I am female, nearly 70, in the last 20 years I have developed multiple allergies and intolerances, so my diet is quite limited. I take D3, B12 in a spray, and try to incorporate calcium in my food, eg tahini. Vitamin C with plenty of lemon juice. I have never smoked and can't drink alcohol. I am pretty thin at 7 stone, height 5 foot 1 and a half (unchanged) I am very small boned and have never had a fracture.
I was diagnosed with Osteoporosis after a DEXA scan 14 years ago. I was put on monthly Ibandronic Acid (Bonviva) by my GP. I was OK on this for a couple of years. Another GP changed it to Alendronic Acid tablets weekly, but I got stomach pains and stopped taking them. She offered me antacids medicines but refused to change me back to Bonviva " because it isn't as good"
In 2006 my T score was -2.9 at hip, -1.9 at the spine.
After 6 years of Alendronic Acid and Ibandronic Acid (inc pause when I didn't take the Alendronic Acid because of stomach pain)
In 2015 my T scores were -3.8 at hip, -2.3 at spine, -3.9 at NOF
I had been doing Pilates for years, but was finding it difficult to keep up so I decided to get help for my CFS, and saw an endocrinologist privately. He gave me a lot of good coping strategies and also asked for me to be referred to the local bone health centre. So now I am cared for by the Rheumatology department. I was re prescribed the Bonviva!
I have seen them a couple of times. At the last one the consultant was happy with my DEXA scan, saying my hip had improved 14%, and he was inclined to keep me on the Bonviva.
Fast forward to now! Last month I had my routine DEXA scan followed by a telephone consultation with the clinic nurse. She says my hip score is declining, although my spine is "OK" Didn't tell me my scores. The consultant wants to start me on Prolia, and she sent me a leaflet and blood request form in the post. This is quite funny because I haven't even had my routine GP blood tests (CKD3 and thyroid) for a year. Are my teeth OK? Not a clue because my dentist isn't seeing anyone for check ups. Nobody's fault but I feel there is poor back up at the moment, and if there is a problem it will be difficult to get advice.
I have been looking into Prolia and really don't want to take it. There is no way to phone the Rheumatology dept, I could email I suppose. My GP has online consultations but not sure she would take my concerns seriously.
Getting back to the CFS. I over-did things earlier this year and have been in a massive "crash" for months. I am barely functioning, so exercising is really difficult. I have recently discovered a method of pacing by monitoring pulse rate. We have a pulse oximeter, bought in case of covid19, and it shows me how little exertion is needed to send my heart racing. There is a formula for calculationg one's "safe" limits, and I am trying to keep my rate down below 90. Something as simple as sorting laundry will cause it to shoot up to 135. The lowest I get after a quiet evening is 70ish. I note that one potential side effect with Prolia is arrhythmia.
I am hoping that at some point I will recover some spare energy. It is a really bad patch at the moment, but I know this disease does fluctuate. One bonus with the constant resting was my IBS had vanished...that was a surprising development! Of course it is back now I am worried about the Prolia treatment
I would really appreciate advice on how to raise this with my consultant. In person he is extremely nice but I can't talk to him at the moment. The only thing I can think of is to send a message via the nurse that I'm unwell and don't feel able to make a decision at the moment. How long can I delay things? I would like to get some energy back and maybe investigate weight bearing exercise with a physio or similar. I feel very anxious but as my name implies I am ever hopeful!
I would ask your GP receptionist for a copy of your DEXA scan report, something you're entitled to, so that you're able to make an informed decision. Then you might find it helpful to discuss all this with one of the specialist nurses at the ROS: theros.org.uk. one of the less common side effects listed for prolia is fast or irregular heartbeat, so if this is something you already suffer from, I would ask whether it's an appropriate drug for you. You should also be aware that if you start prolia, if you do have to stop you'll need to go straight onto another medication (usually AA) to reduce the risk of rebound fractures.
Have you ever had your rapid pulse investigated? If you've only just discovered what's happening, you really need to see your GP about it. Personally I'd want to deal with that before considering bone meds. Bones only lose density very slowly, so delaying for a few months shouldn't make any difference.
Thank you so much for the reply! Very sound advice. I will get a copy of my scan results as you suggest.
I have send an email to my GP laying out my concerns, and coincidentally have just been given an appointment at the surgery for my overdue bloods and BP. I do have a family history of cardiomyopathy ( lost a few relatives to sudden death at a young age) I have a routine echocardiogram due soon, so it's all worth mentioning.
