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PMRGCAuk
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No dex scan.

As A A was playing havoc with my stomach I asked for a dex scan to see if I actually needed to take it. Gp requested one and I have had a letter from the hospital this morning refusing it and saying I don’t need one. Fuming!!!!!!!

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I would be too, no reason given? 😡

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No reason at all. Just said it had been considered and decided by a doctor that there was no reason to do a dex scan.

Grrrrrrr!!

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polymy, I was also refused my first request for a DEXA scan but I kept pushing until I got agreement. However, if they had tried to put me on AA at the same time, I would have said “No DEXA, no AA!” After taking AA for 5 years or so, there has to be a break from it, so fine to take it if a DEXA has shown the need, otherwise save it for the time when you might really need it. I took steroids for 5 1/2 years at a starting dose of 40mg and my bones remained intact. Wasn’t even prescribed the recommended Calcium plus Vit D due to an oversight on the part of my GP/rheumy. I do hope you can persuade your GP about the DEXA - if all else fails, there is the private route. Meanwhile, are you having daily ‘live’ yoghurt to help the stomach problem?

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Thank you Celtic. I will appeal. I am on CalciD Daily. Same as adcal but only one a day. Yoghourt gives me a very acid stomach. I wish I could tolerate it. Thank you for your help.

Liz.

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There are private scanning clinics in major centres. The London Imaging Centre does a DXA for £65. They scan both hips and the lower spine. The NHS only does one hip. It is worth it if you can get to London. Another forum member decided it was worth the train fare. I was refused a DXA because "You are over 74 and likely to be osteoporotic anyway, so you should take the AA." I was scanned. NO osteoporosis. After 7 years of Prednisolone. I still refuse AA.

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Thank you for that. I am close to Nottingham so I would imagine some of the private hospitals around here would do a dex scan. It would be quite an ordeal for me to get to London on my own. I had a dex scan in my 50s and my bones were that of a 30year old. I am now 76 so have every hope that my bones will be fine. I don’t want to be taking AA.

Liz.

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Emphasise your problem with taking AA and ask for a recount - being on pred is a risk factor. They may of course just be assuming "everyone over 65 has low bone density" - not in this day and age we don't.

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Thank you PMRpro. I will appeal along the lines you suggest. I think it’s appalling. I am at risk and need to know whether I need the suggested infusions or not. Do they really expect me to carry on taking AA ,which gives me stomach pain and burning, without questioning it??

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Hi Polymy, I managed to get a Dexascan because I had PMR and my GP had a form with PMR on it allowing for scans. However a friend got refused who did not have PMR and she raised merry hell, particularly as she had helped with the fundraising for the scanner. She did get a scan in the end though.

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Thanks Piglette. I will fight it. If I’m not successful I will have a private one. If there is a form with pmr on I will get my gp to sort it out. I’m sure it can’t be right to refuse it.

Liz.

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Hi Liz, it is a real pain having to fight for everything but satisfying if you win. I gave up and went private to get my PMR diagnosis having been told I had a virus, a long term virus!!

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Hi

Unfortunately all so called non urgent referrals to hospital have to go to a medical panel before being granted lots are being turned down at present .But you can appeal

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Saw new GP this week, very nice lady. The result of my DEXA scan which I got with no problems, was that my thigh was slightly osteoporotic but not seriously so. I told the GP that I didnt want to take AA as it upset my stomach and she was happy to leave it for a year and then request another scan. Did offer me some form of HRT instead but I turned that down, having got through the menopause without it. She was very sympathetic about PMR especially my sore hands in the morning and suggested upping the PRED from 12 to 14 for a month and then have another blood test. I seem to be very lucky with our local NHS service, long may it continue.

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There is no need to take the AA or any of the bisphosphonate drugs. They don't work and long term are detrimental, as they stop bone turnover. About every five years bones renew, 'turn-over', this is a necessary part of regeneration. The Bis drugs stop regeneration. Makes the bones harder and harder, until in the end they are like the dead branch of a tree, brittle. Hence the propensity to thigh fractures after several years of taking any of the Bis drugs ! In addition, one can develop osteonecrosis (bone death) of the jaw and / or the the thigh. Plus, IF on Bis drugs, one has to (must) advise one's dentist, as invasive dental work of any kind can lead to jaw problems There is much information on this and now, doctors advise to stop taking Bis drugs from 3 or to 5 years after being on the drugs. There are many side effects, and you don't need to go there...

