How to relieve pain

[lynda1955]

What methods to people use to ease their pain. I’m day 5 of steroids and taking coco Damon plus heat pads. Movement in morning is most painful. Even during the day the smallest movement can hurt,

[Merryfield]

If you have PMR, I would say you’re not on enough steroids.

[DorsetLady PMRGCAuk volunteer]

Hi and welcome,

As you have only been on Pred for 5 days perhaps you are expecting too much, too soon … but what dose are you on? As  piglette says your current dose may not be enough… so a bit more info from you might help.

If you are on enough Pred, you shouldn’t need to add in any pain medication nor other therapies…

But maybe have a look at this for general info -

healthunlocked.com/pmrgcauk...

[lynda1955 in reply to DorsetLady]

I’m on 15mg of prednisolone and have to phone GP for consultation next week.

[DorsetLady PMRGCAuk volunteer in reply to lynda1955]

Okay, well even though that’s a very common starting dose, it doesn’t work for everyone, nor does it always work immediately- which some doctor’s imply.

Make a note of how things progress [or not] daily so you can tell your GP… and hopefully he will increase your dose next time you speak if things haven’t improved by then. If it becomes unbearable then please contact GP before scheduled appointment.

[lynda1955]

thanks for advice.

[Hunter134 in reply to lynda1955]

I was out on 15 mg and it took two weeks for my pain to lesson.

[Merryfield]

I was started high —40 mgs. but it knocked out the pain and non-function in less than 24 hrs.

[agingfeminist]

20mg stopped the pain within hours for me....but remember when you find the right dose that stops the pain, you still have the disease (so be kind to yourself)...and tapering has to be done very slowly.

Nothing but steroids stops the pain.

I am now in year 4 and tapering very slowly ...and living in hope that (for some unknown reason) the PMR is going into remission.

With long-term use of steroids, remember to cut dramtically the carbs in your diet (so you don't put on weight, or risk diabetes)

Keep in touch with this amazing support group...their wisdom can get you through the tough times.

[lynda1955 in reply to agingfeminist]

Thanks.

[random901]

Hi lynda1955 I started on 40mg 9 weeks ago for my GCA PMR and the pain and stiffness subsided almost immediately. But I still take paracetamol and occasionally codeine for neck and back muscle pain, plus claudication, especially towards evening.

[lynda1955 in reply to random901]

Thanks.

[Thelmarina]

If you’ve just started it sounds as if you need a higher dose. I need 25mgs for ten days to reduce my symptoms. Then reduced to 20mgs quite rapidly. Good luck!

[Paulx222 in reply to Thelmarina]

Hi,

I have just started on Pred two days ago (30mg) and was expecting huge improvements....they've been negligible so far....did yours take a bit longer to work? I have read so many reports that all pain is gone on day 1 and I'm wondering what's going on with me.

Cheers

[DorsetLady PMRGCAuk volunteer in reply to Paulx222]

I have read so many reports that all pain is gone on day 1

Does for some, but certainly not everybody... give it time... if you haven't had a significant response - at least 70% better with 2 weeks that's when you need to discuss with prescriber..

[lynda1955 in reply to DorsetLady]

Thanks

[Paulx222 in reply to DorsetLady]

Thank you DL as always.

I'll keep plugging away.

[lynda1955]

thanks.

[PMRpro Ambassador]

In the five years I had PMR without pred I found warmth helped but the best result was warmth before getting out of bed - these days there are superb electric blankets for that purpose - then stretching in a hot shower to get moving. I actually dragged myself to the car and did aquafit classes in a warm pool Monday to Friday and the earlier in the day the class was, the better the rest of the day was. But pain management in PMR is almost entirely an adequate dose of pred and 5 days of 15mg is still early days. 15mg is the bottom of the range for starting dose and you may need more to tip the scale and improve the pain dramatically.

Have you had ANY improvement?

[lynda1955 in reply to PMRpro]

Thanks.

[PMRpro Ambassador in reply to lynda1955]

As I asked - have you had ANY improvement?

[Pixix]

I started on 15mg 4 years ago, & it was OK, & working somewhat, but not great. My GP raised it to 17mg & it was excellent! Good luck!

[lynda1955]

thanks.

[Missus835]

Sounds like too low a dose of Pred. I take paracetamol with codeine for muscle spasms, but my circumstances are different. Otherwise, the Pred 20mg I started at, took care of all the PMR related pain immediately.

[SheffieldJane]

Pred needs to be sufficient to relieve at least 70% of your pain. You may have to revisit your dose and tapering method.

[LindyMc]

ncbi.nlm.nih.gov/pmc/articl...

is an interesting bit of research that studies a group of PMR sufferers who were started of on 12.5mg and for about 75% that was fine, especially women, and especially with regular weight. There are reviews of some associated studies including another group put on 20mg and they too had about 75% success rate with women and those with regular weight responding quicker. I read this 5 days in to starting treatment which worked comprehensively in about 6 hrs; and like the rest of you guys were started on 15mg. So as the drift down needs to be slow, I thought it was worth drifting down to a lower start dose, which I have done with no ill effects, now 10 days further on. Blood tests in couple of days and review next Tuesday.

[PMRpro Ambassador in reply to LindyMc]

But you also need to mention that the response took up to a month! And many patients aren't willing to wait a month - nor are some doctors who look for the speedy response as a confirmation of diagnosis and that will only ever apply if the patient is on enough pred. A low start dose may have advantages for some, but for many they would never get relief and be told it isn't PMR when it is. There is also much less wiggle room for tapering and symptoms may reappear very quickly.

[LindyMc in reply to PMRpro]

Thank you again - you are not PMRpro for nothing I see! Thanks for being there to show up the holes in my thinking. All v strange and new and I feel more comfortable when I know more.

[PMRpro Ambassador in reply to LindyMc]

Years of practice!!!! I think most people feel happier when they have things explained logically - and doctors either can't or won't. Some think we wouldn't understand, forgetting many of us have the education to get to grips with things like that. So we try to fill the gap.

[PMR_sufferer1]

Lynda I see a lot of responses from the many here that understand PMR.But start with the basic question is it PMR ?

Explain where you hurt and is it bi lateral just to help confirm your diagnosis as all here know where the pain is trust me and it's horrible.

The start dose for many including me was 15mg Pred for PMR but it's more for GCA. I felt the benefit within hours.

The other thing to try is to split the dose taking 5 mg in the morning afternoon and before bed. Many here say not to do this but it worked for me. I have never slept better and was able to.jump out of bed not have to drag myself out as I had to the 3 months before diagnosis

Good luck you will find the answer for you and feel better.

[lynda1955]

blood tests and symptoms were used to confirm PMR. Pain in right shoulder that went to both then knees and legs going up into buttocks. Pain is about 50% better than at end November when I found it difficult on morning to even get down the stairs. Dr wants too speak to her next week.

[PMRpro Ambassador in reply to lynda1955]

In that case I'd say you probably do need 20mg and it will make a massive difference - and you will get back to 15mg fairly easily.

[lynda1955]

thanks.

[Darkchocolate1]

I started on 20 mg prednisone for one month. All my pain was gone in 24 hours. I felt terrific. Reduced to 15 mg after the first month then down slowly after a month on 15 mg. After three years I am down to 9 mg, my lowest ever. Starting Kevzara soon to help taper.