Upset by new Rhumy: Hi everybody, last time i... - PMRGCAuk

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Upset by new Rhumy

sailorman
sailorman

Hi everybody, last time i visited my Rhumy was apparently in March I was on 6mg pred I am now on 4 mg all seems ok I did go back to 6 mg in August due to relapse but now happy to be on 4 mg I have now got Type 2 Diabetes so am off sugar had eyes checked yesterday all ok in fact the Mr said they were very good considering my age 77 whatever that means. When I visited my Rhumy this morning i was shocked to get a good telling off for reducing two slowly I should be reducing at 1mg every 8 weeks I thought that was too fast, the last rhumy said i should reduce 1mg every month if that were the case I should be have been of Pred a year ago, what does the panel think?

Mike

10 Replies
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DorsetLady
DorsetLadyPMRGCAuk volunteer

Hi,

Did you have a chance to explain you’d had a flare and had to increase your dose recently? If so, what was his reaction? That to us on here would prove you’d gone below the level you need, but obviously he doesn’t think that way.

As you only diagnosed in 2017 I would say most patients would be happy to be at 4mg at this stage. I guess he’s one of the dinosaurs that still believes in the 2 year timeframe for PMR - if only!

You are at a very low dose, with little or nothing in the side effect line - apart from the diabetes which is probably due to higher previous amounts - and may well improve as you go lower.

What is your reduction plan? I would agree that maybe you should be able to reduce 1mg every 8 weeks, but perhaps you can’t.

If you try and taper too quickly you are more than likely to flare again - and to be honest that just means you end up taking more medication in the long run. So do what’s best for you.

I am on 3 mg after 10 months. My original prescription was 20 mg. I have faith in my Rheumatologist. I have minor-twinges but would not mess with my dose without discussing it with him. My main goal is to have my Adrenals kick in and I do not want to confuse their ability to function. I would hate to interrupt their progress or get into a yo yo situation. I just rest more and then I am well again.

PMRpro
PMRproAmbassador in reply to Gary1310

You are very lucky - only about 1 in 5 patients is able to reduce like that in PMR.

PMRpro
PMRproAmbassador

1mg every 2 months is fair enough - providing the symptoms are still under control and your adrenal function is keeping up. But I'd try 1/2mg per month and a slow taper. If you have another relapse you can tell him he caused it and you have reached the lowest dose that manages the symptoms - and nothing he can do will change that at present.

Most decent doctors would be delighted with a 77 year old who had got down to 4mg in 2 years. Would your GP look after you and not be so pushy?

Thank you, I think I am doing very well. I am able to rest when I want. This group has let me realize how important pacing is.....so I limit effort everyday. I limit my chores to most necessary, and only two per day. Now I need to try to diet....that extra 25 pounds is more effort to carry. One Day at a Time...so far so good. I am not in remission, yet...hopefully I can reach that goal.

"The Panel", says your Rheumy needs to learn that PMR can't read the guidebook and chooses to let us taper off our Pain Management Medication in its own sweet time!

Considering the fact you had a Flare and had to increase again you are actually doing very well.

Now you have been diagnosed with Type 2 Diabetes you need to take it slowly while your body also gets used to a new diet and lifestyle regime.

Listen to your other Doctors not Professor Timetable and you will keep doing the good work to recovery you have already begun.

sailorman
sailorman in reply to Blearyeyed

Thank you for your reply, how do we know when we can stop taking Pred all together I have other problems which can give me pain just like PMR like a torn bicep tendon my rhumy suggests it may have been that rather than a relapse, she may well have been right so I shall continue as before I have to say I am amazingly fit able to walk even run when needed so compared to many on here I am very lucky.

Mike

PMRpro
PMRproAmbassador in reply to sailorman

How do we know? When we can taper in small steps without PMR pain and stiffness returning and finally get to zero and stay symptom-free. That is the only way. It does mean we have to be able to judge what isn't PMR - but if PMR is flaring because the pred dose is too low, the symptoms it is causing will steadily get worse and then improve if you take a bigger dose of pred. Other things will stay much the same because the pred will work for PMR but is less likely to work for other things.

You’ve done well, despite your rheumy not appreciating your success. My GP has said just aim for 5mg, not 0 (I’m at 9.5....again after a year and a half). I had my first flare following my former rheumy’s taper which was too fast and ended up back at 15mg for 6 weeks before embarking on my own, slower taper.

I would not speed up or adjust my taper to suit a physician. Rather I’d keep listening to my body and start dropping 1/2mg, especially now that you’re under 5.

It is challenging enough as it is dealing with all the negative aspects of having PMR, let alone having to deal with a demanding rheumy who puts pressure on you and shamed you despite your best efforts. Exactly why I stopped going to my former rheumy after only 3 appointments. The stress of seeing her was not good for me, and my GP is lovely and works WITH me, not against me. Consider seeing a different rheumy if you have the option, or try to ignore the demands and simply go at your own comfortable, SLOW pace.

sailorman
sailorman in reply to PMRCanada

Thank you for your reply, unfortunately I was feeling pleased with myself so it came as a shock to be told I should have reduced more. I also have had type 2 diabetes diagnosed so I have cut out sugar and am trying to lose weight which I am doing successfully. Anyway thank you for your kind words I shall attempt to continue with my method of reduction.

Mike

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