Robstevens

[Guccibee]

I've been on prednisolone for 10 years. Can't get off it. Even with nucala injections every 4 weeks. I had churg Strauss syndrome. And still on 11 drugs to get by. Every day. Including heart drugs. But still can't get PIP. Even though I would probably die before someone with a bit of arthritis who gets it..

[Guccibee]

I think my adrenal gland has had it. But last resort looking into thyroid next ref heart damage from disease. As I still have a fast heart rate as well as the respitory stuff.

[KirstyW1999 in reply to Guccibee]

benefitsandwork.co.uk as lizzily replied. Don't give up re applying, the site gives lots of information re. filling in claim form.

[lizzily]

benefitsandwork.co.uk/. Have you come across this organisation? There is a technique to filling in the form to meet the criteria.

[Budapest]

Hi Guccibee,

I tried coming off Prednisolone a couple of times and felt so awful I had to stop.

Then I decided to come off very, very slowly and have been successful so far. I reduce by 1/4 tablet every 6 weeks! I hardly notice the reduction. Works for me!

Hope this helps

Best wishes

Budapest

[juli-pa in reply to Budapest]

I tried once & same felt awful. The next time as you say I reduced much slowly & have been fine since which is around 6 months now. Hopefully that stays the same for us both & anybody else trying to come off the dreaded steroids.

[AtopicGuy]

Call your local Citizens' Advice Bureau. They help people get the benefits they are entitled to every day. Good Luck!

[Galaxy2]

Hi there, I don’t think I’ve ever be off predisolone, it’s been 13 years now, I did get down to 2mg once and was fine for a while but then had a flare and dose was put back up and when I reduce now my symptoms return. I have resigned myself to the fact I need it and feel better with it.

Good advice by Budapest, when I have successfully tapered it’s been at a much slower rate than I’ve been advised and worked well when my vasculitis was under control with other meds.

Don’t give up with PIP, I’ve never been successful either and we do seem at a disadvantage having a rare condition, but keep trying and appeal if you get turned down .

[Robstevens1970]

Hi,

That’s ridiculous the system doesn’t make sense!

Sorry to hear, you’ve been through it.

Wishing you best wishes,

Rob