Hi folks, I've not posted in a while but have used the time wisely - more about that later. You may remember I was being railroaded into a Zoledronic acid infusion without having a DEXA scan first-the GP insisted I'd need the infusion anyway after being on high dose Prednisolone for more than a year. It took months, but the bone clinic (actually it was the geriatric clinic, but I don't think it's fair to call me a geriatric at 68) finally agreed to a DEXA which quite shocked me. T score is -3.9 and hip -3.1, much worse than my last scan 3 years ago. I had to agree to the Zoledronic acid but have to see the dentist first because apparently if I need dental treatment after the infusion, no dentist will go near me! It's this awful necrosis of the jaw which is a side effect. So, waiting for a dentist appointment, then a blood test to see if all is well to go ahead. Hating it all!
But, during last 2 years of shielding I have taken a writing course, rewritten an old manuscript of mine (women's crime fiction) and self published 'The Purple Dolphin' on Amazon, Kobo, Barnes & Noble and a few others. I'm sending out free copies in PDF, MOBI or EPUB formats in exchange for honest reviews on Amazon or Kobo, etcetera. So if anyone is interested please message me. To get a flavour of the writing you can find the 'Look inside' here : amazon.co.uk/Purple-Dolphin... Thanks everyone xx
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strawclutching
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You have used your time well! Congratulations.I am sorry that your DEXA scan results were disappointing. It is the only thing that would induce me to go on Alendronic Acid. I have had good DEXA results twice but my relatively sedentary lifestyle during the pandemic will have taken its toll and my GP’s wheelchair warning looms.
I've been sedentary too. The fatigue doesn't help with that, fear of getting on buses and going to the supermarket among bare faced germ spreaders. I've taken so many supplements over the last 6 months I was convinced the result would be much better. Calcium, magnesium, Vitamins D, K2, Collagen, Soya Isoflavones, Red Clover. Must have spent hundreds and all for nothing. Cottage cheese is coming out of my ears. I got up on the ladders to wash an egg off my conservatory roof that the pesky youths across the road tossed last weekend. Only managed to spread it around further. With hindsight maybe shouldn't have gone up the ladders with my holey bones threatening to crumble. And the thought of wheelchairs, enough to put the fear of God into you. Thanks for the congratulations, Sheffield Jane.
That’s what he said to me, when I refused AA, “Do you want to end up in a wheelchair? “just prior to a DEXA scan where I was told that I have the bones of a 30 year old. It’s the weight bearing exercise that I haven’t been doing.
I did not tolerate any bone meds. I followed ideas from 2 research studies using strontium citrate(not ranelate),MK-7, dietary calcium only,Mg glycinate. I reversed my osteoporosis while taking prednisone. This was while being unable to heavy exercise with asthma. I was measured on the same machine. You can get strontium from Amazon.
Thanks Karen. I used to have Strontium Ranelate on my repeat prescription but they withdrew it saying I'd been on it too long. I wasn't offered anything to replace it. Odd since I had osteoporosis at the time and the strontium had improved it slightly. I too take the Mag Glycinate, MK-7, K2, D3, also silica, and calcium from seaweed. I'll see if I can get the Strontium again. The Citrate form gives me stomach issues. Thanks so much.
Sorry and all - but geriatric medicine is the care of the older adult, generally defined as "over 65" although not many need specific care until about 70. However - I have seen patients in their 50s who could be classified as geriatric due to frailty and conditions. And it is inescapable that for the majority of people, things don't heal as well after the age of 55.
I was a geriatric prim too - it's geriatic primigravida, first pregnancy at (in those days) over 21 or something!!! I was 28. Would there be any non-geriatric prims with that definition these days?
I had my first baby at 21. Kind of worst of all worlds but they are devoted to each other and both psychologists. The one in the middle is quite different in temperament but definitely part of the gang.
The DEXA from 2019 was lumbar spine = T-2.5, hip T-1.7 so it's dipped fairly quickly in 3 years, not helped by the flare last August when I had to hike the dose of pred up from 7 mgs to 20 mgs. as the GP ordered. Always thought I was quite sprightly at 66 until GCA hit me. Now I feel 95.
Hi Strawclutching - sorry to hear about your results & l’m sure you’ve done all your research - Our Friend HeronNS has done a lot of research into bone health & l’ve attached Our Post from FAQ’s where you can read Herons Experience.
