Help tapering Prednisone

[PMR6498]

Hi, joined today.

Right hip replacement in February likely triggered my PMR. Started Prednisone in May/24, 20 mg, after Urgent Care visit. PCP was not convinced it was PMR. Prednisone relieved neck, shoulder, waist pain within three days. Lab work confirmed PMR.

Did not get an appointment for a Rheumatologist until September. I was already tapering down to 10mg/day. Rheumatologist insisted I start over taking 15mg for 30 days; 10mg for 30 days; 5mg for 30 days. Then he wanted me to switch to methotrexate.

F/u labs indicated prednisone was working well. Liver values were in the upper acceptable range.

I tapered to10mg for 20 days, then I did 7.5mg for 10 days. I was feeling pretty good but had a flair and I’m back to 10mg per day. My PMR sounds relatively mild compared to some who have this condition.

My questions:

1. Those who have mild PMR. Can you share how you are tapering, dosage and duration?

2. Where do you experience pain?

My pain, 1-2, has moved to my left elbow and forearm, both wrists, both ankles. Also occasionally my neck and shoulders. This occurs in the morning. Symptoms are slightly noticeable after 2 hours of taking prednisone.

3. I am a social drinker. Average 6-8 drinks a week. Beer or wine or spirits. My liver is good. My doctors are not happy but I have read articles this is not a significant risk. Please advise if you are similar or have experienced negative effects.

4. Has anyone changed from Prednisone to Methotrexate? How has that worked for you?

5. I would appreciate any advice. Thank you for reading this thread!

[DorsetLady PMRGCAuk volunteer]

hi

This is usual tapering suggestions copied from British Society of Rheumatology [BSR] advice in management of PMR - although I would imagine the ACR is similar -

The suggested regimen is:

. Daily prednisolone 15 mg for 3 weeks

. Then 12.5mg for 3 weeks

. Then 10mg for 4–6 weeks

. Then reduction by 1 mg every 4–8 weeks or alternate

day reductions (e.g. 10/7.5mg alternate days, etc.)

However, there is no consistent evidence for an ideal steroid regimen suitable for all patients.

Therefore, the approach to treatment must be flexible and tailored to the individual as there is heterogeneity in disease course.

Some benefit from a more gradual steroid taper.

Dose adjustment may be required for disease severity, comorbidity, side effects and patient wishes.

*Note- this particular suggestion is not usually recommended on here - ‘or alternate

day reductions (e.g. 10/7.5mg alternate days, etc.)’

Not sure there is a mild form of PMR, however sometimes there is a difference in how long it lasts, and males usually [but not always]may fare better.

As I had GCA not PMR I won’t comment on specific pain issues - other will be along with their experiences - but maybe have a look at these links - one on general information, the other on PMR stories -

healthunlocked.com/pmrgcauk...

healthunlocked.com/pmrgcauk...

[PMR6498 in reply to DorsetLady]

Thank you for your reply. This site offers so much more information than my PCP and Rheumatologist provided!

[alangg]

Your dosage reductions sound a bit extreme to me. I started on 15mg and it took me nearly 3 years to reach zero. My 'golden rules' were to never reduce the dose by more than 10%, taper down to the new dose over 4 weeks using a DSNS plan, stay on the new dose for 2 weeks to be sure that it is sufficient and then, if it is, begin a new taper.

'Cliff edge' reductions (or increases) tend to create the 'yo-yo' effect and it becomes very difficult to gain control when you are trying to reduce the dose.

I was a social drinker all the way through my PMR with no problems. I also carried on my job which was quite physical, never saw a Rheumy and never took Methotrexate.

Hope this helps!

[PMR6498 in reply to alangg]

Thank you for your reply!

[PMRpro Ambassador]

Just a quick reply - methotrexate does NOT replace pred unless you below to a very smalll cohort of patients. For them it works brilliantly but you ALWAYS start it alongside pred and then see if you can taper with it. Many taper just as well without it and without its adverse effects.

If it feels mild - that is probably because you are on enough pred to manage the inflammation. And there really isn't any difference - you let your PMR and your symptoms guide how you taper. But you DON'T taper in big steps. From 10mg down, go in 1mg steps at most. And leave 3 to 4 weeks between steps down to be sure you are still on enough. You aren't heading relentlessly to zero, you are looking for the lowest effective dose at any time - there is a difference.

Many of us still have a drink - those who find negative effects probably drink less. Many find carbs in general a bigger problem in causing aches, especially if they suddenly eat a lot.

