My Mum's experiences

[DanJA]

Hi all - I have been caring for my Mum, since she had a fracture of the sacrum last year, followed by a pelvic fracture too. Both of these were not after falls etc., just everyday activity. MRIs noted osteoporotic fracture. After recovering from the sacrum fracture, she then had pelvic one, which meant she couldn’t walk for 3 months - very hard for someone who has always been so active and seems so much younger than her 83 years. She’s walking again now, with a stick, but by no means back to where she was. During the fracture recovery, various pain relief meds were prescribed, including morphine patch - none of these helped, but gave the gift of constipation etc., even though the GP at one stage told me we should “experiment” and give my Mum several together - er, don’t think so! Pleased that she is now only taking paracetamol and ibuprofen.

The GP, after being pressed (I pointed out osteoporotic mention on MRI notes during a home visit, she hadn’t even noticed), prescribed AdCal and also Alendronic Acid. After talking to friends, about their parents’ experiences, I suggested a DEXA scan to check bone density at this stage. I also discussed the medication, and side effects (Mum has had a little hair loss, impact on appetite, swollen lower legs and feet). I was given short shrift by the GP - telling me the scan won’t happen until 3-5 years on the meds. From what I have read here, that’s often the case, but seems barmy to me - why would you not check the density beforehand?! And the doc said the “medication is working, no question, it will be. No, there are no alternatives, and if the side effects are too much, just stop taking it….no, no alternative! No, blood test is no use, no need for that…” I know it’s rubbish about no alternatives, as a mate’s Mum switched to injections, and another to infusions.

I feel a second opinion coming on! I’d love to hear what other experiences are, if anyone has had similar to this? And any experiences with Alendronic Acid, and side effects? The past year has been hard enough for my Mum, and we lost my Dad in 2023. It just makes it harder, when GP shuts down any questions, and washes their hands of my Mum, who has never needed anything from the NHS most of these years.

[Gala]

So sorry to hear about your mum’s experience. I think the GP’s attitude is very unhelpful and if possible, I would recommend seeing another GP within the practice. You and your mum need to feel heard and be able to ask questions and get answers. If your GP is practicing alone, then you can try and bring your grievances to them and see if they could change their attitude. If not, next step can be PALS, who are usually excellent in supporting patients. In terms of what has been communicated to you: if your mum’s fractures happened from everyday activities - as far as I understand, it is enough to diagnose OP and scan is not needed for the diagnosis. However, it can be useful to know the score to be able to see if it improved when the scan is done a couple of years after starting the OP meds. It is a reasonable request from you to have a scan now. When my doctor suggested I took AA, I asked for a scan and was referred straight away. But this was rheumatologist, not GP. In terms of AA and side-effects: your mum needs to be able to follow the procedure strictly - swallow the tablet (which is quite large) with a full glass of tap water first thing in the morning, then stay upright for at least 30 minutes - no lying down or bending down. After that she can have other meds, breakfast and resume normal activities. It is a weekly tablet, so this is done once a week. If this is done correctly, many people have no side-effects. But if your mum already has some issues with her oesophagus, then it can be more tricky. People who cannot tolerate AA can switch to other meds which also have their own side-effects, so it is a matter of trial and error. I don’t know why your mum’s GP categorially denied other options. They may have a reason knowing your mum’s medical history, but they need to explain it to you properly. I hope you find the right support for your mum. You both have ben through a lot xx

[Lizzie]

Goodness, your GP’s attitude is absolutely dreadful! I think you need to either see a different GP or move to another practice. I had a freak accident and managed to fracture my sacrum a few years ago and when I finally made contact with a doctor I asked for an X-ray which she said I could not have!

Then even worse - she said I ‘probably just had a touch of osteoarthritis - it’s very common at your age - she didn’t say ‘dear’ but it was implied. I was really cross at being fogged off and at that point I went to A&E and saw a lovely young GP at their clinic who diagnosed sacroilitis which although it didn’t turn out t be that sounded like a very good guess. I came home from A&E via a different surgery and collected a ‘Welcome Pack’ to move to them.

Eventually though I saw a physiotherapist privately then had a couple of private MRIs for and that showed various things.

I was prescribed naproxen along with omeprazole both of which really upset my gut and I had the worst diarrhoea ever plus a racing heart so that was stopped and I managed on paracetamol and ibuprofen, taken two hour after the paracetamol throughout the day. As soon as I could I stopped the ibuprofen. I also bought a PEMF mat that I used to lie on and I felt that made a massive difference. You have to be able to lie flat on the floor and there are a few contraindications to using one.

