Getting frustrated!

[Lyndaki]

Hi all,

I’ve been on 2.5mg Prednisolone now since around August 2021, having started at 60mg back in November 2018. At my last conversation with the rheumatologist, he said he was happy with me at that level if I was feeling good so I continued. Not had any further blood tests etc but decided to try & reduce to 2mg in November. After a week, the old upper arm and clavicle pain returned along with fatigue so I had to go up to 3 or 4 for a week to get myself ok again. Eventually got back to 2.5 & have been fine. I went on holiday recently for 2 weeks & walked between 10,000 & 16,500 steps every day with absolutely no side effects. I got home, & bang, the aches were back, including hips. I did 2 days at 5mg & am now back on 2.5, & so far, feeling ok. Do you think it’s just “catch up” after all my holiday walking that caused it? I. Normally pretty active, trying to walk 9-10,000 steps a day so it’s not like it was totally out of character. I’d really like to get down to 2mg….& lower! ….but not being very successful! Do you think if I took 2 & 2.5 on alternate days, that might work? Sorry for long post but I am getting very frustrated! …..as I’m sure many of you are!

[fmkkm]

Hi,Your doctor is happy at 2.5, you feel good at 2.5, what’s the hurry?

[Lyndaki in reply to fmkkm]

I thought that after 6 months on the same dose I might be ready to reduce…even by half mg🥴

[DorsetLady PMRGCAuk volunteer in reply to Lyndaki]

You probably would have, if holiday hadn’t come along…but it’s what it is!

[fmkkm in reply to Lyndaki]

I hear you, it’s difficult to figure out. I’ve been at this 6 years now and down as low as 2.0 for a while. I’m on 3.5 mg now heading slowly to 3.Be patient, go slow, you’ll get there.💕

[DorsetLady PMRGCAuk volunteer]

As you suggest, probably a knock on effect from holiday….and no point in getting frustrated.Many of us with GCA have taken a good 4 years or longer to get off Pred…and the last few mgs are the most difficult. Took me as long to get from 10mg to zero as it did from 80mg to 10mg….

Personally I would stick with 2.5mg for another month or two - and then maybe try what you suggest or either of these tapers -

healthunlocked.com/pmrgcauk...

healthunlocked.com/pmrgcauk...

…and to be honest, there really is no rush, don’t upset the apple cart so late in the day.,

[Lyndaki in reply to DorsetLady]

Thanks…guess I’ll just have to be patient! 🥴

[DorsetLady PMRGCAuk volunteer in reply to Lyndaki]

Patience is very much required in theses illnesses….not always easy 😳

[Lyndaki in reply to DorsetLady]

True! 🙄

[Lyndaki]

Thanks all… chin up & carry on!

[PMRpro Ambassador]

To be at 2.5 and that well is excellent - and Prof Dasgupta told us in a seminar that he often keeps patients at 2-5mg because he finds it reduces the incidence of relapses.

You never were reducing relentlessly to zero - you were tapering to find the lowest effective dose that works as well as the starting dose. To find it at 2.5 is jolly good! And however slowly you try to reduce - nothing will get you below the minimum dose you need. Pushing it risks you having a flare/relapse and having to go back to a higher dose.

[Lyndaki in reply to PMRpro]

Thank you….I guess I was just going through a “I’m fed up with this” patch but I see the good sense in what you’re saying.

[Gallagher1a in reply to Lyndaki]

I am also on 2.5 mg daily and have been for over a year , I have tried a few times to get lower ,tried reducing to 2 ml on two days a week (that’s only 1 ml less a week isn’t it ! ) but after a couple of weeks I start to feel uncomfortable in my shoulders and hips ,l can’t make my mind up if it’s the start of a flare or withdrawal from the pred so I go up again to 2.5 daily ,I don’t know if I should persevere and hope the pain settles, sometimes I think I use the pred as a crutch and think it’s never the right time to reduce and use stressful situations eg holidays ,business trips ,outings etc when you need to feel on top form so don’t cut down if things like that are looming.

[PMRpro Ambassador in reply to Gallagher1a]

When you have problems at the same sort of dose repeatedly it is usually your body telling you that you have arrived at your interim destination - the lowest dose that manages the ongoing disease activity.

[Gallagher1a in reply to PMRpro]

How long do you think I should wait then before I try to reduce again ? Thank you for your advice .

[PMRpro Ambassador in reply to Gallagher1a]

You do need to try occasionally - but don't make it a be-all and end-all and don't feel pressured. I wouldn't worry about trying that 1/2mg more often than over 3 months or so. Whatever you are comfortable with - one day it will work.

[Lyndaki in reply to PMRpro]

Thanks for the encouragement…I will try to be more patient! 😁

[PMRpro Ambassador in reply to Lyndaki]

We do say again and again - if you don't learn anything else with PMR - it will be patience!

[Lyndaki in reply to PMRpro]

So very true!!! 🙄😂

[Lyndaki in reply to Gallagher1a]

Yes I do sympathise! Sometimes I wonder if it’s just arthritis when it’s my hips, but the arm/clavicle thing is definitely PMR. Hey ho, onwards & upwards!

[Devonspinner]

Hello Lyndaki, can't get over how similar our stories are. I was diagnosed with PMR April 2018 then GCA November 2019. Like you, it took me ages to reduce from a high dose. Made it to 6 mgs then had a flare so back up to 10 mg. I have been on 2.5 mg for about 6 months and feeling fine. I was thinking that maybe I am over PCR and taking prednisolone unnecessarily which is not what you want to do in a pandemic. I walk every day, at least 10,00 steps and run once a week. I am trying to get down to 2 mg but within a week of 2mg I am getting the aches and pains in my shoulders and pelvis. How can 0.5 mg make so much difference. I will be interested to hear how you get on with further reductions !

[DorsetLady PMRGCAuk volunteer in reply to Devonspinner]

0.5mg can make an awful lot of difference..as many have found out!

[Lyndaki in reply to DorsetLady]

Indeed!🙄

[PMRpro Ambassador in reply to Devonspinner]

I wrote a post called that about 10 years ago! And that was 1/2 mg over 2 days!