FertilityZone

Hi ladies, just a quickie. I should be starting stimms and immune tx in a couple of days. Am starting clexane and steriods on day 5. Had been planning on doing the clexane jab at lunchtime (when my DH is at home and can do it for me) as Dr G had suggested doing it in the morning. I'm just wondering if it's really necessary to do it earlier in the day? It would be easier to do it at the same time as my stimms jab (7pm) so then I don't have to make sure I'm at home every day at lunchtime aswell. When did you/will you ladies be doing your clexane jabs??

Also, I'm sorry if I've already asked this question in the past but over how many hours did you have your intralipids iv for? Thanks. xx

hi Fluffy

I did my clexane in the morning before work and then I knew it was part of my routine. (I had to change it as I forgot it one evening!!). Stimms are *generally* best taken in the morning, this is mainly so that by the time you have a scan they have had a full 24hrs to work from the day before.

Intralipids - well it depended on the nurse and the vein they used as to how fast it goes through. I've had them take almost 3 hrs I've also had them run through in and hour and a half! The first infusion will be done quite slowly to make sure you're tolerating it ok, and your temp, B/P and pulse will be taken at regular intervals too.

Good luck!

xxx

Thanks ladies. I've decided from what you've both said, to stick to the plan and do the clexane jabs at lunchtime. That way, as you say Maria, at least it's abit kinder to my tummy rather than doing all the jabs at the same time.

Maria - yes as you said on the cycle chat, I have got my PMA back today. I was at the supermarket today and the song "I can see clearly now the rain has gone" came on and I nearly started dancing!! Also had another sign today - there was a rainbow in the sky when it hadn't even rained!! I know what you mean about ivf taking over your life. Not long for you to start now. xxx

CB - thanks. When are you due lovely? xxx

Another question - I'll be taking my steriod tablet first thing in the morning as I've been advised (by Dr G and ladies on here!) but is it ok to take it on the morning of EC? I haven't been told otherwise but just another worry of mine! Another thing is that when I had my cyst aspirated last week they gave me a jab of antibiotic. I'm assuming that they will probably do this after EC aswell. But is that ok for us immune ladies? Has anyone else been given an antibiotic jab after EC?

For those who haven't read elsewhere, the cyst I had turned out to be an endometriosis cyst which strongly indicates that I have endo. Another thing to add to the list! I've read previously that endo is an auto-immune related disorder so it's just another one of those which I already have! Funny how I've only found out about this now that I'm already having immune treatment and ivf. I have no symptoms at all of endo. I thought I'd write about this for any ladies reading this who have endo or suspect endo and are thinking about having immune testing for other reasons (I'd say have the testing and treatment).

Hi I wonder if anyone knows whether BUPA covers these tests and what I should tell them - part of fertility investigations?

I had rheumatoid arthritis as a child, for ever a sore throat and thyroid cancer in 2008. I found out I was pregnant naturally 2 weeks ago, went for a scan and well...either I have my dates wrong or I have miscarriaged ... I think I need to look into my immune issues!

Thank you for all the useful information you are posting.

xx

Hi Ladies

Thought I would join the chat thread as I am clearly a full blown immunie now!

Phoebe is getting her bloods done through BUPA. I was surprised and wanted to ask how she managed to do that as I didn't think they covered anything to do with fertility tx including investigations. I guess it's too late for me to try as already had the tests done - maybe I could claim them back. I imagine you would need a referal?

With regards to clexane, you can inject in the tummy or legs, so if you wanted to take both clexane and stimms at the same time you could do them in different areas. I have taken clexane in the morning before and in the evening before (different cycles).

I had a negative TB test result today so can go ahead and order the Humira. I tried sainsburys but the manufacturer said they weren't happy to supply them for a private prescription. They said it was about £700 and to go through Healthcare at home. Obviously H at H is more expensive than they are saying, not sure why. Dr Gorgy said that superdrug are supposed to be the cheapest, so will try calling them tomorrow. If not I will call Healthcare at home. Does anyone know how quickly it takes to get the drugs?

Hi ladies. Welcome Bodicea & Beanie. Thanks Beanie - I don't think I could have the injections in my legs though, I'm sure it would really hurt much more! I'm sticking to the tummy now. Good luck with getting your Humira and with your other immune drugs. When will you be cycling? x

Today I'm on day 5 of stimms and have started my immune meds now. Steriod tablet this morn and clexane jab this lunchtime (it did sting but no sign of much bruising yet). Am much more tired than usual and have a headache now but that's probably a combination of things I imagine. I have my intralipids booked with a nurse coming to our house on Monday. Just an update really as I don't feel that I can talk about this side of things too much on the cycle chat.

xxx

Hopefully the steroids will make you less tired. They always give me a bit of a lift! I hope your ILs nurse is nice. I have 2 different ones who come. Both are ince but one is especially lovely. She sent me a card when we lost Grace. So I really look forward to ILs now as I get to have a good natter!

