Hi, just joined PMRGCAuk and have been interested to read other's experiences. I started with PMR in January and was diagnosed in March and have been on pred since then. I was also prescribed Alendronic Acid which I've taken myself off after talking to friends who've had really bad dental problems after taking Alendronic Acid. I also had a bad reaction myself - feeling manic and argumentative and 'high'. Anyone else had similar problems? I'm now drinking Almond Milk to boost calcium levels.
Calcium levels: Hi, just joined PMRGCAuk and have... - PMRGCAuk
The manic, argumentative and high side effects are more due to Pred than the AA. But they should reduce as your body gets acclimatised to all that extra cortisol rushing around your body, and obviously as you reduce.
Were you prescribed VitD/Calcium supplement -Adcal or similar. Most people find that’s enough without the AA, so long as you aren’t susceptible to osteoporosis.
Thanks for all the information! I have put myself on vit D supplements but realise one tablet contains only 400 IU which I think is a bit low so will increase that dose. Haven't been prescribed Adcal so will investigate that.
Am going for a bone scan next week so hope to learn about the state of my bones and how concerned I should be.
You should have been prescribed the VitD/Calcium tablet - it’s in the guidelines -as is AA. But as I said most prefer not to take AA. I did take it for 4 years (now off it nearly 2 years) because I needed it, and didn’t have any problem with it, but it does stay in your body a long time, so maybe I will in the future! Who knows!
Thanks! Am going to ask the gp about the Adcal supplement.
Get as much calcium from your diet as you can. If you like dairy the fermented forms are much better than liquid milk. In fact I read recently that a little yoghurt taken with your calcium supplement actually helps the calcium to be absorbed, preferably unsweetened yoghurt made with partly skimmed or full cream milk. Please also consider adding a vitamin K2 supplement as most of us no longer get enough from the modern diet and it is essential for guiding calcium into the bones where it belongs rather than letting it settle on the walls of blood vessels or into organs.
Why are you drinking almond milk as a source of calcium? Unless heavily fortified it is in fact a particularly poor source of calcium. If you want to get calcium from diet then this link may help
but when on pred you need higher than the RDA since the pred makes you shed calcium through the kidneys. Studies have shown this is helped by taking calcium and vit D supplements. The vit D is as important as the calcium and almond milk doesn't have a lot of that either. You need at least 800 IU of vit D per day and probably considerably more.
Cows milk is also only a reasonable source of calcium for humans - and must be at least semi-skimmed. The lack of fat in skimmed means the body absorbs very little even though it claims it contains more - that is just an arithmetical trick because the fat doesn't count.
Thankyou! The almond milk I'm drinking is fortified - one brand says 100ml contains 24%RI. Have read a lot if articles about the benefits of all sorts of milk - very confusing issue!
Thanks for the link, am also eating lots of sardines etc and veg from the list.
I've been taking vit D tablets but realise they only contain 400 IU each so will increase the dose, thanks.
I found that Alendronic Acid really upset my tummy, so stopped after two weeks, still taking Vit D and Adcal. Saw the GP yesterday who agreed with this and has put a request in for a DEXA scan for me. He also agreed that the doctor who I saw 5 weeks ago and who recommended dropping from 15 to 12 Pred was a bit hasty and I was ok to keep on with 14 for a week or so more and then reduce by 1mg at a time. Unfortunately he is retiring at the end of the year!
I'm having a Dexa scan next week to find out the state of my bones. I haven't been told about Adcal by the GP - is it available at the pharmacy?
Where do you live? In the UK it appears this is prescribed by doctor and covered by NHS. Elsewhere there will be similar supplements with different names. I get mine off the shelf at a pharmacy or from a health products store and pay out of pocket. My doctor told me to double Vitamin D from the 1000 IU I'd taken for years to 2000 after I started on pred. It is hard for most people to overdose on D as the body normally only activates what it needs, but it is wise to have your level checked. In the end mine turned out to be getting too high after about 8 months of pred and increased Vitamin D intake, but it is just as useful to know if your level is too low.
"but it is just as useful to know if your level is too low."
Not least because low vit D can cause PMR-type symptoms!
Thankyou! I'm in the UK but when I asked my GP about Vit D he said it was a good idea but no offer on the NHS! So I'm buying my own and have just increased based on advice on this forum. When I've had the Deca scan next week I will start to ask about getting my Vit D levels checked and to see if I can get Adcal.
Like your patchwork symbol - I'm making a quilt at the moment.
Er - it is recommended that patients with PMR/GCA and on pred are given calcium and vit D supplements. The vast majority of us have had them provided on prescription.
I'd try a different GP!
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