So, what can you do instead ? Strontium CITRATE (Doctor's Best is a good one), Vit-D, Vit-C, Magnesium, zinc - there are a couple more, that escape me at the moment. In ***addition, buy the book, 'Your Bones' by Lara Pizzorno. Full information on treating osteoporosis / osteopenia is outlined and fully discussed in the book. It is excellent.

Be assured that there is no need to take the Bis drugs... And, I reversed my own osteoporosis by following the suggestions detailed by Lara Pizzorno. Interestingly, it was my excellent rheumatologist who advised against the Bis drugs - too many patients throwing alarming side effects. She advised me on the Strontium Citrate and vitamin methodology. I was / am most grateful to her.

Hope this helps -

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Dear Ruadh, I really do not think you should be saying that bisphonate drugs do not work, as it is incorrect. Some of what you say about long term use is true and has been documented by medical professionals. Also they should not be taken just as a prophylactic but only if you need them after bone density tests have confirmed this.

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Strontium itself is controversial. It makes bones appear denser because strontium is heavier than calcium, but I don't know if it makes them stronger.

On the other hand there is a study showing that nutrition, supplements and exercise do improve bone density just like the drugs do, but without risk of side effects.

hindawi.com/journals/jeph/2...

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Strontium in and of itself is not controversial, what was controversial, and has been removed from the market, is Servier's Protelos Strontium Ranelate. First, Servier *chemicalised S. Citrate then added adjuvants and...side effects. Servier (a pvt French pharma Co.) was also hauled up for supplying upholstery sponge for breast implants !

Strontium Citrate, which is also found in various vegetables, has not shown worrying side effects - diarrhoea in some patients. (I have IBD, took S. Citrate for a time, no diarrhoea, though am reactive to many veggies and fruits). Strontium Citrate Has shown efficacious strengthening of bones without destroying the natural bone turn over necessary for good bone.

Pharma spurned Strontium Citrate, there was no money to be made from it. In stepped Servier who then *chemicalised Strontium Citrate, added adjuvants and...a 'new' pharmaceutical on the market. Protelos S. Ranelate was only on the market for a few years - 15 / 18 years ? Am glad they steppedaway from the scene as S. Citrate, is efficacious and does not need to be chemicalised nor to have adjuvants added !

'Correct' : nutrition, supplements and exercise are indeed necessary. All this is well covered in Lara Pizzorno's book 'Your Bones'.

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Addendum : drnibber.com/safety-of-stro...

Quote (snip...) "Several human studies on strontium citrate have emerged, producing the same positive results as other forms of strontium in combination with other important bone health nutrients and a healthy lifestyle. In the two recent studies using strontium citrate for one year, there were no adverse effects of any kind either self-reported or from blood samples (inconsistently or sporadically taking strontium may not produce positive results). Further, strontium citrate has not produced the same adverse effects as strontium ranelate during the first year of use." (more...)

Quote (snip...) "Since its discovery until today, strontium’s (sic S. Citrate) popularity has risen and fallen on waves of uncertainty of whether it is safe, whether it is effective, what it is effective for, how it works, and how long it works for, and other answered questions. Strontium has indeed been safely and effectively used with relatively few adverse effects for periods of up to 10 years! In spite of unfounded arguments, the evidence points to the overwhelming safety and effectiveness of strontium for healthy bones."

Strontium Citrate, in capsules, has been proven to work in treating osteopenia and osteoporosis - basically no side effects, though diarrhoea for some. Is advised to attend to diet and life style : nutrition; supplements; exercise. Again, I would strongly advocate 'Your Bones'.

Hope this clarifies and helps -

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Rhuadh, to whom are you addressing these comments? I'm well aware of the book you mentioned, happen to have it on my Kobo. I also don't know if strontium makes bones actually stronger or just gives the appearance of greater density. I know it's found in our food and is part of what our bones are made of but I don't think I'd lightly take therapeutic doses of it. But I personally have no intention of taking anything like this, don't actually need it, and I feel you must be intending these comments giving such detail about strontium citrate for someone else? This is a very confusing forum.

betterbones.com/bone-nutrit...

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HeronNS : Strontium CITRATE - Not the Servier Labs 'Protelos Strontium Ranelate', a drug, which is outlined in your response and covered in the link betterbones.com/bone-nutrit. BTW, the Stront Ranelate is now removed from the market, too many problems with the chemicalised Strontium Citrate, adjuvants and the chemical salts. One can buy the pure Stont Cit in the powder or capsule form. *No adjuvants. Need to make it more bioavailable with Vit-D3; Calcium threonate; Vit-K2; Zinc + Boron. Solgar have a supplement without the Strontium Citrate which includes : Calcium Complex; Vitamin D3; K2; Zinc + Boron; magnesium etc etc - can certainly recommend the Solgar brand.

