An observation that might help you: Hello For a... - PMRGCAuk

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An observation that might help you

Judigardener profile image
20 Replies

Hello

For a variety of reasons I have not been making taking my Magnesium supplement lately. I had not connected it to the awful weakness and stiffness in my thighs and butt cheeks -- which has been getting progressively worse.

However, today, I recommenced my Magnesium tabs and within a few hours -- I am quite a bit better. Not completely -- but there is improvement. I offer this to you-- those of you with stiffness that seems PMR linked but somehow not the whole story.

The steroids are tricky drugs and as we know the upsides are great but the downsides....

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Judigardener profile image
Judigardener
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20 Replies
HeronNS profile image
HeronNS

That is fascinating. I knew magnesium was important, especially when taking extra calcium as most of us do. Recently I learned I'd been taking it incorrectly, so that I wasn't getting the best benefit from it. I've also had to at least temporarily cut back my calcium and D supplements. Interestingly I've been having very little trouble tapering from 4 to 3.5 and now to 3. Is this because magnesium is being given a better chance to work? Who knows? But I bet it's part of it.

Disdnurse profile image
Disdnurse in reply to HeronNS

Please tell The correct way to take magnesium. Thanks

HeronNS profile image
HeronNS in reply to Disdnurse

I've got much of my information from a book called The Magnesium Miracle (Carolyn Dean, MD, ND). I think taking magnesium is something specific to each person - the status of their calcium intake, for example. I've noted that we're all being advised to take extra calcium when on pred but, with the exception of Vitamin D, not being given guidance about the other important nutrients. Too much calcium in relation to magnesium can cause problems.

Like other things, including pred and iron, calcium can interfere with the absorption of magnesium so if we suspect we may need a bit more magnesium best not to rely on what's often in our calcium supplement, but have a separate dose of magnesium at a different time.

Determineddebbie profile image
Determineddebbie in reply to HeronNS

Hi can you please tell me more about magnesium supplements ... Dose etc

HeronNS profile image
HeronNS in reply to Determineddebbie

I'm sorry, I think the amount of magnesium people need is individual and I'm not competent to suggest things like dosages! You may be getting enough from your diet. If you think you aren't I suggest you get hold of the book I named above. You can probably borrow it from your public library. There is information online as well, eg:

webmd.com/diet/supplement-g...

authoritynutrition.com/10-p...

Determineddebbie profile image
Determineddebbie in reply to HeronNS

Thanks will look for it

annie_marie profile image
annie_marie

I hadn't realised the significance of magnesium when living with an inflamitary illness, but four or five years ago before being diagnosed with pmr & gca, I was looking for someone with answers to why I was so exhausted and in pain all the time. Transdermal Magnesium chloride spray was suggested. I tried it with not too much improvement but maybe that was because I had these underlying conditions. I will start using it again and give a progress report.

HeronNS profile image
HeronNS in reply to annie_marie

Annie_marie, I also think magnesium wouldn't have helped my untreated pmr but I am now curious to determine whether it can help keep me healthy. Circumstances have changed over the past thirteen months....

Judigardener profile image
Judigardener

I take mag tablets every day.

I will discuss it with the Dr this week.

Runrig01 profile image
Runrig01

I take it every day and unfortunately I still have developed weakness in thighs and butt cheeks. It looks like having increased my Pred by 2.5mg was enough to worsen my steroid myopathy. But with GCA symptoms still flaring every time I drop I'm in a bit of a conundrum 😏

greenheath profile image
greenheath

Hello

What a good idea. I'm going to start taking magnesium and will report back.

Greenheath

vivi13 profile image
vivi13 in reply to greenheath

Hello

A lot of people taking a lot of different vitamins supplement and what you need it just a blood test to check and confirm what you are lacking of. I was very tired getting cramps in my legs especially at night and I got very surprised of my low level of iron ,vitamins D,

jules1955 profile image
jules1955

Hi, I have been reducing the Pred started at 15 in Dec 15 ( miracle cure in a day ! ) then 12.5 and then 10 for a few months. Waiting for Rheumy appt in 2 weeks but Dr wanted me to reduce more so went to 9. I am having pain in lower back and bottom, so bad I can not stand or walk. I would be interested to know if this might help ? and can you buy magnesium ? and how much you should take ? I was given Calcium and vit D tabs but these gave me such terrible wind pain that I stopped taking them.

PMRpro profile image
PMRproAmbassador in reply to jules1955

Lower back and buttock pain can be either or both of myofascial pain syndrome or piriformis syndrome and both are quite commonly found alongside PMR. Google them for more info and a physio may be able to shed some light on management but many of us have benefited from Bowen therapy for both.

nuigini profile image
nuigini

I've been taking 100 mg of magnesium daily for years, long before the diagnosis of PMR and after. It keeps the leg, foot and hand cramping at bay. However, it does nothing for the heavy, weak cement legs I've been dragging around throughout my 2 year, and on-going PMR journey.

Judigardener profile image
Judigardener

May 'likes' are to indicate I've read you're thoughts. Yes you can buy Magnesium. We get ours from Natures Best. Apparently it's really tough to try and see how much Mag anyone needs from blood tests.

This is proving to be an interesting thread. My achey thighs and butt cheeks are not all gone but maybe eased off a bit.

Determineddebbie profile image
Determineddebbie

I too get muscle spasm in my bum muscles ... Did you get prescribed magnesium ?

PMRpro profile image
PMRproAmbassador in reply to Determineddebbie

You're unlikely to get it prescribed - it doesn't cost a lot from a chemist/drug store.

Judigardener profile image
Judigardener

I don't think in the end the Magnesium did much to help but the leflunomide has.

jinasc profile image
jinasc

After I developed pseudo gout following two months on high doses of pred (GCA) a full spectrum blood test was ordered, that test showed I had an excess of calcium, as I had been given the 'just in cases' ie PPI, Calichew etc when first prescribed pred.

My GP ordered full spectrum blood tests which includes minerals etc every three months. They don't do all the minerals etc in routine tests. The trouble is they cost more and take more time. I think, if memory serves me right, that all those years ago, the cost was then around £14 for normal and nearly double for t'other.

I do not think this is the time to ask for these tests.

When everything gets back to a new and different 'normal' it would do you no harm and probably a lot of good to request this test occasionally - that is not every month.

I imagine it will take quite a while for the NHS and the rest of us to put all this in our collective memory bank.

Stay safe and get into your own outside space, if you have none, just open a window and listen.

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