Back on Prednisolone

[Karendeena]

Just an update from my previous post.

My polymyalgia is back after 3 months off prednisolone. I saw a Rheumatologist tonight privately who was very thorough and did a physical examination on my mobility as we as a thorough verbal assessment. He confirmed that my loss of appetite and weight loss is a symptom polymyalgia and has placed me back on a low dose of prednisolone as follows - 5mg for 6 weeks and then reducing by 1mg every 6 weeks. He says this approach is better for me because I have many side effects and that I wasn't on pred long enough before (7 months). Has anyone else had this kind of dosage? I would also like to know if anyone has lost appetite or weight fro. Polymyalgia? I didn't realise this was one of the symptoms

[Exhiker]

Yes Karendeena, I had loss of appetite and weight loss when pmr first started before starting pred.

[DorsetLady PMRGCAuk volunteer]

From nhs -

“The most common symptom of polymyalgia rheumatica (PMR) is pain and stiffness in the shoulder muscles, which develops quickly over a few days or weeks.

You may also have pain in your neck and hips. Both sides of the body are usually affected.

The stiffness is often worse first thing in the morning after you wake up. It starts to improve after about 45 minutes as you become more active.

Some people with polymyalgia rheumatica also:

feel very tired

lose their appetite

lose weight

have depression”

Hope your regime works out for you,

[Nextoneplease]

Sorry to hear that the PMR is back, Karendeena 😟

In answer to your questions, yes I had a poor appetite and weight loss before diagnosis. Have never been on the doses that you’re having as I’m still stuck on 11.5mg, I’m afraid….

I hope you get relief from the pred soon and that the reducing plan works out well for you. All the best to you xx

[Karendeena in reply to Nextoneplease]

Thanks Nextoneplease, really appreciate your support

[ubaoz]

Yes, I'm another one who initially had major loss of appetite and resulting weight loss for quite a few weeks. When my appetite did come back, I was very glad of a keto/low carb diet to counteract the effects on blood sugar and the "pred munchies".

Hope the pred works well for you and you can get the PMR recurrence managed quickly.

[Karendeena in reply to ubaoz]

Thank you, O will keep you posted

[PMRpro Ambassador]

Depends on the person - I gained weight with PMR because of lack of activity, I couldn't exercise properly, and was craving carbs in the afternoons, unusual for me. It is more typical of LVV or GCA, both of which can cause PMR-type symptoms.

PMR almost NEVER goes away in 7 months, fewer than 1 in 5 patients is able to stop pred in under a year and remain at a much higher risk of relapse. What usually is the case is that the disease activity at the time of stopping the pred is very low and 1mg, even 1/2mg can be enough to contain the inflammation and symptoms. But it isn't entirely gone - and without that small amount of pred the dripping tap of inflammation eventually fills the bucket and it overflows and you have a "relapse".

So it isn't really "back", it never went away. Pred cures nothing, it is a management strategy for the inflammation and it is required as long as the underlying autoimmune disorder that creates the inflammation is active. From 5mg it pays to be really careful and SLOW about reducing, and if you successfully get to 2mg, to go even more slowly, spending a couple of months at each new dose and treating even zero as a "new dose" and using a VERY slowed slow taper. You may get to 1/2mg/day or less - a dose every other day or so - and that is so little that it won't cause side effects but it CAN be enough to keep PMR at bay. Whatever a few doctors think ...

[Broseley in reply to PMRpro]

This is really useful, PMRPro. Could it be put on FAQs, or can I save it somehow please?

[PMRpro Ambassador in reply to Broseley]

You can copy and paste it into a document, take a screen shot on a phone, print it and save it for yourself in a old fashioned paper file of "Things I have learned"

It is all over the place, I write it on a regular basis so it may be in one or other of the links in FAQs but eventually even FAQs becomes unwieldy.

[Broseley in reply to PMRpro]

Thanks, I have copied and pasted. It may be useful ammunition for when I see rheumy again in 6 months time!

[Karendeena in reply to PMRpro]

Thanks PMRpro, the fact that I developed GI problems (still have) scared me a bit. Also, I'm on Apixaban so that makes me nervous because of the risk of bleeding. Still, the dose is low I suppose.Do you know if you can continue with probiotics whilst on prednisolone I read this can be risky?

[PMRpro Ambassador in reply to Karendeena]

Quite a lot of people do - some claim it "boosts" the immune system while the pred is suppressing it. Not sure it is that critical really though

[Broseley]

I lost weight with PMR but not my appetite! I carried on eating normally, and was surprised to lose weight (and pleased, though a little worried).

[Sharitone]

I lost 6lb with each of PMR and GCA/LVV. Most of it rushed straight back on with high steroid dose, though. Net loss of 3 or 4lb by dint of reducing carbs.