At last some good news! The Biologics Pharmacist 'phoned Margaret this morning and confirmed that she is to receive Teriparatide for an initial 18 months. We're now waiting for 'the nurse' to contact us and arrange for delivery.
Margaret and I are very appreciative of all the valuable and kind advice you have shared with us. Your collective support has really helped her through this long, bank holiday weekend. Everything you've shared, she has taken on board and will be so helpful on her journey.
Thank you!
Kind regards, Margaret & Steve. ❤️👼🏻
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Angelicspirit
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That’s such good news, I’m so pleased for you both, at least now you will feel you are getting somewhere, you must both be delighted. Keep us posted as to how things go. 😊
That's excellent news Margaret and Steve. I hope she does well on it. Hopefully they will extend it to 24 months which is the usual course now. Please do keep in touch and let us know how things are going.
I only just saw your first post about teriparatide and was about to reply, when I read the good news that Margaret is to receive it. First, I am so sorry to hear about Margaret's situation and I do wish her well. I was diagnosed with osteoporosis 22 years ago, since when I have been prescribed a variety of treatments. I have just completed a 2 year course of teriparatide (Forsteo) injections which was followed up with a recent zoledronate infusion. Briefly, the background is that I had 6 denosumab (prolia) injections over a 3 year period 2015-2017 administered in my local hospital's rheumatology department . Results were deceptively good so the doctors recommended a drug holiday which resulted in catastrophic plummeting bone density & 8 spontaneous vertebral rebound fractures within 3 months August - November 2018 . Prior to this I had never suffered any fragility fractures. I also live in Surrey, but within a Greater London borough & was referred to a specialist osteoporosis clinic at a large teaching hospital. The consultant there referred my case to a special panel for consideration for Forsteo treatment and her application on my behalf was successful. It took about 4 months. Then, as others have said, I received home deliveries from Lloyds HomeCare and after the first pen device was delivered, a nurse called and showed me how to inject myself. I had been incredibly nervous about this but the needles are small, I barely noticed the pinprick and soon got used to daily injections. I used to set an alarm on my phone to remind me. Forsteo must be stored in a fridge at between 2C & 8C. Before the pandemic, I used to travel frequently to visit family working abroad and was supplied with a small insulated travel bag with icepacks. Everyone is different and terriparatide did not relieve pain for me, although I have heard that it does for other patients . Initially, I had no side effects. However, after about a year, some pain in my lower right side turned out to be an 8mm kidney stone, seen on an ultrasound scan. It's likely that I hadn't been drinking enough fluids as I managed to flush the stone out by drinking lots of water and parsley tea. I also reduced the level of calcium supplements. Another side effect, but I stress in my case and everyone's experience is different, was that blood tests showed low Vitamin D levels and Forsteo can deplete Vitamin D. So on the consultant's advice, I increased my daily Vitamin D dose and soon achieved a better level. Anyway, I'm delighted to hear that you'll soon be commencing treatment and hope that all goes well.
Hi 8fractures!Thank you so much for taking your valuable time to reply to Margaret and also for sharing this very useful information. We've read your post several times to absorb your experiences. We're astounded at how many fractures you and indeed others writing on here, have had to endure.
Margaret was turned down in 2019 for Forsteo by the Rheumatology dept at a South London large teaching hospital. She was told that she was too young and hadn't had enough fractures. Now here we are less than 2 years later with at least two more total (flat down) collapses of L1 and L5 that occurred only 12 months after being rejected. ( She also has several Thorasic insufficiency fractures and pubic and sacral fractures too )
As her husband, ( and I'm not a violent man) I would like to bang some heads together and ask "what on earth were you thinking? " and "what happened to prevention is better than cure?" I should add on her behalf, that what they sent her away with was, no treatment whatsoever.
May we ask, in view of your experiences, should Margaret continue with her multivitamins while on Teriparatide? She currently takes Autoimmune Institute's Advanced Osteo Complex in addition to a very high dose of Vit D prescribed by her Endricinologist . Also, Margaret describes her spine as feeling as if it is going to give way and she has difficulty in supporting her upper body. She also tells me that much of her pain comes from her ribs being in contact with her hips. Do you also experience this? If so, did Teriparatide help in any way with these symptoms?
Margaret has an appointment with her GP to discuss medical grade cannabis from The Sapphire Clinic, to assist with pain relief.
Once again, thank you for your post, we really do appreciate it.
