You really do lift our spirits when you write such caring replies. Thank you from the bottom of our hearts!
Dear Sunseaandsand, Fruitandnutcase & WELLNESS1,
We were informed on Tuesday via the hospital portal that there was a new reply waiting for us to read. The day before we had sent another message to the consultant, asking him to get in touch with us. The tone of the letter was polite but to the point and a little less friendly maybe? The reply wasn’t from Margaret’s consultant but from a member of the Rheumatology team who had passed on our message the previous day. His letter informed us that the consultant had sent a letter last Friday but as we clearly hadn’t received it yet, he would outline the contents. ( we still haven’t received the letter) The letter was informing us that Zoledronic acid could not be continued and as Margaret’s other conditions have excluded other treatments, she should follow a high protein diet and take Vitamin D and Calcium supplements. It also stated that a follow up appointment would be made in due course. Oh! I nearly forgot. Do balance exercises too.
So there we have it. After waiting 3 weeks for a phone call , still no conversation but tell the patient the medicine box is empty give advice on what to eat and take and be careful not to fall over. All this after being ‘forgotten by a previous doctor and two perfectly good molars extracted.
I wonder how many, diagnosed with osteoporosis actually run out of treatment options and are just left to their own devices?
Today we received wonderful service from a lady GP who we’ve not met. Margaret now has a big cyst on her right shoulder blade that has been getting bigger and more painful over the last 3 weeks. It is inflamed and giving her even less sleep than normal. The GP asked for photos which we sent and within a very few minutes had set up a plan for what to do now and what to do if plan A doesn’t work. Great service and went out of her way to allay any fears Margaret might have. The cyst is probably due to a poor immune system and being knocked sideways by the acid.
On the same day that we received the portal communication. Margaret got an NHS message asking if she still wishes to go ahead with a partial knee replacement. Perhaps an early indication that she’s moving up the list? Our next concerns are going to be anaesthetic and pain relief !
Thank you all sincerely from both of us for all your caring and support.
Steve & Margaret XXX XXX
Written by
Angelicspirit
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Your story is just so awful. Having perfectly healthy teeth removed just makes it all worse if that is possible. I know it’s on.y my opinion but I really do think your consultant should have sat you both down face to face and been kind and honest and told you that as you put it ‘the medicine box is empty’.
I can understand that - I have a friend whose partner is on the final and strongest med for his rheumatology problem, he has tried all sorts of meds and he knows that for him, things are as good as it’s going to get.
Being ignored and sidelined while waiting and hoping must be just unbearable. And although along the way you have met some kind people some of the people involved in Margaret’s treatment can have very little to be proud of.
If you are working on diet and vitamins then it would be worth speaking with Met00 she has gone down the vitamins and minerals route, lots of people on here take vitamins and minerals to help their bones and there are lots of vitamins out there. I take K2Mk7 to help the calcium get to my bones, magnesium, boron, I take Omega 3 DHA algae oil and my calcium capsules come from Atlantic seaweed because the calcium carbonate I was prescribed really upset my gut. So if you are going to have to go down that route then it would be worth looking into all that. I also like the ROS calcium and vitamin D food lists.
As for balance exercises - well! I’ve often heard it said ‘the secret of not fracturing is not to fall’ - which is true and is my aim in life - but as Margaret sounds quite frail she will need a lot of careful support - she can’t just go out and join a gym or I imagine even do anything strenuous, she will need to be very carefully assessed by an experienced and knowledgeable physiotherapist who specialises in osteoporotic patients.
I love this website run by a Canadian physical therapist - she is a really sensible and sympathetic person. Over the years I have had a lot of experience with physiotherapists and Pilates teacher and Margaret Martin’s exercises are very sound.
This link will take you to some very, very basic balance exercises being done by an elderly client and you might find it interesting to see ‘balance exercises’ but there is a search box and you will be able to see information about diet and vitamins ( you’ve probably already looked on the ROS site) melioguide.com/balance-exer...
My hospital has a fracture liaison service - the nurse scared the daylights out of me but they had a wonderful and sympathetic physiotherapist who was supposed to be running a class for balance. As it was, covid kicked in just after I fractured my wrist and the hospital pretty much closed down but she rang to find out how I was getting on and she was able to get me online physio from a specialist hand therapist because my plaster had bern too tight and I had developed CRPS which was horrible and painful - so it might be worth finding out if your hospital has a specialist osteoporosis physiotherapist.
