Has anyone experienced insomnia when taking Forteo? I started off sleeping better on it but now, 6 x weeks later, am experiencing worsening insomnia, 3 or 4 hours a night mostly but sometimes around the clock on no sleep. Has anyone else had this, if so, did anything help or did it wear off as you were on Forteo longer.
Thanks
Hi, I hope someone who has taken forteo can help. I'm about to start this treatment and hope I will do well on it. My very best to you.
Hi I took forteo for 18 months finished in may 2020 I had to wait a long time for a rheumatologist appointment but at last had a call from rheumatologist last week
I have been told i don’t have osteoporosis of spine now gone into osteopenia
I have 5 fractures of the spine and had kyphoplasty on them all
I didn’t really have any side effects from this drug only thing bones ached a bit more at first couple of months
Hope this helps and wish all the best on forteo
Thank you for your reply. I've had at least 3 spinal fractures so I'm really hoping this treatment works as each time, the pain gets worse. I've been taking it for nearly 3 weeks and only minor side effects at the moment which I can cope with. I'm on a 24 month course at which time I'll have a dexa. I'd really like one sooner than that, it would help me psychologically to know if I'd made gains. I hope you continue to have a good maintenance of bone density, all the best.
Hello cmoc
I had always put the wake full nights down to pain when I was on Forteo, however I have been sleeping slightly better since ending the 2 year course. I still wake but after about 30-45mins can go back to sleep. I wouldn't say I had insomnia with it.
This is just an idea - When I first started the nurse said most people find it easier to have the injections at night . So suggested slowly move the time round to the later evening ( to move from 4.30pm to my bedtime). Being a weed I knew I would start to worry about the injection so would spoil my evening, so I slowly moved the time of my injection to between 7-8am this worked better for me, I did get used to doing the injections after about 6 months (I was a real weed about it I know the needle is very small but had childhood bad memories to come to terms with!).
What time do you do your injection? I wouldn't suggest you altered it if it's at night without further ideas from others etc. Unless you are at the end of the line with lack of sleep, I was told I could alter it by an hour each day until I got to the idea time for me, but then to stick to that time. Have you tried the ROS helpline wonder if they have heard from others or if they can suggest something.
I hope someone is able to help you soon, lack of sleep is very disabling.
Best Wishes
Posy White
Thanks for the reply. I take the injection in the morning. The insomnia has been getting worse this last week. I have been on the injection for nearly 2 x months. I have to stick with it as my spine isn't good (3 x fractures) so will just have to keep going and hope its a side effect that may wear off!
Did you make gains after the course of Forteo? What are you taking now to hold on to the gains?
Best Wishes
Christine
Hello again,
Sorry I coudn't help, at least I did send you on a wild idea and have you changing to the morning!
I don't have a good story – I was on the medication Prolia (Denosumab) for five years (injections every 6 months) during that time moved out of London and the management changed to the small local hospital. The results of having had Prolia where good, I moved from the Osteoporosis range to the Osteopenia range when checked in June 2017, however the hospital over looked the recommendations of the manufactures, not to just stop Prolia, but to transfer to another medication as there is risk of rebound fractures. In October 2017 I woke in the night in dreadful pain it took until January 2018 when x rays and a scan showed I had 8-fractured vertebra.
I started Frosteo later that year and transferred to a larger teaching hospital. The dexta scans as such cannot be compared as they where done on different machines. The June 2017 shows most areas in the mid Osteopenia range with one in the higher OP area. The next scan was in March 2019 at the new hospital and was 9 months after starting Frosteo this and x rays showed the reason spinal surgery is out of the question, I no longer have ‘full bone structure’ of 6 vertebra, spine -3.5, hips -2.6 /-2.8.
I had another 2 months after finishing Forsteo showing spine -3.4, hips -2.7 /-2.7 This in my situation is a good result. It may be that yours will be more of an improvement.
You asked what I’m taking now, I know the Consultant would have liked me to go back on to Prolia but when this was discussed in March this year I was to worried to do so. Mainly I worried if the injection was late for any reason (Covid), the idea of more rebound fractures was too much! So I ‘m on a holding course of 2 yearly infusions of Zoledronic acid. Then I will probably go back to Prolia as apart from one or two minor issues when I first started it did improve my bone density which I have no chance any longer of doing this by exercise and for me diet isn’t really an option.
Are you going to be able to get back to exercise once the fractures have healed? I feel I'm not a good example as many people do do far better than me, I've just been very lucky!
Best Wishes
Posy White
Sorry I hadn't seen this. No I cant get back to exercise, I seem to have been stuck in the recliner chair for months now, and every time I try to walk up and down the room I end up with my back hurting more the next day so am back in the chair. Cant seem to move forward. I have M.E as well so never did much before.
Sorry to hear your story, for some of us its not been easy. Thats a shame after taking the forteo to not make much gain, especially if you get side effects.
Hope things are better for you now. Can you walk?
Hello again cmoc,
Oh, what a tricky situation to have the ME does make it so hard to exercise and as soon as you do I can understand the slightest bit too much and the ME side of things become 'distressed'. I have seen chair exercises as anyone been able to advise you on those? - There are some on the ROS website. I found it very hard to know where to start everything hurt with the slightest movement, so to go overnight from doing Yoga, hillwalking and being able to run a mile in 8 minutes to not able to even lift a full cup to drink was a steep learning curve!
I think the key to it is start with something you can do and work on doing it more regular and for slightly longer. Make a very small step and do it every day for a week before any increases E.g. I could lift one arm, with bent elbow to shoulder height, whilst I held the other arm close to my body to help hold myself up (at that stage I couldn't hold myself upright I slide to one side) I started to lift first one arm, hold to the count of one thousand and two, then the other arm I did it 5 times. At first I made up 3-4 little daily exercises. After the week if I could do it and added a bit more and if I could quite do it I just kept going at the same rate. I hope perhaps you might be able to do something in a small step?
You asked if things are better and can I walk - In one sense I'm so much better and I now can do lots, I can get around the house now it is adapted with walking sticks and outside I can walk a few meters, to the car etc. using smart crutches. However I have had to except I am and will be disabled and to travel out side any distance wheelchair is really the best option. Trying to stay positive is just as hard as the exercises - but worth it!
Good luck in finding something small to start on.
Best Wishes
Posy White
Thankyou. It sounds like you have been through a lot. I agree, staying positive is difficult, especially through the night when I cant sleep!
Well done for doing as much as you can. I keep going backwards when I try to walk a bit more up and down the room, my spine is a mess.
Best wishes
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