It was painful for a long time so I hate to imagine how your mum feels with a fractured pelvis on top of the sacrum. I used my Nordic walking poles all the time and used to walk in a nearby nature reserve. It was flat and there were lots of benches dotted around to sit on or I used to lean on the poles.

I took alendronic acid for four months but felt so dreadful in so many different ways that I eventually stopped taking it. After a few weeks I went back to feeling my normal self. It’s not something I would ever advise anyone to do, my physio and another physio friend were both horrified but it worked for me.

Does your local hospital have a fracture liaison service? Could you ask to see a rheumatologist? Your mum definitely needs more support than she is getting from her doctor, especially when you take into account her age and the fact that she lost her husband so recently. I think a second opinion would be a very good idea. My best support came from my private physiotherapist so it might be worth thinking about that.

I didn’t get on well with the calcium carbonate and vitamin D3 tablets that I was prescribed. I checked my diet with the ROS calcium and vitamin D calculators and worked out that I was getting enough dietary calcium but. I now take an Atlantic seaweed based calcium capsule to top up my dietary calcium. I take magnesium, K2-Mk 7 and I buy my own D3 capsules and eat a really healthy diet. I also eat 70-100 g of dried prunes every day, they are supposed to be very good for bones.

It agree, it is rubbish that there are no alternatives - I was offered infusions but declined as I didn’t want a whole year’s worth of medicine in my system in case I felt just as bad. However, loads of people take osteoporosis meds with no problem at all and infusions by pass the gut.

Go online to the ROS website and read as much as you can about osteoporosis, you could even phone their nurses helpline and ask for advice. I really feel for your poor mum. If it’s any help I am now back to normal and can walk long distances now. It took a while though and determination.

Good luck and good wishes to your mum. I hope she can get the help she deserves soon.

[DanJA]

thanks so much for your reply, it really does help us, and I will go back to doctor’s / get second opinion etc. It’s so frustrating and unhelpful - my Mum’s medical history is essentially tip top health and never needing any doctor or medication, so you’d hope for an easier experience when they are needed! Thanks again, this community is great and we don’t feel so alone now xx

[DanJA]

thanks so much for your reply too - Lizzie- it really does help us, and sorry to hear about some of your frustrating experiences too! I don’t know on the fracture liaison service, will find out. And will definitely get a second opinion. Thanks for the insight into medications experience, and we have now been doing lots of research on the ROS website too, spoken to a nurse and got leaflets etc. Pleased to hear you are back to normal now, great news. Thanks again, this community is great and we don’t feel so alone now, have passed on both your wishes to my Mum and she appreciates the thoughts and info xx

[Lizzie2]

I really feel for your mum. Have a look through this website it’s one of my favourites About Margaret Martin and MelioGuide I found lots of helpful information on it - sensible information that and the ROS site.

I can imagine how awful it is for her especially having been so fit before her fractures plus losing your dad. I remember hobbling into the physio and saying to him ‘Well put it this way, I won’t be jay walking for a while’.

I was 73 - a bit younger than your mum when it happened - I flew through the air backwards while getting up off hard ground - boy did it hurt! I was fit and energetic though like your mum, I had been walking 10K + steps a day and my physio said I would get back to that and while I don’t do that much although I can if I stop in between and I do occasionally nip across the road. The recovery takes a bit of time but tell her not to give up hope.

I hope you can find someone knowledgeable and sympathetic to help her, the right pers9n can make a massive difference. She is very lucky to have you fighting her corner though

and a (((big hug))))for her from a fellow sufferer.

[Janice]

DanJA - I am experiencing the attitude you describe within the NHS (aged 78) and do feel insulted and let down that my financial contributions from my pay, continuously since age 15, are not appreciated and I am just lumped into the ‘financial drain on the system’ category.

It does become more and more difficult to keep active and carry out exercises but it really is one of the most important things. I was diagnosed at 58 with advanced spinal osteoporosis but did not have a fracture until 74 (following 2 years of Thyroxin which I did not know thinned bones!). I have agreed with the hospital to take K2 and D3, having taken part in a couple of treatment trials which just caused other health issues. I really believe that my flexibility over the years has saved me from fractures as healthy muscles, ligaments, etc. provide bone support. (since childhood I have been a ‘faller’ and did plenty of that with no breaks after the diagnosis. No-one should be expected to take a medicine without knowledge of possible side effects or reactions with other medications as most of the time we are the ones who have to look after ourselves and need that information. It does become more and more exhausting, trying to research and decide plus struggling to stand our ground with the medical prima-donnas. Keep up the good work!