You are not logged in.


Unread posts
  • "Chava" started this thread

Posts: 273

Reg: Sep 29th 2010

Location: Milan

Thanks: 8 / 0

  • Send private message

1

Monday, August 1st 2011, 9:24am

How long did you take aspirin and steroids for?

I have Hashimoto's and was given steroids to take from day 6 of stimms. I have also been taking aspirin since transfer.
On the day of transfer we were told to stop all therapies (including progesterone which I have been taking every 8 hours) on OTD. Today we got a BFP, much to our surprise as the embryos we had transferred were of poor quality. I am actually wondering if the doctor was thinking we'd get a BFN when he told us to stop everything because he said it after my husband asked when we can try again if it doesn't work.

My clinic is closed until September so I have noone to ask.

I was just wondering what other people were told.

Maria72

MODERATOR

    Italy

Posts: 13,772

What's Up?
ohffs

Thanks: 105 / 45

  • Send private message

2

Monday, August 1st 2011, 9:33am

Have they not got an emergency number? A lot of people carry on with the help, but each case is different so you should really contact a consultant.

Posts: 917

Reg: Feb 3rd 2011

Location: Kent

Children: One beautiful daughter -born Oct '11

Thanks: 11 / 3

  • Send private message

3

Monday, August 1st 2011, 9:38am

I agree with maria - you MUST speak to someone about this. My personal experience was to continue with asprin until week 20 and at week 12 I started to come off the steriods, but that was for me.





5 - yes FIVE angels baby5 All early losses due to elevated NK cells.

1st IVF january 2011 resulted in our beautiful daughter born Oct 2011 bab10

My diary

  • "Chava" started this thread

Posts: 273

Reg: Sep 29th 2010

Location: Milan

Thanks: 8 / 0

  • Send private message

4

Monday, August 1st 2011, 11:23am

There was no reply from the emergency number. I think it was just for emergencies during treatment and noone is there now because noone is having treatment now.

I have the main-line number of the hospital, will try that but I doubt that anyone will be able to help me because the assisted conception unit is closed so none of the consultants will be there.

I was told that the steroids are given to all patients with immune problems, didn't think to ask I would need to take them for. It was me who mentioned the aspirin to the consultant on the day of transfer. He was quite casual about it and said may as well give it a try so I wouldn't have had it at all if I hadn't mentioned it but now I don't want to stop it.

How long did you take progesterone for, Daisy?

I can't even go to my regular doctor because also she is away until the 3rd week of August and the locum is only there a couple of afternoons a week. No appointments!

I do have enough meds for a couple more days so I am going to continue with them for now. I realy hope I can get some proper advice from someone before they run out.

Posts: 917

Reg: Feb 3rd 2011

Location: Kent

Children: One beautiful daughter -born Oct '11

Thanks: 11 / 3

  • Send private message

5

Monday, August 1st 2011, 11:27am

I took progesterone until week 16.

What clinic are you at? I think it's terrible that they would leave you high and dry like this. You don't need this stress. xx





5 - yes FIVE angels baby5 All early losses due to elevated NK cells.

1st IVF january 2011 resulted in our beautiful daughter born Oct 2011 bab10

My diary

Maria72

MODERATOR

    Italy

Posts: 13,772

What's Up?
ohffs

Thanks: 105 / 45

  • Send private message

6

Monday, August 1st 2011, 11:41am

That is terrible. I think call the hospital and insist. Eventually they'll find someone. Don't give up x

  • "Chava" started this thread

Posts: 273

Reg: Sep 29th 2010

Location: Milan

Thanks: 8 / 0

  • Send private message

7

Thursday, August 4th 2011, 12:49pm

Managed to get hold of someone at last!

I have been told to carry on with the progesterone and aspirin until I am 12 weeks.

The steroids I have to take half a dose for a week and then stop. I'm a bit worried about doing that so soon :-s, I'm only on 5mg though. What dose were other people on?

