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Another miscarraige on Dr. Shehata's plan (PRED, ASPIRIN, Vit d3 and progesterone)

(44 Posts)
misscam Thu 30-Nov-17 16:16:42

Hi guys,
was diagnosed with boderline nk cells and high tnf alpha.
I have just had another miscaraige on Dr Shehata's plan. I was on predfrom ovulation, aspirin and progesteron.
Wondering if any one had failed experience on this protocol nd what was proposed after . did Dr S change the protocol ?
I was really couting on this treatment and nw I donot know where to start.
Iwould love to hear other's experience after a failed cycle with Dr s

ferntwist Tue 12-Dec-17 13:55:25

So sorry for your loss. I’m on a similar plan but not with Dr Shehata. How many weeks were you and will you have the fetus tested? It could be that there was a random chromosomal abnormality, which would mean the pregnancy wouldn’t have developed even on prednisolone.
Sending you hugs.

misscam Thu 14-Dec-17 11:02:09

hi ferntwist,
all my miscarraiges have been at 5 weeks or sooner but for one at 7 weeks withirregular heartbeat. the last one on the protocol was 5 weeks and it was natural so could not be tested for chromosomal issues.
i am hoping that i will be put on HUMIRA and that will sort the issues out.
Best of luck on your protocol.

ferntwist Fri 15-Dec-17 12:36:10

Good luck misscam. A lot of the ladies on the pred thread on Conception have very similar stories to you, with losses at 5-7 weeks. Lots of them are on their second and third trimester now with prednisolone. Good luck!

PJ12 Sat 16-Dec-17 09:49:25

Hi ferntwist. I am in a similiar position to you. I have had 5 miscarriages in total. I went to Shehata after miscarriage number 3 and was put on the same protocol as you (I was diagnosed with high NK cells and sky high TNF alpha, it was 57 or 58). He wanted me to do Humira (I'm supposed he hasn't suggest it to you if you have high TNF alpha?) but I declined (have read it doesn't work half the time). After being on steroids for 3 months I had my TNF alpha retested and it went down to 27. I got pregnant soon after that and started spotting at 7 weeks and miscarried by 8 weeks (happens every time, the steroids didn't make one bit of difference). I always have natural miscarriages so didn't manage to get it tested. Also, whilst pregnant, I had an awful reaction to the steriods (or it could have been the intralipids, we're not sure. I was ok on steroids when it was short term). They gave major major heart palpitations to the point where I can't take them now. Shehata's new protocol for me is Hydroxychlorquine (has he mentioned it to you)? I think he usually offers it to women once they've had a miscarriage on his treatment (so same protocol as you are on plus hydroxy). I can't take the steriods so I'm only on hydroxy and crossing everything that pit is enough. I did get pregnant again (whilst on hydroxy) in Sept, saw a heartbeat at 7 week scan and it was gone by the 8 week scan. This was my first missed miscarriage and I had an erpc and had the fetus tested. The results came back a few weeks ago and it was a trisomy 16 so no drugs in the world could have saved that pregnancy. Shehata said he is happy for me to continue on the same protocol. I am praying that this will work as I really don't knew where to turn next. Steroids seem to be the miracle cure for everyone and I can't take them sad. Do you have any children? I have 3 yr old DD and had no problems with that pregnancy. All my issues started after her. I'm also 38 now so I think age might be starting to play a role as well. Sending you lots of luck and I really hope his treatment works (for both of us). X

PJ12 Sat 16-Dec-17 09:50:25

Sorry, that should have said misscam not ferntwist

misscam Sun 17-Dec-17 00:59:25

Hi PJ12,
thank you very much for the message, I am sure it will benefit ferntwist aswell. I do hope that we all follow this threat and update on our journey to encourage each other.
Although every miscarraige is a missery, i hope it was a relief that you found chromosomal issues with the one you had while on hydroxy.
Steroids alone did not work for me and i have had one miscarraige while on steroids from bfp and another from ovulation.
I will update on my appointment in January with Dr. S.
lets hope something works for us. I am drained from these miscarraiges. I will be 38 next year and wishing for a miracle baby next year for us all.