As an aside - l’ve only ever showed signs of Osteopenia but had to start Zolendronic Acid as an adjuvant therapy following Chemo - l found it absolutely unremarkable - l too visited the Dentist before l started the Chemo & they did anything necessary.
I had 6 infusions ie one every six months for three years. My latest bone scan was totally within Normal Parameters.
One thing to be sure of before you start any medication. I mention this because you appear to have been careful to look after your bones and you say you "spent hundreds and all for nothing". Have you been tested for "secondary causes of osteoporosis"? Not all can be laid at the feet of pred.
I follow a couple of bone health forums and one thing which comes up quite regularly is problems with the parathyroid glands. Apparently it is not unusual to develop a benign tumour on one of these glands (which have nothing to do with the thyroid itself, only their position in the body) which causes the parathyroid to malfunction. Hyperparathyroidism causes calcium to be released from the bones into the bloodstream. Once this problem is corrected bone density can start to improve naturally, but if it is not treated then no medication or natural efforts will work.
Not saying this is a problem you have but it is certainly one which needs to be ruled out.
I know what this is. My mother had it towards the end of her life. Excess calcium in the blood caused behavioural problems with aggression. If I remember, I think she was transfused with something to lower her blood calcium a couple of times. My blood calcium has been below normal since my first blood test after commencing the Prednisolone and the last test I had was January this year, so I don't think it's likely in my case. But it's very interesting because my mother's thyroid gland was underactive since she was in her 20's and she took medication all her life.
I guess the short answer to all this is to ask your doctor to make sure you've been checked for the possible secondary causes, and also be aware that the parathyroid glands regulate the level of calcium circulating so any malfunction in them could be affecting your bones.
I think I will ask the GP - even though he thinks I'm a hypochondriac - for a PTH test. Don't fancy doing the 24 hour urine collection one though, but it's all fascinating. Seems I got all the bad genes, what with the type 1 diabetes as well, while my older sister sails through life without a pill in her medicine cupboard.
I have a similar dexa to you which has declined rapidly, but think that might have been before pred started, but the reason I was given tcz so quickly into my treatment. I also have an underactive thyroid (40 yrs) and a benign tumour on one of my parathyroid glands. Pre diagnosis my calcium was extremely high and it seems it has been over the years but never investigated. I am now awaiting an op to remove the gland and hoping it might improve my bone density. But my appts with Endo can be nearly a year apart so guessing it won't be any time soon. I think I am expected to do the 24hr urine collection!
Unfortunately it also means I can't get the dental treatment I need as I have already had 2 zalendronic infusions. So not surevwhen that could happen as I need implants.
My family have a history of thyroid issues and my mother's bone density was a lot worse than mine and had cement op
It's like a catch 22 situation, so if they do this...then they won't be able to do that. You must feel like you're waiting around for appts and treatment forever with no end in sight. I hope the cement op is something different to what I'm thinking. A friend of mine whose teeth implants failed was told he could have a cement like substance injected into the jaw bone to strengthen it but he declined. I couldn't imagine what that was. Sounded horrendous.
Interesting, I didn't know that they may do that for teeth as well, my mother's was in her spine. But really it was all a bit late by then. She had a pretty rough time in the last year of her life.
I know, it was rough to watch. She went from being a 6ft scary Consultant to 5'8 and pathetically grateful for any help she got. Hence my absolute terror about being as bad as her. I have already shrunk 2 inches.
Can be very successful - an aunt of a friend had several spinal fractures and had one or the other - was back playing tennis the following year, at well over 80!
Fascinating stuff and like something you'd hear about on 'Tomorrow's World.' Can't imagine it would be available on the NHS, at least not until everything else had been exhausted. Good to know though.
The lady I mentioned had it on the NHS. You can have a lot of things on the NHS if they are cost-effective. Getting someone out of a wheelchair with almost uncontrollable pain is pretty cost effective.
Well done you ! What an achievement 🎉 Have pre ordered your book on Kindle - look forward to reading it !! All the very best health wise too - hope everything starts to improve 🤞 !
Oh heavens, I could have sent you one! That's so kind of you. Must warn you there's some swearing and a couple of adult scenes just in case you're easily shocked. Thanks for the good health wishes too. x
There are alternatives that may be more suitable but obviously you’d need to ask the professionals. I had Alendronic Acid and had terrible reaction, GI bleed ended up in hospital now have gastric problems and damaged my oesophagus. As a result they said I’m eligible for annual infusion of Denosumab for bone protection instead. Might be worth looking into. Wish you well.