I've also been told to have blood tests every 2 days for a week! I tought it would be reassuring but it is in fact nervewracking!

Maria72

MODERATOR

    Italy

Posts: 13,772

What's Up?
ohffs

Thanks: 105 / 45

  • Send private message

8

Thursday, August 4th 2011, 1:59pm

Glad you've got some answers now :cuddle

Posts: 917

Reg: Feb 3rd 2011

Location: Kent

Children: One beautiful daughter -born Oct '11

Thanks: 11 / 3

  • Send private message

9

Thursday, August 4th 2011, 2:38pm

Great news - and about the steriods, that's only an issue if you have a diagnosed immune issue. Im not sure if you have or not?? I was on 25mg.





5 - yes FIVE angels baby5 All early losses due to elevated NK cells.

1st IVF january 2011 resulted in our beautiful daughter born Oct 2011 bab10

My diary

  • "Chava" started this thread

Posts: 273

Reg: Sep 29th 2010

Location: Milan

Thanks: 8 / 0

  • Send private message

10

Thursday, August 4th 2011, 5:19pm

Yes I do have a diagnosed immune issue. I'm worried about coming off the steroids even though it is only a small dose.

Posts: 917

Reg: Feb 3rd 2011

Location: Kent

Children: One beautiful daughter -born Oct '11

Thanks: 11 / 3

  • Send private message

11

Thursday, August 4th 2011, 5:33pm

I'm sure they are doing the right thing by you hun - we are all different and need diffrent px for our problems. I would speak to them though if you are worried. xxx





5 - yes FIVE angels baby5 All early losses due to elevated NK cells.

1st IVF january 2011 resulted in our beautiful daughter born Oct 2011 bab10

My diary

chatterbox

Megastar

Posts: 8,584

Reg: Nov 30th 2007

Children: Two heaven sent miracles!

Thanks: 36 / 16

  • Send private message

12

Friday, August 5th 2011, 11:06am

Hi Chava

Dexamethasone steroids tend to come in smaller numbers but the potency is the same as hig doses of prednisolone so it can depend what you've been prescribed.

I was on 20mg of prednisolone on one cycle but only 3mg of dexamethasone on another.

Aspirin I took until 12 weeks, and progesterone I weened off from 13 - 14 weeks. I came off the steroids around 12 weeks but over a period of about a week or so. Clexane I stayed on until about 24 weeks but that was after discussion with my GP.

xxx

Me 40 DH 35 TTC 10yr
peritoneal mesothelioma, cystectomy 97 & 00
peritonectomy, lost both tubes & most of left ovary Aug 07


Dec 07 BFP b/ov m/c 9.6wk
July 08 BFN
Dec 08 BFP b/ov m/c 9.6wk

July 09 BFN
Nov 09 BFP 2 x sacs 1 b/o 1 no hrtbt m/c 9.2wk
May10 BFP at 8+4 m/mc @10wk scan ERPC

Found: High NK cells, DQ Alpha match, LAD neg & PAI-1 pos...

NOV 2010 - Immune IVF at CARE Manchester
:BFP: [zx076] :girl: born 25/8/11

OCT 2012 - Immune IVF at CARE Manchester
:BFP: [zx076] :boy: born 24/6/13

Blue

MEMBER

    United Kingdom

Posts: 8,115

Reg: Sep 15th 2008

Location: With the fairies

What's Up?
I need sleep!

  • Send private message

13

Friday, August 5th 2011, 11:10am

I'm on dexamethosone 10mg (and seem to be growing a beard :rolleyes: ). I'm assuming I'll be on it until I'm 12 weeks, and then reduce it and stop by 13 weeks-ish.
And same for progesterone.
I'm not sure about the aspirin.

We're all different :-) What worries you about coming off the steroids? As your pregnancy progresses, the risk of an overactive immune system causing any problems decreases drastically. The delicate stage of implantation is over, and the placenta is well established.

