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Recurrent miscarriage - progesteron treatment - PROMISE trial

(7 Posts)
Trixy3 Sun 20-Nov-11 19:09:07

I recently had for the third time surgical management of a miscarriage and have heard about the PROMISE trial, a multicentre research study in which women with recurrent miscarriage (at least 3) and with normal diagnostic test results can participate.
If one is elibile for enrollment, I think one is randomized (by chance) to either receiving progesteron suppositories or placebo suppositories during the first trimester.
I am thinking of joining the trial at the Liverpool Womens Hospital (other centres are in Birmingham and several other cities in UK), but am not sure whether it might not be better to ask my GP or at the recurrent miscarriage clinic whether I could not directly receive Progesteron treatment - so far nobody has told me that this would be an option, but I have read in the literature that there have already been some preliminary research results that show that Progesteron is helpful for women with recurrent miscarriage.
Here my question:

Does anyone of you has experience with either Progesteron treatment or participation in the PROMIS trial?

Rosetti Sun 20-Nov-11 19:20:40

Yes and it works!! I had progesterone with my 4 healthy pregnancies and 3 miscarriages without. If it works for you it is a simple and painless solution. good luck

Trixy3 Sun 20-Nov-11 19:31:52

Wow - congratulations, Rosetti! This is extremely interesting for me!
Sorry, may I ask you for more detail?
1) Did you have 'first trimester' miscarriages in the beginning?
2) Did you have any diagnostic tests that showed that you had to little progesteron?
3) Who offered you progesteron treatment - your GP or someone at a hospital/ recurrent miscarriage clinic? (Nobody told me that I had this option outside of a clinical trial)
4) In what form and how often did you receive progesteron - as injection, table or suppository?
Sorry for all these questions and many thanks!

oflip Sun 20-Nov-11 19:41:19

Well there is an upper age constraint, presumably its late 30's.

I went to Liverpool after 5 mcs. They prescribed heparin injections, high dose folic acid AND progesterone injections.
I went on to have mc number 6 while on all of this treatement.

Following this they told me that they could not offer any further treatment, any answers to why i was miscarrying which they said was true of 70% of all reoccurring miscarriers, and that they knew that i would continue to miscarry despite any additional therapies.
1st trimester mcs.
diagnostic tests all normal, one did show low progesterone levels, but was normal the following blood test..with no treatment
Consultant at Liverpool suggested the treatments and prescribed them for me.

So they were a bit of a waste of time for me tbh.

I have learned that actually they know very very little, all funding for their research has now been pulled and that the Dr carrying out the research has left. This means that they are unlikely to get any answers now any way.

Its a damned shame, its a neglected area, but there you are...doom doom doom. Sorry but im feeling quite bitter and abandoned at the moment. sad

Trixy3 Sat 26-Nov-11 17:18:11

This is horrible, I am so sorry to hear this, Oflip.
When checking the literature, I also had the impression that not much is known in the field, and with the current economic situation it is likely that the little money that is left will rather go to cancer research. Anyway, I read it is only 1% of couples who have our bad luck/experience recurrent miscarriage.
The question is how often shall one keep on trying? I know a couple who had fertility problems and had to undergo in-vitro fertilization 9 times (with a few previous mcs) until it worked. My husband and I thought we would try maybe for two more years.
We were looking for mc support groups, but unfortunately it seems that there are none in our area (we live in Greater Manchester).
If you know of any, please let us know.
Wishing you all the best and energy to cope with all this
Warm regards

oflip Sat 26-Nov-11 17:38:29

Hi Trixy, The only supportive groups i have found is on here. I dont know of any here in the North west.

I have been pregnant 7 times, we put the cut off at age 40.
I found each and every miscarriage very traumatic and physically painful & draining. I did ask about the affects on a persons body after having so many losses and they told me at Liverpool that there should be no long term problems physically.
Its the emotional distress that takes its toll.
They told me of a lady who had suffered 20 miscarriages but had just given birth to a baby girl. I think that was their way of telling me that it can work.
I stopped because i looked at the bigger picture.
Having my ds was the hardest thing that i have ever done, i wasnt convinced that i could go through it all again in my 40's...and do it well.
TTC took us SO much energy and time and the desperate emotional toll each and every month and the dread and sickness each time i got a positive test knowing what was to come.
Its just so hard.
I hope that Liverpool can help you, i hope that you get the answers that i couldnt get.
best wishes.

trixy123 Thu 06-Oct-16 12:19:27

Dear all,
This is just to follow-up after my original post above (Trixy 3) - I had submitted all GP records etc to enrol into the PROMIS trial but for some reason they never got back to me. So we decided to have a private Gynaecologist prescribe us Progesteron exactly as given in the treatment arm of the PROMIS trial - and it worked! I have had two healthy children in a row. Since then I advised a few friends with recurrent miscarriage to take Progesteron and it worked for them two (three persons)

However, I only now have seen the results of the PROMIS trial and am somewhat shocked, as they conclude that Progesteron does not work! For me and my friends it clearly worked so I assume that for some reason this trial did not capture those women for whom it worked - maybe some sort of selection bias (I did not get in for some reason although I thought I fulfill all criteria) or stratification issues.

In any case, it is clear that it doesnt work for all women, but to me and my friends it is absolutely clear that it does work for some women. So please, do not let these research results prevent you from at least giving it a try!

Warm regards and Good Luck to everyone who goes through this nightmare of recurrent miscarriages!

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