Hello, I will shortly be starting treatment with Teriparatide. Is anyone who suffers with Chronic Fatigue had, or is on any treatment for Osteoporosis? I am concerned about how I will cope with this treatment as coping with my current Fatigue can be quite difficult. Grateful for any advise re coping strategies. Thanks
Hi I suffer from ME and have done for approx 30 years. Over time I learnt how to pace myself and was able to hold down a very stressful full time job. Luckily the job was flexible enough to be able to manage my ME. What I did find was I became more sensitive to taking medication and developed food intolerances. Again over time I adapted and was able to manage. When I was first diagnosed with osteopororosis and then went on to have fractures this did affect the ME. It was difficult to tell at times whether it was the ME or the osteoporosis making me overly tired. I was not able to tolerate alondronic acid as this made all my joint swell. I managed for several years with any osteoporosis treatments before my osteoporosis became so severe and I was experiencing fractures with no falls that I realised I must act if I wanted to remain independant. I have had a course of Romozosumab and now having yearly zolendronic infusions. So far this does not appear to have made the ME any worse. I am no longer working, having retired so probably this does help. What I did find with the ME was that personal stress impacted more on me than work related stress. With this in mind I do anything I can to keep calm and relaxed such as guided meditation which also seems to help me with pain. I do a gentle online exercise class once a week aimed at help with bone health and core strength. The social aspect of this group helps me as much as the exercise part. Of course this is just my story and what has helped me and everyone is different. There have been times when medical professionals have got quite cross with me when I have refused certain treatments and refused opiates for pain relief. I know my body and over time have been proven to be right. So my advice is you know your body best, advocate for yourself and take time to research through the right sources such as ROS. I would avoid getting advice from osteoporosis groups such as facebook because they appear to be all doom and gloom and freak you out with a load of garbage. Wishing you all the best with your treatment and remember to be kind to yourself x
I have chronic neuro fatigue, I went with infusions of alondronic acid as my choice of medication when I saw the rheumatologist. I haven’t actually started it as I need my wisdom teeth out first
This is because of all the other medications I take every day don’t work with the tablets schedule. Pacing is how I manage my fatigue as well.
Hello Hopeful,
I also have M.E /chronic fatigue and was thinking of asking for Teriparatide, instead of the bone resorption medication i have been offered. I have resisted the medication for years because of M.E and side effects and instead have worked on nutrition and taken supplements. Now I have been diagnosed with 4 vertebral compression fractures and my risk score on 10 years is 27%. i am a 62 yr old women.
I see that your post dates from April.
Have you started your Teriparatide treatment? Was it difficult to obtain it? How are you coping?
Best Wishes
Hi 28Harvey28,
I have just discovered this forum.
Having had ME for 26 years, I am very worried about side effects of medication but of course also about my 4 (so far) compression spinal fractures.
Paracetamol usually turns me into a zombie so I am very worried and stressed about any new medication and also the associated long term side effects of medication and the impact after stopping the drugs. At the moment I see aTCM doctor and a homeopath to help with pain and energy levels as well as support for M.E.
Right now my head is about to explode with everything I read and having to give my answer to the osteoporosis nurse tomorrow about medication. She suggested Romosozumab, or Denosumab and Zoledronate.
I have read research about anabolic medication to be taken before antiresorptive meds for patients multiple fractures and a high risk FRAX of 30%. But the osteoporosis nurse didn’t seem too keen on this when I last spoke to her.
It’s great to hear that you seem to be coping well with the treatment.
Did you feel that whoever prescribed this medication was aware of potential impact of side effects because of your M.E. and were you able to report your concerns or feedback on your symptoms on a regular basis? I am worried that I would be told to get on with it and that M.E. is not generally well audited with patients.
