Help with dose whilst tapering

[Lopera]

I began on 15mg per week and got down to 10mg and all was well. I decreased to 9mg and the stiffness came back so I though I would increase to 9.5mg.

This didn't help so I have gone back up to 10mg, thinking that was where I was last well. However the stiffness has not gone away and might be getting worse.

The only thing new thing is that I started taking Binosto for osteoporosis in mid Jan.

Pretty sure I need to increase but not sure by how much. Should I creep up half a milligram or take a larger dose.

I would welcome your advice.

[DorsetLady PMRGCAuk volunteer]

I would doubt that adding in Binosto would be the cause… sounds as if you have just gone below the dose of Pred you require.

Suggest you treat as a flare- see protocol in the link - and once you have got your PMR back under control drop back to 10mg and stay there for at least a month before you attempt tapering again.

healthunlocked.com/pmrgcauk...

Creeping up rarely works in this scenario- you need a bolder approach. I also think you probably need to stay at 10mg for a bit longer than usual - you have other issues, and you did mention stress in previous post, plus winter often makes tapering difficult.

Would also say, ease up on tapering anyway.. 0.5mg at a time, and if necessarily start using a slower tapering plan.

[Lopera in reply to DorsetLady]

Thank you DL, I think I just needed the confidence to go up to 15mg which you have given me. I will do this probably for 10 days and then drop down to 10mg. 😘

[Lopera in reply to DorsetLady]

I went up to 15gm last Tuesday so this is day 5. When I first started on prednisolone back in August, the effect was within hours and this time I was expecting to feel relief by the end of Tuesday but the pain/stiffness has not gone. I'm a bit worried and not sure what to do. Any advice would be welcome.

[DorsetLady PMRGCAuk volunteer in reply to Lopera]

When you have flared it can take longer to get back under control than initially - sounds bonkers but it seems to be a fact. I’d give it another 5 days [although a flare advice says you can stay 14 days] - if it’s still not better by that time, then you can worry… 😊. Hopefully you won’t need to…

[Lopera in reply to DorsetLady]

Worried already, haha, glass half full! Will give it another 5 days 😬

Thank you for replying.

[Lopera in reply to DorsetLady]

I mean half empty!

[PMRpro Ambassador in reply to Lopera]

But the point is - the glass can be refilled ...

[Lopera in reply to PMRpro]

Googling, can you change from glass half empty to glass half full!

I know you are right and there must be people three quarters empty so I should count my blessings.

[Lopera in reply to DorsetLady]

Well I’ve done 2 weeks of 15mg but the hip pain, more like groin pain, didn’t go away. Perhaps it’s something else. Have dropped back down to 10mg and will stay there. I’m going to try exercises. It’s so annoying because it’s hampering my efforts to get myself fitter after the spinal fractures.

[DorsetLady PMRGCAuk volunteer in reply to Lopera]

Okay, well that probably indicates it isn’t your PMR….so maybe back to drawing board. Maybe try ordinary painkillers - either in tablet form or topical gel… .

Please let us know how things go….

[Lopera in reply to DorsetLady]

Yes I will and thank you.

[PMRpro Ambassador in reply to Lopera]

If the hip pain is due to bursitis - and it could well be because of walking differently due to the fractures and then the PMR feeding it - oral pred took a couple of months to improve the pain for me. Steroid injections were fast. But you really need exercises too.

[Lopera in reply to PMRpro]

I am seeing a physio on Thursday and will talk to her about it. I am very lucky, (glass beginning to fill up!). I can devote my time to concentrating on my fitness. Wonderful husband who has even taken on the ironing!

[DorsetLady PMRGCAuk volunteer in reply to Lopera]

Ironing? Very little done in my household nowadays… 😂🤣

[Lopera in reply to DorsetLady]

Ex military, he's better than me!

[DorsetLady PMRGCAuk volunteer in reply to Lopera]

So was my late hubby, but he was rubbish at it, so I got lumbered with all his shirts etc [as it was in those days - no combat gear as everyday wear like now ] .. hence I now only do what’s really necessary…mainly when sewing machine has been used for alterations etc,, 😊

[Lopera in reply to DorsetLady]

You will remember shirtsleeve order then. I sometimes did his shirts and they were pretty awful creases when I did it.

[DorsetLady PMRGCAuk volunteer in reply to Lopera]

I do too well - but my auntie taught me how to iron shirts properly before I got married! So I am good at them☺️

[PMRpro Ambassador in reply to Lopera]

Mine took so long to iron a shirt I couldn't stand it!! It was the only household item he could switch on ...

I actually didn't mind ironing - in front of the TV and sport on. I ironed yesterday - pure cotton bedding, so satisfying!

[Lopera in reply to PMRpro]

Actually, I don't mind ironing and find it's a good way to warm up on a cold day but am avoiding it until back completely healed. He does it watching match of the day on catchup.

[PMRpro Ambassador in reply to Lopera]

No catchup here - can see its uses. But not match of the day!! I moved the ironing board to the spare room after my husband died and it wasn't his study any more so it tends to get done in dribs and drabs and as little as possible. Except bedding! But you are right about warming you up - I was in a sleeveless t-shirt when my daughter video called yesterday - she was in her partners big thick fleece and curled up in bed!

I have a very high ironing board - cannot cope with the usual UK models. My back is OK with ironing - it's vacuuming/sweeping/mopping that is left to the cleaner!! On doctor's orders in fact!

[Lopera in reply to PMRpro]

Yes, who irons bedding? I'm also under orders not to vacuum and mop too and happy about that!

[PMRpro Ambassador in reply to Lopera]

ME!!! I love the feeling of getting into fresh crisp pure cotton!!!

[TandemTime]

I can empathise with your situation as it feels like a balancing act.... You are aware that the Prednisolone can help you out of the PMR as you have experienced the difference it makes.... balanced with trying not to make the osteoporosis worse...by increasing the tablets. Therefore you are nervous to as it feels like back to square one etc.

This is stressful in itself. We know stress makes all this worse..! I wonder what can help that stress ..

I am on Bonesto and know that I need to be light on myself the day I take it .I warn people I work with, to say I can be a bit weird etc so just ignore me. I try to go slow in the morning as find I need to be near the bathroom anyway, then try and get out for a short quick walk. I know the Osteoporosis benefits from that walk and it seems to make me less anxious.

I have had the recommendation last week for the annual infusion which I think I will go for, then hopefully less to deal with each week but may be a week off feeling off instead a year. Might that suit you better with your other condition?

[Lopera]

Thanks TT, it is definitely a dilemma when there is osteoporosis in the background. I would prefer to be on a bone building drug but my GP can only prescribe bisphosphonates. I was referred to the osteoporosis clinic last October but have been told I probably won't get an appointment until September. My main aim at the moment is to avoid another fracture at all costs!

[PMRpro Ambassador]

Binosto/alendronic acid CAN cause joint and muscle pain so it isn't out of the question that it is the cause of the stiffness. Often the side effects of various treatments improve as the body gets used to the medications. Hopefully it will.

However, I think overshooting the dose you need is more likely and the first place to look is by treating it as a flare. Just creeping up rarely works unless it is a small difference you need and you catch it very quickly - sometimes you have to springclean before you can go back to daily dusting!

[Lopera]

Thank you, yes I have just revisited the leaflet and looked at the side effects. I think because I felt fine the first day I took it, I have not appreciated that it is in my system so I can still experience side effects.

I think the flare protocol is the right thing to do.