How lovely that your nurse sent you that card. And that's so nice that you can have a natter with her as it must make the time go much more quickly. I hope that you will be getting her to do your ILs for when you get your BFP. Hope you are doing ok, sorry I haven't had a chance to get onto your diary for afew days. I think I read somewhere before that you have your ILs over 3 hours? Dr G said for mine to be done over 1 hour so I hope I will be ok. We are using the same nurse who came to teach us how to do our 1st stimms injection on my 1st cycle. She is ok and seemed to know what she was doing with administering IV drip but I don't think she's ever done intralipids before so I hope all will be ok. She doesn't speak any English but understands some (as I do Italian) but my DH will be here anyway. She will set up the drip and stay with me for 15 mins but she will be leaving then and will tell my DH how to take the drip out! Hope that will be ok but I don't have anyone else here who can administer ILs. Only other thing is that when she came in the house the last time she stunk us out with the smell of cigarettes (I personally think that's disgusting and am extra paranoid these days about breathing in fumes!!)

Am looking forward to hopefully the steriods making me less tired! xxxxx

Thanks Maria hun. I know what you mean. And isn't it a shame that sooo many people do still smoke here. Lots of people here think they are so healthy but the truth is so far from the reality! With the nurse, at least last time she did ask to wash her hands as soon as she arrived but it was her clothes and hair that stunk!!

Are you staying in a hotel for the whole cycle Maria? Is your DH staying with you? Wasn't your AF due on the 23rd?? I'm sure it will arrive in a couple of days but I know what that waiting is like. Royal Jelly has improved my skin aswell but am now waiting for it to be ruined by the steriods!! Maybe the person who asked had pyschic ability and could see what will be happening to you very soon...! That's a very positive way to look at dealing with all those insensitive and thoughtless people! I swear afew people have wondered about me recently but luckily no-one has actually asked.. xxxx

My face became almost square it was so round on steroids but that was after 12 weeks on them! My main weight gain was between my shoulder blades. This time I got a pot belly which I didn't last time, maybe it was down to being on dexamethasone rather than prednisolone? Who knows.

My IL nurses were all great - especially one of them. I loved to see her coming the time used to fly by. She also called the nurse up who was doing my last IL 4 weeks ago to ask if I had a bump yet! And insisted on talking to me to wish me well. Just lovely ladies. I think they get their people skills from being around reeeeally sick patients most of the time (all my IL nurses administered cancer drugs too.)

Maria your AF will arrive on 24th - my bday good day all round!

xxx

no pulling your lovely hair out though!

Just a quickie update on here ladies. Have got EC booked in for this Saturday! On the immune meds side of things everything is going ok. No side effects of steriods yet that I've really noticed. Am still really tired though but am feeling quite positive and excited at the moment so that helps. No bad clexane bruises yet either.

The intralipids went well on Monday. Felt very cold going in (as had been keeping the bag in the fridge!) but that was nice as it's been very hot here this week. When the nurse had to put more into the bag, some of it dripped onto my legs (!) but hopefully it wasn't enough to affect the dose (?). We had the bag hooked up with a coat hanger which was quite amusing (the nurse didn't bring an IV stand). One question I do have though is - because we had to buy a 500ml bag of ILs but my dose was only 100ml, I have 400ml left over. I've put the bag back into the fridge but am not sure if I could use it again?? If I get my BFP then I will be doing another dose/treatment of ILs but should I throw this one away or save it for that? The bag has been pierced at the bottom in the IV connection plastic thing............

What do you think ladies, should I keep the used bag of ILs for a potential BFP treatment or throw it away and buy a new one if I need it?

Another dilemma - I'm booked in for ET tomorrow at 12:00. I have been doing my clexane jabs at 12.30 everyday. Now I'm on 40mg clexane from today (from 20mg). So this timing clashes!! How far in time can I delay my clexane jabs? I guess if we take an injection with us then we could do it at 11.45am - but is this too early? or too close to the time of ET? Or I will have to wait until after ET and do it at about 1pm but again is this too close to after having ET?

Hi Fluffy, I'd be tempted to push out your clexane jabs till later. Given the extra dose, I'm sure pushing out till this eve will be fine and then that ensures loads of time before your transfer to avoid a bleed.

I had a similar challenge before and was advised by the consultant due to my transfer time which was late morning not to do my routine morning jab and do it in the eve the night before. After transfer you can get back into a routine that works best.

