Hi all. Hope everyone is well. I posted about a month or so ago as I had been feeling rotten for some time (aches, pains and stiffness for about 18 months) I went to my first rheumatologist visit last Friday and after discussing my symptoms, he said that they didn't really fit neatly into either the fibromyalgia or PMR camp, but he didn't want to miss a trick and would start me on 15mg of Pred. He gave me 3 weeks worth of tablets and said if I didn't feel any better in 2 weeks, then to stop them. Well, I began taking them last Saturday morning and by the afternoon felt so much better. I didn't know if was a 'placebo effect' though or even wishful thinking! However,the proof in the pudding was being able to turn over in bed without howling out in pain and I can now walk down the stairs in the morning forward facing, rather than crab like. I am over the moon! I feel that I have reclaimed my life back now that I can move without pain. Yay! I have a follow up visit with the rheumy in early Jan, but revisited the GP yesterday to discuss how I got on with rheumy. She said I was quite atypical (I'm 49 and my markers weren't elevated). She has already mentioned that I will probably reduce from 15mg to 10mg (yikes, seems a big drop) and the magic '2 years' that I will be taking Pred, (chortle!) but I have been reading all your posts avidly and know that I have to take things slow, slow, slow.
A couple of things please as I still have my PMR L plates on, When I see the rheumy and he suggests a reduction that I feel discomfort with, ie pain and stiffness reappearing, can I just change the dosage myself to one that is bearable, or do I have to consult with rheumy/GP first? Also will they think I'm a 'know it all' if I take a print out of the DSNS method. One last thing, do I need to take any supplements whilst on Pred, or is that something rheumy will discuss with me?
Thank you all in advance. I love reading your posts, I don't feel half as isolated now, that good advice and a sense of humour is only a tap of the keyboard away. Merry Christmas everyone!
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AllyRobson
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The usual drop from 15mg is by 2.5mg to 12.5mg but for some patients that is too big a drop, so they are likely to just drop 1mg at a time. It’s something you need to discuss up with your Rheumy, and also come to an agreement of whether he’s happy for you to increase without referral to him first.
By all means show him the DSNS programme or the attached, but he’ll probably say it’s not necessary at the beginning - most people only resort to either if they find it difficult to reduce as they get lower.
Request 1mg tablets, they make it easier when reducing. You should also be on Calcium/VitC supplement - the Pred depletes your body of Calcium. You may also be offered Alendronic Acid or similar for bone protection, if you are ask for a DEXA scan first to see if you actually need it, many don’t!
Thank you DorsetLady. I shall be going Christmas shopping for my supplements today, wrap them up and put them under thr tree 😉. Great to know about the AA and scan too.
Just to add to this comment - if you need 4 or more scripts in a quarter it is worth considering getting a pre-payment certificate if you are under 60. Given some GP's habits in prescribing it is very good value for money!
Thanks Rugger. All great info to take on board. As far as Santa goes, I feel he's been already. I feel human again in the first time for a long time, so I'm enjoying it while it lasts!
VitD is one of the blood tests you may (should) have had, as low levels can cause pain similar to PMR. However, assuming your levels are OK, you still need it while you’re taking calcium as vitD helps the body absorb the calcium. Take vitD with some fat in your diet to help it absorb (vit D is a fat soluble vitamin). Calcium will absorb best if you can avoid stomach acid reducers (lansoprazole and all the other -azoles)
VitC won’t harm, may help with trying to prevent colds, but if you’re a satsuma girl you probably don’t need a supplement and will likely be flushing it down the loo 😉
Other things to consider would be magnesium and vitaminK and prunes (yup!) for your bones. Search for bone/prune thread on here!
My GP finally just prescribed for me, he was all for AA, which I declined since April, and now have been ‘proved right’ after DEXA. So 9 months later I have something called ‘theiCal-D3’ (iPhone, iPad, now iCal !!!)
It contains 1000mg calcium, and I thought the advice was to take no more than 600mg at a time (absorption issues). So I’d have to break it IF I could take it. But it also has aspartame in it grrrr! Not wishing to be nauseous for hours I’ll give it a miss. Might just go to the beach and chew a bit of chalk! One of my dogs I did that regularly, not sure why, she couldn’t have been short of calcium as she ate raw bones. Maybe she had indigestion?
Yes PMR Pro, once a day. I’ll stick with my H&B 600mg specials, no added anything. But I only take one a day, when I remember. 2 a day may correlate with irritable bladder.
but they start with 6 weeks at 15mg, 6 weeks at 12.5mg and a year at 10mg.
I think most people manage that first drop OK and I think it is fair to try it once - if it doesn't work you can go back and try a smaller one. I responded to pred just like you did, in hours, and actually reduced from 15 to 10mg after 2 weeks with no problems at all the first time. But I had to reduce to zero and stop (I didn't know any better then) and had a full-blown return of symptoms just hours after missing my first 5mg tablet. After that flare I had more difficulty reducing for some time but it isn't a problem now.
Fine - it was a bit of a shock getting back to winter here but beginning to get used to it. Punctually for Christmas it is thawing - but snow is forecast for Wednesday...
OH seems to be fine.
And I have landed myself what looks to be a prize rheumy!!!!!!
Long thread, but I didn't notice if anyone let you in on the secret too many of us aren't told about - don't take your pred and your calcium at the same time as that reduces the effectiveness of both. Pred for breakfast and calcium at your other meals, or possibly one dose near bedtime with a little snack.
AllyRobinson, another nugget. Look at some of the diet discussions on the forum. Dorset lady mentions the prednisone diet too. Eliminating grains and added sugars really helps avoid the Pred weight gain and controls blood sugar which Pred can play havoc with.
Thanks for that Hindags. I'm a veggie, so will step up on the fruits and veg. Cheese is my guilty pleasure though, so will have to tread carefully, otherwise I'll end up looking like a little ball of Edam on legs!
I have increased cheese (veggie of 30years) and cut carbs down and lost a stone this year. Agreed fruit with diabetic clinic but I watch amount and have gone more for greens and cut down on root veg.
AllyRobinson. Actually I was advised to go low on fruit because of the sugar, but eating eggs and cheese would be ok. I used to eat lots of bread and pretzels, etc,. Fruit was harder to cut out than the bread. I was very surprised. I actually lost almost 25 pounds in the first 5 months on Pred. A year in on the new diet Izvestia been maintaining pretty easily. I am not a vegetarian, but I do eat lots of veggies, also lots of home made soups and fish. Nuts are my go to snack these days.
I buy bag of mixed nuts and portion them. I then try and forget they are in cupboard. I have tried to increase protein and fibre to help carb count. Rose Elliot book on low carb for vegetarians has been helpful for giving me ideas.
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