My Diary
10 years, 5 cycles, and 3 beautiful children.
My family is complete :heart: :heart: :heart:

This post has been edited 1 times, last edit by "Blue" (Aug 5th 2011, 11:11am)


    United Kingdom

Posts: 330

Reg: Feb 18th 2011

Location: Italy

Children: Our miracle baby is on it's way!

  • Send private message

14

Wednesday, August 10th 2011, 12:25pm

Hi Chava (once again - am sorry I've only just seen this).

Re the problem with the clinic - this is just typical of Italy - what a nightmare these things are here! Am glad that you got hold of someone in the end though. My clinic also didn't advise at all on what to do after getting a BFP. In fact, the aftercare sheet said that I should only take meds up to test date .......... But as I was having my immune treatment through Dr Gorgy in London (alongside IVF here) I had advise from him on what to do.

I'm only just weaning off progesterone and steriods now - very slowly at 12 weeks. I was on 25mg prednisolone. Aspirin and clexane I'm staying on until 31 weeks but that was at the advise from Dr G.

Hope all is ok xxx

AMH 8.4 (me=36). 6 cycles clomid. Immune issues.
1st IVF cycle April 11 - canx due to endo cyst.
2nd IVF cycle with immune meds May 11 :BFP: [zx076] seen 5wk5d, 8wk5d, 12wk
"There can be miracles when you believe"
My diary


  • "Chava" started this thread

Posts: 273

Reg: Sep 29th 2010

Location: Milan

Thanks: 8 / 0

  • Send private message

15

Friday, August 12th 2011, 11:34am

Thanks fluffy!

I'm worried about stopping the steroids in case my body rejects the embryo. I'm on Deltacortene 5mg.
I actually didn't stop the dose at once because I was too nervous but have taken the half dose for 4 days now.

The whole unit is closed and the nurse my husband spoke to actually called the doctor on holiday to ask him so I was worried that his response was not very well considered since he obviously didn't have my notes in front of him and I don't know how much info she gave him. For all I know she might not even have told him why I was taking the steroids int he first place!

Did you have any problems getting a scan, fluffy? The nurse told us I need one but wouldn't be able to get one because everywhere is closed! I got the "red paper" from the GP anyway but there were no appointments available til mid September so we're having to pay privately for one.

    United Kingdom

Posts: 330

Reg: Feb 18th 2011

Location: Italy

Children: Our miracle baby is on it's way!

  • Send private message

16

Tuesday, August 16th 2011, 10:11pm

Hi Chava, I'm in England at the moment and have just jumped on here for 5 mins (loads of messages to reply to but wanted to reply to you as I can see how worried you are)........

I also feel very unassured by the advise you got from the doctor whilst he was on holiday. He could have been asleep on the beach or driving when the nurse rung him and he really shouldn't give medical advise without looking at your notes. (mind you, as I've discovered in Italy, noone here has copies of your medical notes anyway and so they could be prescribing for any Joe Bloggs!!).

You can go to your GP and ask for a red form for a repeat of the steriods and just say that your doc advised this. Our GP has given us lots of meds without many questions and without knowing anything about my medical history!! If your GP is off work then there should be one who is covering who you can order the red form from for the prescription (surely??)

I also had problems with getting a scan there. My clinic would give me an early scan but said that I'd have to pay for it! So we paid privately for the first 2 early scans. To be honest, I've realised that in Italy there is either none or very little pre-natal and post-natal care available on the state so most people have no choice but to pay privately. (Although I've found that the NHS care here is far better than even the private care there which you have to pay for!!).

We had a scan in Italy at 12 weeks at the hospital but that caused my husband alot of stress with many phone calls trying to get one and we only got it in the end because the private gynae that we used was friends with someone at the hospital (it's all about 'who you know' here!). I'm going to do most of my pre-natal stuff here in England I think!