[PMR6498 in reply to PMRpro]

Thank you for your reply!

[TandemTime]

I am very interested by the replies given ( just joined this group today, which seems very helpful )

I was doing well on BRS advice also given by the Rhumatologist. 15, 12.5 then took the 10mg dose for 10 days but got 15 % of symptoms back so popped myself back to 12.5 two days ago and I am hoping not to have to go to 15 as each shelf caused new symptoms like anxiety, quick decision making and knocking things over ( unlike my normal self ) ..

I am going to collect my 1mg tablets and use them when I feel I can aim for 10mg again. I am guessing at this but the Alangg post seems to make sense to me. I feel that if these magic tablets can have such an amazing effect they are pretty strong for me.

I will add that the Rhumatologist was very keen to undertake lots of blood tests on me before he let me have the steriods as he was keen to rule out Lupus, I have a lot of faith in him.

[PMRpro Ambassador in reply to TandemTime]

Hi and welcome!

[DorsetLady PMRGCAuk volunteer in reply to TandemTime]

The BSR advice doesn’t work for everyone, as many have discovered.. and we often suggest a 1mg reduction from 15mg rather than 2.5mg and on a monthly basis. 2 weeks often isn’t long enough to know if current dose is sufficient before you drop down.

The issues you mention after each reduction could be steroid withdrawal… I always compared it to PMT symptoms [many moons ago]. One way of avoiding that is to employ one of the slower tapering regimes…. Makes it slightly easier to get from a. to b.

Most used here-

healthunlocked.com/pmrgcauk...

healthunlocked.com/pmrgcauk...

As you are new, maybe have a look at this also -

healthunlocked.com/pmrgcauk...

[TandemTime in reply to DorsetLady]

This is amazing! Thank you so much for your very quick reply and time given. I am feeling what I read here makes such good sense, it's making me feel less isolated and more empowered. I will now follow your links. I work with 4 physios in a private practice and understand a bit about the trials of shoulder and neck pain but this diagnosis is all so new to me.

Thank you for making my Sunday feel better. 😀

[DorsetLady PMRGCAuk volunteer in reply to TandemTime]

It is new to you -and probably your colleagues- so you can teach them how to deal with PMR affected muscles..

Some physios are good with PMR, but some not so… so education’s the name of the game. 😊

Take care - always someone around if need us.

[Trulyscrumpious]

l was interested in your history. I had exactly the same experience. About 3 months after a hip replacement l got PMR. The surgery was not too successful and l was in a lot of pain for the first 12 months. Even now l have a limp which causes back ache. It’s a double wammy because walking or standing after about 10 mins results in exhaustion from the PMR. Good luck with your tapering

[PMR6498 in reply to Trulyscrumpious]

So sorry to hear your situation. I will share my post hip surgery issues.

My rehab was progressing well immediately after surgery through month 1 & 2, from walker to a rollator to a cane. Started PT at home, then at a facility.

During month 2, I was experiencing pain not managed by OTC meds. Determined my gluts shrank/tightened a lot applying pressure on my sciatic nerve. Over next month of PT I was able to resolve sciatica issue. Also determined a nerve running across the front of my quads was damaged during surgery. I have numbness and discomfort just below my surgery incision. Fortunately it does not impact use of my leg.

So the above issues (stress) likely triggered my PMR which occured month 3. Months 3&4 was pain and uncertainty. My PCP was noncommittal on diagnosis and pushed OTC meds. Month 5 an Urgent Care visit and a recommendation from a friend & doctor got me started on Prednisone with immediate relief.

I hope you have discussed your post surgery issues with your doctors and have a plan going forward.

Continued stretching exercises of upper and lower body have been key to my well being. Our Local YMCA offers several exercise classes of varying difficulty. It’s a good way to improve your health and meet some new friends. Good luck.

[Trulyscrumpious in reply to PMR6498]

Thanks for your quick reply. I had my replacement done at Wrightington Hospital in the UK, where John Charney invented the hip replacement. My Surgeon was a disciple of Charney and still used his original method. This involved cutting a bit of femur off to press in the new hip joint , and then sewing it in again. Unfortunately my internal stitches came undone, causing the pain. I did all the exercises but though the pain went it meant the hip was not supported and made me limp, leading to back ache. It came out after 6 months and was replaced manually. It still comes half out and then clonks back in, which is always a bit disconcerting! On a review l was told they could not reverse it. So l have to make the best of it. A Rolator helps but l need constant rests because of PMR fatigue. At 88, l am thankful that l can still enjoy life and have a wonderful family nearby.