Many Thanks,
Kind Regards
Hi That’s a difficult one to answer because we all are so different and what might suit one person might not suit another. For me I had managed my ME for a long time and over the years had learnt what my limits are and when I needed to ease up, rather than try to push through and pay then price for it. I soon learnt that personal stress affected my ME a lot more than work related stress which I was subjected to every day as a child protection social worker. When I started to fracture and became more and more unable to do things for myself I reverted back to the pacing of my day the same as I had done with the ME but this time because of the pain of being unable to stand/sit or lie for long. I saw a Consultant to discuss what osteoporosis medication was most suitable for me. Of course I would have preferred not to have taken anything but by that stage I had left it so long before I had done anything to prevent further deterioration by not taking any treatments that was then in the severe osteoporosis category and at high risk of further fractures. IWhen it came to deciding what treatment I needed I decided that I did not want to hold my DEXA levels at the rate they were at at that stage by taking a bisophinate but wanted improvement and to prevent further fractures which the anabolic seemed to be better at. My treatment plan is for one year of Romozosumab (anabolic) followed by 3 years of Zolendronic infusions (bisophinate). Hopefully, at the end of the 3 years I will have a DEXA scan again to determine whether I am able to take a pause in treatment before I return for the next round. My Consultant was fully aware of my health history and open to discussion about what was best for me. He was also aware of what steps I have taken over the years to improve and will continue to do. For example, I manage my pain via alternative means such as guided meditation, gentle exercise via online group which helps to stengthen muscles, improve balance, build bone strength, stamina, calms and relaxes and changing mindset through positive thinking. I also attend a Chronic pain coaching class (similar to NHS retrain the brain) this works to help manage pain without the need for addictive potent medication, cope with feelings associated with living with pain and disability such as the feelings of loss etc. along with food/nutrition. I think through all of this I have learnt that I am the only one who knows my body best and what I can and cannot do and what I cannot tolerate. I have also become much more able to advocate for myself. In my professional career I was very good at advocating and protecting others, but useless in doing this for myself. If you go down the Zolendronate infusion route remember that this is a yearly infusion so once it’s done it’s done. I was a little bit afraid of this but was told by the Consultant that the body takes what it needs and the rest leaves the body fairly soon, usually about 6 weeks so if you do get side effects this might be for how long. With the anabolic ones which you usually start off with first they are either daily injection or monthly so guess this might be out of your system sooner, but only a guess. I had side effects on both but mainly bone pain. I treated this as a sign that the treatment was working. I do have contact with the Rheumatology Department in between my Consultant visits and can phone them at any time for advice. I have done this when I felt more tired than usual after the infusion and they organised blood tests to make sure the levels were ok. This passed after about 6 weeks so probably once again my body was finding it difficult to adjust to something new being put into it. On a positive I had a DEXA scan and also went privately for a REmS scan after I completed the anabolic treatments. This showed significant improvement not only in bone density but also in bone quality. This might not all be down to the treatment but could also be finally getting my calcium, Vit D at the correct levels and also the online exercise group I attend. As you are still unsure and feeling under pressure it might be worth you talking this through with the nurse and perhaps delaying. You really need to go into any OP treatment as positively as you can. Also the ROS nurses are brilliant and I have phoned them several times for advice and reassurance. Wishing you all the best with whatever you decide to do and remember there are so many people in this community that are more than happy to support you through your journey x
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Hi 28Harvey28,
Thank you so much for your kind response.
It’'s good to know that you are able to cope as well as possible and thank you for sharing how you deal with the pain associated with some medication. I did guided meditation and relaxation for years but I suppose I will have to start again…
I think I also need to get some assurances from the ostoeporosis nurse about follow up and monitoring and I will call the ROS helpline to see what i can expect, as I feel very negatively about the whole thing at the moment.
Wishing you also all the best with your healthcare plan, 
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HI 28Harvey28,
I have spoken to the ROS nurse this morning and she was really helpful in spelling out standard good practice and what I should be able to ask for before starting a treatment.
I then spoke to the Osteoporosis nurse who listened to my arguments re Teriparatide and will send me forms for blood tests (myeloma screen , coeliac screen and parathyroid hormones) prior to starting treatment. She also wants to see my MRI results when I get them.
I did more research last night and that helped too.
So i’m very grateful for your advice and also for the lovely ROS nurse I spoke to this morning, sadly I had another call and could not take the survey.
So thank you again and best wishes 
Hi Hopeful,
I have found this info online, while I was trying to figure out what the treatment entails, I hope it’s ok to paste it, sorry if that’s not allowed.
https://www.drugs.com/tips/teriparatide-patient-tips
Best wishes
Hi. Thank you for letting me know how you have got on. It is really good to hear that you have found your conversations with the nurses so helpful. This will certainly give you some breathing space so that you can make an informed decision on what you want to do
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