ALMOST OFF PREDNISOLONE

[Bird-67]

Just thought I’d share my story with all you lovely people out there. I was diagnosed with GCA in March 2019 and started the long journey of taking Prednisolone starting at 60mg.

I have finally reduced down to half a mg daily after a few flares in between. My Rheumatologist said I could have reduced quicker but let me do it my way and it seems to have worked well for me.

I have reduced a half a mg every 2 months so as not to get more flares.

Just wanted to let everyone going through this know that there is a light at the end of the tunnel xx

[PMRpro Ambassador]

Well done - and hopefully that last 1/2mg goes the same way. And good for you sticking to your guns. It isn't slow when it works is it?

And now I am wondering how HE knows you could have gone faster? Another dose of crystal balls ...

[123-go in reply to PMRpro]

Now now!😉

[Bird-67 in reply to 123-go]

LOL xx

[123-go]

Well done!

[Bird-67 in reply to 123-go]

Thank you.

[Dochaz]

Good for you! That's encouraging to hear.

Did you also have PMR? If not, what did the flares feel like? I get a return of PMR symptoms when dropping too low in dosage, but I don't know what a "pure" GCA flare would feel like in the event that PMR would finally go away, but not GCA.

[Bird-67 in reply to Dochaz]

No I didn’t have PMR. The flares used to make me feel low with fatigue and also pain in my left eye and down the left side of my face. I have never suffered with jaw pain.

Hope this has helped.

[Dochaz]

Yes, very much so, thx.I'm experiencing fatigue and weak muscles in arms and legs but have put it down to adrenals not quite up to scratch.

I'm awaiting a return call from my dr and new bloods just in case.

[Bird-67 in reply to Dochaz]

I was referred to an Endocrinologist who did lots of blood tests to see if my Adrenals were to blame for how I felt but they all came back fine.

Good luck with your blood test results.

[Portugal123]

I am so pleased for you. Well done. I will bear it in mind when I am almost done.

[Bird-67 in reply to Portugal123]

Thank you and good luck with your tapering.

[Drip21]

I’m in a similar situation. I self diagnosed in 2021 after numerous tests and investigations came back negative. After a couple of flare ups I am now down to one mg and in a couple of weeks I will be on 1 mg on alternate days for 6 weeks, then hopefully finished.

[DorsetLady PMRGCAuk volunteer in reply to Drip21]

Just be aware there is a big difference between 1mg and zero … might not sound much, but 1mg can be helping your PMR more than you think.

I think I might be amending the tapering -by adding in the zero dose more slowly - so one day in first week, 2 days on second week 3 days on third week (although not concurrent days) and so on. That way is easier on the body and gives an early warning if it objects to decrease.

[Bird-67 in reply to Drip21]

Well done you. All this positive news is really good for others on here who are struggling.

[Lonsdalelass]

Well done and good luck with the final .5mg reduction. You're almost there! 😃

[Bird-67 in reply to Lonsdalelass]

Thank you so much.

[Temoral]

All this positive news this week.....encourages me to continue with the slow taper which has worked for so many on here. I have reached 3.25 after starting on 40 in 2021. Take courage everyone.😊

[Bird-67 in reply to Temoral]

So glad my good nes helps you. I tried several times to taper with no luck until I decided to do it a lot slower and since then I’ve had no flares. Good luck with yours.

[PMRpro Ambassador in reply to Bird-67]

"I tried several times to taper with no luck until I decided to do it a lot slower and since then I’ve had no flares"

DO broadcast that far and wide, especially to doctors! We've been plugging it for over 10 years ...

[Bird-67 in reply to PMRpro]

Yes I have read many of your posts about taking it slowly so decided that it’s my body and I’m going to do it my way lol. I must say that although my Rheumatologist and Endocrinologist were absolutely fine with me doing it my way even though they didn’t think I really needed to take it as slow as I have but hopefully I’ll prove them wrong.

[PMRpro Ambassador in reply to Bird-67]

Trouble is, you don't know you could do it faster until it fails and it tends to fail spectacularly since when you go faster you don't really know when it all went wrong. It may have been a few mg ago ...

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Snap 😊

[PMRpro Ambassador in reply to DorsetLady]

[Bird-67 in reply to PMRpro]

Absolutely right there, and everyone is different I suppose.

