I have not posted much in the past month since the added Osteoporosis diagnosis but have also been away for a few weeks. The sunshine certainly helped me mentally and I now feel able to cope with the additional diagnosis.
Came back from holiday to a letter from my Rheumatologist advising that I go back on AA for 5 years and then rescan. I have a GP appointment on the 29th to see what advice the bone clinic gave. My decision is not to go back on AA but take the recently prescribed Adcal that I was not given during the Past 17 months. Also eating more greens and doing some weight bearing exercises.
I am being careful not to overdo any weights but doing it mainly for my hips as that is where my bone density is lowest. This maybe due to being mainly sedentary since diagnosis. Difficult to know as there was no baseline scan.
Some anxiety as I am on 1/0 Prednisolone and have not had significant problems so far but due to try 0 in about 7 days. I have worked throughout doing 3 11 hour days a week and also looking after a grandchild on another day since diagnosis. Like everyone, suffered the fatigue, sweats, low mood and everything else but feel ok currently apart from knowing that I have some areas of Osteoporosis.
On the other hand, I have been told that there are a lot of women with it but not aware as they haven’t had the scan. I am aiming to try the non medication for a year and will then have another scan (will have it done privately if not on the NHS). If it has got worst or pmr requires a return to higher doses of Prednisolone , I will consider medication.
I have also got some advice from Osteoporosis sufferers on the site but finding it difficult to post anything. Does anyone know if I have to register for another site? I tried but couldn’t and presumed it is because I am registered on this site.
Sorry for the long post. I will keep following the site but trying to juggle so many things, including appointments and maintenance for glaucoma. Very grateful for all the advice received during my diagnosis and good luck on your journey.
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Mitziecat
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Sorry for your situation, I am the same as you in deciding what to do about Osteoporosis. I am waiting for the letter giving me a date for Zelondronic infusion, which I will not have. Will be discussing with GP about other choices that I can try and stop if I have to.
There is always PatientUK that you can try, it is excellent too for advice and others in our situation. Keep us posted what you decide.
Hi Sheffieldjane. I try and remain positive. If you don’t u go under. After the initial low and the tears I had to think about it realistically and take steps to prevent falls. I have invested in some sensible shoes and fitflops for holiday was recommended. They were so comfy I have now bought some fitflop shoes and sketchers walking pumps.
The 2 weeks of sun in Barbados also helpedand now dreading the cold damp winter. I feel the cold in my feet and this may have contributed to previous poor circulation and muscle cramps. My aim is to try and keep pmr at bay as I feel this is the more important issue for me at the moment. If the 0 period don’t work then hopefully a very low dose will maintain it until remission. Will certainly keep you updated.
You can register for other forums - I also belong to VasculitisUk and LupusUK.
I'd be hoping the rheumy got himself up-to-date about for how long it is advisable to take bisphosphonates. Latest thought is NOT as long as 5 years...
You should be able to just add them to your profile you set up for here - I can't experiment just now as HU is playing up for me and I have it set up to make it easier to search for posts. I can't face sorting it out again! But I THINK you click on My Hub at the top of the page...
I read your post with interest, Mitziecat - I was diagnosed with osteoporosis last week. Like you I don't want to take medication (alendronic acid in my case) but I think I'm going to have to because my scan readings were so low (I can't blame pred entirely because I've only been taking it since July). I'm seeing a GP in 3 weeks, so I've got plenty of dithering time still! Let us know how you get on.
Hi. Thanks for your response. What was your readings and is it worst in your hips or spine? I did a lot of reading about it so that I would have a valid argument to put to my GP. I need to look at all the alternatives before I jump in with the first medication given.
Yes link did work & I read the replies. The scores show a fair amount of osteoporosis & you are right that natural methods might not be enough, especially for your spine. Think about it carefully in the weeks before your GP appointment & aim for the best treatment with less side effects.
Does anyone here know about forteo? It is a bone building medication that one has to inject daily. A friend with osteoporosis who has had a few stress fractures is starting it soon. She is tiny and was diagnosed in error premenopausally and put on alendronic acid before menopause. She attributes her fractures to the malpractice of her physician. So does her current MD.