Hello again Steve & Margaret - it makes me really angry to read about how dismissively Margaret was treated in the past. It's unforgivable and I do so understand your frustration. Our much vaunted NHS is generally way behind some other countries regarding preventative medicine. In my case, I truly believe that I was not given a relay medication following denosumab purely on cost grounds. The drug manufacturer itself in its product information at the time recommended a follow-up medication. Then, after this failure, having reported the first fracture at L1 to the hospital rheumatology dept, (at that stage I didn't know enough to connect it to the denosumab discontinuation) they did nothing , no-one warned me of the high risk of additional fractures and so within 3 months L1 had virtually collapsed and there were additional fractures at L3, L4, T7, T8, T9, T11 & T12. The spinal surgeon I consulted said that he had never seen "such aggressive osteoporosis". I had two vertebroplasty procedures to repair the worst fractures and, according to my physio, this may contribute to some of the daily back pain I now experience, as the cement filled vertebrae are obviously not as flexible and may cause muscle strain. Now, in answer to your specific questions, and with the qualification that I am not medically qualified and can only relate my own experiences:
1. Vitamins & supplements. I find it extremely difficult to get any sense out of doctors so rely on my own research. For example, the GP prescribed a large 1,000mg calcium tablet whereas I've read in several sources that the body can only absorb around 400-500 mg at any one time so a lot of the supplement is useless. Instead I take a very expensive amorphic calcium supplement which I believe is better absorbed, having reduced my daily intake to 400 mg following the kidney stone last year. And recent blood results show my level to be right in the middle of the normal range. Similarly Vitamin D3. In my case, I was taking 1000 iu daily but levels were insufficient. To cut a long story short I currently take 6,000 iu daily to achieve a level of 99 which is good. However, I'm still waiting for the consultant to get back to me as to whether, now that I've completed the Forsteo course, I should reduce this amount. I also take Vitamin K2 which claims to help direct calcium to the bones, Boron, supposedly good for bone health, and other supplements which have nothing to do with osteoporosis, Vitamin C , Tumeric (for pain) plant sterols (cholesterol) and Visionace for eye health. I took these throughout the 2 years on Forsteo.
2. Pain. I occasionally get the feeling that my spine isn't well supported but the pain mainly comes from my back, not from ribs/hips. Very occasionally I wear a back support which helps but don't want to get my muscles too used to it. The turmeric helps a bit. I try to avoid taking painkillers routinely but if more walking/standing than usual is likely, although I try to avoid such situations, I do resort to co-codamol as paracetamol isn't strong enough. Teriparatide didn't help at all with pain in my case, but others have benefited. I've heard good things about medical cannabis and hope that it works out for Margaret.
In conclusion, from someone who, as previously mentioned, had no underlying health issues (apart from osteoporosis), due to the catastrophic fractures caused by denosumab , I became someone classified by the NHS as "clinically extremely vulnerable" to coronavirus because of reduced lung capacity, and therefore recommended to shield etc throughout the pandemic...
All the best to you both and I do hope that things improve for you Margaret very soon. I'm happy to answer anything else regarding teriparatide to the best of my knowledge.
Hi 8fractures,Our hearts really do feel for all you have experienced and all you are dealing with each day. Osteoporosis is a very unkind, life changing and painful condition to live with. Of course you are so right to point out that we're all individuals but by sharing your experiences, your 'journey' with this disease is very helpful to us and, we're sure, to anyone else reading your post. Margaret has no family to turn to or share her thoughts and worries with. Yes, we have three adult sons with families of their own, but we soon learn don't we, who is really interested when there is that inconvenient and unwelcome interruption of illness in a family. So thank you again for having this conversation with Margaret. It really does help.
Today Margaret had a 'phone consultation with a Rheumatologist from a distant hospital. This is not the department or hospital dealing with her osteoporosis but one that goes back 2 or 3 years in Margaret's history, for assistance with Lupus. The conversation got around to Margaret mentioning that she was soon expecting to be starting Teriparatide . To our amazement, this Rheumatologist told Margaret that there is no need to worry about rebound fractures after a course of Forsteo. Within a very short number of weeks we have had conflicting views from doctors from different parts of the country but we believe the real experts are the real life, up to date, experiences of the men and ladies on this forum.
Thank you very much for taking the time and trouble to answer our specific questions.
If you don't mind, may we stay in touch to hear how you are getting on with the Zoledronic infusions?
Thank you for your kind comments. I hope that sharing my experiences might help others, especially with regard to the dangers of denosumab cessation. I should add that everyone should check with medical practitioners re taking supplements as for example, vitamin K2 can reverse the effect of blood-thinning drugs like warfarin. Too much boron can also be harmful. I joined a Facebook support group re Forsteo (Forteo) facebook.com/groups/7051202... but it can be very off-putting to read about others' side-effects. I bear in mind that many of the group suffer from a variety of health conditions so what they complain about may have nothing to do with teriparatide. As many of the members are in the US, there are lots of discussions, irrelevant to us, regarding funding. But there are also useful threads about travelling with this medication and keeping it at the correct temperature. I'm happy to stay in touch. If this was Facebook I could send you a private message with contact details, but am reluctant to put a phone number or email address on a public forum . All the best to you both.
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Query re Teriparatide (Forsteo)
Teriparatide as a treatment for osteoporosis