The chronic fatigue I have had for 20 years and the rapid pulse has always happened when I'm at my worst. I was admitted to hospital once after I collapsed, and it resolved with fluids and rest. (After a few weeks!) I suppose now I have a figure to present to the GP. Better late than never.
It sounds like you’re having a hard time of it at the moment. I have a friend who has CFS and ME. She’s a yoga teacher and one of the classes she runs is restorative yoga that is for mostly for people with CFS and ME. It’s a very gentle class, at the moment done via Zoom. Might be worth having a look to see if there’s any classes in your area. I’ve been doing this class since having several spinal fractures. As already suggested talk to the specialist nurses at theros.org.uk/ they’re easy to talk to and very knowledgeable about osteoporosis. I’ve spoken to them a few times and have found them very helpful.
Thanks mollysuki that is great advice! Sorry I keep missing people's comments but I will try and keep up better. Your hugs were much needed!
I have just joined the Royal Osteoporosis Society after seeing many favourable mentions on here.
I have felt so feeble the last few months, but it is useful to have a "project" if you see what I mean. I am taking note of everything on here, and will investigate what's available locally.
I managed to get a dental hygienist appointment although the dentist is still unavailable. I will ask her about the osteocronosis stuff too.
I agree with Met00. I wouldn't start Prolia unless you are absolutely sure and certainly not until you have checked out your heart rate issues. It's particularly difficult at the moment getting any kind of checks done so it may take a while. I would be honest about your fears and email the rheumatology department or perhaps ring the rheumatology doctor's secretary.
Thanks biofreak I will try and have a chat. I think the clinic nurse is expecting me to turn up obediently. The consultant is very nice and I would like a discussion with him. I am hoping to speak with the ROS helpline first, so I know what to ask.
My GP didn't even mention the heart rate business. I am persevering in energy conservation in the hope that my system will calm down. The trouble with CFS/ME is that one feels a little bit more energetic then does too much too soon. Monitoring heart rate certainly shows where the exhaustion comes from, e.g. even a lovely chatty phone call can push me over the limit some days.
Are you able to contact your consultant by calling his Secretary.
I can understnd your reluctance to being treated with Prolia.
I had only one injection with prolia in February 2019, I also had many side effects from it (although not everyone does) I had decided not to have any further injections and was due to have the yearly injections of Zoledronic acid in December2019.
My first injection had to be cancelled becuse I had 2 episodes of severe chest pain.
I was taken to A and E and was told my troponin levels were elevated and I needed to be put under the cardiologist and have further investigations.
I had 48 hr monitoring and as a result further tests were arranged for me.
More spinal fractures and Covid 19 has got in the way of the tests been done, they have contacted me often so no fault on their part but now the situation in my part of the country is such that it is not possible, and having had my 3rd fracture since lockdown 3 weeks ago I am not able to go anywhere anyway.
I now have 7 spinal fractures without trauma.
I f your bone density is declining some of this could be due to your activity levels lowering.
You also say that you have a limited diet owing to food intolerance, is this someting that you could have help with through a dietician.
My advice to anyone with osteoporosis who is fracture free is do everything you possibly can to protect your bones, and avoid fractures.
These fractures cause horrific pain, and are life changing in so many ways, they rob you of your independance and the life you once had.
If you are doing ok on the Boniva with no side effects and want to continue with it for now.
Simple answer, just tell them .They will not refuse you the treatment, they would rather you be on that than nothing at all.
In my own experience once these one treatmens are started then it is best to continue with one or another of them because on stopping them the density of the bones takes a bigger dive.
Take care, I am sure you will hear much good advice from other members.
Thank you for your response. I emailed my GP with my concerns and she replied that she has patients on Prolia with no problems. She says it was "unfortunate" the consultant hadn't spoken to me and recommended I contact the Rheumatology nurse for a chat. I put down details of my rapid heartrate with the CFS but she didn't comment. Maybe I should have mentioned it separately but I thought it was relevant.
My next step is to speak to the ROS helpline.
The Covid situation is a problem, isn't it? I can envisage a situation where treatment schedules are totally derailed, lack of appointments, interrupted drug supply chains. It seems very risky at the moment. If I get any side effects I bet my GP will just tell me to pull my socks up
I have also wondered if a different bone scan would show the actual bone quality. I was reading about an ultrasound scan which is said to be pretty good. Am I clutching at straws? I am very thin boned, tiny wrists etc.
