What's next?: I’m coming to the final month of... - Bone Health

Bone Health

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What's next?

Nuthatch profile image
8 Replies

I’m coming to the final month of teriparatide. I’ve had no follow up from the bone clinic at all. The teriparatide was prescribed the day before first lockdown and it took 2-3 months at least to sort out getting it delivered so there was quite a delay starting it.

i went back to look at the original letter from the clinic. One thing it says which I didn’t pick up on at the time is to repeat the dexa after 3 years.

Now obviously I need to be followed up quite urgently now, for some reason I’d assumed they would get in touch but I’m now thinking I’ve completely dropped off the radar due to lockdowns.

Also - how on earth am I supposed to make a decision about what to do next without a clue whether the teriparatide has done anything and if so what? The consultant was very high and mighty and seemed to expect I’d do whatever he advised without questioning in any way but he soon found out I’m not having that.

So I want an urgent clinic appointment and a repeat dexa very soon. Just to make it more complicated I was given massive doses of antibiotics for cellulitis and now have c diff (which the GP refused to test for because he was also high and mighty and pretty insistent I needed urgent tests for bowel cancer.. only got tested when I insisted and not a word of apology when he rang me to say I’d tested positive).

Not feeling massively positive about my health care just now.

8 Replies
Posy-White profile image
Posy-White

Hello Nuthatch,

I was on Forsteo (teriparatide). My understanding is you do need to get an appointment asp as you will need to have some sort of follow up medication .... if I say to make sure you "keep what you have gained" by having the teriparatide that is in lay terms but it was my understanding of how it was explained to me by the consultant. Having said that it not like Prolia there isn't the need to have something lined up for as soon as you have stopped, BUT you'll need something and it does sound as if you have fallen off the appointment list.

Have you been having 3 monthly blood checks? Which then get checked before the next 3-month batch of medication is delivered? If so who ever is signing off your medication should know you are coming to an end and hopefully will action an appointment???

I did have a Dexa scan at the end of my two years of Forsteo but this was mainly to give me confidence that I was going in the right direction re bone health.

I do remember the Consultant saying not to be disappointed if after two years of injections the score hadn’t greatly increased as it was more a longer term gain and no further fractures was what they wanted. The Consultant said they often did a re scan three years from starting.

I hadn’t had further fractures that was good, and Consultant was right I was slightly disappointed that the results of the scan only showed slight increases!

I went on Forsteo because of Prolia rebound fractures; local hospital said I no longer need Prolia as Dexa scan showed I was mid Osteopenia range; I had 8 spinal fractures four months later that turn out to be life changing. I changed hospitals, six months before the end of the two years of teriparatide I had an appointment and the Consultant discussed Prolia as a possibility, which, I couldn’t face. Consultant very understanding so suggested a two-year plan of yearly Infusion of Zoledronic acid. (I cannot take oral meds so limited choice for me).

Can I suggest you call the ROS helpline and check out if as we both think you do need an appointment and plan for “what next”. I know they cannot give individual advice, but they can give you a better idea of the sort of plans that are usual after having teriparatide.

Good luck in getting something sorted

Posy White

Nuthatch profile image
Nuthatch in reply to Posy-White

Blimey no, I’ve had nothing, no blood tests, no contact at all.

I only know my calcium and vitamin d were ok a few weeks ago because they got checked for some reason when I was sent to ambulatory care with the cellulitis.

I clearly should have done something earlier and should have realised I can’t rely on either the clinic or the gp for any follow up. Gp was monumentally disinterested in any case because I made it clear I was very unhappy with them dismissing my disabling back pain for 3-4 months and insisting there was nothing wrong.

I have no confidence that I can get an early clinic appointment at all but I’m absolutely not making decisions about further treatment without full information about the current state of my bones and all the options. I’m not keen on the prospect of any bisphosphonate.