Take care xxx

AMH 8.4 (me=36). 6 cycles clomid. Immune issues.
1st IVF cycle April 11 - canx due to endo cyst.
2nd IVF cycle with immune meds May 11 :BFP: [zx076] seen 5wk5d, 8wk5d, 12wk
"There can be miracles when you believe"
My diary

This post has been edited 1 times, last edit by "Maria72" (Aug 20th 2011, 10:18pm)


  • "Chava" started this thread

Posts: 273

Reg: Sep 29th 2010

Location: Milan

Thanks: 8 / 0

  • Send private message

17

Saturday, August 20th 2011, 9:35pm

Thanks for replying Fluffy. Lucky you being in the UK! I haven't been back since January and I miss it so much.

I have already stopped the steroids. I took them for longer than they told me to then did the half dose for 8 days but I wish I had continued with them now, at least until my scan on Monday. My DH was stressing out about me taking them though because I continued taking them after they told me to stop and he was thinking it could harm the baby. I haven't had any symptoms for the last few days though and now I'm really worried that something has gone wrong because of me stopping the steroids.

I did have to get another prescription for the steroids and also for the progesterone and it is pretty scary how they'll just write the red paper for anything! I took a whole "shopping list" of things I wanted including the medicine, blood tests, referral for scan and endocrinologist appointment and came away with a handful of red papers!

It looks like none of the clinics are great in the aftercare then. I couldn't believe it when they said they weren't going to give me a scan! Are you planning to give birth in Italy or the UK? I'd much prefer the UK after the indignity of a hysteroscopy and IVF in Italy but sadly I don't think it will be possible.

Maria72

MODERATOR

    Italy

Posts: 13,772

What's Up?
ohffs

Thanks: 105 / 45

  • Send private message

18

Saturday, August 20th 2011, 10:16pm

Hi Chava,

in Italy you are responsible for your own health care so if you tell the GP you have been given drugs they will prescribe them for you. Please don't lie to them just to get the drugs. If the clinics has told you to stop, then stop. No one here is a doctor and we are not here to give medical advice. Steroids are powerful drugs. A lot of people underestimate them as they look harmless little tablets but they are not.

Most IVF clinics also here in the UK won't provide any after care. You need to find a gynae that works in your local hospital so you can get the free prenatal care, getting the red forms from your GP. Ask people you know for a good gynae in your town.

I am Italian and I found the healthcare here in the uk hard to understand to start of with. It is always difficult. Italian healthcare is as good as the uk, if not better (for me it's better cos I understand how it works and I feel safer), you just need to find your way round it and get used to a different way of doing things. They are less careful with being sensitive, but that doesn't mean that they don't know what they are doing.

Good luck and give us a shout if you need help x

This post has been edited 2 times, last edit by "Maria72" (Aug 20th 2011, 10:31pm)


Maria72

MODERATOR

    Italy

Posts: 13,772

What's Up?
ohffs

Thanks: 105 / 45

  • Send private message

19

Sunday, August 21st 2011, 9:09am

Hi girls,

just for you info I found this: http://www.salute.gov.it/imgs/C_17_norma…53_allegato.pdf It's in Italian. "Escluse dalla partecipazione al costo" means you don't have to pay for them

It's a list of all the free things/tests you are entitled to in Italy. However if you choose to go to a gynae that does not work in a Italian nhs hospital you will have to pay for his/her time.

Take care

  • "Chava" started this thread

Posts: 273

Reg: Sep 29th 2010

Location: Milan

Thanks: 8 / 0

  • Send private message

20

Monday, August 22nd 2011, 3:38pm

Hi Maria

I did not lie to my GP, I stopped the steroids. I only got a prescription for another box because I was told to take a half dose for a week before stopping and I did not have enough left.

