Can anyone help please? My dear wife is in constant pain day and night and reacts to all known painkillers. She has severe osteoporosis and following her latest two spontaneous fracturesin her lumbar spine she was 'put forward' for Teriparatide .
I appreciate what this drug is and of course, it isn't a pain killer but just not knowing whether or not she is going to be prescribed this, isn't helping.
My question then is for those of you already on Teriparatide, "How long did the qualifying process take? On paper, my wife qualifies for this drug but why does something of such importance to the patient take so long. We live in Surrey UK.
Thank you.
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Angelicspirit
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Hi Angelicspirit. I'm really sorry to hear about your wife. I don't know anything about Teriparatide I'm afraid but there are some really good experienced people on this site. Did you also know about the Royal Osteoporosis Society. The link is below. Good luck to your wife and you and I hope all will be well. No doubt the members will be here to help you too. x
Hi Springcross, Thank you for taking the time to reply, we really do appreciate your kind words. I should point out that Angelicspirit is in fact my wife and I was posting for her as she really is quite unwell with several chronic conditions. Thank you too for pointing to the ROS. We are members and do seek their help from time to time. Kind regards, Steve
I'm so sorry to hear about your wife's chronic conditions Steve, as if severe osteoporosis isn't enough, it really never rains does it, it's so unfair. Hoping that she gets the help she needs and wishing you both the very best. 🙏 xx
Hello there, I am very sorry to hear of your wife's situation. By the sound of it, she is in exactly the same position as I was. I too have severe osteoporosis and had spontaneous spinal fractures. When I suspected fractures, I referred myself to the consultant because I knew if I went through my GP, I would have to wait months. The consultant acted quickly and arranged xrays. I then had a phone consultation and he agreed that teriparitide should be prescribed. It does take a little longer to get because it comes from outside the NHS system and has to be sanctioned by the hospital's finance section. Once you get the green light by them, it is then sent to you at home by Lloyds Homecare every month. Also, a Lloyds specialist nurse visits you to instruct you how to administer the daily injection and how to store it and travel with it . I think it took about three and a half weeks from me phoning the consultant to starting the treatment. The nurse at the hospital had said if I wanted to have the bisphosphonate infusion instead, she could have got me in within a few days, but I am glad I waited for teriparitide as it is a superior treatment.
Although it doesn't help with pain relief it can help fractures to heal quicker.
I too am intolerant to many painkillers and struggle to cope with pain. Having a supportive husband helps and your wife is lucky in that respect. Please give her my best and tell her I have now been on teriparatide since October last year and tolerate it well after a few initial side effects like nausea which abated after a few weeks.
If your wife would like to know anything else I am happy to help if I can.
Hello,I am sorry to hear of your wife's situation.
I do sympathise as I have had 6 spontaneous fractures myself.
There has to be some form of pain relief that she can tolerate even if it only over the counter drug's.
We do need to get the pain under control to some degree or life becomes intolerable.
I had the 2 years course of Teraparatide and from my experience if on the NHS your case goes before a panel befre it can be passed for use on a patient.
Your wife could try phoning the consultants secretary to find out how long the process may take in your area.
The other option if you want to fast track the treatment and are in a position to do so financially would be to pay private.
The treatment costs £3.000 a year paying for this by going private would see your wife starting treatment almost immediately.
I hope you and your wife are aware of possible future prolems if starting the treatment.
The main side effects of Teraparatide are Bone pain and nausea, I had both of these side effects but continued with the treatment despite wanting to cease treatment.
Teraparatide like some other bone treatments MUST be followed on with another bone treatment, if this would not be possible for your wife then perhaps she should think very carefully about even having the treatment.
Against advise from my consultant I did not follow on with another treatment after stopping Teraparatide and suffered 2 further fractures.
(My reason for not taking up the offer of further treatment straight away was that I felt in need of a drug holiday after having 2 years of constant nausea)
On stopping the treatment my bone density when down very rapidly after 18 months I had lost all that I had gained and was also 10% lower than before I started treatment with Teraparatide.
It really is so important to follow on with another treatment.
I wish you and your wife the best of luck.
She is very fortunate to have such a carimg husband.
Hello Angelicspirit , I have recently started Teriparatide injections . I’m in the UK & it took 3 weeks from my consultation to receiving the medication delivery & nurse visit ( from Lloyds homecare) . I am 61 & have severe osteoporosis- otherwise healthy & came as a huge shock to me . I was worried about side effects but they have been minimal - bit of nausea & slight bone pain during first 10 days but nothing since then . I do the injections at night before bed . It’s now 2 months since I started & I already have less back pain . I hope your wife doesn’t have to wait too long to get the go ahead .
Dear 88km and wbiC and MollyStark and Sunseaandsand !Firstly may I send a sincere heartfelt thank you from Margaret and myself for all your kind and very valuable messages of support ❤️🙏.
The reason that I'm writing these posts is because Margaret also has Coronary artery spasm and Microvascular Dysfunction. Her whole body blood supply is constantly Interupted night and day resulting in amongst other things, reduced eyesight. ( When a main artery spasms, she starts to experience a heart attack even although her heart is clear of atherosclerosis and otherwise 'very healthy' as has her lifestyle been ) Margaret is 65 years old.
Getting back to Teriparatide, Margaret spoke to her consultant nearly 10 weeks ago. He asked her to contact his secretary in 6 weeks if she hadn't heard anything. This we did at 7 weeks and at 8 weeks. We were told that the Biologics Pharmacist had left and there was a delay of back cases.
