A substitute for Prostap 3????

[twinkletoes1]

I have been on Prostap 3 injections for the last year or so, Kliofem to help with the side effects and was put onto an anti-depressant to help with the manic ups and downs of my hormones. Things were good and pain was reduced immensely - after my 2nd laparoscopy in 2011 I had little pain relief and my consultant decided on this line of attack. All going good after bad pain for 10 years...so good I felt I could finally move to Australia (I'm originally from Northern Ireland).

But low and behold I have been told the drug named Prostap 3 does not exist and the substitute injections that performs the exact same thing are only used for treating people with tumours. The doc could not prescribe it for me as it was not for endo sufferers, and basically was only allowed for people with cancer

Is there anyone can help me with this? The thought of going back to that level of pain is horrifying me...to the point I am considering returning home to continue with my injections. Every time I think I'm onto a winner endo raises its ugly head again and it controls my life again. I hate it.

Any help will be greatly appreciated as I am getting nowhere searching the web. At my wit's end.

Thanks for listening

Lisa

[Impatient]

Hi Twinkletoes,

Your Australian doctor is correct.

Prostap3 is a 3 month lasting version of the drug which is rarely used in endometriosis cases, it is not recommended by the manufacturer for endo.

Primarily it is indeed for cancer cases- Prostate and Breast cancer

Prostap is the British/Irish name for Lupron.

The dose recommended for endo is every 28 days injections.

The 3 month dose is far too strong for women with endo.

Furthermore you have already exceeded the maximum dose in a life time for endo

-which is just 6 months because of the damage that this chemo drug does to your spine bones thinning them and they will not recover. It affects the pelvic bones, and ribs and skull too making it more likely you will have fractures as you get older, especially after menopause.

Your body can probably cope reasonably well right now,but as time passes and your bones naturally get thinner and more britle - problems with fractures can get significantly worse

by having had drugs like Prostap.

Research studies have shown that in women whose spines were checked before starting treatment,and again at the end of 6 months when they stopped - showed a significant loss of bone density and when checked again 6 months further on this bone loss was still there and had not recovered.

For this reason the max dose in a lifetime is 6 months and in very clearly indicated on all the patient advice leaflets for all the different named GnRH drugs of which Prostap aka Lupron is one.

You certainly do not want osteoperosis on top of your endo problems.

Normally someone who had completed their 6 months would have done so either after surgery to remove all existing endo - or as a delaying tactic while waiting for surgery to remove all existing endo. Once the endo is removed there is no need for GnRH drugs and you switch to the much less damaging methods to stop your periods - like mirena coil or birth control pills.

There is an in between stage of 3 monthly injections called Depo-Provera. Unfortunately this drug also has bone thining as a consequence of using the drug.

And if you had been on Prostap for 12 months - it would be very unlikely that any doc worth his salt would allow you to now have Depo Provera either.

You do still have options, surgery is your best bet, but that will depend on your finances and medical insurance in OZ and if you have transferred your residency to Australia then you may no longer be entitled to NHS free treatment even if you did fly back to the UK.

Do check your situation out carefully before you buy any plane tickets home.

Other options are to ensure you have sufficiently strong pain killers,and you take steps to stop your monthly cycle of bleeding with birth control pills packs taken back toback, or Skyl or Mirena coils or Nexplanon arm implants.

Listen to your Australian Doc - they are clearly familiar with the risks of Lupron (Prostap) and probably aghast that you were given the 3month version let alone for twice the maximum recommended length of time.

What options did the consultant recommend to you? Are they willing to offer you a surgery on the existing endo yet?

[Screechowl in reply to Impatient]

I'm currently on Prostap3 (with kilovance add back) from a British endo centre.I pushed to go there because I thought they'd be able to do the excision , as NICE recommends,but they are reluctant and want me on Prostap3 for the future. I have already been on prostap 28 day version several times (diagnostic, pre lap, treatment,pre hysterectomy) so have more than outdone my lifetimes worth under the manufacturers guidance.

It's interesting to know that they won't consider it as treatment for endo in Australia. What options have they offered you?

[twinkletoes1 in reply to Screechowl]

Hi Screechowl

They didn't offer me any options as it was a GP I saw with a letter from my doc back home stating the medication I was on. But I have found an Endo Clinic in Sydney and to be honest I have spent 10 years banging my head off a brick wall talking with supposedly endo specialists in the NHS to no avail - and for putting me on Prostap3 longterm knowing the damage it would do to the bones!!!

So fingers crossed I will have better luck with the Endo Clinic and onto a more successful laparoscopy than my last one. Even considering a full hysterectomy now too. Would have loved children but at point I am 38 and have to consider quality of life.

But if I were you I would ask the British Endo Centre in regards to the Prostap and longterm use. Prostap worked great for my pain but what will face us on down the line is what scares me. How much damage is being done to my body to ease my pain? Too scary to think about it.

Twinkletoes

[LCP2018 in reply to twinkletoes1]

Hello, I know this is a very old post, and I came across it accidentally, I have skim read the reply to you. I have this drug amongst many others monthly for hormone suppression because I had breast cancer twice, I have no end date for this, but my adjuvant therapy is set to continue for ten years, so I just wanted to say, do not listen to the naysayers who would criticise this for 'bone health' there are many things wrong with the treatments I have to take in my experience but bone deterioration is the least of my concern because (if anyone else is reading this post in future) your specialist should prescribe you a bisphosphonate for the bones which offers you all the protection you need, but if you wish to take additional calcium and Vit' D - do so. Apologies for jumping on your post, but after years of cancer care, I become so annoyed seeing other people try to scare people for whom certain drugs are a necessity.