hydroxychloroquine or steroids: recurrent missed miscarriages

[Bambii]

Dear ladies,

I'm looking for your help, thoughts or experiences with latest or alternative treatments for recurrent miscarriage please.

I've had 3 missed miscarriages, all occurring at 8 weeks and after a healthy heartbeat has been detected. Karyotyping (chromosomal checks) on baby confirmed they were all chromosomally normal.

I've read about immune treatments like hydroxychloroquine and steroids. Have these worked for you or someone you know?

At an nhs recurrent miscarriage clinic we've had several tests done, including APS (clotting etc.) as well as husband's sperm check. All tests have come back normal.

A few years back, before my pregnancies, I had severe food poisoning and my immune system went into overdrive, attacking my sensory nerves, causing electric shock symptoms in my arms and legs, and giving me severe hives. I've since recovered and notice I rarely get flu/colds now.

I can't help but think perhaps my healthy babies are dying because my immune system is still somewhat in overdrive?! Unfortunately the routine recurrent miscarriage blood tests that I've had done via nhs don't reveal anything (no signs of lupus etc).

I took progesterone 400mg and aspirin 75mg for the third pregnancy but a missed miscarriage still happened.

My nhs recurrent miscarriage gynaecologist is very defeatist - saying I should just try again and that although it is somewhat suspicious that a healthy heartbeat is detected prior to the miscarriages, the research just isn't there to help me. She's just doubled my dose of progresterone to 400mg twice daily for next pregnancy (I'm only 5ft so wondering how emotional that is going to make me!).

[ChocolateGateaux84]

I'm so sorry for what you've been through.
Unfortunately the NHS tests often aren't comprehensive enough.
You would need to go privately and see either :
Dr Amin Gorgy at the FGA,
Dr Hassan shaehata at the Epsom miscarriage clinic
Or
Professor siobhan Quenby /Jan Brosens at the Coventry Implantation clinic.

The above 2 are more expensive and both work from similar approaches. Taking numerous vials of blood and testing it to look 4 markers of NK cells, inflammatory cytokines, and antibodies
Treatment plans consists of steroids, intralipids, IVIG drips, humira, GCSF and clexane.

Or you may want to start with the Coventry clinic. Their approach is different. It takes a sample of tissue from your lining to look for imbalances in the cells that may be leading to m/c.
They are significantly cheaper and operate in a more research based way. Treatment is steroids. They don't believe in the heavy drugs offered by Gorgy / shaehata.

Whatever u decide i wish u the best of luck
X

[twinkledag]

Worked for my friend. She blogged about it - search for blog called trytryagain

[Bambii]

Thank you ladies! It's all very confusing, especially as my doctors tell me I should just try again and to not believe in these private doctors.

To add to all that, I suspect I'm a week pregnant (after so many pregnancies you start to know the symptoms very early on).

If I am, then many I give this one more go?! I think if I have another miscarriage I'm going to contact Dr. Shehata...

Anyway, thank you again xx

[Bambii]

@twinkledag @ChocolateGateaux84 - I've just had a positive pregnancy test and we fly to Virginia for a wedding tomorrow morning, so I guess I'll just see what happens with attempt number 4! Xxx

[kittlesticks]

I'm sorry you're going through this. It's truly awful. I had 3 miscarriages before my son was born. I was treated with steroids and progesterone by Dr Shehata because I had a large number of immune cells in my blood. I was also given monthly 'intralipid' drips at Shehata's clinic until I was 16 weeks. My son was born 2 years ago on our fourth pregnancy, my first with treatment. I'm now expecting my second child, again on the same treatment. I can only say that I fully recommend Dr Shehata's clinic in Epsom. In total I believe both treatment plans cost approximately 3 grand but after 4 years of miscarriage misery the credit cards weren't even a consideration. Feel free to private message if you need any further advice.

[Bambii]

Dear ladies,

Went to Dr. Shehata and he confirmed elevated NK killer cells and mild hypothyroidism so then prescribed Hydroxychloroquine, aspirin, progesterone and Levothyroxine.

I am to be on the Levothyroxine, Hydroxychloroquine and aspirin for 8 weeks before trying, then introduce progesterone when I ovulate.

Thank you for you wonderful advice, fingers crossed this works. xx

[kittlesticks]

Hi @Bambii I'm really glad you have a treatment plan. Really hopeful for you. Feel free to keep posting if you have any questions or concerns.

[twinkledag]

Good luck @Bambii ☺️

[Zest11]

@Bambii I am glad you have a plan in place. It is all so so hard but hopefully things are on the up now.

Do you mind me asking you a couple of questions? I plan on seeing Dr S in a month or 2 as I have had failed fertility treatment and a couple of natural chemical pregnancies...not sure if he will help but equally no idea what else to do. How much did all of the tests cost you in the end? I have had the same nhs ones as you...blood clotting, lupus etc and nothing has come up. The estimate I was given was £1500 to £3000 which is quite a broad guess! Also what were your thyroid levels (tsh and ft4) do you know? I am wondering if my thyroid isn't helping things...

