Ah well, it had to happen. Phone call with GP. I finally got the results of the Dexascan I had in October 2017. Before I really started on Pred. A score of 3.5 on the hip and thigh area, less elsewhere, enough to give concern. This might have been partly due to the Omoperazole I have been taking since 2004 because of my liver disease. I didn’t know about this risk until quite recently... damn. But I have got repeat prescriptions for Ranatadine now, which may be less harmful in the long run.
So, I have been persuaded to take the Risedronate that I have been hiding in my medicine cupboard since it was first prescribed (long gone are the days when I just had a small drawer! -husband has his own!)
Wish me luck. I have a feeling I am going to need it... 🙁
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peace_lover
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Oh the result was there, just nothing had been done with it...Basically it was a total muck up (politely said) as the hospital didn’t send the results through to the GP surgery (who requested it), I had a vague reply from my GP about it when she was looking for it on the system, and took it as all ok, so decided not to take Risedronate. In fact it wasn’t on the system at all, although I was having X-rays, CT scans and ultrasound scans at the same time, so quite a lot was going on.
Hey ho, I now chase things up a lot quicker, lesson learned.
Good luck with taking risedronate which I assume is a bisohosphonate for osteoporosis . I was prescribed this a few years ago and refused to take it as it can have side effects . Instead I took calcium and vitamin D and increased my exercise. As a result I reversed my osteoporosis much to the docs surprise. There’s been quite a bit of research done on bisphosohonates so might be worth investigating or at least being aware . Im not trying to say don’t take bisphosphonates as I’m sure they help lots of people.
Yes, thank you. I am aware of this, hence my hesitation. But the scan results (before Pred) are not good, despite my exercising (I teach dance part time) and have always been active. I’m taking calcium and vit D. I shall see how it goes. Regrettably. I’m glad your approach is working.
Hi there peace-lover. Check out alternative : Strontium Citrate. Need to take with Vit-D3 (which is not a true vitamin, is a hormone); Boron; Magnesium; Vit-K2-MK7; Vit-C; the B vits; Calcium; Zinc.
See excellent information from Lara Pizzorno and her book, 'Your Bones'. Much information on her on the internet. She now works for a vitamin / supplements company. Was headhunted not that many years ago, by a vitamins / supplements business, AlgaeCal - you can check them out on the internet. AlgaeCal produce a combined tablet, containing all the relevant ingredients. Way back when, I took the single supplements. Yes. Sure got v. tired of swallowing pills !!
I had osteoporosis, and my excellent rheumatologist, who was not too keen on the Bis drugs, suggested I take Strontium Citrate - this was way back in early 2000. Then, having discovered 'Your Bones' bought the book and followed all the recommendations. Turned it around and have never looked back.
Just a suggestion - especially as those bisphosphonate drugs are...and it is recommended not to take them for too many years, between 3 years and 5 years. I sure bless my rheumy for giving me the heads up.
Here is a very good monograph on Strontium Citrate - and all matters 'Strontium' - from Lara Pizzorno, LifeExtension / AlgaeCal website. Will answer many questions :-
No, am not referring to Strontium Ranelate. Which was a chemicalised version of strontium citrate, salt of ranelic acid with, adjuvants : aspartame and two other items that are not immediately coming to mind (nuisance). Got it : Aspartame (E951); maltodextrin; Mannitol (E421). Servier Strontium Ranelate was known to cause unwanted side effects. It is now withdrawn from the market, and in the UK was not available from Sept 2017. In France was withdrawn in 2016. More on Servier Stront. Ran. The side effects are almost as bad as the bisphosphonate drugs :-sante.lefigaro.fr/medicamen...
Strontium Citrate is a different kettle of fish. Stront C is available as a pure powder, no adjuvants, at all. This is what I myself took. Other supplements I used / use as stand alone. I did not, nor take, AlgaeCal. Nor do I hold shares !
Just in from the Vitamin D Council - American - the following article on Vit-D3 and hip fracture, and indicating the optimum dosage of 5K - 10K per day. I myself take 4K per day and have been doing so for c.8 yrs. with breaks every now and again.
Sturges, M. & Cannell JJ. Vitamin D deficiency increases risk of impaired functional outcome after hip fracture, The Vitamin D Council Blog & Newsletter, 7/10/2018.
Source
Di Monaco, M. et al. Classes of vitamin D status and functional outcome after hip fracture: a prospective, short-term study of 1350 inpatients. European journal of physical and rehabilitation medicine, 2018.
Check out Better Bones and the work of Susan Brown. I have severe osteoporosis, do lots of exercise, Tai Chi/Quigong and have taken all the drugs. So far, Prolio has had the most positive results. Good luck with all this!
