Your advice and experience would be welcome please.
I have been taking Vitamin D during the past two winters as advised by my GP.
Looking at the BSR guidelines I should be taking a calcium supplement also ? I’ve been trying to up my natural intake but don’t want to put on weight😳.
Dexa scan next week.
What type/ dose of supplement is recommended? I know too much Ca can be dangerous.
Sorry another question also . How necessary do people feel it is to get a referral to a rheumatologist? So far my GP seems pretty au fait with PMR.
My thanks as always .
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SurreyFlower
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If your GP is good about working with you and you have no problems then you may well be better sticking with them - patients have sometimes found going to a rheumy results not only in head-to-head disputes on the lines of "I'm the expert" which ignore the patient as an individual (not that I'm suggesting that GPs are entirely innocent!) but also a lack of continuity because you have no control over who you see in clinic, it may never again be the consultant you saw the first time and everyone has their own view on how to use pred, or not.
My own original experience was a GP who hadn't a clue because my blood markers were within normal range - but raised for me we discovered later - so I was left to suffer for 5 years. Eventually at the hospital I saw the consultant and was told he didn't think it was PMR but gave me a 6 week taper of pred - which resulted in a miracle less than 6 hours after taking the first dose - come back in 6 weeks. Then I saw a "GP with a special interest" - fine no doubt for ongoing patient monitoring but I didn't have a diagnosis at all yet, all the things the consultant wanted it to be and not PMR had been ruled out by the tests done 6 weeks earlier. This GP admitted he too had no idea - a complete waste of his and my time - but the consultant was not to be swayed from his fixation on inflammatory arthritis and wishing to use sulphasalzine. Luckily I was about to come here to live much of the year and that meant I needed a specialist to monitor its use here - no-one here agreed with the inflammatory arthritis and 15 years after it started I don't think there is any yet. I now have a world name in the PMR/GCA field to go to and meet very different views on what PMR is and the use of pred.
Supplement which your GP should have prescribed is normally Adcal D3 - calcium carbonate 1500mg ( equivalent to 600mg Calcium) & 400 IU cholecalciferol ( equivalent to 10 microgram VitD). I have chewable tablets - 1 taken 2x day.
As PMRpro says unless you have complications a good GP can be better than a Rheumy - you have better and more frequent access - and a more personal relationship.
It was only through this forum that I discovered that I should be taking Adcal D3 - phoned doctors and it was prescribed with no hassle. Mind you, shouldn't have had to do it, but 3 doctors examined me and hadn't a clue what was wrong with me, the fourth doctor said - maybe Palindromic Rheumatism, though in all my years of being a doctor I have only seen one other patient with it!
Forgot to say add in K2 - will have to buy yourself - it aids the absorption of calcium - and don’t take Adcal same time as Pred - leave a couple of hours between.
Most people do Pred at breakfast - Adcal either elevenses or lunchtime.
I was wondering if there was a certain time to take the vitamins (ad cal only 1, k2, omega 3, q10, magnesium, probiotics, omega7) I have been taking everything first thing in the morning. Not taking AA as everyone seems to be against it despite having Osteopenia.
The key is to avoid taking calcium with pred, or with other minerals although I believe it is perfectly fine with vitamins. Calcium and pred interfere with each other, and calcium also interferes with the absorption of minerals like iron or magnesium, should you happen to be taking them. The body prefers calcium; it is, after all, the key to our skeleton upon which everything else hangs!
Thank you. I’ve been taking my calcium same time as Pred since I started in September. I just take everything first thing in the morning and get it out if the way. Will change that now even if it’s a bit late
Loads of people have not take them apart without any great damage - just it is more effective for both pred and calcium to take pred for breakfast, calcium for lunch and tea/dinner since some fat does help the absorption of both vit D and calcium.
Osteopenia is not an indication for taking AA - there is a wide range of numbers described as osteopeneic. My t-scores were IRO -1.3 last time, osteopeneic but nowhere near osteoporosis.
Thank you for your usual helpful reply. I had a dexascan two years ago but keep forgetting to ask the result. Nurse only said it indicated osteopenia. I always have so much to ask GP even with a list of questions I miss one. AA was prescribed as a precautionary measure with pred.
I took pred and calcium together for the first three months, until I learned from the forums not to. I did in fact show signs of bone thinning with a DXA scan done after I'd been on pred for about four months, but not having had one previously I can't be sure pred had an effect. It may have. I changed the time of my calcium dosage and also started doing a number of other things to help my bones including starting a Vitamin K2 supplement and adding new kinds of exercise, and within a year my bone density had improved. I took no bone meds. As I also have experienced a number of other "hidden" pred side effects I definitely don't rule out the possibility that pred did my bones no good; on the other hand I reversed the damage relatively easily. The worst effects of pred on bones are supposed to occur within the first three months or so, so I definitely had messed up!
