Newbie with concerns

Hey Glyn - it's Christmas!  How many of us do you think won't have a tipple or two?  As you say "everything in moderation"!

Also, welcome to the club of PMR.  Great place to be, isn't it?  But we are a friendly lot and you will get all the advice/help you need on here.

Have a great Christmas.  🎄🍷

Constance.   

There are a bunch of questons in your post and I'll leave most of them for the experts to answer.  Regarding bone health, you should have been advised to take calcium and Vitamin D3.  At the very least, to that you should add a few other micronutrients that are essential to maintain the health of your skeleton, principally magnesium and vitamin K2 (not K1 which has little help for the bones and is readily available in a healthy diet anyway).  There are others.  Vitamin K2 is of particular concern as it is the vitamin that makes the calcium go into the bones, not get deposited on the walls of your blood vessels, and nearly everyone in the Western world is deficient in it owing to our corrupted food supply.  And although you are now feeling much better, don't overdo things!  A little appropriate exercise is good for your bones, though.  Have a happy holidays and I bet most people here will say as long as you don't have bad personal effects the odd glass of good cheer is not going to hurt you as long as you stay well hydrated.  BTW I didn't know this to start, and in case you don't, make sure you take your calcium and pred a few hours apart as they actively interfere with each other.  

My best advice is to get whatever kind of exercise you can twice a day, and would avoid alcohol as much as possible.

I'm at two years now, and now below 5mg/day, but I have a ways to go yet.

PMR's core symptom is vasculitis, which is reducing blood flow to your joint's soft tissues, especially at night.  Exercise tends to cause vaso-dilation, which counters the vaso-constriction of blod vessels caused by PMR's auto-immune activity.

You will be trying to reduce your daily pred dose, but will need to learn the somewhat time-delayed cause/effect nature of prednisone dosage and your pmr symptoms, while hopefully avoiding the most critical symptoms like sleep loss, fatigue and joint flare-ups that mimic common rheumatoid arthritis. I also went through a period of tender soles of my feet, so there are quite a few symptoms that may spring up over the next couple of years.

Hello glyn, welcome! 

I don't know the reduction plan you have been advised but look up the Bristol pmr plan. 15mgs for 6 weeks, 12.5 for 6 weeks then 10mgs for anything up to a year. I took 10mgs for 6 months. Then I abandoned the Bristol plan and use Eileen's dead slow and almost stop reduction plan and only ever reduce by .5mgs. 

You should definately be taking daily RDA amounts of vit d (I get that from my cod liver oil capsule), calcium and magnesium. These 3 supplements will help fight any bone loss caused by the preds.

i stopped taking omeprazole, which had been recommended by my GP to protect my stomach from the steroids. I now take yogurt, alpro almond milk (original, NOT sweetened, and only About 2 inches in a glass, and 1 slice of toast, That is plenty to protect and line my stomach.

also don't be pushed into taking alendronic acid unless you've had a dexa scan. Your bones may not be weak and therefore AA is not needed, plus the supplements will help to prevent any bone thinning.

you must not be tempted to overdo things on the days that you feel well because fatigue will set in and you will feel rubbish for days until your body has perked back up again.

when you reduce don't confuse withdrawal with a flare. Withdrawal is when your body gets use to a level of preds then throws it's dummy out when you reduce the dose. It will soon get use to the new lower dose and these pains will soon get better. A flare is when the level of preds is too low to keep the current amount of inflamation under control and hence the pain. If this happens when you have made a dose reduction and the pains get worse daily then that's the beginning of a flare and you should up your preds back up to the dose that you were comfortable at prior to the reduction.

any queries, do air them on the forum. There's more than enough of us that that have probably experienced your query too and can offer some advice.

just a word of advise, pmr is very unpredictable. Your road to recovery may not run smoothly, hopefully it will but it may not. Pmr cannot be cured and even when it is not active, it will still be there dormant. 2 years to achieve full recovery may be a little optimistic, I hope not but I it may be. I have been diagnosed with it for 2 years now but had the symptoms for 4 months prior to diagnosis. I have suffered one flare attempting a reduction from 9-8mgs this time last year. I started at 15mgs and am now on 6.5mgs, so even if I don't have another hitch it will still be a year before I reach zero.

good luck glyn. Regards, tina

Theoretically, the instructions are not to drink with prednisone - it is also processed by the liver.  They tend not to say that with prednisolone which isn't processed by the liver. Many of us do drink in moderation - I haven't crumbled yet and my GP has never said not to drink but then, I live in Italy! 

"I know I have to take it for 2 years" - if you are lucky, Five years is a more accurate estimate of the average - and that of course means some are longer, some are shorter. But the literature suggests that only about 25% of patients are able to stop pred in 2 years or less. Half take something like 4 to 6 years. Some of us take even longer. 

There is nothing natural that has been reliably shown to help - the underlying autoimmune disorder that causes the symptosm we call PMR will probably burn out sometime, nothing has been found yet that speeds that up. many people include natual antiinflammatory foods such as oily fish, turmeric and garlic and so on and say it helps, I can't say I've found anything - although cutting carbs a lot does appear to help avoid weight gain.

In terms of osteoporosis - it isn't certain you will develop it because of pred and more than half of patients don't. You should have been given calcium and vit D supplements to take anyway. You should have a dexascan done to see the current status of your bones - and if it appears sensible because you are already osteoporitic or close to it maybe other medication may be useful. I take calcium and vit D - nothing else and my bone density didn't change over a period of nearly 4 years.

Here's some reading - including the "Bristol paper" mentioned and my slow reduction plan (in the replies):

https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316

When you've looked at it - come back with any specific questions you may have.