You are so right, they can't force me to take this stuff. I have a croaky voice the week I take Bonviva, but it's only once a month. Perhaps an infusion would be more effective? It sounds as if I'd be back on it anyway after a period on Prolia. I am writing a list of questions!
Yes diet is an issue and am always open to seeking more advice. I think it's more boring than anything, and I do try and supplement as well. Some exercise would be doable once I recover from my current CFS crash, in the meantime I'm investigating small weights and stepping devices. Got to start somewhere. I used to enjoy Pilates when I had the energy, but it got so I'd be unable to do a full class, and would be shattered all the next week. That has been frustrating.
Thanks for the useful input, I hope you manage to get some acceptable treatment soon. All the best.
Sounds like you have made a really good start in how you want to move forward.
There is so much ignorance around osteoporosis, not only in the general public but amongst people in the medical proffesion too.
So much conflicting advice and little knowledge does not give us much convidence.
Yes asking lots of questions is what we must do, and it sounds to me like you have a good consultant who will offer you the best advice for your individual needs.
Look forward to hearing what path you decide to go down next.
Thanks sunseaandsand, I have lots to think about now. I have been trying to get copies of my recent DEXA scans but the GP receptionist who tried on my behalf couldn't get any. However, she unearthed the copy of the consultant's recent letter from my GP file, which apparently I should have had, but it never arrived. It recommended "having a discussion".
The clinic nurse did NOT have a discussion with me at all! She rang me for a telephone consultation, but told me this treatment was recommended and that was that. She said she doesn't have any complaints from people who take Prolia, therefore I shouldn't worry.
Hi, it appears you belong to the same club as myself.
CHASE IT UP YOURSELF!!!
It is so wrong that we should have to do these things, then it is suprising what we find out.
I have always found the nurses at the clinic I attend to be useless.
If we wait around nothing happens, if possible try the consultants secretary to request your dexa results, I am saying this because it is something I have had to do myself.
Also it may be possible to have a telephone appointment with your consultant to discuss it in detail with him.
Well good luck and hope you get it sorted out very soon.
Thanks sunseaandsand, that is becoming very apparent. I think if the consultant's explanatory letter had actually been been sent to me my conversation with the nurse who did the telephone consultation would have been very different! As it was I was taken aback and didn't ask for further discussion.
I don't know why my GP surgery can't access my scan results, they did try. It's a good suggestion to email the secretary. Once I speak to ROS I hope to have a few things to discuss.
Thanks again and take care.
Yes too right! I felt thoroughly patronised. The more I read about Prolia the more cautious I am. I'm feeling overwhelmed this week but am gradually getting a plan together. I appreciate all the advice on here.
I am so sorry to hear all you have been through and are going through. I went through a rough time on Prolia but luckily I only had one dose. Realise it doesn't effect every one the same and my husband has had one injection with no apparent side effects. Your scores did improve so I believe there is no pressure to go on to something you are not sure about. Especially with your other problems. It was a really bad 3 months for me and the side effects seem to be fairly common. The most dangerous thing about Prolia is you can never really go off it otherwise it can cause rebound fractures (a thing I can't understand as it is supposed to help bone health). I think how you react to other medications generally could be a clue for you. I wish I had read Health Unlocked prior to going ahead with the injection but from all the posts felt confident stopping it after just the one dose.
Good luck with all your health problems and decision making.
Thanks wbiC, that is extremely useful! I will read carefully through all the suggestions. I recognise that exercise from my Pilates days, we called it The Dart and it was really hard! I think I could do it again. I think I could manage some squats, it wouldn't hurt at all.
Many thanks for taking the time to write, sorry I've been slow to respond to people and I hope I don't forget to acknowledge anyone.
I am so grateful to all the kind people who have responded so far!
All the best.
I
Thanks so much obejoyful, I'm glad you have been able to stop Prolia in good time. Are you considering any other medication?
I was estimating I must have been on Alendronic Acid then Ibandronic Acid for a over 11 years. I am currently on Bonviva (ibandronic) and assume my stable spine measurement is due to that. It is the hip that is showing decline, which did make me wonder if dedicated weight bearing could help? I will try anything!
Rather than take Prolia I would stay on Bonviva, although I get hoarse the week I take my once monthly tablet. Looking down the side effects is scary, though, I have really tried not to think about them - know I should but have had head firmly in sand. One I hadn't realised is alopecia. I have been receding on one side for the past few years, I always blamed my thyroid but maybe it was that? Oh well, too bad really! I haven't seen my hairdresser since March, so I've been letting my hair grow long with a centre parting and nice clips, and it isn't too bad at a glance Sheds like crazy though. I did threaten a buzz cut but hubby looked appalled!
