 Posted 24/11/2011 14:31:47
|
|
|
|
| I was wondering if Sarah, or anybody else knows anything about Teriparatide, it's a 2 year injection course that my consultant is trying to get funding for me to have. I am not a fan of medication due the side effects. Has anybody got any personal experience from taking it? Many thanks Sue
|
|
|
Posted 24/11/2011 22:38:35
|
|
|
|
I had not heard of Teriparatide, so looked it up. Teriparatide is the portion of human parathyroid hormone, and the only drug approved by the FDA which stimulates the osteoblasts to build new bone - thanks Wikipedia!
Teriparatide is also know as Forsteo - and if you look on this website you will see that Forsteo can have side effects. Just click on 'Search' tab and then type Forsteo in the word to search for.
If I were offered Forsteo I think I would be tempted to try it, but then after I had read about the side effects I think I would decline -so not much use to you.
Luckily for me at the moment I feel confident that my OP was got early enough for me to try to prevent if getting worse by altering my lifestyle.
Whatever you do, I hope you manage a way of dealing with your OP.
SarahW
Tscore Lumbar spine -3.3, Femoral neck -2.6, Hip -2.2
Alkali diet (+ no caffeine/sugar/salt/rhubarb/spinach) and exercise and supplements of Vit D (2,000IUs daily), Vit K2 as MK7, vit K2 Menatetrenone, Cod liver oil.
|
|
|
Posted 04/01/2012 12:49:01
|
|
|
|
I have just read with interest the side effects of Teriparatide (Forsteo) and with considerable disappointment. I also have autoimmune thrombocytopaenia ( ITP) plus very long standing gastro problems (hiatus hernia with reflux, oesophagitis and stomach ulcer) I had been hoping that Forsteo might be a good option though my consultant is doubtful if it would be offered - my Primary Care Trust is extremely reluctant to ever grant permission for this drug to be used. He has never yet been able to obtain it for one of his patients.Unfortunately it is important that I avoid a drug which is likely to result in a fall - if I bang my head this could result in a fatal bleed. With ITP the blood does not clot as the platelets are killed off by the immune system so dizziness is not what I need. Looks like Forsteo might not be an option.
The alternative I am being offered is Zoledronic Acid infusion to last one year. This I am not a bit keen to accept as I have always had multiple drug reactions so any new medication is a worry. With the infusion it cannot be stopped and to last one year is going to be quite strong I imagine. The list of reported reactions, including fatalities is pretty scary. I am beginning to wonder whether to accept any medicaton at all but my osteoporosis is quite severe. The result of very high dose steroids over far too long for the ITP.. We feel sad about this as does my GP - the osteoporosis need never have happened.
Best wishes to you all for 2012
|
|
|
Posted 04/01/2012 13:41:55
|
|
|
|
| There are a few people on this forum who are currently taking Forsteo, so hopefully you will get a reply from someone with experience of teraparatide soon. A hospital registrar suggested that it might be the best treatment for me when I was first diagnosed, with a very low spine score, and I would have been happy to try it, but my consultant told me that I didn't meet the criteria for funding. I think that this meant being over 65 and having several fractures. Forsteo is only licensed for a 2 year treatment period, so I think you would also need to consider what you will take afterwards, as the gains in bone density would not be maintained otherwise.
|
|
|
Posted 04/01/2012 14:41:49
|
|
|
|
Sarah, thanks for message..... ditto
Jilly
|
|
|
Posted 05/01/2012 12:24:28
|
|
|
|
Thank you for the most helpful comments re Teriparatide. Really appreciated. I am now being referred for a DEXA scan - much more accurate than the ultrasound heel scan. l am still hoping I will not be refused Teriparatide. Heel scan was rated as 'high risk' with a score of -2.5.
My consultant tells me that I could pay for Denosumab so presumably this too is very restricted. I note that unlike Teriparatide it is not shown to reduce the risk of broken bones in people who have osteoporosis caused by corticosteroid medication so maybe not so effective in my case. I already have fractures in my spine. Also it is given by injection to last for six months so cannot be stopped if necessary. If this drug becomes a possibility I will have to try to get more information. I know very little at the moment. Is anyone on Denosumab.
My GP says he well understands my reluctance to go ahead with treatment for the osteoporosis and it is a problem but also realises that to do nothing is also a risk.
Galanthophile
|
|
|
Posted 25/01/2012 22:25:53
|
|
|
|
| Hi I've been taking Forsteo - Teriparatide since October 2011. No obvious side effects. LS
LS
|
|
|
|