Oh dear back to square one!

[DevonMichael]

In March 2019 I reached zero prednisolone for the second time after being diagnosed in June 2016 with GCA and then PMR in Nov 2017. Sadly this was another false dawn the battle to stay off steroids lasted three months this time after which I have had to give in. Continual pain in the shoulders on dressing and a leg enduring pain and cramps particularly after a stint of driving, coupled with a weak right arm - finally proved too much to endure any further.

The stress of it all may have affected my blood pressure which is high at 162/175 checking inflammatory markers they are ESR 28 and CRP 32.

To day I commenced what is the start of my third prednisolone tapering plan with 15mg and hopefully the next few days of medication will get me back on track to feeling normal again. The last three months medication free have been so difficult.

I am sharing these thoughts for others similarly affected.

[HeronNS]

Sorry to hear this. I am beginning to think the final taper to zero can be very prolonged. I think if I'd had your experience I'd be tempted to stay on a couple of mg, once you get there again, for quite a long time before cautiously stepping down. Mind you, easy for me to say as in fact I have been at 2.5 - 2 mg for a couple of years now, and only now, fingers crossed, yet another attempt to taper to 1.5 seems to be working. Sure hope it doesn't take another two years to get to 1....

[DevonMichael in reply to HeronNS]

Yes getting to zero has moved from joy to nervous fear! If third time unlucky I may seek the possibility of staying on a long term maintenance dose of 5mg

[HeronNS in reply to DevonMichael]

You might just need to do something like what I've recently been doing, with some success it appears: repeating each step of a DSNS taper as many times as necessary before proceeding to the next step. As PMRpro has said, It isn't slow if it works. And I'd rather be slowly chipping away at 2 mg for months, as in fact I did, than giving up and sticking there forever. I expect to spend a similar amount of time chipping away at 1.5, but I might do better this time now that I've learned how to slow down DSNS even more than before!

[yogabonnie in reply to HeronNS]

so you do the taper say from 2 to 2.5 with dsns and then go back to 2 and do it again.?

[HeronNS in reply to yogabonnie]

No, I do the x number of days old dose x number of days new dose sequence twice. For example I am now in the first go-round of new dose five days, old dose one day. I will do that twice, then move to six days new dose, one day old dose, and do that twice. If I'm still feeling as good as I do now I will stay at 1.5 (new dose) for a while before starting again with six days old dose, one day new dose (1 mg), done twice, then moving on. It means it takes twice as long to get through the taper from beginning to end.

[HeronNS in reply to yogabonnie]

I just went back and looked in my dairy and I see I was at 1.5 most of last summer and early fall, and then the renovations started in our future home and my dose went up and didn't stabilize on 2 again until Spring. I believe the lesson to be learned is not to be too sure that I'll be able to get to 1 because that does seem to have been a major stumbling block all along, even if I wait at 1.5 for a while. I need to remember that I've been here before and be patient.

[yogabonnie in reply to HeronNS]

thanks!!!! That is a good idea!!

[PMRpro Ambassador]

Hard luck - it isn't uncommon I fear. How long had you been at 1mg before you took the plunge to zero?

I somehow don;t believe the BP figures

[DevonMichael in reply to PMRpro]

I did mark time for a number of extra months using up some 'spare' tablets with some left over denominations from the taper e.g. 5mg, 2.5mg and some 1mg which were a sort of surplus from repeat prescriptions. I did this not to waste the medication and to help slow the descent.

I have been asked to check the BP in two weeks. My wife thinks it could be caused by stress of house viewings we are on the market seeking to move and downsize!

[PMRpro Ambassador in reply to DevonMichael]

Did you not look at what you wrote? 162/175 is impossible

Haha - no, house-hunting isn't good for the BP ...

And maybe just sticking at 1mg is enough - especially if you don't ignore the early signs and adust the dose.

[DevonMichael in reply to PMRpro]

I asked for the number to jot down I am sure the 162 was right but may have misheard or transposed the second number suspect it is 162/75 !

[PMRpro Ambassador in reply to DevonMichael]

Probably a mix of rushing around and white coat syndrome

[DorsetLady PMRGCAuk volunteer]

Sorry to hear that, I would suggest your GCA is possibly in remission, but the PMR has been alive since you finished Pred in March, and has only recently resurfaced enough to cause problems.

You know the drill, and maybe a bit slower on the tapering side this time around.

[DevonMichael]

Yes the first month I glossed over wanting it to be done but in the second month and third I made two 300 mile round driving trips to London this proved to be an ordeal with many one hour driving chunks followed by a number of hobbling walks to the services to get my legs working at every stop.

[allykat]

I am so sorry to hear this and your story sounds so much like mine. GCA in 2015, PMR in 2017 and last Friday I took my last steroid. However, I am very sore and wonder if it's still with me. I wish you all the best and hope this time things work out. It just doesn't want to go away does it! Look forward to hearing your progress.

Kathryn

[DevonMichael]

Good luck I hope it works for you. I was ok on the first month and was enjoying dropping my five tablet daily regime and accepted some low energy and some aches as a trade off. However I got worse into month two and by month three the reduced mobility and pains in shoulders on dressing became too much. Now four days on with 15mg a day I am back to gardening with a spring in my step noticed by my neighbours. Hope you have better luck than me!