Advice needed please

[Deeroy2015]

Good morning

I have PMR/GCA diagnosed August 2015. Have had bone scan which came out as very good. Rheumatologist said on Friday markers"excellent". But I do need to take calcium supplement,I have been trying to deal with this by my diet.

My question is do I actually need to take a supplement,?? Or will the calcium rich diet do. Any advice would be much appreciated.

Many thanks

[piglette]

Are you taking steroids? If so you need vit D and calcium supplements to counteract any side effects. What is the problem taking calcium?

[Deeroy2015 in reply to piglette]

Hi piglette

Yes 13/14 at the moment. A bit concerned about the side effects of calcium.

Thanks for you reply

Best wishes

[piglette in reply to Deeroy2015]

I think I would be more worried about steroid side effects than calcium! I think most people have no side effects from calcium although they can cause constipation I understand. I have not had any problems.

[DorsetLady PMRGCAuk volunteer]

Hi Dee,

As piglette says, it's recommended you take calcium and Vit D supplement. When my bloods were done before Xmas Vit D levels were a bit low - due to Pred, but last week retested and back to normal. A combination of less Pred and more sunshine (wishful thinking)!

I think most people on here eat a calcium rich diet, as best they can - but sometimes we need a bit of extra help. But, at the end of the day, it's your choice.

[Deeroy2015 in reply to DorsetLady]

Thanks sue.

We need more sunshine😃

🌞🌞

Best wishes

[Celtic PMRGCAuk volunteer]

Deeroy, it is generally recommended that everyone takes a calcium plus Vit D supplement when on steroids. However, due to a misunderstanding between my rheumy and my GP, it was never prescribed for me. I spent 5-6 years on Prednisolone, starting at a dose of 40mg due to both GCA and PMR, and luckily came out the other end with my bones intact! Like you, I followed a calcium-rich diet: daily 'live' yoghurt, milk, cheese and oily fish several times a week - the latter is excellent for our bones.

I am not advising that you take this route - I may just have been lucky - but if you do decide to do so, then ensure that you have your DEXA scan repeated every one to two years. Also, if you haven't already had one, do ask for a Vit D blood test - many of us are found to be deficient and any deficiency can lead to pain similar to that of PMR. Vit D itself can allow more calcium from your diet to be absorbed into your body, thus also helping your bones.

Incidentally, it is advisable for everyone on calcium supplements to have their calcium levels checked from time to time to ensure that they do not become hypercalceamic.

[Deeroy2015 in reply to Celtic]

Thank so much for your reply. Will get a vit d test and go from there.

Many thanks

[Disdnurse in reply to Deeroy2015]

Look for calcium citrate rather than calcium carbonate and don't take your calcium at the same time you take your Pred.

[Zellamze]

I take vit D and calc tabs twice a day and have a healthy diet. Only problem I get is I need to take a laxative twice a week! 🙊

[Disdnurse in reply to Zellamze]

Calcium citrate is less constipating and a high fiber, low carb, anti inflammatory diet will help.

[Deeroy2015 in reply to Disdnurse]

Thank yo for replying and your helpful advice

Best wishes

[jinasc]

Like Celtic

I was prescribed Calichew and then one year down the line had a Dexa Scan. Bones were 97%.

The reason for the scan was I had developed pseudo gout in the knee and that was pretty painful.

It turned out I had not needed the extra calcium at all. So it was dropped. I had dexa scan every two years and the bone density never changed and when the GCA went into remission after 5 years - the results had still not changed. 5 years on and still no problem with bones.

I never changed my diet, just ensured pure dairy, fresh fruit and vegetables. Manuka Honey (1 teaspoonful) in a probiotic organic yoghurt everyday.

I would echo Celtic and others - ask for a Vit D test.

[Deeroy2015 in reply to jinasc]

Thank you for your reply.

Best wishes

[tina-shelley]

Hello deeroy, like many of the others I take supplements. I normally take, RDA calcium, magnesium and vit d, however my last blood test reads that I have a high calcium reading so will drop the calcium until my next blood test just to let it come down a bit. Regards, tina

[HeronNS]

Everyone has mentioned calcium and Vitamin D, but you also need to get Vitamin K2 (not K1, which is readily available in your leafy greens). Most of us are deficient in this vitamin now because of changes to the way our food is produced so will have to get it through supplements. Unless you have access to products from grass-fed animals (and not even grass fed animals that are "finished" with grain as that negates the good effects). Vitamin K2 is the vitamin which makes sure calcium goes to the bones where it belongs, not deposited on walls of blood vessels and in organs where you definitely don't want it. Lots of good info about it on the internet now, but don't be surprised if your doctor has never heard of it as their nutrition information is sadly lacking anyway.