Osteoporosis medication and CFS/ME. Very long and boring but grateful for input. Thank you!

[TeaAndStrumpets]

I have been on osteoporosis medication for over a decade, Ibandronic Acid (Bonviva) I take D3, B12. Small dose of levothyroxine. Multiple food allergies and sensitivities, I have a restricted but healthy diet. Vit C from lemons. Soya and Tahiti for calcium. No alcohol or smoking, I am a really cheap date Almost 70, weigh 7stone at 5 foot one and a half.

The osteoporosis has always been worse in my hip, and I haven't lost height. Last consultation 3 years ago showed things were doing well, and a slight improvement with hip reading. The latest DEXA scan showed hip density is declining. My consultant wants me to take 6 monthly injections of Prolia. Side effects include muscle pain, lowered immunity, UTIs, arrhythmia, osteocronosis of the jaw. Lovely! My worry is that once on Prolia it is difficult to come off it. There is a well documented risk of rebound fragility fractures, so either keep on it or move onto another.

I have been in an awful CFS crash for months, barely able to do anything. I admit I had been "pushing" myself prior to this, so I should have been more careful. I recently came across advice on using a heart rate monitor for pacing oneself during post exertional malaise. I have done the calculations and am trying to keep to my personal limit of under 90 beats per minute. I can reach 135 just sorting some laundry! It had been settling a bit, and I know I will probably regain some energy eventually. A work in progress. Actually while I had been pacing myself, my longstanding IBS had GONE. It's back now!

My problem now is I have been sent into a spin by being asked (by phone, via clinic nurse) to take the new medicine. I am trying to be a grown up but just feel really stressed and vulnerable. I do find it difficult to advocate for myself, and am really worried about "disagreeing" with my consultant. He is lovely BTW, I just feel he'd be disappointed in me not taking his advice. In an ideal world I would have some targeted weight training etc but at the moment I am very feeble.

Normally I'm a cheerful resilient person, but I just feel so low and tearful. I can't even ring my GP for advice, it's an online service.

So other than pull my socks up, any advice? All ideas welcome!

Hi OP,

All I could really think of was to ask you if you've spoken to the Royal Osteoporosis Society Helpline? If not, they might be able to talk over your worries and concerns with you and offer some moral support and guidance. It's a freephone number:

theros.org.uk/

I feel for you as I've had an awful year with mine and am not on any medication. The alendronate I was prescribed made me poorly, so I stopped taking it. Calcichew really upset my stomach so I gave up on that. I tried strontium citrate for a couple of months but wasn't sure it was good for my overall health, so stopped. But my hip scores aren't improving and I got another fragility fracture in my spine in March. I'm really terrified of taking anything with jaw necrosis as a possible side effect because I have temperomandibular joint disorder as it is and I couldn't bear even worse pain in that area! My rheumatology follow-up is scheduled for December (last one was 18 months ago) and the way things are going I expect it to be conducted by telephone, which won't help as I need new DEXAs doing, at the very least.

Anyway, sorry to moan on. Osteoporosis can be such a lonely disease to live with at times and I feel for you in your plight of indecision, it can be so scary. Somehow or other I hope you get support with your decision-making and I wish you well

Hi baroque I am really grateful for the response! Yes it can feel very lonely.

Thanks I think my next port of call will be the helpline. I can't speak to anyone at the hospital, there's just a recorded message giving an email address. I couldn't quite catch it, will call again on Monday and email them.

I also had the alendronic acid to start with, I used to get awful griping pains with it. The Ibandronic is only once a month and does give me slight hoarseness for a few days, but at least I've still got my teeth! I agreed to try it and at the last appt 2 years ago the consultant said he would be happy to keep me on it, so the latest advice was a shock. Even so, my dentist doesn't care for it and says an extraction would be a hospital job. I haven't been able to see my hygienist lately so I keep the dental floss makers in business

Yes, also, to the calcichew! Awful stuff. I tried pure calcium and it would have constipated an elephant so no to that. I have home made hummus every day hoping the tahini has enough calcium. I'm not sure I could take in enough calcium needed for the Prolia, it depletes it and causes cramps.

I also have chronic kidney disease CKD 3 and haven't had my blood test for a year due to covid19, nor my thyroid tests or BP. I know it's very fraught for the NHS but I've been sent a blood form for preProlia when my normal health monitoring just isn't happening. (Sorry that was a rant!) I just want a pause button, really, and be able to think about the decision calmly. I might add that I have never had a fracture, and the problem seems to be confined to my hip density. Spine is not too bad, they say.

I am so sorry you are also agonising, maybe some kind mumsnetter will come along and recommend a good remedy!

Thanks again, please have more and a spot of and