[Bambii]

@Zest11 thank you for your kind words. I'm so sorry to hear you've had a difficult time too. I'm happy to answer any questions!

Unfortunately I typed this all out and hit post but it disappeared, so here goes again! 😊

1. Cost:

We received a number of forms to fill out and a price list to review well before the first consultation. We paid a £100 deposit for the booking and the initial consultation cost £350). After that they're £150 each time.

During the consultation Dr S decided on which blood tests were necessary based on my history. For me, he picked a wide range of tests, so in total (including consultation fee) we paid £2300 at the end of the first appointment. We were sent to a lab around the corner to do the blood tests.

1. Test results:

My TSH was within normal range but on the high side of normal (3.48), so Dr. S advised I should be on Thyroxine 25 mcg. He said high TSH can hinder pregnancy success.

My NK killer cell count was more than 300 (normal is less than 200), so he suggested steroids initially and handed us a leaflet to read. After I told him about my history with stomach issues (ulcers), he decided against steroids and opted for Hydroxychloroquine instead. Both are immunosuppressants.

1. Prescription and guidance:

To take the following for 8 weeks before trying:
Vitamin D3 2000 ug
Prenatal vitamins + Omega 3
Thyroxine 25 mcg - morning
Hydroxychloroquine 400mg - lunch
Aspirin 75 mg - night

To take when we start trying after 8 weeks:
Progesterone 400mg

1. Exploratory hystereoscopy:

Because of my repeated BV and mild infections (fishy odour etc) likely due to all these bloody missed miscarriage surgeries, he advised it might be worth also having an exploratory hystereoscopy (camera in uterus), and also getting a tiny biopsy taken. We agreed I would have this done with a local doctor and commence medication after.

1. Recent game changer:

*@Zest11* news of this new study came out yesterday stating a simple 14 day course of a specific antibiotic called doxycycline may cure recurrent miscarriages. In Italy and other parts of Europe doctors have been prescribing this as an attempted fix for recurrent miscarriages for years. In the UK sexual health clinics prescribe it for PID.

Here is the news article: inews.co.uk/news/health/antibiotic-miscarriage-endometritis-doxycycline-study/

Interestingly it seems Doctor Shehata's prescriptions of steroids or Hydroxychloroquine have one thing in common with this antibiotic Doxycycline - the purpose of reducing endometrial inflammation!

So, it seems reducing uterus and general inflammation can be done by trying to kill whatever is causing it (via a specific type of antibiotics) OR suppress the immune system so the inflammation doesn't interfere with pregnancy (by prescribing steroids or Hydroxychloroquine).

This may be why they all work to a certain extent?! None of this is proven. Frustratingly it could still well be something else entirely!

With this in mind, my plan of action is:

1. Book in the exploratory hystereoscopy to tick the box

1. Go to my local sexual health clinic and explain my recurrent miscarriages and fear of having chronic PID and get the 14 day course of doxycycline prescribed (they commonly do an STD test but prescribe antibiotics at same time).

1. Once the antibiotic course is complete, I will begin the Hydroxychloroquine and use the 8 week wait to get as healthy as I can.

I feel like at least this way I have done everything I possibly can...

Anyway, hope this helped xxx

[Zest11]

@Bambii Thank you so much for that response...just what I needed to hear! I am so pleased for you that you have a plan and everything seems really positive. I really really hope thinga work out. Please keep us updated on this thread. That is also very interesting about the antibiotic...you have definitely done your research!
Thank you for the preconception plan...I may as well start on that now. It is also reassuring about the thyroxine as mine is 3 so I have also been giving myself 25mcg of that. (GP was not best pleased due to lack of 'evidence'!)

I know exactly what you mean about trying everything you possibly can. It's so hard when we go to the NHS who are obviously so very well meaning but their funds don't stretch to finding the cause. My IVF consultant warned against the private consultants and medicine unlicenced for pregnancy but when (in my opinion) the alternative is another failed IVF/wasted embryo for "no reason" I feel there is no choice. In all honesty I actually wonder what the nurses/consultants actually think rather than say. Dr S actually works for the NHS as well which is reassuring that he sees things from all angles. It also seems he keeps cost in mind by letting you have the hysteroscopy locally.

[Lovemylittlebear]

@Bambii

Hey Bambii

How are you getting on? It was quite refreshing to read a thread where someone had done such a lot of research as this is what I tend to do. I did my own research in 2015 after three mcs and whilst waiting for an appointment with dr Quenby I fell pregnant again so went to a local private consultant with all her research and she prescribed me with preds, clexane, progesterone, aspirin. We went on to have a little boy and then soon after another daughter. I took the same medication. NHS tests had been fine but as I had no formal tests and it was so long ago when I unexpectedly feel pregnant in October I didn’t take the medications as I previously did. I miscarried again. I went back to the private consultant who told me about the doxy study and prescribed this on a private prescription. She has said if we fall pregnant again she will prescribe everything for us. I am considering whether I pay for private tests before trying again or whether I just go ahead with the meds once again, should I fall pregnant. It’s been a mind fuck and I’m kicking myself for not pushing for the meds with this pregnancy. I naively thought it might be different 5 years on. I hope you are doing well!!!

