I have been on Teriparatide forv6 months now. I inject before bed as I get some mild nausea.
My problem now is it seems to be impacting my appetite. After 6 months ive lost a stone. My appetite just seems to switch off while I am eating, its very weird. I am eating less and less but I just cant face food sometimes. So far it hasn’t worried me as I needed to lose a bit but I am 5.9 and now weigh under 10 stone. So still at lower end of healthy but if I lose much more ill be underweight.
I want to complete the course as it is such a good treatment but am concerned about my appetite issues. I have no other side effects.
Well I unfortunately don’t have appetite issues. I take my calcium from diet only. Tablets of calcium were discontinued by Dr when I started teriparatide. I’m into 9th month and managing ok. It’s my body shape that gives me most issues. Terrible squashed gut area when I am on my feet for about an hour. But that’s 2vyears since my fractures so I guess this is me now
I’ve been on Teriparatide for nearly one month. I too, inject just before bed before I was initially feeling extremely tired and experiencing nausea.
I eat a lot of protein to support the anabolic bone building property of the drug. I get my calcium from diet. I’m also losing weight because of all the protein i eat, +60g for a weight of 50kg. The huge amount of protein makes me very full and my kcals are less than 900 a day, hence the weight loss. I sometimes have a clear whey protein drink for when i can’t face anymore food and I haven’t met my protein target. It provides 20g of protein.
I’m on Teriparatide for a total of 18-24 months. My osteoporosis is due to steroid damage and i’m determined to reverse it. I’m sure the weight loss will eventually taper off.
I am trying to get my calcium from diet but its difficult when you don’t feel like eating! I have Calcium Citrate tablets as back up - i have heart issues so cant take the prescribed calcium carbonate!
I do struggle with protein too, especially being vegetarian but try and go for high protein options.
I do t know what caused my osteoporosis as there is no history of it in my family, but as a child I literally just didn’t eat and was anorexic really until about 13, and ive been told that may be the reason. When i was younger I cracked my ribs 4 times a bit too easily but no one twigged! It took a serious accident two years ago for it to be subsequently diagnosed!
Thank you for your advice, I have been advised only 18 months on Teriparatide (maybe budgets in my area) so im a third in, but hopefully my weight will stabilise.
My cardiac consultant remarked on my weight loss, so I explained about the medication as don’t want them to push the panic button !!!
I only have funding for 18 months. I have a private rheum as well, so we will check at the end of the nhs funding, to see if I would benefit from continuing. If yes, I will carry on to 24 months.
An excellent source of calcium and protein is parmigiano - the more aged versions. If you aren’t lactose intolerant, give it a go. I eat tonnes of the stuff and have excellent levels. I was on Adcal at one point, but it didn’t stop me from getting very low DEXA T-scores and I gave it up.
Do you have a baseline DEXA? My rheum recommended repeating mine at the end of 12 months, to see the effect of teriparatide. He will also start me on Denosumab at the end of 12 months (taken concurrently with teriparatide). This is supposed to give the best outcome. Perhaps you could ask yours about this and whether it is an option for you.
I am under a gastroenterologist - the bones are a medication side effect! I see him next week and he is bound to pick up on my weight loss, as did my rheum. Not many people have our problem!
Wow I actually have some in the fridge!! I also have figs and almonds and milk and oranges daily as per the ROS diet sheets!
I have also been advised that Denosumab will be my follow on treatment as I cant tolerate the Bisphosphonates.
I have a baseline DEXA and I also paid for a REMS scan and will have both again next year so will be a good comparison.
I don’t know where you are based but I found the clinic with Nick Birch, which included the REMS scan, really beneficial as I havnt been able to see a rheumatologist at NHS. I have a good specialist nurse but it took a year to get to see her! Which apparently is a fast track service.. normally it takes 3-5 years but I was deemed high risk due to spinal fractures and my clinical history, as my DEXA scores wernt horrendous.
I have found the support on here and by ROS nurses invaluable as i do a high risk sport, and when i initially got the diagnosis I thought my world had ended!