misscam Tue 19-Dec-17 12:12:45

Hi PJ12,
I donot have any children

PJ12 Sat 23-Dec-17 11:40:33

I feel the same misscam. It has been two and a half years of hell 😞 I will be 39 next year and I know time isn't on my side. It was bad enough dealing with all the miscarriages but now I have the added pressure of time running out. If you don't mind me asking, how many miscarriages have you had? And has anything ever come back on your tests? I went to St Mary's and tested positive on their TEG test (which Dr Shehata doesn't believe in). They only prescribed me 150mg of aspirin which I did take in my last pregnancy. After that miscarriage they have now prescribed me heparin (even though the last miscarriage as chromosomal they want me to try heparin because of the number of miscarriages I've had now 😞).
Good luck on your appointment in January and please let me know how it goes x

misscam Sun 24-Dec-17 20:00:17

Hello PJ12, I have had 9 miscarraiges in total. Time as well is a huge factor for me as I will be 38 next year.I am terrified of trying again while my tnf alpha is still very high.
I hope I could get the humira and text to see if evels go down. My levels were at 33.
All the best.

misscam Thu 11-Jan-18 09:43:47

Hi PJ 12,
Had my appointment the other day. It went really well and like you I have started hydroxy. Will be on in for 8 weeks before trying again as normal with steroids from ovulation plus the hydroxy. Fingers crossed. I was not offered humira as my levels are just border line.
Keep us updated. I will do the same.
Good luck to all the others as well

PJ12 Thu 11-Jan-18 22:40:14

That's great Misscam. I have an appointment next week to have my NK cells and TNF alpha retested. I have been on hydroxy since July (no steroids since I can't take them anymore) and I want to know if hydroxy is even making a difference. I guess I will have to wait a coup,e of weeks for results. I hope you enjoy your 8 weeks off. It was a nice break for me. Not one I wanted to take but in hindsight it was very good for me mentally xx

misscam Sun 14-Jan-18 19:19:00

Thanks PJ12.
Hopefully your levels have gone to normal.
Keep us posted and I will do the same after my break.

Disneyrules Tue 16-Jan-18 00:11:44

Hello my lovelies, I'm so sorry to read you're all going through this. Do you know if you have to get referred to this clinic or do you pay privately? Im all fairly new to this so sorry if it seems a dumb quesrion. No idea how much it would cost to go private but it's something I think we may look into or have to save up towards as although I've not had as many as some of you I feel like I can't move forward or try again without getting some kind of reasoning or definitive answer. I suffered my 2nd miscarriage on 7th December at 11 weeks and am still going through it so it's early days and I don't think it's really sunk in yet but I am so desperate for a baby but I feel like I can't move forward or want to try again unless I get answers. xxxx

misscam Tue 16-Jan-18 06:38:45

Hi Disney Rules,
so sorry you have to go through two miscaarraiges. One is a nightmare , talk of two and more. I wish I had gone private after my secons instead of waiting for the 8th , 5 of those under the NHS. The NHS will only refer you to a consultant after your third unless otherwise.

For me, I am private under this consultant but some have been refered to him on the NHS in Epsom, Surrey.
We paid £1800 for tests, excluding those that had been done undeer the NHS. It would have cost about £2500 excluding initial appointment which was £250. consultation fee has gone up as I hear like everything else.
Goodluck my dear. I donot have a success story yet but I believe I will. I am still on the treatment phase and not trying yet.

Disneyrules Tue 16-Jan-18 13:54:49

Thank you for getting back to me I really appreciate it. I'm so sorry to hear of your losses it must feel truly awful, it's amazing how strong all the ladies are on here. Fingers crossed for you and all the other ladies on here. I think the fact that you have to go through this terrible and heartbreaking ordeal 3 times before you are sent for tests is truly awful. I think the NHS are wonderful and appreciate how far stretched they are but who realistically has a minimum of £3,000 to spend on going private!? Xxx

PJ12 Tue 13-Mar-18 14:03:59

Hi misscam,
How are you doing? Are you still on a break or back to ttc now? I had my appt with Dr S a few weeks ago and my levels have pretty much stayed the same (which is what he was expecting as apparently hydroxy doesn't reduce your levels, only holds them back from getting higher). So I've still got high NK cells (270), TNF alpha is just under (30) and my activity is now borderline (it used to be much lower). We've been ttc'ing for 4 months now and nothing (I used to get pregnant on my first or second try). It is very frustrating but I think that's my age starting to play a part now. If I'm not pregnant this month I thin I will try his superovulatio program.
Hope all is well with you.

misscam Wed 14-Mar-18 13:50:27

Hi PJ12,
I am now on 2ww with hydroxy and steroids. So sorry to hear ur levels have not changed. I think Super ovulation will be a good next step to speed things up. I will do same if not pregnant in 2 cycles. Really cannot wait any longer. Will definitely keep you posted on my progress. Please let me know what happens . Goodluck.