IF one does include the Stront Cit as a stand alone supplement, then ensure that the calcium and the Stront C are taken at different times, at least 4 hours apart. Doctor's Best is a very good brand. Do not exceed the dose of Strontium Citrate. And in all cases it is best to work with a qualified health adviser - and remember, everyone is different. What suits one person may indeed be highly detrimental to another person !

As regards Vit-D3 - there is no standard definition of 'optimal'. It is best to have your levels checked. Recommendations tend to vary, the Vitamin D council of America suggests 20 - 50ng/mL is adequate to good for a healthy person. NICE guidelines:-

"Vitamin D requirements

There is consensus that levels below 25nmol/L (10ng/ml) qualify as ‘deficient’, but beyond this

there is currently no standard definition of ‘optimal’ 25(OH)D levels.4 Some sources suggest that levels above 50nmol/L (30ng/ml) are ‘sufficient’, while 70–80nmol/L (28-32ng/ml) is ‘optimal’."

France suggests 40 - 60nmol/L.

Leaves one scratching one's head... Have your levels checked and go from there. Vit-D3 and Calcium work in synergy.

It is a very interesting subject and much covered by Councils, therapists, specialists and then of course by vested interests. It is certainly best to check your levels of Vit-D3 and to work with your health provider.

Apologies for delay in response, had not noticed that there was an answer awaiting - apart from the fact that I have been away rather a lot since end Nov - battling with health and attending hospitals ! (Side effects from a fluoroquinoline drug and MRA contrast dyes has led to continuing health problems, then add in stasis from sitting at the computer and - Ho-Hum !) Oh, if sitting at computer rather much, remember to get up and walk around every so often...blood needs to circulate :)

Go well -

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I'm still not sure why you are sending me all this info about strontium. Are you sure you don't mean it for someone else? I don't take strontium and have no intention of doing so.

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I was responding to your note addressed to me.

My original note on the Strontium Citrate question was really addressed to the group, apologies if your name was included. I take on board, acknowledge, that you are not intending to take S. Citrate. For my own self, I have reversed my osteoporosis. Am very happy with the results as indeed are my three rheumatologists : London, Paris and in Brittany. Excellent results. Bravo to Lara Pizzorno's book 'Your Bones'.

Go well -

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It is a confusing forum. You evidently replied to a thread which "replies" to me, but to avoid this one has to reply to the original post. I have to say I have been finding this feature of the forum really annoying lately. I posted a link to an article about a particular medicine in another topic, and there have been zillions of replies, most of them healthunlocked saying they are replies to me, but it's really a group of others chatting amongst themselves, nothing to do with me! But I keep getting notifications and my hopes up that it really is someone replying to me! Unfortunately it's possible that the other people on the thread won't get a notification that you've posted your very detailed and thoughtful reply. What would happen if you cut and pasted it again as a reply to the original post? Just a thought. Or, even better, made a new post because I am sure there are many people who would be interested in the information.

All the best.

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I don't see where the confusion for the person replying arises to be honest - if you click on the Reply at the bottom of the comment you wish to reply to you must KNOW who you are "speaking" to. The recipient might find it confusing...

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Almost almost all the posts on that tocilizumab post I made were coming to me as replies to me, not comments in the post. I might get fifteen in a day, and none of them are anything to do with a discussion I'm involved in. Irritating enough that I'd delete the post except obviously it sparked a lot of interest! At least that flurry has died down now! Similarly, I still have no idea why Ruadh was replying to me in this posting. As you no doubt noted he/she carried on and replied to me again with even more unneeded information. Why?

Sorry, I'm feeling very old and crabby these days. :(

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Did you complain to HU??? I'd suspect it was a gremlin with their new stuff. As for people not being able to work out who to reply to - that is them, not you... I know what you mean though!

If you scroll back you will see that 18 days ago you DID make a comment about strontium being controversial. And it all went from there.

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Could be, and no doubt I too have been guilty of trying to proselytize about things and annoyed my innocent target....

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No-one has to read it...

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What is AA?

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Alendronic Acid...supposed to help with bones to treat osteoporosis/bone density.

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