Hi, I have had my telephone follow up appointment, ( for those of you who don't know, my clinic one was cancelled )
I have been told, that because of the current situation with Covid-19 it is not worth the risk to my health to bring me back to clinic for another six months. I will have a face to face appointment and my scans and x rays in March next year.
The six month delay and the comment that "I need a new back" has left me wondering is this their way of telling me that they can no longer help me.
For some time now I have asked myself is it actually worth it, putting up with side effects and feeling generally unwell after being put on one treatment after another, then going on to have 6 spinal fractures without trauma.
If I have the Zoledronic acid infusions I can not now see any possible benefit to me. My bone density is so low, and probably even lower now because of not having any further treatment after the prolia injection
In six moths time I will not have received any treatment for over 2 years.
I do not see the Zoledronic acid infusion as a miracle cure, my bones will never recover what's lost and I do not believe that the bone loss would be slowed down enough to make a significant difference.
Even though I know I am in a bad situation with my back it has left me feeling rather deflated.
Perhaps my best option now is to start looking into the possibility of getting a "New Back" from China, after all that is where everything else is made, and if they can produce something as big as Covid-19 then making a new back for me would be a very dimple task !!!
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Sunseaandsand
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This is just awful. So sorry to hear what a dreadful situation you are in. I have osteopenia and cannot take the prescribed alendronic acid tabs as they cause my crohns to flare up so I just take high dose vitamin d and calcium. Nothing like as bad as your situation but who knows what the future holds.
Just wanted to send you best wishes and hugs. I wish I could do more but I am thinking about you and hope you find a way forward. Your sense of humour has no doubt got you through some challenging times. Hang in there xxx
No it is not a good situation to find oneself in, yet what can we really do when we are in others hands.
I am sorry to hear of your problems with the Alendronic acid tablets, yes they can end up giving more problems than what we started out with. Hopefully they may be able to help you in some other way. It makes it all the more difficult when we can not toletate the medications.
I wish you all the best with the future, please keep in touch.xx
Are you on Prolia? Is this what your appointment is for? If so, am VERY concerned for you, SunandSand. (I am less concerned about the face to face appointment and X-rays, etc ) But if this "six month" appointment is for a PROLIA shot I'd be VERY concerned. I am NOT a medical professional so I can only speak from my experience. When my Prolia shot was DELAYED just a few weeks I suffered several vertebral fractures that ended my active, pain-free life. I would STRONGLY suggest that if they are delaying your Prolia shot that you contact your PHYSICIAN (NOT the support staff) and express your concern that delaying your Prolia shot could result in fractures. (That is stated in the labeling for the drug!) They should be able to find a safe way for you to be seen for this in a way that would not leave you exposed to a crowded waiting room. If they refuse I would immediately send this request to have your Prolia shot ON TIME via REGISTERED MAIL (that they would have to sign for). And keep that receipt!
I have been given the different OP treatments for many years. Last year I had my one and only shot of prolia, this gave me bad side effects that lasted until December last year.
I was then booked in for an infusion of Zoledronic acid in March of this year which was cancelled owing to lock down. In May this year I had another fracture in my spine followed by another in July. I now have six.
I do not know if the one shot of prolia has contributed to my recent fractures in anyway, there is a question mark hanging over that.
My appointment was for Scans x rays and to see a consultant.
It the consultant who has said I will have a face to face appointment in March of next year, that will leave a gap off two years without any further treatment.
Oh my no words can say how much I feel for you. RoS helpline nurses were great for me explaining treatment, I'm sure they would be good to talk to for at least support & as a soundboard, they let me talk for the first time felt like I was listened to & not fobbed off.
Keep posting good to sound off, yep China seems to be a good solution but then you'll have to pay import charges do you think they'll sell via Amazon...keep having a giggle when you can we're all here...... My Area OP nurse still denies Zoledronic Acid is harmful or Priola has awful side effects, glad ROS helpline nurses are available.
I have not contacted the ROS nurses yet but fully intend to do so.
As you say they do have a very good listening ear and I have always found them to give excellent advice.
I am also going to book a telephone app with my GP, (I have a very good one now) he can not do much either other than listen, but I feel he should know what is happening.
It has always amazed me how the Specialist OP doctors and nurses deny that the treatments are responsible for our side effects.
When I was on a 2 year course of Forsteo I had terrible Bone pain and Nausea and was constantly told it was not a side effect.
Even though it was written in Black and White in all the patient information I had!!!
When questioned about these things the defence barrier goes up, you just can not win with these people.
Without holding on to some sense of humour I think I would have given in a long time ago.
