First Rheumy visit.

[AllyRobson]

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!

[DorsetLady PMRGCAuk volunteer]

Hi AllyRobson,

Welcome,

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.

healthunlocked.com/pmrgcauk...

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!

If you haven’t already read this - healthunlocked.com/pmrgcauk...

Good luck, and please come back with any questions.

[AllyRobson in reply to DorsetLady]

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.

[DorsetLady PMRGCAuk volunteer in reply to AllyRobson]

The VitC/Calcium should be on prescription. Thats if you’re in UK.

[AllyRobson in reply to DorsetLady]

Yes I am. Thanks good to know that.

[Rugger in reply to AllyRobson]

Ally,

If you pay for your prescriptions, it may be cheaper to buy the calcium and vitamin D over the counter. Do discuss with your pharmacist.

If you are tempted to buy from a 'health food' shop, check the amount of each active substance in the tablets.

My prescribed tablets contain 600mg calcium and 400 IU (equivalent to 10 micrograms) vitamin D3. My daily dose is 2 tablets.

Definitely have your blood vitamin D level checked. Mine was low and needed topping up with megadoses before I started the daily dose.

Hope Santa also brings you something else more interesting.....!

[PMRpro Ambassador in reply to Rugger]

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!

[AllyRobson in reply to PMRpro]

Sounds like a good idea, otherwise I will be selling one of my organs to pay for prescriptions.

[AllyRobson in reply to Rugger]

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!

[Soraya_PMR in reply to DorsetLady]

Dorset Lady, been on the Christmas sherry? Finger slippage? Think you mean vitamin D.

[AllyRobson in reply to Soraya_PMR]

So Vit D and calcium? Have been eating festive Clementines and satsumas by the bucketful, so my vit C may be ok for now hee hee.

[Soraya_PMR in reply to AllyRobson]

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!

This is quite a good read nof.org/patients/treatment/...

[Soraya_PMR in reply to Soraya_PMR]

betterbones.com/bone-nutrit...

All about vitK benefits

[Hidden in reply to AllyRobson]

Vitd3 is usually highlighted and is the one that helps. I have tried twice now to get adcal put on my prescription. Still ignoring me 😂

[AllyRobson in reply to Hidden]

Thanks Poopadoop. All info and advice greatly received 😁

[Soraya_PMR in reply to Hidden]

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?

[PMRpro Ambassador in reply to Soraya_PMR]

Is this the one "only one a day"? Which - as you say - while not pointless isn't as good as you'd think. Wonder what's in mine...

Just looked - sorbitol and saccharin.

[Soraya_PMR in reply to PMRpro]

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.

Sorbitol, yuck, diarrhoea!

[PMRpro Ambassador in reply to Soraya_PMR]

Unfortunately - no!!!!

[Hidden in reply to Soraya_PMR]

Lol. It's rotten wood for mine. It's like dognip.

I will keep trying to get it prescribed.

[HeronNS in reply to Soraya_PMR]

I've learned that eating a small helping of yoghurt (I always eat plain) with your calcium helps with absorption. Also, consider a K2 supplement.

[DorsetLady PMRGCAuk volunteer in reply to Soraya_PMR]

Yes, on both counts! I take Vit C as well, so slip of the brain, it appears the Pred head doesn’t go completely🤦🏻‍♀️

[piglette in reply to DorsetLady]

I think vit D and calcium is cheaper over the counter than on prescription unless you have free prescriptions.

[AllyRobson in reply to piglette]

Great thanks. I'll check them out Piglette.

[piglette in reply to AllyRobson]

Hi Ally, I may be wrong but it would be good to know.

[PMRpro Ambassador]

You will be seeing the rheumy before the pred runs out won't you?

There is a paper which says that using reductions of more than 1mg per month is predictive of a flare!

rcpe.ac.uk/sites/default/fi... (about half way down page 4)

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.

[AllyRobson in reply to PMRpro]

Thanks for the excellent info PMRpro. I shall take a printout of the article with me, just in case!

[HeronNS in reply to PMRpro]

How are you feeling these days PMRpro? You seem to have been very active, travels and all. And I hope your husband's recovery continues apace! ❤

[PMRpro Ambassador in reply to HeronNS]

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!!!!!!

[AllyRobson]

Thanks all for your great advice. Seasons greetings to one and all. Fa la la la laaaa la la la laaaa.

[SheffieldJane]

Oh and the Pred euphoria doesn’t last, but it’s nice after all that pain and misery. Happy Christmas Ally and a really good new year! 😉

[AllyRobson]

Same to you Jane. Have a great Christmas and New Year.

[yogabonnie in reply to AllyRobson]

Yes ENJOY the prednisone euphoria... It lasted about a month for me... but I still am NOT in pain...which is HUGE .. I'm just not speedy!

[karools16]

AllyRobson. Love how you say' PMR L plates'. Stick with this incredible forum. You learn things our GP/Rheumies/others, don't tell us.

[HeronNS]

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.

[AllyRobson]

Thanks HeronNS. All these little nuggets of information are handy to have.

[Hindags]

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.

[AllyRobson in reply to Hindags]

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!

[PMRpro Ambassador in reply to AllyRobson]

Careful with the fruit - lots of hidden carbs there!

[AllyRobson in reply to PMRpro]

Veggies and more veggies it is then 😁

[Hidden in reply to AllyRobson]

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.

[AllyRobson in reply to Hidden]

So, reducing carbs seems to be the way to go.

[Hindags]

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.

[AllyRobson in reply to Hindags]

The thing with nuts is, I never know when to stop and before I know it, I've reached the crumbs at the bottom of the bag!

[Hidden in reply to AllyRobson]

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.

[AllyRobson in reply to Hidden]

Ooh thanks. I will have a look at that book for some ideas.