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[Athas17]

I was diagnosed last September and I am currently on 5 mg of Methylprednisolone and looking for help with a speedy tapering even though that is not highly recommended.

[SnazzyD]

Hello, could you put in a bit more detail about how you are doing with symptoms and if there is anything in particular that is driving the wish for a speedy reduction?

[PMRpro Ambassador]

Hi and welcome.

You are in the right place for help - that is why we are here - but I fear you won;t get much with the idea of speedy tapering because that is something we simply don't believe is the right thing to do if you have PMR or GCA.

There is a very good reason it isn't recommended and we are likely to discourage anyone who tries it. PMR and GCA last as long as they last - it certainly isn't 3 months, if it is gone in that period of time it wasn't PMR (that is a quote from my rheumy who is a world name in the field).

If you need to get off steroids for some reason, then you can reduce quickly. If you want to manage your PMR symptoms optimally and not end up back where you were pre-diagnosis then all you are likely to achieve with a speedy reduction is a relapse. The steroid cured nothing, It is a management strategy to give you a decent quality of life and pain relief until the underlying autoimmune disorder that causes the symptoms has burned out and gone into remission. That happens for about a third of patients in a couple of years - the rest of us take considerably longer. The more often you try to force the reduction and develop flares because the inflammation is no longer fully controlled, the harder it becomes to get the inflammation under control and to reduce again. And in the end, you end up taking more steroid than if you had gone the slow way. Tortoises win the race here - not the hares.

[Athas17 in reply to PMRpro]

I have osteoporosis and hypothyroidism and my niece developed psychosis after long term treatment for Lupus and RA.

[PMRpro Ambassador in reply to Athas17]

That's fair enough you might think. However, there are ways of managing the bone density issue and hypothyroidism without stopping steroids. You are not your niece - there are people who do have mental health problems with steroids but the vast majority don't. If you stop the steroids - the PMR will come back. If your symptoms are well controlled at 5mg, then that is a lowish dose already and you may well get lower - but only if you taper very slowly and carefully. You need to discuss your concerns with your doctors to achieve a good balance of your medications or whether you are happy to put up with PMR symptoms long term. Is your hypothyroidism well managed? That can also cause similar symptoms to PMR. A low dose of steroid doesn't usually impair management of that.

By the way - it was SnazzyD who enquired about your reasons above my reply but you explained it to me. She may see this reply - but maybe better to repeat it to her.

[SnazzyD in reply to Athas17]

What dose was she on though and for how long? Your situation is probably very different and 5mg isn’t a huge dose.

[Athas17 in reply to SnazzyD]

She developed lupus at 18 and RA much later and she is now about 50 and on methotrexate .She is doing very well now! I am being treated for the bone density and the hypothyroidism problems.

[DorsetLady PMRGCAuk volunteer]

Hi and welcome,

Not sure we can help with "speedy tapering" - but we certainly can help with safe and successful tapering, and reasonable quality of life whilst you do it.

[piglette]

You have an illness which decides for us how long it is going to last. It is on average two years, but can take a lot longer than that before it goes into remission, although it can take less time too. There are medications called a DMARD, such as Methotrexate that can help reduction although it does not work for everyone.

[Athas17 in reply to piglette]

Thanks for the support and the reminders. I needed that!

[Hidden]

There is no quick fix for PMR. I am in my tenth year! Whenever I have reduced to a low dose such as 2 or 1 mg the pain returns. Currently on 3mg prednisolone daily with 20 mg of methotrexate weekly. Hope your symptoms disappear soon. I think we need to achieve the lowest dose that allows you to function.

[Athas17 in reply to Hidden]

On a scale of 1 to 10 my symptoms are at about 3. I poke myself pretty hard to identify tender spots and then I massage the areas in question with a magnesium foam spray. It works for me!

[Cyclo5]

I can only echo the comments from Pro, Snazzy, Foxdale and others.PMR is not a quick fix. 5mg is not a particularly high dose, I started on 25mg for reference, whilst others have started higher and lower. It will go in its own time. Keep well hydrated, try not to give in to food cravings (which pred can cause) and try to keep sleeping well (pred can cause insomnia).Good 🤞 Luck

[Athas17 in reply to Cyclo5]

I have been on a diet devoid of carbs with the exception of 6 tbsp of oatmeal daily for the past 3 months. I eat a Japanese purple sweet potato daily instead of a spud to feel satiated at dinner. No booze and no deserts!

[PMRpro Ambassador in reply to Athas17]

6 tablespoons of oatmeal and a potato of ANY sort is a fair bit of carbohydrate as a baseline. All potatoes have similar carb content, What else do you eat? I find it difficult you eat NO other carbs.

[Athas17 in reply to PMRpro]

Too much cheese, wild caught salmon, wild caught white fish, frozen shrimp from Argentina and organic chicken breast. I also eat 2 hard boil egg yokes and an avocado every day. Vegetables include bok chow, organic celery,orange peppers,tomato, red cabbage, daikon, rutabaga, spaghetti squash and dried peas.

[PMRpro Ambassador in reply to Athas17]

Most of those veg are relatively low in carbs - but every little counts and it does add up. The only way to know how much is to keep a diary, weight and calculate.

[Athas17 in reply to PMRpro]

Thank you!