[LaurenAB94]

Thank you so much for your information. I have my first appointment in 3weeks with Dr Shehata

[LaurenAB94]

@Bambii
Hi I'm sorry for what you are going through.
I see Dr Shehata at the CRP clinic in Epsom I can honestly say it is the best decision I have ever made! It has improved my mental health so much finding out what is wrong and how to treat it and given me the courage to continue this journey.
The NHS told me there was nothing wrong with me even after 4 miscarriages so I couldn't carry on knowing my next pregnancy would end the same way so I went to see Dr S
I'll list what's wrong to make it easier

1. He scanned me I have PCOS which can contribute to miscarriage by causing fluctuations in blood sugar levels
2. I have high NK cells and NK activation which means that they react to the baby in an autoimmune way so he uses hydroxychloroquine and intralipids to treat that
3. I have low vitamin D which can contribute to it so if your not already on high vit D I'd maybe try going into that aswel
4. I have a positive ANA blood test which indicates autoimmune disease so the hydroxychloroquine will also help that
5. I'm on aspirin Pre conception 75mg daily and progesterone from ovulation 2x 400mg daily to help

I hope this helps he offers a range of tests and it's not cheap but worth it.

Once again I am so very sorry for what your going through and I wish you the best of luck in the new year ! If you have any questions ask away I'm an open book xx

[Beckylou6767]

Hi all.

How is everyone getting on with their treatment plans?

I have just been out on Hydroxychloroquine by Dr Shehata after 4 early miscarriages - so really interested to hear how you’ve got on!

Thanks,
Becky

[porger80]

Hi @Beckylou6767 did you have success? I've just put a call into Dr S clinic in Epsom but they're not very quick at coming back - did you have a good experience of the clinic, did they tend to come back to you quickly on stuff once you signed up with them?

[Beckylou6767]

Hey @porger80,

Really heartbreakingly we actually conceived the first cycle I was on the tablets but ended up with another early miscarriage. We then took a couple of months ‘break’ - not really intentionally - but I think we were both exhausted and sex just wasn’t a priority.

We have started to try again this month and I’m just approaching testing time, so I’ll come back and report if any good news. Our 6 month follow up on the treatment is the beginning of Aug.

With regards to the clinic, they have been OK. Unfortunately the waiting lists are very long and it was about 5 months between my referral and my first telephone appointment. I was then sent for a blood test and had a follow up appointment before I was given a treatment - so probably another 4-6weeks before I actually had a treatment plan. When I fell pregnant I was told to email them to advise them and the reply I received was
‘Great, call early pregnancy and schedule an 8 week scan’ despite being told I’d be monitored from 6 weeks if we did fall pregnant. When I emailed back and told them I’d had another miscarriage I had no reply.

In general when I have had set appointments they have been good. But I would say the care outside of that has been lacking - but that’s pretty much what I’ve come to expect throughout this ‘journey’.

I would imagine his private practise is much better but we don’t have £3.5k to spend on blood tests (which is the quote I had from the private clinic!) particularly not when we’re probably looking at IVF if this doesn’t work.

[Beckylou6767]

Oh - and the wait time I was given from his private clinic was 3 months - so not too much faster than the NHS.

[porger80]

@Beckylou6767 thanks for that info and I have everything crossed for you x

[Hadz1993]

Hi

Sorry i know its been a long time
Its a very brave and strong post. You goy through it

I was doing some research on hydroxychloroquine as I have been Prescribed to take it. I had a miscarriage at 7 weeks no heartbeat. Did you have much luck with it? I am now 3 weeks pregnant and taking it feel really anxious about the process

[Bambii]

Hi all - quick update - with steroids and Dr. Shehata's guidance we are now 7 months pregnant! It worked! Don't give up guys - a doctor once told us - if you stop, you have zero chance, if you keep trying - there's a chance. Xxx

[Bambii]

Hi all - quick update - with steroids and Dr. Shehata's guidance we are now 7 months pregnant! It worked! Don't give up guys - if you stop, you have zero chance, if you keep trying - there's a chance. Xxx

[Beckylou6767]

Congrats Bambi!

I wanted to also come back and say we now have a 10 week old Son! We did do IVF in the end and had results that indicate we had issues other than high NKCs at play, but I continued Dr Shehata’s steroid treatment and was also on a small dose of Prednisolone throughout my fertility treatment.

Wishing anyone reading this the best of luck.

[Bambii]

@Beckylou6767 congratulations!! That's amazing news.

Yes, so here's the treatment plan I was on, for any future interested women:

1. 25mcg thyroxin daily for weeks before getting pregnant and keep taking throughout
2. 25 mg steroids started at ovulation (stop if pregnancy test neg and resume again following month)
3. Vitamin D3 4000iu
4. Pregnancy vitamins
5. Folic acid

I also avoided anything that might give me an infection or BV and regularly used canesten vaginal gels to keep my flora healthy!

[Bambii]

An aspirin - 75mg every evening!

Make sure you take something to protect your stomach from the steroids too - like omezeaprile