If Margaret decides to go ahead with the knee operation someone in my Pilates group discovered after her first knee that you can rent an ice machine to use at home to reduce the swelling (and pain), just Google for them my friend said that made an enormous difference. Also my husband had his hip replaced with an epidural and sedation which might be worth asking about.
Our rule in Pilates is ‘If something causes you pain DON’T do it, even if you have done it before and even if I (our instructor) have told you to do it. ‘
I hope your new, helpful lady GP will be able to help you not only with Margaret’s cyst but everything else.
Thinking of you both and hoping for better care for Margaret 🙏
Thank you again for taking the trouble to share your valuable advice and experiences. I always read posts to Margaret as soon as they arrive and she always asks me to read them several times over the following days. I know they really do help both of us especially when we feel alone with a problem. I should perhaps explain that Margaret can see to read but does find it tiring. She has macular and cataracts and after 6 years on HCQ that may be affecting her sight too. I believe she also feels the warm and positive energy when a kind post such as yours is being read to her.
Margaret has never fractured due to a fall. Quite simply, she has never fallen and obviously we want to keep it that way but her bones must be so brittle. She has always had a very healthy diet and then went on to supplement that with vitamins. She tends to not buy on the high street and researches who is selling the purist products.
Thank you for the link to Melio guide That looks very useful, so we’ll see what we can get from that.
I know Margaret has one of Margaret Martin’s books, so that needs revisiting as it’s no good on the shelf!
I have written a hand delivered letter to Margaret’s consultant, so we will see what, if anything comes of that and I will now follow up on FLS and whether there is a specialist osteoporosis physio available to her.
Thank you sincerely for all your kindness, Steve & Margaret
I’m glad to hear that in spite of everything else, Margaret hasn’t fractured through a fall. I discovered I had osteoporosis when I fell off the bed one night and broke both bones in my wrist! I have the bedroom totally blacked out so I haven’t a clue what I did. I think I fell asleep then woke up and thought I’d go to the loo. I think I thought my feet were on the floor but I actually stepped off the bed instead. Whatever I did I ended up on my knees, face to face with the bedroom wall at least a meter away from the bed and the minute I moved I knew exactly what I had done.
The following year I fractured my sacrum getting up off the ground after taking some photos of the cat next door eating some catmint. I pushed really hard with one leg and instead of getting up I flew through the air backwards and landed really hard on my bottom - then my back and finally my head bounced off the ground. The ground was like concrete so things didn’t end well. I know exactly what you mean about feeling alone with your problem.
All that happened to me during covid and it really was a lonely place, I was so lucky I made contact with the fracture liaison physiotherapist on the phone because my GP surgery was a disaster area at that point. The practice was sold, the GPs who said they would stay all left and the new regime didn’t answer the phones or open the doors. I left them when someone I had never met before told me I ‘ probably had a touch of arthritis, it’s quite common at your age’ but it’s hard work dealing with that sort of thing alone.
So even if things are not good tell Margaret she has done very well not to have broken any bones in a fall.
Hopefully the HCQ is not affecting Margaret’s sight. I’ve been on it for ten years, I have an annual eye test at my optician’s and have an OTC scan done at the same time - that will show up any problems with the HCQ and so far things are good.
I look at my many books on osteoporosis and tell myself exactly what you have said - they need revisiting as they definitely aren’t doing any good on the shelf.
I should add I buy all of my vitamins and minerals individually too, sort of tailored to my needs.
I wish you luck with your consultant, hopefully you will discover a FLS in your hospital and that you can get some support. Some areas even have osteoporosis support groups, there was supposed to be one in my area but covid finished that off, you might be lucky though. The ROS will maybe have a list of them if you are interested.
In the meantime, rumour has it that we are going to have some warm weather soon, I think a bit of sunshine makes life feel better although the two hot water bottles I’ve been taking when I go to bed early at night with a book are doing a decent job.
I’m sorry that we haven’t replied. Margaret really is suffering with this cyst. A course of strong antibiotics has done nothing so Margaret phoned the surgery hoping to speak to the lady GP again. Instead, she had a call from a male partner GP who asked her to come in so he could examine her rather than rely on photos. When he saw the cyst and listened to Margaret, he made the decision to remove it the next day. Margaret woke up the next morning and there was a e-mail from the GP apologising because he had a fever!
