Thanx for all info on this group much appreciated

[Sasol]

Thanx I have just been told that I will have to take calcium and vitamin D never knew about any of these but so glad I read this daily or weekly as I would not have known have a good day all

[Theziggy]

I learned about it on this forum too

[MrsNails]

Hi Sasol

Just remember to take the Calcium/VitD if it’s combined away from when you take your Pred Dose.

Remember, Pred for Breakfast, Calcium/VitD Lunch & Dinner.

Calcium interferes with the absorption of Prednisolone!

Welcome 🙏🏼

MrsN

[ChinaWuntoo in reply to MrsNails]

Wasn't told that. Rheumatologost took me off Adcal but I'm on Vitamin D3 with instructions to take it at the same time every day.

So - Pred with breakfast and Vit D at mid-day. Is that correct?

As I said elsewhere - we hear a lot of bad advice from the medics.

[MrsNails in reply to ChinaWuntoo]

Most people take the combined Calcium/VitD & it’s the Calcium you need to keep away from the Pred. Choose a time that suits you to take your VitD

I think Drs say ‘Take Them All In A Morning’ so as we don’t forget.....

It’s always worth checking with your Pharmacist the optimum time to take any Meds & stick to that, we all have phones now so we can set alarms, l have a weekly one (Methotrexate) but l mustn’t take my Folic Acid on that day!

I’m only taking VitD at the moment & l take that with my Evening Meal, it’s just because it suits me then.

Good Luck & ask us anything you want to double check or don’t understand.

Kind Regards

MrsN

[ChinaWuntoo in reply to MrsNails]

Your first two paras....I bet that's why the rheumatologist was so firm about stopping the calcium! He didn't trust me to be in control. If only they would give full information. I looked it all up and came to the wrong conclusion about Adcal.

It's obviously a little more inconvenient to remember two or three times during a day when we need to take medication - but the possible alternative to missing a dose doesn't bear thinking about. It might be a good idea to spread PMR to all medics (not) then they might understand!

Thank you.

[MrsNails in reply to ChinaWuntoo]

You can take your VitD in a morning but your Prednisolone IS THE MOST IMPORTANT.......

You’ll soon get into a routine, l keep my Pred in a Daily Pill Box as it’s a very good way to check you’ve taken them......

Believe Me there are many Members of the I’ll never forget again Club!

Always take your time when taking your Meds & you’ll soon get into a routine.

MrsN 🌺

[ChinaWuntoo in reply to MrsNails]

I gave the wrong impression. I'm well into a routine and could easily cope with a change if neccesary. I just want to do the best. I also use Pill boxes.

[tangocharlie in reply to MrsNails]

No one told me that years ago. I used to take my Pred and Adcal same time in the morning. Maybe yet another reason I still have PMR 8 years later and why I was crippled by pain and stiffness, the little Pred I was on wasn't being absorbed properly? *sigh*

[MrsNails in reply to tangocharlie]

That’s why the Group is so beneficial but you weren’t alone, there were a lot of people doing the same......

[Sasol]

Thank you yes I’m due to start it in two weeks time as rheumatologist finally saw me last week even though drs were treating me and I could finally ask all I needed to know about pmr as was diagnosed last year but yes thank you will definitely do that and yes the streroids were causing my depression to kick in even more I just thought I was going crazy and rheumatologist said I should have been given an antidepressant to help this so holding thumbs will all go well when additional tablets are added going for bone density test on 30th rheum needed it done to. At least now have a schedule and taper blood test three months

Time and another just before my six month and see rheum in six months time unless needed before and dr may not change anything as rheum is the one to contact for any issue that arises so feel bit more confident now thank you so much have great day

[MrsNails in reply to Sasol]

We’re always here if you need any advice or have any questions, we have quite a few New Members so that’s also good as you can be supportive of each other.

We all have very different journeys so never compare yourself to anyone else.

Take Care & the Sun is Shinning again so that makes you feel a little brighter 🌺

MrsN

PS if you do feel low at all please post as there’s pretty much always someone around, we are quite international 😉

[Sasol in reply to MrsNails]

👌😁

[piglette]

I get mine on prescription. You should also have a Dexascan to check your bone density if you have not had one. Our local hospital has closed theirs for Covid but I assume they will be open again soon. You could have a blood test to check your vitamin D level.

[Polypoly in reply to piglette]

I’m allowed one bone scan every 5 years on NHS.

[piglette in reply to Polypoly]

I am allowed one every three years in NHS, some areas are allowed one every two years. Dexascan machines do seem to be at a premium though. I assume you have had a Dexascan, was it OK?

[Polypoly in reply to piglette]

Thanks PG!

