How do I approach my rheumatologist

[Amkoffee]

After making five attempts at getting to 10 mg I have realized that my body just does not want to go there yet. I've had PMR for 8 months. So now that I've made this decision I've got to convince my rheumatologist who is dead set on me continuing a downward taper without stopping. She is very anxious for me to get off of prednisone. Anyone have any ideas on how to convince her that this is the best option for me? And does anyone know how long I should try staying at 11 mg before trying again?

[HeronNS]

How have you attempted your taper to 10 mg? A very slow and small step is usually more successful than a bigger one. Have you tried this:

healthunlocked.com/pmrgcauk...

[Amkoffee in reply to HeronNS]

I've done it at different slow tapers. I have come up with my own because the dead slow method is so complicated. But the last one I tried was .5 mg every two weeks. Maybe I should have drawn that out to a month but it just seems like as soon as I hit 10 mg I start hurting badly. I've even tried to wait it out for a week and it only got worse. Someone that is very knowledgeable and has PMR on another site suggests that I may need to stay where I am at (12 mg) for a while and I believe she is right.

[DorsetLady PMRGCAuk volunteer in reply to Amkoffee]

This one's not complicated -

1st week - Sun & Thurs new dose

2nd week - Sun, Tues & Thurs new dose

3rd week - Sun, Tues, Wed, Thurs new dose

4th week - Sun, Tues, Wed, Thurs & Sat new dose

5th week - all week new dose

Your Rheumy may want you off, or at least reducing Pred, but if your body's not ready it's not ready!

You need the correct amount to control your inflammation, and from what you've said at the moment 10mg is not enough - end of.

If 11mg is enough then stay there for a few weeks, and try again - but in your time not your Rheumy's.

[Amkoffee in reply to DorsetLady]

Thank you. Seeing it like that does make it easier to understand. I will try it after I've been on 11 mg for a while. But I agree with you. It is not a decision that I make or my rheumatologist makes it's a decision that my body makes.

[PMRandRA in reply to Amkoffee]

Yeah, 10 is my litmus test too! I went back up to 14 today, from 11. Will stay for a week then creep to 13 for a week then to 12 where I will stay for a month. Then daily 11,12, 11,12,11,12 for a month then will see what is potting .

I think I can, I think I can, I think I can!!!

🙄

[Charlie1boy]

I think you'll find that a group of doctors/consultants in Bristol recommended, amongst other things, that you should spend a year at 10mg before tapering down thereafter. I'm sure someone on here will give you the link. From my experience with PMR, I think that was good advice.

I know you're not at 10mg yet, but it might help you when you see your rheumatologist, and for the future.

Good luck

Paddy

[PMRandRA in reply to Charlie1boy]

True. But it is only possible to stay on 10 if it doesn't hurt so much that one wants to kill everything in reach! Must be pain free to last a year.

[Amkoffee]

Can you give me a shortcut to that? I've seen them before but I need to have them book marked to show my doctor and don't know where to find them.

[DorsetLady PMRGCAuk volunteer in reply to Amkoffee]

Hi, think this might be what you want,

rcpe.ac.uk/sites/default/fi...

Table 5, page 346

[Tiny_Tim]

Amkoffee

Yes we would all like to come off this drug, but you know what tapering down is doing to you. I think you need to be strong and take charge of what after all is your own body.

The last thing you want to have to cope with alongside this horrible illness is a dispute with someone who is supposed to be helping you .

Tiny_ Tim

[Amkoffee in reply to Tiny_Tim]

You're righ. At first I had a battle with her on how I wanted to taper slowly but I won the battle and she's been very good since. I am just fearing a battle with her on staying stagnant at the 11 mg. I am hoping that there will not be a battle but I suspect there will be because she is concerned about what the prednisone is going to do to my body. I am already pre-diabetic and I also have osteopenia. I understand her concern but I also know that I do not want to live in that kind of pain that being on a lower dose of prednisone causes.

[Margaret1951 in reply to Amkoffee]

Hi, don't be like me and suffer with both GCA and PMR. I have it 5 years and trying to come down from 7.5mg to 7mg with no success and suffer pain etc because of my own stupidity !! I am diabetic and on 2 tablets a day, and have osteoporosis because of steroids, but would sooner have that than no steroids at all and have my body rebelling again.

Please be more patient than me as I am fed up of pain etc all the time.

This forum are wonderful people and very very helpful, better than any doctor ! Although my doctor is marvelous and lets me do it how I want, but still tells me off if I am in pain lol

Good luck !!

[Patience_1]

Hello Amkoffee, I very much identify with you. Diagnosed and started on 15mg pred in September 2016, I have several times tried (VERY carefully, no big drops) to get down to 10.5mg but each time have increasingly felt pain and had to go back up. Am currently on 12mg to regain control and will then try again - but I am pretty sure my body requires about 11-11.5mg at the moment. And that should be it - end of story - but of course my gp wants me to reduce further (which I do understand, and I would dearly love to get to a lower dose).

In addition to info about the various slow tapering plans, I remember someone (sorry, can't remember who) saying on this forum that a good idea when discussing dosage with your gp/rheumy is to give clear info about the actual effects you are experiencing - ie what you are able to do/how mobile/how disabled you are on your current dose or the dose you have tried. Such a graphic picture can demonstrate very well just how much pred you need to be able to function at an adequate level. After all, there's little point in taking the pred if it doesn't make life bearable!

Best wishes

[Augustus-6 in reply to Patience_1]

Ive had pmr and now have rhumatoid arthritis i just tale pred like a yoyo. I dont taper either cery much. Im told i cant take nsaid and cocodamol constipates and is not anti inflammatory so what is left but pred?? Its crazy so when im in agony i take upbto 30 mg next day to 20 then 10 sometines 5 for a few weeks if im lucky. Last night iwas in horrendous pain in my shoulders so i took 15ng im much better today so i will take 10.

I went for bone scan i was ok im not diabetic.

[piglette]

Hi Augustus, are you saying you vary your pred between 30mg and 5mg depending how you feel. It does not sound a very good idea, what does your doctor say? NSAIDS and Cocodamol really do nothing for PMR anyway.

[Lee1945]

Try to reduce my 1mg per month or, if you struggle with that, 1/2 mg every two weeks. See how it goes