More advice please: Can I ask if anybody S taking... - PMRGCAuk

PMRGCAuk

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More advice please

Gunflash profile image
26 Replies

Can I ask if anybody S taking Adcal D3 along with Pred? My GP has asked me to consider taking it. It's a calcium carbonate and vitamin D3 chewable obtained under prescription. However it does come with side effects. I am already taking Vitamin d tablets along with calcium from the local health shop daily and wondered what others were doing. I already take other tablets and did not want to have yet another one.

The only side effects I seem to have with pred after taking 15 mg for a week at present are slightly raised blood pressure 135/77 and a constant waking up with tension in my arms around 4 am. I usually sleep like a log. Otherwise I seem to be managing.

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Gunflash profile image
Gunflash
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26 Replies
SnazzyD profile image
SnazzyD

I bought my own supplements along with vitamin K2 (to help the calcium into bones rather than the blood vessels) because the Adcal gave me cystitis and indigestion. It is worth finding out what your vitamin D level is because if it is low, which mine was, you will need high dose vitamin D initially, followed by a lower maintenance dose. My GP has made sure with occasional blood tests that my own vitamin D dosing has been adequate. If you are on a bone medication like Alendronic Acid you must take calcium and vitamin D to make it effective.

I am slightly concerned about your arm pain in the night. What do you mean by arm tension exactly?

Gunflash profile image
Gunflash in reply toSnazzyD

It's just tension, no pain. A bit like squeezing your fist together and creating tension. It goes when I have woken up, I think it's reaction to my dreams. Pred is clearly playing with my mind when I am asleep.

SnazzyD profile image
SnazzyD in reply toGunflash

It might just be PMR inflammation but keep an eye on it, I used to get bilateral arm symptoms in the run up to my GCA. I’d wake in the night with both arms slightly heavy or numb.

PMRpro profile image
PMRproAmbassador in reply toSnazzyD

My biceps were hellish and the very first symptom I had was being unable to sleep with my arms above my head.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

If you're already taking similar - you don't need both. But the GPs will be on prescription so no cost (provided you're in UK).

BP can rise with Pred, so just keep your eye on it.

Arm pain at 4am is when the substances that cause the issues start circulating - if it becomes too much of a problem you could take part of your dose before bed, or if you wake normally early hours for comfort break - take it then... gives it chance to get in the system reading for the 4am onslaught.

If its not a great problem then stick with things as they are.

Gunflash profile image
Gunflash in reply toDorsetLady

Thanks, it's not arm pain just tension, see reply above.

PMRpro profile image
PMRproAmbassador

4am is when the new batch of inflammatory substances is shed in the body - I get the feelings of more inflamamtion soon after then too.

If you are on supplements already that's fine - but the prescription ones will be cheaper. I was fine with them, eventually the ones I got here in Italy caused cystitis and I asked for different ones. But everyone is different.

You probably need more than the supplement level of vit D - I usually take 2000 IU through the winter.

Gunflash profile image
Gunflash in reply toPMRpro

Thanks

in reply toGunflash

Just take them seperately from pred by at least 2 hours. It can effect absorption of pred. Pred for breakfast, vd3, cal and K2 for lunch and tea.

Gunflash profile image
Gunflash in reply to

Thanks, I have been doing just that.

artfingers profile image
artfingers in reply toPMRpro

So I have always wondered this...if cytokines are released at 4am is that based on going to bed at 10pm. What if you work the night shift...is it based on time or is it based on a rough estimate of time from when you go to sleep? Thanks PMRpro

PMRpro profile image
PMRproAmbassador in reply toartfingers

Pass ...

Some things are affected by working night shift and it does affect the immune system. But I will have to see if I can find anything ...

Maisiek profile image
Maisiek

Hi I’ve been taking Adcal since diagnosis 4 months ago with no side effects . Best wishes.