Also, I did not mean to imply the medical staff don't know what they are doing, I am just frustrated at the way some thing are done here. For example, as I mentioned earlier in the thread I was told at my last consultation to do a pregnancy test on the 1st August and to stop all therapies. The unit is closed for the whole of August so no chance to speak to anyone for advice. Eventually we spoke to a nurse from the same hosiptal but a different unit and she called a doctor on holiday so it made me not feel confident about the advice I was given. Also, it was a good job I got hold of someone because I was told to continue with some of the therapy which is different from the advice I was given initially.

About the lack of aftercare, I was told I would need a scan but wouldn't be able to get one because so many places are closed for the summer! It is difficult to know what to make of it. If I don't really need a scan then fine but if I do, I feel that I should have access to one.

I have had no problem with the actual procedures I have had done here but I felt that things coud have been done in a more dignified manner. For example, when I went for embryo transfer there were 7 of us having transfer on the same day. We were all taken to a waiting room and told to strip from the waist down. We were then all standing around in the room (there were no chairs) half naked waiting for our turn, it was mortifying (I was the lucky one who wore a skirt that day!) When each lady had had her transfer, she was wheeled on a trolley down the corridor and back into the waiting room without so much as a cover over her. Another time, in a different hospital, I had a hysteroscopy as a day patient. There were no curtains around the beds and women were given internal exams in full view of the rest of the ward. Coming from the UK I am not used to things like this. I am afraid to give birth here in case there is a similar lack of privacy.

Thanks for the information :)

mim

MEMBER

Posts: 1,139

Reg: Dec 9th 2008

Location: Uk/ London/Middlesex

Children: One Angel baby Sam in heaven and proud Aunt of many/ One Precious Heart baby born 11/04/2012

What's Up?
I AM BACK UPDATE SHORTLY HUGS TO ALL OF U

Thanks: 4 / 3

  • Send private message

21

Monday, August 22nd 2011, 3:50pm

Hi Chava ,just a quick answer form me too , i also have autoimmune disease and I am on prednisolone , I have been told by my rheumatologist to take them until week 12 at least ,and corticosteroids are safe in pregnancy for example prednisolone is normally given up to 20mg a day but in some severe cases 60 ,my doctor said ,as for aspirin ,I am on clexane injections but don’t have blood problem just because I had ohss , for people that have blood disorders from what i understand they take aspirin 12 week and more, as for progesterone my clinic stops it at otd but I went to my gp and got prescription for up to 12 weeks , I have read enough to know that no harm it will do if anything it may help ... where are you? Can you not see a specialist to advise you on your illness and baby?
TTC#1SINCE2003
Me34Pco&Pcos1996
DH39varicocele opp06
CLOMID05,6mts09
lapdye,ov.drill2oct 09,too many treatments to mention
Shock natural:BFP:My miracle baby Sam Corey lost 17/01/11 4.30
Lupus,antiRO&arth

IVF JULY/AUG 11 immune / severe OHSS but :BFP: [zx076]saw every week ,BORN WITH SPECIAL HEART April 12




Maria72

MODERATOR

    Italy

Posts: 13,772

What's Up?
ohffs

Thanks: 105 / 45

  • Send private message

22

Monday, August 22nd 2011, 4:16pm

Mim what the doctor has prescribed for you may not be right for someone else. Lots of drugs are safe during pregnancy, but that doesn't mean you take them even if you don't need them.
Please please please don't compare yourself to others, suggest to other people that they should be taking certain drugs or take drugs just cos other people are taking them. We all have to follow our own clinic advice, which will be right for us. It's ok to exchange ideas, but then we always need to go back to our consultants and talk to them and follow their advice.
Seeing your clinic and /or a specialist is the best option.

mim

MEMBER

Posts: 1,139

Reg: Dec 9th 2008

Location: Uk/ London/Middlesex

Children: One Angel baby Sam in heaven and proud Aunt of many/ One Precious Heart baby born 11/04/2012