I have never taken any of the bone meds. And I too was taking the pred and calcium together for three months. I do wish the doctors were more careful but really the pharmacist should have caught this. I don't believe it was even in the multi-page info I received with my first pred prescription.
I have a slightly different take on Adcal and other 'just in cases issued automatically when you are started on pred.
I ran into a problem with pseudo gout, caused by too much calcium quite quickly. . Long story, but I ended up with gallstones.
I would ask them to check you calcium levels and wait for the result of the Dexa Scan you may need nothing at all.
I had GCA and took pred for 5 years. My bones never moved from 97% and I had Dexa Scan every two years.
Needless to say, but I dropped all the 'just in cases' and said "if and when I run into a problem, then we will deal with it". Bye bye adcal, ppi's etc.
My firsr DXA scan after four months on pred showed -2. The following year the result was -1.6. In the meantime I'd corrected the time of my calcium dose, added Vitamin K2, and taken up a number of new exercises, specifically: wearing a weighted walking vest, Nordic walking and tai chi, as well as carrying on with regular walking and other exercises I'd done for years. At no time have I taken any of the bone meds, decided right from the getgo that they were far too dangerous.
My current rheumatologist prescribed Adcal, but the one I saw privately told me to take D3 supplement and increase intake of dietary calcium. You can get it from dark leafy greens and sesame seeds so it should not necessarily impact on your weight. That said, I am taking Adcal and supplementing it with D3+K2 pill.
My Gp advised vit D3 plus a high natural calcium intake and dropping the AdCal after I developed kidney stones. But, after a month without AdCal my nails are splitting and flaking and I'm concerned about my teeth and bones. I tried going back onto AdCal for a couple of days but the niggling pain which had preceded my kidney stones returned. I understand that Calcium citrate is less conducive to kidney stones so think I will try that in addition to the K2 with Vit D3 which I'm now taking. My normal diet is fairly rich in calcium but that doesn't seem enough.
Thank you, that had occurred to me but I'm trying to be vegetarian and I assume it's the animal derived gelatine that has the strengthening effect. Might see if there's a veggie alternative. Someone recommended seaweed derived calcium so I've ordered some online.
I have already bought one from Superdrug (their own brand) but I imagine it takes a while to be effective so will have to wait until it and the seaweed calcium work (hopefully). No more flash nail polish for me for a while -mostly handed up from daughter I hasten to add.
I could be wrong, but isn't it protein which nails need? High quality protein, not gelatin! Also, what were you doing a couple or three months ago? One month seems awfully fast for nails to be reacting so strongly to a change in supplements.
By the by, I read that calcium hydroxyapatite is better absorbed by people on pred so I've been taking that (as part of a rather complex bones supplement) as well as calcium citrate. Not large doses of either. I never take calcium tablets as such, only capsules containing powder.
Thanks for that; I'll investigate calcium hydroxyapatite. I've started to take Vit K2 and have ordered a seaweed derived calcium.
A couple of months ago is when the beginning of kidney stones was followed by a GCA flare and my blood markers were higher than they had ever been since PMR began. Clearly something was going wrong. Markers are back to normal now. Nails do need calcium but perhaps I'm worrying too soon in making a connection with dropping the AdCal
Have you thought of bone broth for your nails and bones? I managed last week to get a couple of big knuckle bones and have made a delicious stock some of which I used for a veggie soup and some for the gravy for our beef roast
30plus years of being veggie so I wouldn't try it but sadly some meds don't have alternative. But, you can get veggie calcium and if you eat dairy that's a good source obs.
I do eat a lot of tahini which has calcium. I do salad dressing with it, put it in stir fries and home made houmous. Try and limit oxalate foods if you are doing a high calcium meal. But to be honest I figure extra tahini or baked halloumi over rides it.
Thanks you for that. I already take the seaweed sourced calcium which is gentle, easily absorbed and doesn't exacerbate the kidney stones. But I will certainly try tahini; will get some tomorrow and make hummous.
If you have a good GP stick with them, they are a gold mine. Reading through this forum the number of good rheumies is limited, I have had four, two dreadful, one useless and one pretty good.
Having had problems with severe vitamin D deficiency in the past, I have taken 4,000iu of vitamin D daily for years, supported by K2-MK7 and magnesium. My serum calcium levels have always been good.
I’ve been prescribed AdCal and alendronic acid, but thus far have taken neither. I’ve got a scan coming up, so I’ll see what that says and take it from there.
According to the FRAX assessment tool, I have a 26% risk of a major osteoporotic fracture in the next ten years, but I’m not convinced the assessment was done correctly. I have had previous fractures, but crucially there was no consideration of whether those previous fractures had occurred spontaneously, or whether they were fractures arising from trauma which, in a healthy individual, would not have resulted in a fracture.
It is best to get your Calcium from your diet. Three are so many foods that provide us with natural Calcium. Then it is essential to take a chelated Magnesium- ie Magnesium Glycinate to help get the Calcium from the blood into the bones
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