New to Healthunlocked but been fighting Polymyalg... - PMRGCAuk

PMRGCAuk

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New to Healthunlocked but been fighting Polymyalgia since September 2018

Blomps profile image
8 Replies

I was on holiday in France and awoke one morning with what I can only describe as "Rigour Mortis" but still breathing. Neck shoulders arms hips and knees were affected. When back home I was put on 20 mg of Prednisolone which was increased to 40 mg as Temporal Arteritis was a possibility. Ive had two attempts at reducing dosage. At present on 15mg with 6 Methotrexate weekly. Ive been dropping 2.5mg Preds every 3 weeks but noticed on the last drop a few aches have been niggling again and wonder reading posts if 1mg drops would be better. Anyone's thoughts please.

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Blomps
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Soraya_PMR profile image
Soraya_PMR

Firstly you need to be aware of the difference between steroid withdrawal pains and true returning pains of PMR.

SW pains tend to happen early, days 1-3, gradually fading away, feels just like PMR, but is your body demanding its pred dose back!

If you’ve gone too low with pred then PMR pains creep back from around day 6+ and get worse.

With SW pains you stick it out with some paracetamol and rest. With the latter you’ll have to return to your previous good dose of pred.

Because these two are difficult to distinguish, taking 1mg drops for 3-4 weeks on each dose helps you to distinguish them, and get some stability.

If you drop 2.5 mg, you’ll likely have BIG SW pains, and you won’t know if you’re 0.5mg or 2.5mg too low should PMR pains recur.

Slow down now to 1mg a month reduction. Never more than 10% reduction at a time. Later you’ll likely have to drop 0.5mg at a time when you get to 10 or just below.

Blomps profile image
Blomps in reply to Soraya_PMR

Thanks for your thoughts I will get a prescription for some 1mg Steroids.

SnazzyD profile image
SnazzyD in reply to Soraya_PMR

I agree with Soraya. Sometimes my withdrawal pains have made me think I’ve added PMR to my GCA.

SheffieldJane profile image
SheffieldJane

I think it would be a good idea at your stage. Your method has served you well so far but it can be tricker at the lower doses. When I got to 10 mgs I started going down by half a mg, it was gentler. I am currently at 5 mgs bracing myself for my next half a mg drop.

Is Methotrexate helping at all?

Blomps profile image
Blomps in reply to SheffieldJane

Not sure about methotrexate whether its making any difference at all. The reason my Doc put me on was to help get off the steroids quicker. I have felt quite good since on 6 Methotrexate weekly but whether its the result of them or not is a difficult one. Just got to go with advice

Hello Blomps

You’ve been given some very sound advice already from Soraya, so I’ll tell you about my Reduction from 18mg to 7.5mg using Methotrexate.

18mg 16.5mg 15mg 13.5mg 12mg 10.5mg 9mg ie 10% of current dose until l got to 9mg & from there on by 0.5mg until 7.5mg when my life was disrupted by a Breast Cancer Diagnosis! I also used one of the Slow Tapers as described & used by many on this Group

I hope the information will be of help to you.

Kind Regards

MrsN

Blomps profile image
Blomps in reply to

Thanks all the advice has been very helpful.

Yellowbluebell profile image
Yellowbluebell in reply to

My reduction from 15mg to the 10mg I am on now similar ti mrsnails. Next stop 9.5 but not doing that until after I move house in 3 weeks. I will only be going down 0.5mg and will be taking each drop very slowly. I think you need to slow down.

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