Need help and advice, again

[Bobbury]

Last week PMRpro very kindly helped me with my predicament (flare) whereby it was suggested that I continue with my pred at 10mg for aprox a week and then reduce to 7.5mg. This worked really well at 10mg. My walking was a lot easier and I generally felt good and upbeat.My normal dose has been 7mg for quite a few years. I have been on 7.5mg now for 4 days. Unfortunately I'm back to where I was, unable to walk any distance, feeling like i'm walking through mud. The pain is tolerable but very debilitating but the overall pain and tiredness gets to you in the end. I really do not know what to do next. It's no good seeing the doctor (if you can that is) because the GP doesn't seem to understand how it effects you mentally! So here I am again seeking help and advice on what to do next. Thanks for reading this!!

[PMRpro Ambassador]

Sounds like this is a flare due to increased disease activity - used to happen to me - and in that case the old dose isn't going to be enough, I would go back to 10mg for the moment to sort it out and try more than 7.5. I would try 9mg first and if that is OK, use one of the slow tapers to aim for 8mg and see if that works.

[Bobbury in reply to PMRpro]

Thanks for that. Again really appreciate your help. I have one hurdle to cross which I'm not looking forward to and that is getting the GP to increase my pred. They are so anti. It's like going to the headmaster where you have to explain your actions.... hey ho!

[Hidden in reply to Bobbury]

All docs are different, and some are better than others, that's a fact.

I had a big flare a few months back and thanks to the advice of PMRpro and DL I managed to get through it. I was a bit short on pred supplies at the time too and couldn't get hold of the doc, so had to take the law into my own hands and increase the dose on my own initiative. The thing is, if you do this on your own and stay at the higher dose for a couple of weeks, they can't refuse to increase your prescription supply without putting you at risk. It was a last resort for me at the time to increase my dose against doc's advice, but I had no choice as I was barely able to move and in incredible pain, and the phone answering dragon at the docs surgery wouldn't let me speak to the doc. I was worried sick about having to face the doc and tell her what I had done, but when it came to crunch time and I had to explain it all to her she was very understanding, and at that point decided to refer me to a rheumatologist as the plan I was following (ie the official guidelines on reducing) clearly wasn't working, she also gave me free reign to manage my own dosage from that moment onwards.

Four months later and I'm still tapering successfully on DL's 5 week plan and doing very well on the way to 6.5mg from 7.0mg. There is a little bit of hip and shoulder stiffness in the morning every day - definitely not the beginning of another flare as I've had it every day in varying degrees since day one, but it now quickly vanishes after an hour or so.

Three days ago I took a big risk and spent 5 hours removing an unwanted tree from a friends garden. Very hard work, and I was totally goosed at the end of it, but I'm still feeling fine PMR-wise, so onwards and upwards for the moment at least. 🤞

I hope this little story helps and encourages you. 😊

[Bobbury in reply to Hidden]

Your story more or less mirrors my own. I’m more than grateful tp PMR pro and DL without their help and advice Im not sure where I would be. I can’t thank them enough! I done exactly the same as you and increased my dosage from my regular prescription without consulting the GP! When I began to feel better on the higher dose I knew I had to tackle the GP/surgery for additional prescription. I just dreaded the thought of discussing what I had done with the GP. And bearing In mind I was fast running out of Ped. So I conjured up all my strength and went for it. I telephone the surgery yesterday and immediately I spoke to the receptionist, explained what had happened. The immediate response, we’re very busy at the moment (hear we go I thought same old stuff) but NO I was wrong. The receptionist said I try and put you through to the pharmacy but you might have to wait! I prepared myself fir the wait. Immediately the pharmacist pick the phone up, I explained the situation again. All went quite…..can you hold a sec need to check records etc. After a short wait the pharmacist was back….. I’ve put that through for you. You can pick up the prescription tonight!!! What, really I said, yes all done for you. Well I was flabbergasted. I just couldn’t thank the pharmacist enough.

So sometimes you can be so wrong!!

[Hidden in reply to Bobbury]

Great. You can get back on track with no worries now.

[DorsetLady PMRGCAuk volunteer]

Hi

That’s a shame (being polite) -you can try 10mg again for another week -and then step down more gently. Maybe 9mg for 5 days, then to 8mg -and use that as your NEW start point.

Frustrating-but obviously 7.5mg is just a wee bit too low at the moment.

[Bobbury in reply to DorsetLady]

Thanks Dorset Lady. Appreciate your help

[Smithie49]

Hi Bobbury. I could have written that!!! I had got down to 6 mg and coped with the stiffness as it didn't stop me doing what I want to. However, I over did things a few weeks back and had a flare. Went up to 10mg for 4 days then tapered back to 7mg. However, whenever I exert myself I'm so tired and stiff it's ridiculous. So spoke with the GP and she said to go back to 10 and stay there until I'm free of the symptoms. Good luck with your PMR journey!

[Bobbury in reply to Smithie49]

Hello Smithie49

It’s really nice to known I’m not alone with this dreaded PMR and it’s symptoms. I’ve had mine for many years now and still can’t get to grips with it. It ceases to amaze me that one day your fine, the next day….at the bottom of the pit! You look ok and beneath there’s this fight going on. GP’s, friends and family have no idea. Bless them, they try to understand! Hope as well with you now. Have a good Easter.

[herdysheep]

I have had similar circumstances recently. Must have been a slow build up to a flare which I thought I could mange with a quick upping of the pred and back after a week to just above what I had been on. Didn't quite work out like that, so I went back up and will come down more slowly rather than just drop back. It can be so easy to get caught up in a 'I am reducing successfully' line of thought, and after many years, feeling bad about almost starting over. I wish I could be as sneaky as PMR!!!!

[Bobbury in reply to herdysheep]

Couldn't agree more!! Absolute nightmare. You think you're doing sort of ok, then next thing you're struggling to do anything. Hate it. You're then kind of worried about the amount you of pred you are taking and possible damage it's doing..... hey ho