I don’t really understand osteoporosis and how they decide risk fracture based on bone density. It seems that most women I know have osteoporosis. Thankfully they have had no fractures. I also know very very fit and active women diagnosed with osteoporosis who have had athletic accidents and no broken bones.
I’ve read recently that they are cautioning women to stop alendronic acid after 3 years.
But no new studies on Vitamin K2? No further studies on prunes as a substitute for medications? We really need a restructuring of who decides what studies are needed and how they are funded.
"I don’t really understand osteoporosis and how they decide risk fracture based on bone density" - neither do they if the truth were told - they just chose a number!
"It seems that most women I know have osteoporosis." - they probably have osteopenia but unlikely ALL of them really have osteoporosis. Osteopenia is just lower bone density than at your peak which is usually late 20s-early 30s. But doctors will TELL women they have osteoporosis when they don't.
There is no real evidence that low bone density will definitely lead to fractures nor that high bone density prevents them. Most people with a fracture have normal bone density. There are many factors involved and most of them are far more significant in preventing fractures - removing hazards of all sorts, correct adjustment of medications especially BP meds, keeping hydration and vit D levels up = etc etc etc. The last time I wrote about it it was about half an A4 page...
Hi. Forsteo is a parathyroid hormone that builds bone by stimulating the bone cells. Calcium levels have to be monitored very carefully if this is given. It is also more expensive to prescribe.
Risk factor is based on things like age, weight, previous fractures, menopause and medication such as steroids. If you have all of the above you are put in the high risk section and medication is advised. You can google the risk calculator (Frax score) and work out your own risk.
I have not been prescribed vitK K2 but will ask my GP about it. Is it essential for calcium absorption?
Hi Mitziecat, when you say "go back on the AA", how long did you take it before. If they want you to go back on it does that mean that there was no improvement.
Hi Primarose. I started AA at the beginning of June 2017 when I started Prednisolone. I stopped it in June 2018 with Rheumatologist approval when I was on a lower steroid dose. I didn’t have a bone scan at the beginning so GP argument is that I may have already had Osteoporosis & the medication stopped it from becoming worse. That I will never know but read that it takes 6-12 months to work anyway.
I see, the problem is that they keep changing the goal posts about AA and the information leaflet, obviously to safe guards themselves against any more law suits.
My friend has taken AA for at least seven years, her doctor has ordered another scan for her. She told me that she didn't have any side effects from the AA but insisted that she would never take "that stuff" again.
I can't see the insistence of medics to force folk to take it. They say that it is to protect the bones but the AA leaches from our good bones and can leave them brittle. In effect it does good but also take away the good at the same time.
As it a is systemic who knows how long it stays in the body, they haven't really worked that one out yet.
No - the AA doesn't leach, it is likely to be in your bones forever. But it does have an effect on how the bone forms and microcracks have been identified that make them brittle.
It is useful to us in this community to have updates on osteoporosis, I have taken myself of AA and not had the courage to tell my doctor yet. But was amazed at what I thought were Pred side effects were actually AA, feel better for stopping taking it. I have never had a bone scan, I was told it was not necessary as I was given it precautionary because I take steroids for GCA. I am not going to take it again unless I am proved to need it by a bone scan. I do take Adacal and eat a good diet.
Why can they not understand that you DO need a scan to know if you need it? If you have "normal" bone density you don't need it yet and in fact it is said it shouldn't be used. But the company did a fantastic marketing campaign when it was launched saying it should be used prophylactically. Doctors are notoriously difficult to persuade that something they learned at a particular point in their career is wrong - and we must suffer. Q1 to any doctor wanting us to take something has to be "Would you take it?" - and then don't always believe them if they say yes
Foolish as it may sound. I have Osteoporosis, am 71. I used to take AA. Stopped it because of tummy problems, then given Ibandronic Acid Mylan, which my dr thinks I am still taking. When I told him I wouldn't be taking it any more, he said it was my choice, but recommended it. So, I don't take it. No pills for it, no exercise/special diet.Yogabonnie has a good 'theory' on this subject. Can't remember and she is on holiday in Sweden.I will take my chances.
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