What's Up?
I AM BACK UPDATE SHORTLY HUGS TO ALL OF U

Thanks: 4 / 3

  • Send private message

23

Monday, August 22nd 2011, 4:38pm

Dear Maria I have not given an advice to take them or not I have described what I have been told please see the end of what I said
and i quote
" Can you not see a specialist to advise you on your illness and baby?"
TTC#1SINCE2003
Me34Pco&Pcos1996
DH39varicocele opp06
CLOMID05,6mts09
lapdye,ov.drill2oct 09,too many treatments to mention
Shock natural:BFP:My miracle baby Sam Corey lost 17/01/11 4.30
Lupus,antiRO&arth

IVF JULY/AUG 11 immune / severe OHSS but :BFP: [zx076]saw every week ,BORN WITH SPECIAL HEART April 12




mim

MEMBER

Posts: 1,139

Reg: Dec 9th 2008

Location: Uk/ London/Middlesex

Children: One Angel baby Sam in heaven and proud Aunt of many/ One Precious Heart baby born 11/04/2012

What's Up?
I AM BACK UPDATE SHORTLY HUGS TO ALL OF U

Thanks: 4 / 3

  • Send private message

24

Monday, August 22nd 2011, 4:49pm

sorry Maria just wanted to add as well I said corticosteroids are safe at the example doses in the example medicine called prednisolone in pregnancy as it has been said by a specialist and I dont feel I have said it in a way to suggest that Chava has to carry on with it , and normally corticosteroids are not given if you didnt need them in the first place ....and again I did not compare myself as you really cant compare lupus with hasimoto and did not say anywhere she should carry on taking them,and I see other girls have also described what they are on ,please I feel like my comment wasnt read and again let me say Chava I said that the specialist in your illness would know best not even an ivf clinic sometimes gives the best aftercare but your doctor who deaols with your autoimmunity.. this is just my opinion please remember that :)
TTC#1SINCE2003
Me34Pco&Pcos1996
DH39varicocele opp06
CLOMID05,6mts09
lapdye,ov.drill2oct 09,too many treatments to mention
Shock natural:BFP:My miracle baby Sam Corey lost 17/01/11 4.30
Lupus,antiRO&arth

IVF JULY/AUG 11 immune / severe OHSS but :BFP: [zx076]saw every week ,BORN WITH SPECIAL HEART April 12



This post has been edited 1 times, last edit by "mim" (Aug 22nd 2011, 4:52pm)


Maria72

MODERATOR

    Italy

Posts: 13,772

What's Up?
ohffs

Thanks: 105 / 45

  • Send private message

25

Monday, August 22nd 2011, 5:11pm

Thanks Mim x

  • "Chava" started this thread

Posts: 273

Reg: Sep 29th 2010

Location: Milan

Thanks: 8 / 0

  • Send private message

26

Monday, August 22nd 2011, 7:33pm

Alarme rosso!

Folks, I'm not going to do or take anything without consulting a medical specialist, don't worry!

Mim, thanks for your input :) I did not feel you or anyone else were advising me to do something against medical advice and I find it useful to hear other people's experiences, even if they are not in the same situation as me.

I would also like to say that I only found out I had Hashimoto's because I read on a forum that my TSH level which was clinically within the normal limits was higher than it should have been for pregnancy. This prompted me to get tested again and this time the level was very high and a further test for antibodies revealed the autoimmune problem.

It was also on this forum where I read that some people with immune issues were prescribed aspirin and steroids. I asked my consultant about it and he recommended me to take them. If it was not for people writing about their experiences on forums I would never have known to ask.

Maria72

MODERATOR

    Italy

Posts: 13,772

What's Up?
ohffs

Thanks: 105 / 45

  • Send private message

27

Tuesday, August 23rd 2011, 7:26am

Just making sure Chava. That's what the forum is about :thumbup:




FERTILITYZONE



MEDHURST – PROUD HOSTS OF FERTILITYZONE