If I can find the phone number I’ll ring the specialist nurses at the bone clinic and hope for the nice helpful one rather than the snippy sighing one - if indeed any of the same staff are still there! Except the “I am the god of osteoporosis and you have nothing to do other than accept my ultimate wisdom” consultant..

Beginning to realise what’s been subconsciously holding me back from following this up 😂

Posy-White profile image
Posy-White in reply to Nuthatch

Hello again Nuthatch

I didn't mean to make you feel panicked, I feel managing our own osteoporosis is hard enough it’s not as if you can see how our bones are doing, Dexa scans and blood test only give helpful pointers not a clear picture, so one feels in the dark at the best of times, let allow when you drop of hospital lists and GP isn’t supportive.

It might be the teriparatide treatment you’re on does need the same level of monitoring; I ended my treatment just as you started yours so things might have changed. If you cannot get through to your local clinic I’m sure the ROS Help Line Nurses will be able to give you information. 0808 800 0035

I phoned the ROS helpline when I was having a difficulty with GP/hospital I think they hear some scary stories regarding lack of care and support. I’m unsure if it was to give me confidence to call again or if they where concerned I was at risk but said I could say I had spoken to a ROS specialist nurse and repeat what was said. This worked wonders with the GP’s secretary I had a call back from GP who had contacted the hospital and the Consultant confirmed I needed what I’d been asking for!

All these things are so time consuming and you sound as if you have a busy time with your Grandson, dog walking and hobbies. One does need all the options and possibilities plus thinking time before you take the decision of what treatment you want to undertake and when.

All good wishes

Posy White

Nuthatch profile image
Nuthatch in reply to Posy-White

Thank you - I wasn’t panicking I’m just cross! I’ve rung the clinic - no secretary cover at all, rung the specialist nurses and got an answer phone…

I can’t go to the clinic at the moment anyway as I have c diff - another case of gp refusing to believe me and not testing for 3 weeks till I developed colitis - so I’m thoroughly out of charity with the medical profession at the moment. Even though my daughter and her partner are a doctor/nurse couple but in paediatrics and I’m sure they’re wonderful!

I’ve looked at a lot of different studies and I don’t think a month or so on from stopping teriparatide will do much harm. The consultant and the specialist nurses tried to panic me into decisions at the beginning but I wasn’t having it then and I won’t have it now!

I’m less busy at the moment because I feel quite unwell thanks to c diff and I also work 3 days a week so I have to be able to do that - it’s from home luckily.

Nuthatch profile image
Nuthatch in reply to Posy-White

Oh and should say I have plenty of confidence contacting health professionals! But thank you for your thoughtful comments 😊

Snowybear profile image
Snowybear

Hello Nuthatch

I’m a year into Teriparatide and have had a couple of phone appts with hospital and GP done one blood test for Vit D levels. I have severe osteoporosis according to consultant and this is the first treatment I’ve had. I’ve resisted having infusions etc and worried about side effects. I think I am to have a scan after 2nd year of this treatment. I don’t know what I’ll be offered after that nor what I’m prepared to accept.

I’m sorry this isn’t helping your dilemma either. You’ve clearly fallen off their radar and need to have some contact.

All the best

SnowyBear

Nuthatch profile image
Nuthatch in reply to Snowybear

Thank you. I’m very much the same about what I’m prepared to accept. After the initial shock of the diagnosis and getting past the pain and awful muscle spasms I’ve not been too bad although I’ve lost height and become a repulsive shape - I don’t have obvious kyphosis as my fractures are low down but I have rolls and the protruding tummy which I hate because I was always slim. But I exercise and walk the dog and play saxophone (when I don’t have c diff which is making me quite ill). I’ve done various unwise things like climbing through and up deep ditches and carrying heavy things and playing madly with the grandson so I may have further fractures.

I want to know that before I make any decisions though.

Nuthatch profile image
Nuthatch

Actually got a voicemail from the nice specialist nurse today sounding very embarrassed and apologising for the complete lack of contact. She’s sorting out a scan so just hope the c diff is in abeyance by then.

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