[DorsetLady PMRGCAuk volunteer in reply to Bird-67]

The point is you’ll never know if you needed to go as slow as you are, but if it suits you then do it. … the only thing you can categorically prove is going too fast and then everything goes pear-shaped…😉

[Bird-67 in reply to DorsetLady]

Yes I did try a few times to taper as suggested by my Rheumatologist but it never worked so decided to try it a lot slower.

[Temoral in reply to Bird-67]

Thank you.

[Miacaro45]

👍👍

[Judywalks]

well done. I am now off Pred since the beginning of the year but stayed on Methotrexate. I will be stopping that this month. I had had GCA for a few years with one or two flares. I too had some disagreements with my Rheumatologist about taking things slowly and I still don’t think she understands how I feel and how scary it can be when experiencing a flare. Now I see the Specialist nurse who is much more understanding.

I am grateful for the support I get by reading others experiences on this forum.

[Bird-67 in reply to Judywalks]

Well done you. I have never taken Methotrexate so only had pred to taper.

I agree with you about the support from others on here.

Good luck with the Methotrexate.

[Exflex]

I think I flared at wk 4 of a 0.5 to 0.25mg taper (using DL’s plan). I recognised something going on having bilateral upper arm / shoulder pain. I persevered with 0.25mg for a couple of days without improvement so increased to 1mg for 7 days then dropped to 0.5mg where I’m currently sitting. Just had root canal surgery (1 hr 45mins of drilling) so I will sit at 0.5mg for another few weeks at least, then in the new year attempt the taper to 0.25mg.

[Bird-67 in reply to Exflex]

I can to that when I was on a higher dose but not had any flares on the really low doses.

Good luck with your taper in the new year.

[Freshairfiend]

inspiring. Many thanks for posting and all the best with last bit of tapering.

[oscarandchloe]

Hi Bird-67, I started my journey at the same time as you, March, 2019, with GCA on 45mg Pred. My symptoms stopped completely after 24 hours of Pred and never returned. I was lucky to have ultrasound tests every 6 months at Oxford University Hospital where student doctors came in to learn about the rather fancy machine that looked at my arteries. Mostly they couldn't find the arteries! I got down to 4mg by the end of that year but by then little sister PMR was showing up and so I had to go back to 15 mg. I'm now down to 3 mg having paused for over year on 5 mg while I had both hips replaced. Now it's a 6-8 weeks taper of half a mg. No flares, just the couple of odd days when my energy collapses or I feel a touch dizzy. Feel I'm nearly there! Thanks to this forum I've staved off the 'extra' drugs that were on offer, and had support each day from everyone here.

[Bird-67 in reply to oscarandchloe]

Wow, well done you. It seems that 6-8 weeks cutting down another half a mg is maybe what the Rheumatologists should be recommending.

I too staved off the other drugs on offer thanks to this group.

Good luck for the future.

[Plains]

thank you. The slow taper has worked for me too in the past. I am slowly going down again after a flair of GCA. Do you ever get a pain in the temple area that only lasts a few minutes being in a low dose? I don’t know what would cause this? If it was inflammation I would think it would last longer? Just wondering if you ever had this happen while reducing. Thank you

[Bird-67 in reply to Plains]

I have had the odd stabbing pain in my temple and I find if I touch the temple where they took the Biopsy from even after 4 and a half years it’s still very tender.

Hope this helps, good luck.

[Frewen1]

so encouraging, thank you … I’m a year or so behind you with GCA, , since August 2020, now down to 2mgs, but can I ask if you feel whatever we remember as “normal “? My legs still like jelly all the time… do you find that, or has that feeling gone ? Thanks anyone for your positive story

[Bird-67 in reply to Frewen1]

Well done on getting down to 2mgs and fingers crossed you will soon be off them completely.

I’ve never had jelly legs but I do now have Fibromyalgia so get all sorts of feelings and pain with that.

Maybe someone else on here can relate to the jelly legs.

Good luck and keep the good work up.

[Tiggy70]

Well done and thanks for your inspiring post. Good luck with reducing the final half mg.

[Bird-67 in reply to Tiggy70]

Thank you so much for your kind words.