So, the cyst is still there, Margaret is still in pain and there is a provisional appointment for Friday next week. The cyst continues to look inflamed and not infected.
One piece of good news is that HCQ eye test came back clear, so that’s a weight off our minds for another year and it’s reassuring to hear you’re able to continue with Hydroxy’
Happily we do have an ROS support group and we go whenever we can.
Margaret is constantly researching how she can help herself now that the drugs for osteoporosis have been virtually exhausted. She has recently come across an on line company that delivers bone broth from Norway. It has a long shelf life and is naturally packed with protein and collagen. I know she has reordered and it must taste good because she used to make her own stock.
Our concerns now, are that we won’t hear anymore from the bone clinic because they actually fear treating her now, in case she has another reaction (whatever the drug)
Wishing you a peaceful night Liz and thank you for letting us share, once again.
My goodness, you couldn’t make it up could you that the doctor was poorly! What awful luck. I will keep my fingers crossed for Friday week.
Great news about the HCQ that is definitely one worry less. Did I give you the link to download an Amsler chart to check for yourselves? If not just Google free Amsler chart and at least one will pop up.
Good too that you have an ROS support group should you want to meet Up. I looked on their site and some of the groups are quite active and have very interesting looking meetings.
Margaret’s source of bone broth sounds very interesting. I used to make my own but gave up after a while, I must investigate myself.
It is very hard to tell whether or not you will hear from the bone clinic isn’t it. I’m not sure how they operate - in my case when I was diagnosed I was told I would be taking alendronic acid unless I was *genuinely* having problems in which case they would give me infusions then I was to have another DEXA after five years - that was it! It didn’t look as if I was likely to be contacted for five years.
As it was I felt so ill that I gave up the AA after four months. My endo found out during a regular rheumatology clinic visit, they tried to persuade me to have an infusion instead but I had felt so awful before that I couldn’t face any more bisphosphates, so because I chose not to continue with their treatment I’m not expecting to hear from them, hopefully someone might have an idea of something that will help Margaret.
Anyway, best wishes to you both, hopefully you will find this sunshine cheering.
I'm sorry for all you've been through and are still contending with. There's very little I can add to Fruitandnutcase's thorough reply. I agree wholeheartedly that a face to face discussion with the opportunity to ask questions was called for. 'A follow-up appointment in due course' doesn't sound very promising or helpful.
The cyst on Margaret's shoulder blade sounds painful indeed and anything that interferes with sleep needs sorting. It sounds like you're in good hands with this GP. I hope you respond quickly and well to the treatment and are able to sleep better soon, Margaret. If lying on your back is your preferred position, I can imagine that pressure on the right shoulder blade would aggravate pain from the cyst. Depending on the location and size, and maybe once it's begun to respond to treatment a little, you could try placing a small pillow under the left shoulder blade, taking some pressure off the right. A towel or pillow under the right arm might help too, keeping the right upper back from too much contact with the mattress. Better sleep will help on all fronts, including Margaret's immune system. Any of the interventions being discussed, nutritional, balance, etc., would also help with recovery from knee replacement surgery, if that goes forward.
Thank you for your reply, we really do appreciate you taking your valuable time and trouble.
A little bit of good news, in so much as the cyst on Margaret’s back is maybe starting to get smaller and she is reporting that the pain is still there but not as intense. She will of course finish the course of antibiotics and hopefully it will stay away! Margaret still has a scar from several years ago when a very large cyst developed on her lower jaw as a result of taking Denosumab. That took weeks of treating, changing the dressings every few hours over a Christmas period.
I have written and delivered by hand a letter to Margaret’s consultant, so we will wait and see if we get a reply. We have at least now received an actual letter from him rather than a note on the hospital portal.
We wish you peaceful week ahead and send our very warmest wishes to you.
Thank you for taking the time to reply. I'm very glad to hear the pain has lessened. Any reduction in pain is a win, anything that helps with sleep is a godsend, so I am very happy for Margaret for anything that contributes to her comfort.
You mention Margaret's earlier scar from Denosumab and the intensive treatment it required. That must have been difficult for you both. You have been through the wringer and you both deserve admiration for perseverance, resilience, and devotion.
Thank you for your very kind wishes. I return them and wish you the very best.
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