PMRGCAuk

Cut Pred too quickly!

I have had PMR for 2 years and I gradually cut down to 2mg a day pred about a month ago. Since then I have moved house ( I know I should not have cut during stressful time).

Now over the past 2 weeks I have PMR symptoms returning with a vengeance.

Sweats at night, disturbed sleep as I have pain when I move or turn, terrible pain in the morning which eases during the day but remains bad when I get up after resting, fatigue and now pain in ankle and wrist and mood changes.

I know I need to increase Pred but please any advice about what to increase to now from 2mg as I need a quick fix for the pain and can't live like this.

What should in increase to?

How long will the increased Pred mg take to make me feel better?

How long should I stay on this dose?

Thank you

Cassie

17 Replies
oldestnewest

Hit it hard with 10mg for three or four days and then come down at 1 mg every two or three days, till you get back to where you were, watching all the time and making sure you are comfortable at each drop. If you are not comfortable, then go back to where you were comfortable and wait another few days and try again.

The two top things for stress are divorce and moving house..............you should have booked a holiday away and let the rest of them get on with it.................and then come back and ordered them all around till it was shipshape (in my dreams that would happen - real life - no chance).

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Yes I will take a back seat next time and let them empty the boxes - moved 400 miles lots of stress including removal van being involved in traffic accident and written off !! So had to find another not easy!! Anyway we are here now and taken hit with PMR but all your advice on this forum is valuable

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Where you moved too, someone might know a good rheumy unless your previous one recommended someone. ?

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When I flared this summer, my dose was increased from 4mg to 10mg and my rheumy told me to stay there until my symptoms were "95% better". I spent a month at 10mg, 6 weeks at 9mg, and now a month at 8mg. Just about to taper at 0.5mg a month, as instructed by rheumy!

It's frustrating to have taken so long, but I'm determined to go slowly this time.

(Me: PMR 17 months)

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Hi Thanks so much for taking time to reply and your details are interesting - We generally don’t see Rheumis here just GP unless we have private health insurance. It’s amazing you are tapering to .5 . How are you feeling? Any pain? I was pleased to be on 2mg but it’s just not enough and I can hardly move with the pain especially getting out of bed and I have to be careful going downstairs. I just want to feel comfortable again so will increase Pred today- it’s just getting the right level. Good luck with getting off Pred nearly there!!!

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Forgot to ask when you increased from 4mg to 10mg how long did it take to feel comfortable again?

Did you have any side effects with the increase?

Thanks

Cassie

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My flare was in the form of bursitis in both hips and shoulders. Within a few days, my hips were much better, but it's taken the full 2 months for my shoulders to improve and they are still only 95% better - not 100% - but that would be greedy!

I didn't notice much difference on 10mg from 4mg. Maybe we just get used to the side-effects and put up with them.

Click on my name to see my posts relating to the bursitis and my graphs giving a visual picture of the flare and pred doses.

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Sorry - I'm not nearly there! I wish! I'm tapering at 0.5mg per month, so from 8 to 7.5mg on Sunday, then a month later, tapering from 7.5 to 7mg and so on. It should take me 16 months to get to zero IF I have no more flares!

Regarding your pain - I think we're told to go back to the lowest dose that gave us relief.

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Oh I see thought you were down to .5!! I will have a look at your posts thank you

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I'd say jinasc's advice is good, but you might not need to go as high as 10 if you'd been good at 2 for a while. Try an extra 5 mg for a week and see if it does the trick, but don't drop too quickly. I've had a couple of doctors lately tell me to stay at adequate higher dose for two or three weeks before attempting taper again. I may try tortoise not hare instead of dead slow to get myself down a mg or two in .5 decrements, then revert to dead slow.

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Thanks my gp says go up to 15mg for 3/4 days then stick at 5 for a month then he will review ( think I will go to 10mg and see how I go)

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Most of your questions can't be answered - but the usual first approach is to add 5mg to the dose at which the flare occurred. Try that and see what happens. Hopefully it is enough - if not try 10mg.

There are two reasons for a flare - either you have reduced too far or the activity of the underlying disorder has increased. In the former adding 5mg should work. In the latter you can't know - it depends on the activity of the autoimmune part.

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Thanks for explaining about the flare and what you say makes sense-think I will try 7mg ( was going for 10mg )but will see if 7 does the trick

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Dear Cassie, I'm not a doctor and I can only relate my recent experience but I got down to 2.5mg fairly quickly but experienced all the pain and other symptoms to 8/10. I decided to go back to 10 mg immediately and as I did my experience returned to pain free normality. This time I'm going to reduce much more slowly and avoid further flares!!! Good luck. Johnnox.

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Hi Jonhnox

Thanks for your reply - same as me really.

How long have you been on 10mg?

Like you I would imagine don’t like increasing as we got down to 2.5mg but has to be done to have some sort of a normal life. Yesterday on 10mg and today 2nd day- still aching this morning but waiting for 10 to kick in.

How quick after increasing did you feel better? Maybe a few days?

Cheers

Cassie

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Hi Cassie. Been on 10 mg for a few days now and noticed a big difference in 24 hours. I've still got some pain but it's at a low level and I'll stick with 10 mg a day and watch and see. If the pain worsens then I'll go to 12.5 mg till I notice improvement - not there yet. Don't feel too bad now but certainly not my old self. Good luck!

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Hi Johnox

Thanks for explaining- my GP advised zapping the pain by increasing from 2mg to 10mg for 3 to 4 days then dropping back to 5mg and see if stable at 5mg - not sure what I will do as this is trial and error. I hope you are ok at 10mg over the weekend then you don’t have to increase but you seem positive about it if that’s what you have to do to get on with your life.

Maybe when you change a dose up or down can be extra tired - hope not!!

Cassie

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