Have read through all the replies that you’ve had and feel that with your CFS you might well ‘crash’ again. My friend who has CFS is suffering from long Covid and I know this has added to her condition.
Take your time to digest the information, talk to the nurses and they’ll help you with questions to ask.
As for medication I wouldn’t dream of saying don’t take a particular drug as we’re all very different and osteoporosis is not a ‘one size fits all’ condition. I’ve been on 3 different ones and what I’m on now suits me.
As we know all medications have side effects even paracetamol and if you have additional health problems (I do) what suits one may not suit another.
If you’re in the UK there’s a very good support group on Facebook. It’s called Osteoporosis Support Group (UK). It’s a private group and there’s a vast amount of knowledge from the members. Between them and the nurses at ROS they have got me through some very dark days.
Be kind to yourself.
More hugs x
Thanks mollysuki, I am shutting down a bit I feel I have information overload... Brain fog is dreadful atm so just going to think about things tomorrow, like Scarlett O'Hara!
I feel extremely sorry for your friend. Long Covid sounds so familiar to me. The only glimmer of hope I can see is that any good treatment found may be somehow applicable to CFS/ME sufferers too. The "psychological" explanation has been used too much in the past, as if we wish this condition on ourselves and could just snap out of it.
I appreciate the Facebook tip. I'm not on it at the moment but maybe one day. Thanks again xx
Thanks for your comments, espeegee. I really appreciate you getting in touch.
I did consult a private endocrinologist 5 years ago, and he recommended those very vitamins. I take them religiously every day
He prescribed a small dose of Levothyroxine which I now take as well. You are absolutely right about GPs, mine always said my levels were fine but the consultant disagreed.
He was concerned to rule out anything else before diagnosing CFS/ME. The most useful advice regarded stress reduction, sunshine and lots of lying flat to keep the cortisol? levels low (I think) Also using a daylight lamp regularly.
He did say he thought my problems were caused by glandular fever from years ago being reactivated. This really makes me fear for sufferers of Long Covid, if it follows a similar pattern then it will be terrible for them. I hope it will be well researched. The answer must be out there somewhere.
Thanks again, I am very grateful for all suggestions!
Hi: I've been receiving Prolia injections for three years now. Before each injection I must have a blood test which is fine because it's done right there in the hospital. I have osteoporosis, IBS, and fatty liver. After being on Prolia I must say I feel no ill effects because of the injections although reading all of the things Prolia can cause is upsetting. My main concern was having an implant procedure in 2018. So far so good. I'm due for my injection in December.
Thanks henworth! It's good to hear another view. I am pretty well decided against but worried about the future (as we all are, of course) I'm sure the IBS has caused a lot of my problems, but it's a vicious cycle, isn't it - stress causes IBS for me, and IBS causes stress ;-(
I emailed the consultant's secretary this morning to get a copy of my scan. I had to go to the GPs to have my routine blood test straight afterwards, but got an urgent phone call as I was leaving which delayed me. Rush rush.
I COMPLETELY forgot to take the hospital blood request form with me. I remembered it as I sat in the waiting room! Felt such a fool. Luckily the nurse was really helpful and we got it sorted out later. By then my BP reading was 140/105 so I've got to stay calm and retake it at home. Normally much lower but the worry about the Prolia has got me in a real tizzy.
I just want to forget about it all!
Thanks again for another perspective, I appreciate it.
I am 70 and was shocked I had Osteoporosis, as I am very active and have done aerobic exercises all the time for decades. My GP sent me to a specialist who recommended Prolia. After I did my own research I decided against Prolia and I went with Raloxifene because I had lost a lot of bone. I've read it only works on the spine, so I also went to a Dietician (I now measure everything I eat and make sure I get all my nutrients my bones need - using the 360 app) and hired a very knowledgeable personal trainer, who understands aging, and now I do strength training 3 times a week safely. After less than 2 years, I had another Dexa Scan and gained 21% bone. I gained a lot of the bone in my spine, but also gained some in my hips.
I am so happy I did not go on Prolia, because I had an infected root canal where the tooth had to be removed and had a successful implant performed. The surgeon said if I had taken Prolia, I would have had to stop taking it for 1 year before he would even touch me. Also, when stopping Prolia I read you lose more bone faster.