Hi peace_lover - this just came in this morning, interesting. Looks like, if on the infusion Bis drugs, it would be a good idea to have your Vit-D levels checked, as findings seem to point to more unwanted side effects with low levels, ng/mL <30 v. less unwanted - to no side effects, with higher levels, i.e. >30 nm/oL (snip...) "Baseline levels of 25(OH)D ≥30 and <30 ng/mL were considered adequate and inadequate, respectively.[14] "
(reference : #14 - Holick MF. Vitamin D deficiency. N Engl J Med. 2007;357:266–281.)
Acute Phase Reactions After Zoledronic Acid Infusion
Protective Role of 25-hydroxyvitamin D and Previous Oral Bisphosphonate Therapy
Conclusion
In conclusion, this study confirms that 25(OH)D levels and inadequate 25(OH)D status are significant risk factors for APR after ZOL infusion. Translating our observations into clinical practice, we recommend adequate 25(OH) D supplementation for patients prior to intravenous BP to reduce the risk of APR. Moreover, the role of previous treatment with oral BPs as an independent protective factor for APR should be evaluated in a larger cohort.
Before ANY bone protective medications are taken/used the calcium and vit D levels should be checked - because unless they are within acceptable ranges the bone protective medications can't work. It is mentioned very clearly in the prescribing information from the pharma companies.
OH's was even lower - a whole 7! The only effect it seemed to have was raised BP - which normalised when his vit D was improved.
In the UK many doctors appear to believe it is a very expensive test, one quoted £200 to a friend! In fact it is well under £30 - as casting one's eye over this site confirms:
The reading for yr OH was 7, and he was hypertensive which normalised, when his Vit-D was taken in hand. How interesting. Must get my D levels checked again - last time they were slipping somewhat, and my BP is...Ho-Hum !
The 'NHS Home Test' is still a pretty good buy (used to be £25) and sure takes the pain out of waiting for a hospital appointment etc ! Good one.
That is the one the link is for - single ones are now up to £29, But bulk buys of 1000 work out at £22. You would think a commissioning group could make a small profit ...
Hadn't looked at the sums - but indeed yes. Get together a commissioning group - just needs organising - Hmmmmm. Could keep one amused - or be-mused ! But am living in France now...
No, No, piglette - the doctor did not know ! He was right wrapping it around his left ear... <LOL> In the UK can get a pvt test for £29. See the link that PMRpro put up. It used to be £25.
PMRPro did say ‘In the UK many doctors appear to believe it is a very expensive test, one quoted £200 to a friend!’ and I must have misunderstood who was quoting £200. My friend was quoted £85 as she showed me the written quote. I was horrified.
Someone was trying to make money then on the side. Please show your friend the truth of the matter.
I remember when the home kit was first introduced, quite a few years back now. The media was all over it. Unfair that 'whomsoever' is trying a trick . Ggggrrrr. Nope, £29. Don't know what it would cost in America. But in many states, one may not send / post, a pvt blood test over the state line (speaking from memory here !)
Yea. Not bad. Good one. Ensure the Vit-D you take is the correct Cholecalciferol and dose : need c.4000 IU per day. More if levels are low, <30, if levels good, 50 - 80 nm/oL, then a maintenance dose of 2000 - 3000 IU per day is fine. Usually maintenance during winter months. Can titrate around the numbers. Just keep a check on what your levels are.
It was her GP who told her it was £200 as a justification for refusing to do it for her.
Send your friend to the link I gave! They send out a kit - blotting paper and the needful to get a finger prick sample. She could have two and still have change...
I'm sorry you had to wait so long for your dexascan results, especially as those results showed an issue with the readings. That should really have been made available to you at the time so that meds could be taken to improve the issue. That being said I was originally on Aludronic Acid, which I had a bad reaction to and was changed onto Risedronate, which was fine. I had no side effects of any kind on it. My issue was remembering to take it. I am on omeprazole for a hiatus hernia and I was not aware of of any risks with it. You definitely do learn something new every day.
Hi yes, in retrospect I should have been taking Adcal or something similar to counteract the depletion of calcium that long term use of omeprazole can cause. But I only became aware of this very recently. In future it shall be finding out a lot more about everything..
Fourteen years ago when I was first diagnosed with PBC things were very different. My local hospital was coping, my GP surgery was small but effective and appointments easily made, hospital and surgery talked to each other. Now the hospital is very definitely struggling, the surgery has combined with 3 others to make a group practice and communication is patchy. You can always, with perseverance, get a same day care appointment (they were great when I had a GCA wobble, turned out it was occipital neuralgia, but they took it seriously. Routine appointments are a nightmare, there just aren’t enough doctors as many have retired. It’s the same all over the UK I think, but I feel for people who are feeling very unwell and have to fight for an appointment and have no relative/friend to help.
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Oh well! 🤷♀️ I tried!
here we go again!
Here we go again
Where do we go from here