Gunflash profile image
Gunflash in reply toMaisiek

Thanks

SheffieldJane profile image
SheffieldJane

It was routinely prescribed for me. I did find that it irritated my bladder, so the doctor took me off it after a year or two. I just take vit D and K2 and Magnesium now. I have a calcium rich diet.

maria40 profile image
maria40 in reply toSheffieldJane

I took it for years but stopped after developing kidney stones. I now take a seaweed derived calcium supplement + K2, the latter directs the calcium to the bones as I understand it.

Daffodilia profile image
Daffodilia

I take Adcal and Alendronic acid with pred - also COD liver oil as on low fat diet for gallstones and multivitamin for vit B for sore tongue - I wake with some pain and stiffness about 4 am too - think it is to do with adrenal system which should produce natural steroid and doesn’t - I am

on 6 mg pred

Bignorhill profile image
Bignorhill

I was told by a Natural Doctor that the Adcal tablets prescribed by the doctor are pretty useless. You are better taking the supplements you are getting elsewhere.

I am not recognising the 4am onslaught, I am not on Pred so know what effect the PMR is having. I get stiff and painful just by lying down, just an hour into sleep and I will be really feeling the inflammation and within a couple of hours unable to lie on either shoulder without some pain.

I believe each of us is probably different and will have our own cycle. I benefit from waking up during the night, stretching a bit and moving a bit. Without taking Pred you start to feel better once you are up and moving about.

Tahiri profile image
Tahiri

I’m taking Ad-cal D3 and Alendronic Acid plus 75 mg aspirin in addition to Prednisolone ( currently at 8mg ). My GCA was diagnosed in October, when I was getting “ sparkles” in my vision. This kind of pixelation- like a breaking up tv screen had been happening for ages , but I put it down to anxiety . However when the severe headaches and tender scalp became intolerable, and I had to see my GP , my blood tests were abnormal., and a consultant confirmed that it was GCA. I’ve had no noticeable side effects from Ad-Cal.

I had childhood Neuroblastoma and was diagnosed about 9 years ago with Cobalt radiation poisoning which caused quadroparesis and cervical myelopathy. This was a relief as my initial diagnosis was MND.

I kept walking ( limping ) back in , so I was a total mystery until I remembered the cancer . Someone asked me if I should have mentioned it , but I’d honestly forgotten and didn’t make the connection. After I did- the consultant said that he and his colleagues could no longer call me the mystery woman. Sorry to write so much. I don’t know how to do my profile for this site , although I’m in Mensa ; I’m not very computer literate.

I forgot to say , I began Prednisolone ( not Prednisone) at 40 mg in October and , so far , my results have been excellent. I completely changed my diet to asparagus, avocado, chicken and fish and loads of veg , which has kept my weight stable - apart from the moon face etc. I probably could have replied in one sentence, but just got it all out tonight.Forgot one thing- tapering may be the cause of numbness in fingers and feet and hair loss. Thank goodness it was thick - the spasticity progressing in my limbs is enough- without losing my hair. Sorry again for the verbal vomit .

PMRpro profile image
PMRproAmbassador in reply toTahiri

You could just copy and paste this and put it on your profile page. At the top right of your profile page is a white box saying Edit Profile - click on that and it brings up a version you can edit. Copy and paste this post into the central box across the page below the banner bit. If that makes sense ...

Dozzer profile image
Dozzer

I've been taking Adcal D3 for many years and have had no side effects, I take it at lunch time as its stops Prednisolone working if taken at the same time

Sandyowl profile image
Sandyowl

I have recently been put on Adcal D3 to take alongside prednisalone. No side effects for me so far.

PMRpro profile image
PMRproAmbassador in reply toSandyowl

You do know you shouldn't take them at the same time? Allow a couple of hours between pred and 1 Adcal, take the other Adcal later again. Best with food. :)

Sandyowl profile image
Sandyowl in reply toPMRpro

No I didn’t know that. My consultant said to take one in the morning and one at night 😐

in reply toSandyowl

The consultant probably never read the bumpf! It can make the pred less effective....the last thing we need. 😁

PMRpro profile image
PMRproAmbassador in reply to

And vice versa!

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