I've had no issues with Raloxifene, and just went to my eye doctor who verified everything looks good. I will stay on it for another 3 years.
Hugs to you!
Thank so much thedebster, that is extremely interesting to hear about. I am really impressed by that gain! Once I get through my current CFS crash I intend to find a personal trainer for some targeted exercise. My diet is a struggle, due to my food allergies. I try really hard to make every mouthful healthy. My weight is around 7 stone these days, I don't suppose any of it is muscle!!
I already have some hair thinning but the thought of losing teeth really upsets me more. I'm not vain about my hair but to lose teeth would be awful. I'm seeing my dental hygienist today and intend to ask her how often she sees problems with the osteoporosis drugs.
Use the ROS helpline the nurses 0808 800 0035 are great I am 57 & have OP in my spine, have Gut Dismotility & other health challenges and have been asked to consider parathyroid hormone treatment for 18 months then Prolia... not made any decision as yet but have been told that at present this is the last option for treatment until research finds something else, the ROS helpline is terrific at explaining treatment, listen to concerns, being a sounding board anything really very supportive. Good luck and not easy deciding what to do.
Thank you very much Charlie50, that sounds like a good plan. I keep hearing excellent things about them. I've just received my DEXA result so I will have a word with them soon.
I have OP worse in my hip, my back is not so bad, so I wonder if I could build the hip density up with exercise. I will ask them if it's even a possibility at this stage. Difficult to do when feeling poorly! I am willing to try though. As you say, very difficult to know what to do for the best.
I'm sure my IBS has been a major factor for me, and lots of allergies which set things off. I do try to eat healthily, but it's hard to cover everything.
There is certainly a lot to consider, this forum has been a great boost for me and I hope you get lots of advice
Thanks again for writing, it is much appreciated!
Take care.
Update. I got a copy of my DEXA scan.
Spine is -2.3 (was -2.2 in 2017 with z score -0.03)
Femoral neck -4.2 (was -4.1 in 2017 with z score -2.4)
Total hip -4.1 (was -3.6 in 2017 with z score of -2.4)
Unfortunately I didn't get sent any z scores for 2020
BMI 18.4 Height stable. Weight loss 4.4 kg (8.9%)
Ibandronic Acid since 2007, 25 mcg Levothyroxine since 2017
No fractures.
I could see my T scores back to 2006, the only thing to note was my hip was then t -2.9, spine t -1.9.
If I have made a stupid error in transcribing, sorry my head is fuzzy today!
Does this look about average? Or awful? I am almost 70.
I find it hard to believe your hip score worsened from -2.3 in 2017 to -4.1, yet your spine score only changed from -2.2 to -2.3. Our bones usually lose density at a similar rate, so I would be asking what would have caused so much bone loss in your hip while your spine hadn't changed (-2.2 to -2.3 is within the recognised margin of error, therefore shouldn't be considered a change). Did you have the DEXA scans on the same machine? I would guess that one or more of the scores in 2017 and/or recently was wrong, but the only way to check is to have yet another scan! I'd personally recommend a REMS scan, which uses ultrasound rather than x-ray and has been shown to be more reliable than DEXA because it isn't open to the same errors.
So sorry Met00, I only just saw your response.
Apologies I if I have misled with my ps. The -2.3 at hip was the z score.
T score at hip has gone from -3.6 in 2017 to 4.1 in 2020
I do wonder at the DEXA scan accuracy. Usually there are 2 radiographers working together. This time only one.
I will look into the REMS, I would be pleased to get another reading.
Thanks again for your interesting observations. Take care.
Even a drop from -3.6 to -4.1 is a lot when compared to no change in your spine! The average rate of loss is 1% per year, which (very roughly) would mean your score would be expected to change from -3.6 to around -3.9. Either there's some factor that's making you lose bone faster in your hip (eg medication for another condition that specifically impacts hip bone density), or something isn't right. Normally, as I said, you'd expect similar bone loss throughout the body, so, given the stable scores for your spine, there's a strong possibility of error in either the spine or the hip score, or both.
Thank you! That is really interesting. I think the REMS is looking ever more appealing. I will get one once Covid is down in my area. They do a clinic not far from me, and I am sure a few months' wait won't hurt.
I am definitely not going to take the Prolia though.
Let us know how you get on. It's a shame the clinics have had to close during lockdown, but hopefully you won't have to wait too long. What part of the country are you in?
East Midlands, so can get to most places...when allowed!
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