It's good that this forum is here for us, it really helps us to get through the rough times. xx
It is amazing like you say when side effects are in black and white. Keep your humour like you I would've given in ages ago & I'm not in your league with OP...... good luck with GP & ROS nurse.
I am one year past over due for Prolia injections, did my own research on how the meds work. It has to do with the RankL Protein, a natural substitute of Black Cohosh, K2, D3, Vegetable based Calcium, Vit C, Tumeric, Magnesium, Flaxseed, with Herbs ...Thyme, Horsetail, Nettle, Sage, has kept me stable without fractures. Everyone is unique but I can manage pain and functions with my own intervention. Exercise, clean diet, meditation and restorative rest are lifestyle strategies that aid also. “Knock on wood”.... I’m pleased with my protocol.
I'm so sorry to hear that you're getting no support at all, Sunseaandsand. What a devastating conversation that must have been. I really don't understand why they can't offer a safe scan and xrays, unless you're in the group that had to shield so they're extra concerned? Considering we're allowed to go to the hairdresser's and have been actively encouraged to go to restaurants, surely the health service can provide a safe environment for essential tests? Would going privately be an option for you, or would it cost too much? If you could afford it and there's a clinic near you, you might even consider having a REMS scan (uses ultrasound instead of xray), which is part of a 1/2 hour appointment with a consultant, who could then also give you a second opinion. If you're interested, here's the link (you may have seen it discussed on this forum before): osteoscanuk.com/. If you click on Clinics, you'll see they run them in a variety of different venues.
I don't know if you'd be a suitable candidate, but there is another treatment available, which they seem rather reluctant to prescribe. It actually helps build bone! It's called strontium ranelate, but isn't suitable for anyone with existing heart or kidney problems (including high blood pressure), so may not be appropriate. It might be worth asking the ROS nurses about it when you phone.
I am in the sheilding group and was told it would not be worth the risk to bring me into clinic.
I did question the receptionist a few weeks ago and she told me they had opened up the clinic now but were seeing less patients.
I was also told the consultants were not seeing patients who were considered to be stable.
I would not put myself on the list of stable patients having had the 2 new fractures and no further treatment.
I would like to think that having almost 6 months now to get things put in place, that the hospitals could ensure our saftey as you have pointed out eating out in restaurants is something that has been actively encouraged.
I do not know what the cost of going private for a REMS scan would be, it would be worth looking into although it sounds like it could be very expensive.
Strontium Ranelate is not an option gor me owing to having some problems to do with my heart last year.
That's a shame about strontium ranelate. The REMS scan with Osteoscan UK Ltd is currently advertised as costing £150, but it was last increased in September 2019 so I guess could go up again.
I hear you loud and clear as I suffer each day with Fibromyalgia and OP. The effects are difficult and exhausting. Although, your ability to make a joke out of your condition is uplifting. To make someone laugh is a gift. Of course I am referring to your comment on getting a new back from China. I live on Cape Cod and the summer has come to an end. I am looking forward to sun sea and sand as I continue my journey thru the struggle of these diseases. May you have relief and hopefully keep your spirits up.
How upsetting not to get your appointment after all you've been through, heart felt hugs.
You've had lots of thoughtful replies, do talk with ROS helpline nurses and perhaps your new GP will be of more help.
I feel very lucky that now I transfered from the local hospital to the mainland and a large teaching hospital I really have had a supportive and helpful service. It was a bit odd going for blood test /appointments/treatment from March onwards this year, but I did feel safe and very well looked after. I do feel that if I've had such good care and treatment I really don't see why something more cannot be done for you, even though you need to be extra careful about mixing with others and cannot attend appointment surely a better long term plan for you can be made??
Regarding your new back, I know you didn't get on with a brace, I didn't at first get on with the medi flex brace, but physio sent me back to orthotics I had a spinal corset made of cotton with mental struts which helped me become more mobile and made car travel etc more comfortable. After a year this needed replacing, the physio again suggested I go back to orthotics for a review in case they can think of something better, I now have a new model and it did feel like I had a new back as soon as I was put into it! It's a carboflex with a pump to inflate the pannels.
Let's hope you get some good advice and help soon so you can enjoy the sun sea and sand.
I am pleased to hear that you are continuing to receive such fantastic care.
They are looking after you really well and you must feel very confident to be in their hand's.
Yes I have had many thoughtful replies and your's is one of them.
Thank you.
I have been looking at the carboflex braces that you mention, I was not aware of this type of brace, and from your very positive review I think it would be worth a try.
I presume I would need to be seen, and or measured for one. I think it would be something worth getting in touch with the hospital about.
At the very least they could put an appointment in place for me.
I shall also speak to my gp about it next week when I have a phone appointment.
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