After some fishing around we have by-passed the secretary and are now expecting a phone call from the Pharmacist on Tuesday ( fingers crossed )
Not even knowing if she has been approved for the drug is very hard and Margaret describes waking up each day and feeling as if her spine is just not supporting her body. The lack of pain relief is a huge problem. It stems from an allergic reaction to Diclofenac resulting in Stevens- Johnston Syndrome.
To date the last thing attempted was morphine patches which caused her main artery spasms to return despite her heart meds.
We are now seriously considering medical grade cannabis from The Sapphire Clinic in London. ( approved by the NHS and well worth a look )
To all of you...... May we ask, are you or have you been on Forsteo or one of the biosimilars that are now becoming available?
Thank you for the advice re Flexion. Margaret is already adhering to this but such a shame that we found out too late.
Thank you too regarding the advice re getting the drug privately. Beyond us
I'm afraid in our current circumstances
Also, thank you for the advice on the rebound effect, something that we are aware of and has to be addressed.
So much seemed to happen post menopause to Margaret. She was dismissed by cardiologists when she initially complained of chest pain ( AT REST) not on exertion, because she looked so healthy. We even changed GPs because of a ( female ) GP's disbelief. We eventually found her 'rare' condition on the Internet , which also led us to Prof. Juan Carlos Kaski at St George's London. He is a world leading expert on the condition and so, so likeable.
Margaret believes the lack of oxygenated blood to her bones may be, in her case, the reason for such a dramatic change in bone health. She has had at least 6 fracture but the spinal ones at L1 and L5 are the ones she finds so frightening.
We really do appreciate all you advice, comments and kind help.
Margaret sends her sincere thanks to you all for sharing your experiences.
We will come back next week (if) we have any news. Stay safe please.❤️👼🏻
I am so sorry to hear of your wife's other conditions, it must be very frightening for her. Forsteo is the name teriparitide is given in the UK and that's what I am prescribed. Your wife does seem to have waited longer than usual. I see someone else commented that it took about 3 weeks, which is similar to my own experience so I would be inclined to keep on at them and really push.
I have no effective pain relief and would be very interested in the medical grade cannabis.
Sadly, in my experience, most GPs are not very helpful when it comes to osteoporosis. I have gained knowledge from this forum and the ROS.
The support that you give your wife is truly wonderful Steve!
Please do let us know how you get on. Have a good weekend and the very best to both of you.
Thank you Molly, we will stay in touch. Happily, Margaret's GP is very supportive and we've asked for an appointment with her for next week, in case this waiting continues any longer. Do have a look at The sapphire clinic's website, they have clinic's in several places throughout the uk but from what I understand, your consultation is by Zoom or FaceTime or similar. You can either self refer or ask your GP to refer you. Their prices are all up front and actually seem to be quite reasonable.
I can’t add anything but sympathy to what has been suggested but for what it’s worth I’m sending you both my very best wishes and hope you get the help Margaret so desperately needs as soon as possibly.
Hi wbiC, Thank you so much. I've replied to everyone via 88km's last post
I spent a year and a half on this drug which is known as for Forteo in Canada,It was incredibly expensive I didn’t come out as much rebuilding as Reclast and Prolia which I also took. I am now on a drug called divinity which is similar to the drug you were talking about considerably less expensive but involves two injections per month as opposed to an injection every morning for for Forteo.
So far I’ve had great results but ultimately the best fastest bone building that I had was with Prolia,
But discontinuing the drug can be disastrous you’ll find a lot about it on this forum it took a year for me too get past the pain process I fractured five vertebrae and my sacrum,
I generally use the combination of Tramacet And an anti-inflammatory in the morning and that got me through the rough days
• in reply to
Sorry it’s not the divinity it’s “Evenity”speech to text is terrible sometimes
Hi Gary, Thank you for all this useful information, as you say the forum is a great educational tool. Margaret has had two 6 monthly injections of Prolia in the past and had to stop it due to a huge cyst that grew on the edge of her lower jaw, just forward of her ear. The cyst was the size of a hen's egg and when it did finally recede it left deep wound which we had to dress for several weeks. Prior to that and since she has never had any skin problems of that degree. We're so sorry to hear of your fractures too. Can we ask, were your fractures spontaneous? My wife spontaneously fractured her sacrum in 2018 and was initially told it was a trapped nerve and to keep walking! She was in agony every time she put her foot down. Steve
Hi thereI have started teriparatide and 6 weeks in - I did a little research and do my injections in the morning as there is some evidence for a better increase in Bone density- my main side effect is low blood pressure after the injection -it was awful the first week, very dizzy and mostly had to lie down but don’t give up ! 6 weeks in and now only lasts for a couple of hours - getting better as my body adjusts. Hoping will go completely soon - it did not have any effect on my pain - 4 new fractures are healing slowly - I use a hot water bottle and heat patches as can’t tolerate pain meds - also a tens machine ( if possible with other conditions) is fantastic you can buy them relatively cheaply
Thank you so much for sharing your experience as it really will help when I start. We posted yesterday that I have at last heard that I am getting Teriparatide within the next week or two. I have Interupted blood flow due to coronary and micro vascular spasms, so I will definitely be prepared for the the drop in blood pressure that you describe. Like you my spinal fractures don't seem to be healing and if anything feel more unstable. I have read that Teriparatide is sometimes prescribed 'off label' to help heal non Union fractures, so maybe if we give it time?🙏
Sorry! I was dictating to my husband who pressed reply before I had finished!I just wanted to acknowledge that I appreciate that matters are so much harder when you're dealing with more than one thing. I really do hope you can manage your pain. My next step is to approach The Sapphire Clinic group to see if I can ( pay for ) medical grade cannabis. I'm asking my GP to assist with a referral.
Stay safe and thank you. ❤️👼🏻 ( I will NOW let him press 'reply' 😂)
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