PJ12 Sun 25-Mar-18 12:40:56

Hi misscam
Well, I've had a positive test over the weekend. I am absolutely terrified that the same thing will happen again sad. I am on hydroxy only but will also be trying another drug calls g-csf. It's an injection that you have a every 3 days until 10 weeks. It's quite pricey as it's £80 per injection. Dr S said it kinda works like intralipids so it calms your immune system. Since I can't have intralipids I want to try the g-csf.

misscam Sun 25-Mar-18 15:50:04

Hi PJ12
What a coincidence. I was just about to message you about my positive test too. I am so happy for you. Pls pls let this ones be sticky for us. I had my first intralipid this week at 4 weeks. The nerves are kicking in but I am trying to stay calm ( easy to say ).
I have no knowledge of the injection you mentioned. It's good that it works like intralipids. So technically we are on a similar protocol.
My protocol :
400 mg hydroxychloroquine
Prednisolone 25mg
Intralipids every 4 weeks from bfp
75 mg aspirin
400mg x2 cyclogest daily
Vitamin D
High strength omega 3
Pregna care vitamins

Is this similar to yours?
Please keep me updated. I have not booked for scan yet but will have nhs one post six weeks. Praying and waiting we both reach heart beat stage post six weeks. Please keep me updated.
Good luck.

misscam Sun 25-Mar-18 15:53:17

I forgot to ask. When are u due ur first injection? Do u have to go to Epsom ?
I know it's not easy but pls try and stay calm. It's so hard to but let's find a way to reduce our anxiety. Here is for successfully pregnancy to us.

misscam Sun 25-Mar-18 16:00:39

I also have zero symptoms . No sore bobs no nausea nothing. It's scary. Hoping it's the steroids masking everything. Do u have any symptoms?

PJ12 Tue 27-Mar-18 19:09:52

Hi misscam
Massive congratulations to you as well! Yes, I'm so nervous and anxious as well. This one HAS TO work!!! My protocol is similar as yours but no steroids and g-csf every 3 days for the first 10 weeks (first injection tonight). But I'm only on one cyclogest a day (one in the evening). I wonder why you're on two?

As for symptoms steroids tend to mask them so I wouldn't worry too much about (though I know how you feel, how can you not?). I usually don't get many symptoms when pregnant which is so frustrating. I didn't have any symptoms with my daughter. If it wasn't for the positive pregnancy test and lack of periods I would have never guessed I was pregnant. Though with every pregnancy after my daughter I tend to get a bit of nausea in the first week (no tiredness or sore boobs) and then it trails off. I always think that is the first sign of impending miscarriage.

I have a scan booked with St Mary's at 6 weeks and then one with Dr S at 7.5 weeks. I usually see a heartbeat at the first scan and then it's gone by the second scan (all my miscarriages have been between 7/8 weeks).
I am crossing absolutely everything that these pregnancies will be successful for us!!!!

misscam Tue 27-Mar-18 23:36:17

Hi PJ12
Glad to read from you. Unlike u, I almost always never reach six weeks to see a heartbeat. It's so frustrating. I am so nervous and regret doing the clearblue weeks indicator today which only showed 1-2 weeks. I should be five weeks and three days so I expected 3+ on the weeks indicator. So u can imagine how it feels.
I am not giving up yet. Waiting to confirm my first scan date next week with my nhs consultant and will update you. I really hope it works for us this time. Wishing u the best of luck with the injections. Let's be positive.
Please keep me updated.

PJ12 Thu 29-Mar-18 23:08:10

Hi misscam
I'm sorry you're feeling stressed out. I would just step away from the tests. They can be inaccurate at times and will just cause anxiety. I used to pee on the sticks like a mad woman and then analyse them to see if they were getting darker. All it did is stress me out and in the end it doesn't change the outcome.

Wishing you the vp eat of luck and pls let me know how you get on with yours scan next week.

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