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Let the pred wean begin!

Js706
Js706

Finally have the go ahead to try and get my maintenance pred dose down to 25mg 😁 which I’ve only managed for about 2/3 days total since I got stuck on them in February 😂

But I’ve already managed to drop from 60 to 35 without any issues yet - my consultant said I might as well have a go as if only been on 60 a week so I figured why not!

Going to try and keep a weekly update going on my blog to keep track of it all! Feel free to follow for my random rambles 😅

ainteasybeingwheezy.blogspo...

8 Replies
Hidden
Hidden

Hi. I had to do the same took me weeks but have now managed to get down to 5 mgs a day xx

Js706
Js706 in reply to Hidden

Well done on getting down that much! It’s good to hear from someone who has managed it x

I had been on 40mg of predisone for years, and still felt sick most of the time.

After retiring and moving to a better air quality area three years ago, I have been able to get completely off of it. It took me over a year to do it. It's a slow process. You have to be very slow at decreasing the dosage.

Three years ago, I also had a stem cell treatment that was to help repair the damage to my lungs.

I'm doing fine without the predisone, but because of not taking the anti-inflammatory steroid, my arthritis and joint pain is more noticeable (I'm 69). I'm seeing a doctor in a few weeks to address the issue.

I still have a small quantity of predisone that I keep in case I may need it while traveling, as my doctor suggested.

Beth

Hi, I got stuck on steroids from Feb after flu. Tried cutting down (from 40mg) by 5mg each 5 days.

Asthma kept flaring and l got Cushins symptoms, moon face and buffalo hump back of neck, thining of skin so looked black and blue.

Fast forward to today and lve been off the steroids 3 weeks now.

Had to reduce 5mg each 7 days.

Was ok til under 20mg then asthma so bad couldnt cross room!

Anyway with a bit of fiddling and pacing dose eventually got down to 2.5mg. Stayed on that for one week then 2.5 every other day for another 10 days...

When reducing l found was ok until day 3 of new dose....

Important thing is, got there in the end...

My advice to you would be to take your time with the cutting down, up the nebulizer if you have one and stay calm with it...

The moon face has more or less gone and the other symptoms, except the thinning of the skin, still mark if scratch or knock on anything.

Main thing is things improve.

Im going to Spain for 10wks after Xmas (to avoid much of virus season) and hope never get flu again!! Good luck keep smiling...

Another thing is l needed another pneumonia jab... even though nurse and gp said not needed!

Hosp (Brompton) said titres(?) down to 18.... whatever that may mean....

Janice....

Js706
Js706 in reply to janice01

Congrats on managing to get off them! I too got stuck on them around February and every time I dropped to 30mg I would have another asthma attack and end up in again.

In July I got put on 35 as a maintenance while they tried me on a biological therapy, so I've not been allowed to try and reduce since then! Finally got the go ahead to give it a go, but I expect it will take a while - my consultant said to aim for every 3-5 days for now but to keep a very close eye on things and that he trusts me to adapt the speed as needed. Hoping I should at least be able to get down by a couple of tablets before I hit any issues :)

Sadly no home neb (consultant hates them and I'm too unstable really still) but I've got a nice back supply of inhalers ready to be used if needed haha.

More than anything I just want some of the side effects to reduce! Like you, I've got an awful moonface/buffalo hump/thin skin etc and it would be nice for it to go even a little!

Spain sounds like an excellent plan!

Good idea... and good luck too!

Hi there, thanks for answering.

Not sure if l made it clear was reducing at 2.5mg per wk...?

Changes to the face and top of back started to reduce when managed to reach 20mg pred.

Have also lost 9lb of weight gain.

I had outrageous cravings for chocolate (was going out secretly to buy more) and ended up with the steroid induced diabetes.

Thats ok now but nurse says will return if on steroids again or may just return due to age and family history.

Tummy is very large still but think tummy muscles have become lax due to months of sitting around.

Will get these working better too hopfully.

Good luck and please keep in touch...

Janice x x

Js706
Js706 in reply to janice01

Thanks for your reply :)

Yes it was, and that’s a good idea! I think I’ll try the 2.5mg at a time if I run into problems!

I’m glad some of the side effects have started to fade in you!

Finding it frustrating already because my asthma is coping totally fine with the drop in dose but my body is much less happy! Feeling very tired out, sore and sick! When I was totally fine a few days ago 😡

Ah well, thanks to timetabling and my xolair injection on Monday I have a 3 day weekend coming up, so will still try and go down to 25mg tomorrow I think!

Jess x

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