I couldn't take Alendronic Acid either and I've had a GI bleed too but not so bad I had to go into hospital. Eating is one of the few pleasures we have left as we get older, and having to cut out favourite foods reduces quality of life in my opinion. Life's a bummer sometimes and I feel for you. Thanks for the good wishes. x
Like Mrs Nails I’ve had Zolondronic acid infusions with no adverse effects. Just an improvement in bone density. Good luck and looking forward to reading your work
Thank you Ana. Somehow I've convinced myself I'll get every side effect under the sun after my Pred experience, but I'll just have to bite the bullet and hope it works out ok. If you'd like a free copy of the book, just private message me with your email and I'll send you one.
Click/tap on the avatar and the profile page comes up - Message is in a blue box at the top right corner - click on that and a page comes up to write your message, only the person named will be able to see it
Hi there I too rarely post. I've been on prednisone 5 years and I get scans yearly. My 1st year I lost 8 % bone mass and my rhumitologist wanted me on bone meds.
After reading on them and realizing that they do increase bone mass but they also harden your bones so if you do fall your more likely to break.
I love my GP he's a great informative guy and he said I'd have more respect for you not to take them. He said "No one has won a pulitzer prize for these drugs so what does that say"
I can understand if your frail.
I started a very specific calcium pill recommended by my chiropractor who's wife was loosing bone mass also as well I started strength conditioning which helped tremendously with not only loosing strength but my bones.
I read the same about bones being more likely to break after the biphosphonates. Which type of calcium did your GP recommend? The one I'm taking is natural calcium seaweed (Lithothiamnion calcareum) Try saying that after a few shandies. It's supposed to be better absorbed, but apparently not in my case. Hoping to get more exercise as the weather is improving, so that might help.
I take New Life for Bone Density. You take 3 a day which I found hard because you need 2 hrs before and after prednisone and I split my prednisone dose.
He told me take 2 at noon the other in the evening.
It stopped his wife's bone loss it drastically slowed mine but as I said what really helped was also doing strength conditioning which I have a private trainer who trains pro athletes and has worked in rehabilitation.
I got to the point I couldn't squat and now I can press 200 lbs. Trust me I don't look buff lol.
I just looked at this link. I suspect there is strontium, undeclared, in this patent product. I looked at the ingredients. Except for boron and hydroxyapatite its the same stuff everyone’s been taking . The latest research, I have seen, recommends dietary calcium only and not in large amounts.
I read a book by a Dr. Levy. The thesis of the book is that osteoporosis is not caused by a lack of calcium but rather by a lack of magnesium and especially Vitamin C. He calls osteoporosis "focal scurvy". I take magnesium malate, 3 pills per day, and 1500mg. of liposomal vitamin c. I have stomach issues from so many years on prednisone. Liposomal Vitamin C does not hurt my stomach. I refuse to take any bisphosphonate( Prolia), because i have issues with bone marrow and don't want to add anything else.
Sorry PMRpro, my mistake. I was speaking about Zoledronic acid, which I'd read does make bones more likely to break. I just assumed Prolia was the same class of drug.
Every instinct in my body is telling me to stay away from Prolia and all other drugs for osteoporosis. I am on Actemra, which is a monoclonal antibody.
Yea, I suspect the same thing. I also have MGUs, Monoclonal gammopathy of undetermined significance. It is a monoclonal protein made in my bone marrow and in my case has no caused Multiple Myeloma, but I strongly suspect any drug that messes with my bone marrow is going to stir a pot best left unstirred.
Actemra's one of the more expensive ones. We call it Tocilizumab in the UK I believe. I asked for that and was told I had to get through all the cheaper ones first and be unable to tolerate all of them. You're very fortunate.
I haven't heard of Magnesium malate, that's another one to look up. I've been taking Magnesium -L-Threonate and Magnesium Bisglyconate for a few months now. There's also a magnesium body spray I use every two days. I always take it hours away from the calcium so it has a better chance of being absorbed. I asked for magnesium levels to be tested but the lab wasn't doing magnesium at the time - Covid or Brexit reasons, who knows? I also take Vitamin C twice a day. The Liposomal one I'll have to look up too. My stomach issues calmed down as the Pred dose was lowered, but I still have to be careful what I eat. Are your blood calcium levels good?
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Just clarifying
Dexa scan 
latest DEXA scan
Alendronic acid & DEXA scan
Dexa scan
Zoledronic Acid ~Infusion