I don’t think I will get Denosumab alongside Teriparatide but as a follow on.
So you have no NHS rheumatologist. If I’m not being too inquisitive, did you get your teriparatide from your specialist nurse?
I do have an NHS rheum. He applied for funding for me, as I did not qualify under the standard criteria. I sustained a comminuted sacral fracture due to the medication I was on. Fortunately, the funding was approved. I get teriparatide for 18 months and then he starts me on Denosumab.
I also have another rheum (private). His strategy is different and I will actually put on more bone with his approach.
What I would recommend is: get an NHS rheum (you have a year at least). If it is feasible, consult a private one and check strategy at the 12 month point. If you are able to, compare treatment options and go for the best one for you.
I have to improve from a T-score of < -3.0 and need to build as much bone as possible (I should not have osteoporosis in the first place). Do some research as well and check teriparatide activity on osteoclasts at 12 months (it activates them). There seems to be a huge demand for MSK services in my area (Southern England) and it really pays to go in informed about options, when you meet the consultant.
It’s great that the ROS nurses have been a great support. I hope you have managed to continue your sport. I go to the gym most days, but am too frightened to do anything other than walk on the treadmill. The physio and rheum have not given me consistent advice, so I am not doing weights, running etc. Better safe than sorry! All the best.
Re. nutrition - I eat a lot of nuts and seeds in Greek yoghurt and cottage cheese. It is tasty, easy, light to eat and very goodfor bone nutrition. Might that help you?
I did ask to see a Rheumatologist but was turned down! My GP is hopeless. I am only diagnosed as my shoulder surgeon referred me due to ‘poor bone stock’ which he noted during surgery.
I am in SE Kent and in my area it all seems to be Nurse led. I did see Nick Birch privately and he was very informative and gave me some tips and agreed with my treatment plan so far.
My T scores were not horrendous- just in Osteoporosis range in my spine and Osteopenia in my hip. It is the fractures and anecdotal evidence from my surgeon that has led to my Teriparatide treatment.
I ride horses, competitively prior to my bad accident 2 years ago, I am just getting back to it now but tbh my shoulder is still more limiting than the Osteoporosis! I have invested in an air jackets though!!
Thank you so much for your advice and good luck on your journey xx
It’s really great to see such a thoughtful conversation about these important topics, we just wanted to drop in with some links to more information for those wanting to learn more:
If anyone notices new or ongoing loss of appetite, we’d also warmly encourage you to mention this to your GP or healthcare professional so they can check in with you
We hope everyone can continue sharing their experiences with our wonderful community, and what has helped them along the way
Our journey’s have been so similar. I saw a spinal surgeon (privately) as well, but fortunately no surgery was needed for my sacral fracture. I am in Surrey and the consultants I have encountered, have all been of the “this is my field and I only treat this” variety. My spinal surgeon, brilliant as he was, would not refer me for teriparatide, that was the rheumatologist’s job. My rheumatologist would not really advise on exercises, that was the physio’s job and so it went. I don’t know about you, but I ended up seeing so many people. You were so lucky that your surgeon stepped outside his field.
I hope you are doing better with your weight. My rheumatologist recommended sweet potato of all things. I gave it a go - boiled, mashed with butter, salt and pepper and it was very nice especially with some Belona almonds (Marks).
I hope you continue to ride and you get great DEXA scores at the end of your treatment. Take care xx
Thats interesting about Sweet Potato - i make a lot of sweet potato soups so good to know!
I feel your frustration and yes I am so lucky and grateful for my surgeons intervention.
When i last saw him I thanked him and he called it an epidemic! but its such a little known epidemic.
I know, why don’t you update in 13 months time when you have finished your teriparatide
I am three months behind you treatment wise (I started in mid August) and I will let you know how my first year Dexa went and where I am with this (I think of it as my Bone Project!) For some reason my consultant doesn’t want to use P1NP to track progress, although we have a baseline value. Fingers crossed you go from strength to strength, and catch when you finish? xx
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but its such a little known epidemic.