Forsteo ending, Zoledronic acid is next.

[Angelicspirit]

Dear friends, Once again I’m going to ask some questions on behalf of my dear wife. If you can share your experiences or give advice, we would be most grateful.

Our first question is, if you have completed a course of Teriparatide injections, how long did you wait before your next course of treatment?In my wife’s case, Zoledronic acid infusion seems to be her only option, due to allergic reactions and real difficulty in swallowing pills

Were you given advice on how long (if at all ) to wait?

Our second question is, have any of you experienced the onset of jaw pain or loose teeth as your osteoporosis has progressed ?

My wife’s autoimmune involvement has caused excessively dry mouth for years now but is becoming more and more problematic and has no doubt contributed to what is now a sudden change in her oral health. Her teeth have become decalcified and 3 molar extraction s are now planned prior to starting infusions.

Have any of you had firm advice on what can or cannot be done once on Zoledronic acid ?

Any experiences re implants, partial dentures etc ?

Finally ( sorry!) I’ve been trying to look back a few weeks to a conversation on pillows. I should have paid more attention at the time but with constant jaw pain a soft but supportive pillow has become a must, especially with kyphosis and scoliosis. Obviously this is an individual matter but very often there is some truth emerging when a particular brand keeps being repeated and we have a collection of ‘hardly used ‘ pillows that could start a museum!

Thank you for reading this far and if you can point us in the right direction on these matters, then your thoughts would be very welcome

Best wishes for a kinder night tonight,

Steve & Margaret

[Mistydawn]

wow! I’m so sorry to hear about the jaw issues! Some drugs for osteoporosis are known to cause jaw issues (osteonecrosis of the jaw) as a side effect. I have not taken Teriparatide but have discussed it with my consultant. I was advised that after a course of treatment with Teriparatide I would have to immediately be treated with zolendronic acid otherwise all the good done by the Teriparatide will be undone.

However in your wife’s case with the jaw issues, I would suggest further advice before taking the zolendronic acid to see if there is an alternative. Bisphosphonates, of which zolendronic acid is one, are the ones that can cause osteonecrosis of the jaw! Maybe speak with a specialist nurse at the NOS?

Wishing you both all the best. Take care

[Angelicspirit in reply to Mistydawn]

Hi Mistydawn and thank you. Margaret is seeing one of her Rheumatologists next week and we will be asking lots of questions. We’re very interested in the fact you say the next therapy should start immediately. A different Rheumatologist, has previously told Margaret that he’s not too concerned about waiting a while because she is taking HRT. We do have a little time on our side as Margaret has another 6 weeks to go on Forsteo , but there does seem to be varying views about when follow on treatment should start.

By the way Margaret took your advice and ‘phoned the ROS helpline ( not for the first time )

As always, she got some useful help but I haven’t had a chance to hear about the full conversation yet.

Thank you again for your kind attention.

[Mavary]

Hi! I had Terraparatide for two years. I had about a month between taking that and going onto Denosumab with the result I had four more spinal fractures. So chase them up if they keep your wife waiting too long.

I’ve not had any problems with my jaw or teeth. Apart from the usual had some out years ago and fillings.

The only thing I can think of when on bone meds is to get regular dental treatment. If she’s already having jaw problems I wouldn’t even think of having dental I’m plants. My gums and teeth are pretty strong but because I have seven spinal fractures I wouldn't even think about implants.

Regarding pillows. I’ve got quite a Kyphos which obviously has gotten worse since I first had my fractures. I use two softish pillows on my bed. I don’t lie on my back anyway. It’s not comfortable. I usually lie on my right side. Occasionally my left.

[Angelicspirit in reply to Mavary]

Hi Mavary and thank you for your reply and advice. Interestingly, Margaret did have Denosumab a few years ago but had to stop it due to a subcutaneous cyst that developed on the edge of her lower jaw. The cyst was the size of a small hen’s egg. It took weeks of dressing and she literally had a hole in the side of her jaw. Endo’ said it could only be down to the drug.

Margaret has had 14 spontaneous fractures since 2018, so the pain and discomfort in her jaw is a real worry as is knowing when is best to start follow on treatment. She spoke to ROS today and I believe the just of what she was being advised was to get as much information as possible and then make her decision on whether to have the infusion . She still has 6 weeks on Forsteo so we must ‘speak ‘ to as many people as we can. Your real life experience is so valuable.

Thank you again.

[Mavary in reply to Angelicspirit]

I’m so sorry to hear that. She must have awful pain. The trouble is nothing really helps. I think I must be lucky that I’m ok on Denosumab. As regards the fractures although I know my Kyphos has got quite a bit worse. I know there is controversy about all the bone meds but they are essential to most of us. I hope they can sort out something for her soon.

[Pte82]

Angelicspirit, please research the restorative effects geranylgeraniol (GGOH) may offer when being treated with zolendronic acid. Always consult with your health care professional before using any supplement

[Nuthatch]

I also had 2 years on teriparatide and had to chase the bone clinic who just forgot about me… I went onto Raloxifene without any break at all, but if your wife is already on HRT I don’t think she could take that. Teriparatide is not associated with osteonecrosis of the jaw and has, I think, been used to treat it. Raloxifene is ok except it makes me feel a bit like I have a UTI all the time, so I need to talk to the specialist nurse again. Strontium is the only other alternative to bisphosphonates that I’m aware of and I doubt I’d be allowed that as I have high BP. I hope your wife gets a satisfactory treatment quickly, I was told to try not to have any gap at all and I was offered zoledronic acid infusion or denosumab as a one off which I thought was a bit odd.

[MayGodBlessYou]

i'm moved by your care and devotion to Margaret in this heartbreaking situation, love to you both and i appreciate you telling of what is happening x o x

[Angelicspirit in reply to MayGodBlessYou]

Dear MayGodBlessYou, Thank you for your very kind words. I apologise for the delay in replying to you. We have just moved from Surrey to The New Forest area as increasingly, Margaret’s conditions are being cared for by Southampton General Hospital. We are due to find out whether 2 years of Forsteo injections have helped at all with a Dexa scan due next Monday. She took her last Forsteo a week ago and Zoledronic acid seems to be the only ( possible ) option left open to her. Margaret is now facing the difficult decision as to whether or not to have 2 extractions prior to the infusion, which is still not a certainty due to her heart/vascular condition. Her dental surgeon says the teeth could last longer but would have to be removed if she has the infusion.

Thank you again and we’ll try and stay in touch.

🙏🏻❤️❤️XX