Finally finished prednisolone.

[Amstel]

Hi all, after just over 7.5 years I've finally managed to stop pred. It's been a very long and slow reduction with the inevitable hiccups along the way. I ended up on 0.5mg every 2 days and finished last week, with no ill effects that I'm aware of. The last PMR symptoms I had were in 2020. What I'd like to know is, is there any guidance or advice on how long I should continue with alendronic acid, adcal and lanzoprazol for? Any help would be greatly appreciated, thank you.

[piglette]

Have you had a Dexascan to show your bone density? In fact it is recommended that Alendronic acid should not be taken for more than five years. I would have thought your doctor will stop prescribing Lanzoprazol and Adcal.

[Amstel in reply to piglette]

Thank you for your reply. Yes I think I'll call my GP next week. I'm also on methotrexate for arthritis in my hand so I suppose there's all kinds of variants involved.

[SnazzyD in reply to Amstel]

Bear in mind that if you just stop Lanzoprazol dead you’ll get rebound acidity. It’s better to tail them off so your stomach can readjust.

[PMRpro Ambassador]

It is probably the AA that dictates how long you take the other two. You usually need the calcium/vit D when on a bisphosphonate or you risk developing low calcium and some find AA harsh on the stomach. And having a dexascan makes sense - did the AA do what it was supposed to. But if you have been on AA the whole time - it is time for a drug holiday whatever.

[DorsetLady PMRGCAuk volunteer]

You probably need to discuss with GP…

if you aren’t taking any other meds or have digestive issues then you can come off PPI [Lansoprozole] - but tapering it - not cold turkey.

As for AA, and Adcal - do you know state of bone density? A DEXA scan recently

Might be worth asking for one… I had one a few years after coming off Pred and AA - and although bones fine it was suggested I stay on Adcal-D3 .

I have, no problem.

Good to hear you’re off Pred, hope it continues, but still early days. 🤞

[Amstel in reply to DorsetLady]

Thank you everybody for your help, I will indeed be contacting my GP next week regarding a dexascan.

[Wizards]

Congratulations. Welcome to the club.

[perceptual63]

Congrats with coming off pred.! 🥳

[Nightingales]

congratulations. Well done with your perseverance and thank you for the inspiration (7 years).

[AtopicGuy]

Congratulations! I suspect the methotrexate is helping to some degree. Like steroids, it's an immunosuppressant.

[Mervetheswerve]

Hi Amstel, I can’t advise on coming off the associated drugs but as a pred user, I’m curious as to why you have stayed on pred for so long after PMR symptoms stopped in 2020. Thanks, Merve

[Amstel in reply to Mervetheswerve]

Hi Merve, bit of a long story but I had a huge flare up in '20 after reducing so had to increase sharply again, coupled with going on Methotrexate for the arthritis in my hand which began at the same time, very painful!!! Consequently so began a long slow reduction which was interrupted by symptoms I thought was another flare up but eventually turned out to be symptoms of myelopathy, affecting my legs. Spinal cord compression ......had to have an op in December to relieve this which meant temporarily increasing the Pred. Since then I began reducing again and as I had previously been down to 4.5mg I was able to drop down again until as of last week I'm off altogether. Fingers crossed.....🤞🤞🤞

[Mervetheswerve in reply to Amstel]

Sounds like one hell of a journey. Good luck with being off it now and let’s hope it’s for good!

[LMali]

Congratulations! I like to think there are lots of people who make it off pred but don't tell us because they are getting on with their lives! It is nice to hear when people do get off. I shall be sure to tell the forum if I ever make it (currently on 5.5!).

[DorsetLady PMRGCAuk volunteer in reply to LMali]

You can still get on with life and be on here! The former doesn’t necessarily exclude the latter.

[PMRpro Ambassador in reply to DorsetLady]

Yes - but most people get out of the habit of reading about other people's problems and then forget about us!

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Just so long as they didn’t complain about their friends and family not being interested when they had PMR /GCA.. 😳

[PMRpro Ambassador in reply to DorsetLady]

Hehe ...

[Hopingsail in reply to PMRpro]

Forget about you PMRpro? Never! - and the same goes for DL and others without whom I would have been lost…

[PMRpro Ambassador in reply to Hopingsail]

Probably delighted to get away from my nagging ...

[LMali in reply to DorsetLady]

Sorry, yes, I meant it in a nice way as in they get better and no longer "need" the forum. I am indeed getting on with my life but still read the bulletins most days because I am not completely better and I am interested in others' experiences! I think it is probably quite natural to turn to the forum more when things are not going so well, we reach out for support.

[DorsetLady PMRGCAuk volunteer in reply to LMali]

Of course it is -but if you have got help from us, then why not stick around and help others… 😊

[tangocharlie]

I'm so pleased for you. good to hear that for some. possibly most, people PMR does eventually go away, but there is no fixed timescale