I only know I’ve had just one scan, but I’m not familiar with the actual term ‘Dexascan’.

I asked my Doc about 9 months ago about another bone scan, and she told me it’s due 5 years after my first.

Mine was good 😋

I will follow it up and ask about possible advantages of your Dexascan machine.

Wishing you a calm life and happiness, despite our joint Pred nuisance!

Lucky it’s available I say.

All the Best - Stu

[piglette in reply to Polypoly]

What was scan for? Was it for bone density. If so they would use a Dexascan. DEXA scan stands for dual energy x-ray absorptiometry. It's also called a bone densitometry scan. It uses low dose x-rays to take measurements to work out the strength (density) of your bones.

[Polypoly in reply to piglette]

It was just measuring my bone strength as I questioned it with my Doc about 3 years ago, as I’ve been on Prednisolone about 25 years, - virtually non stop now, dose fixed at 2.5mg ongoing but not tapering.

This action Doc suggested as I never seem able to escape Pred completely for two months before the flares start.

Not got any major symptoms of heavy pain like when this began. Just one shoulder and Bicep niggly.

But not happy to feel I’m gonna be taking Pred for life, I’m 74.

I’m tempted to reduce after covid, but decided to keep on the dose at present because I don’t want to stir up pain while we’re all in this mess.

[piglette in reply to Polypoly]

Does your doctor go on about you using a bisphosphonate even though your bone density is OK? Mine has been going on for at least four years even if I am seeing him for something totally different.

[Polypoly in reply to piglette]

My Doc seems to think I know more than she does I feel!

No great effort to do any tests as I generally cope and with my low SED RATE, which oddly has never been raised!

My CRP was slightly raised when I first got this new GP and she did several blood tests.

Your Bisphosphonate comment shows my ignorance in terms I’m afraid. I’ve only heard of it via this great site of amazing caring folk.

Should I be worried about Arteries and damage if I don’t really need the D3 calcium and Vit D.

[PMRpro Ambassador in reply to Polypoly]

"Should I be worried about Arteries and damage??"

Sorry - not quite clear what you mean?

[Polypoly in reply to PMRpro]

Sorry for confusion here! - I noted the Chopin002 message below which you have answered regarding calcification of arteries and possible Vit D connection to this.

So I wondered if I should be taking my two D3 tablets daily as Piglette pointed out Why? If my bone scan was Good.

So could the D3 damage my arteries if it’s not actually necessary to my health on the 2.5 pred.

[PMRpro Ambassador in reply to Polypoly]

Depends on the rest of your diet probably - do you eat calcium-containing foods? If your dexascan is good and you are down to 2.5mg then there is certainly less to worry about.

[Polypoly in reply to PMRpro]

Thanks to you again! Your point makes sense regarding my levels of calcium via my diet before the pills.

No Beef or Red Meats, but plenty of Fish, Chicken,Turkey mince, and lots of green Vegetables, Potatoes, Carrots, Baked Beans, Porridge with milk grapes and blueberries most days, or scrambled eggs and tomatoes on toast, then of course a Raspberry Magnum Ice to spoil myself 😎

So I reckon I’m good without D3 eh?

[PMRpro Ambassador in reply to Polypoly]

No idea - but I bet there is an app to work it out!

[Polypoly in reply to PMRpro]

Sure! - but better not hold our breath looking at current research😂

[PMRpro Ambassador in reply to Polypoly]

Dieticians have been using them for years - this isn't a "best in the world" bit of nonsense. Just need one that works!!!!

[piglette in reply to Polypoly]

You probably do know more than your doctor, I often think I do! My sed rate and CRP have always been very high, Sed rate currently 80. My doctors have not got a clue why and just say it is the way I am. Brilliant diagnosis.

[Polypoly in reply to piglette]

I’ve edited typos! Please re- read my post read ‘Sed rate’ PG - thanks 😋

[PMRpro Ambassador in reply to Polypoly]

At 2.5mg it is well within the equivalent amount your body has to make every day to be able to function - take less and you body must make more cortisol. It just isn't as efficient an anti-inflammatory.

[Polypoly in reply to PMRpro]

Thank you kindly for that help. Please read my reply to Piglette above as I would be grateful of your comments too. Cheers Stu

[Chopin002]

I quit biphosphonate after 8 months because of side effects. Started taking calcium, but was told taking calcium tablets causes build up in the arteries.

Now just take a multivitamin so probably falling short somewhere.

[PMRpro Ambassador in reply to Chopin002]

The research that showed calcification of the arteries was in healthy people on no medication and not taking vit D at the same time. But it was calcification that made the headlines!!!