Give your clinic a quick call for advise too -Ii think the only issue is a bleed during transfer that you want to avoid.

Best of luck - keeping my fingers and toes crossed for you.

Scooby2 xx

I'd ask the clinic re the clexane and they can let you know. I think it would be better to go later. On all my FETs I didn't start it till after ET anyway.

Re the intralipids, you have to discard it I'm afraid, it isn't sterile any more. It's dirt cheap anyway, so no harm done. Can you not get the 100ml bags?

It doesn't make a huge diff I don't think. On fresh cycles I've always had it from a week prior to EC, but on FETs from ET. All I'm meaning is that the way the pharmacokinetics work of clexane, the levels won't drop that much if you leave it later, as long as it's not hours and hours. This time round I only just restarted it the morning of ET as I had a 2 day transfer. When I had blasto I'd been back on it for a few days prior to ET.

I just think that would be better than doing it earlier, as actually the way the drug works it lasts a lot longer than 12 hours. You could take 40 mg once a day and have the same effect as 20mg twice. I was on that last cycle as there was a 20mg shortage. Some drugs it does matter, clexane the half life is so long that it doesn't, so if you delay a bit it will be fine but do speak to them to check.

Hi Fluffy, I guess you will have taken action by now - so I hope you got your clinic to support you on this one?!

Well hopefully all is well with your transfer and you're resting up.

Take care.

Scooby2 xxx

Thanks Scoopy, Ruthie and Maria for all your advise. I read your posts yesterday morning and took a mental note of them. Didn't have time to reply then as had to leave the house to get to the clinic and then last night I was too sleepy and tired...

All went very well with my ET yesterday. We did the clexane jab after the ET in the end. It was just over an hour late but from what Ruthie says that should have been ok. I'm on 40mg once a day (Dr G didn't specify a time, he just said morning/lunch so we normally do them at 12.30). I was on 20mg once per day before EC and 40mg once per day from the day after EC. Anyway that little delay in timing from yesterday is over now and we can go back to our normal timing.

We didn't really discuss this with our clinic here as we didn't get the chance. My ivf doctor here was very clear from the start that she didn't want to know about my immune meds. I've had everything prescribed from Dr G but as I'm not cycling with him I don't really get continual support on the immune meds side of things. I'm abit on my own out here on the immune side which is why I'm so grateful to have you ladies.

I will throw away the left over intralipids. It was silly of me really thinking that I could save them! As you say, they are really cheap out here anyway so that's not an issue. For some reason they don't sell the 100ml bags here (only 500ml bags). Now I remember Erkani saying afew months ago that she had the same problem here with having to buy a bigger bag and then having to throw the rest away.

I'm just praying now that my immune meds will be doing the job and that implantation will be happening later this week. I only got 4 eggs, but that I'd expected with my AMH and because I was on short protocol. But they were good quality and of the 3 that fertilised they have made very good quality embryos (the doctor said beautiful good quality embies!). So this confirms to me, even more so now, that my problems have not been with egg/embryo quality but with my immune issues.

Glad ET went well honey, now rest up and chill!

xxxx

Hi girls have got my appointment at Care Manchester with Dr Patel & just wondered if any of you have seen him? Sending you all lots of luck & hugs xx

Today I had my 2nd Beta HCG result and it's 515.91 now!! (16dpo). So I think that's all good.

Just wanted to say that I can put this success down to many things ......

...... But mainly I know that my success this far is hugely down to the immune treatment/drugs/protocol which I've done with Dr Gorgy. If any of you are considering immunology but aren't sure then I would say definately look into it and have the tests done.



Have got huge black/purple clexane bruises still!! (worse on my right side of tummy).

Having my 2nd Intralipids treatment in half hour!!

Hi girls I have had the immune tests done and the results are basically that I need high dose of gestone injection as I am not producing enough progestrone and I need steroids and interlipids. She also mentioned the lit treatment, but said as this is controversial wouldn't recommend it.
My question is has anyone had medicated fET with DR and all these extra drugs? And if s when do you start the drugs? How does it work? Never done a FET before only fresh cycles.

Fluffy I am so pleased for you!

Oh I am so sorry fluffy was so concerned getting my post on there before work I totally forgot to add my many many congrats to you your levels have sky rocketed looks like baby is bedding in for a nice cosy 9 months xxxxxxxx

Congratulations Fluffy so pleased for you xxxx

Hi Fluffy congratulations - I'm just new to this sections so it's lovely to join on the back of such good news!

Mistykins - can I ask did they pick up that you were not producing enough progesterone from the Level 1 or 2 tests? Just I have a feeling that may also be my problem as I always bleed before OTD.

Currently waiting for an appointment at Care Nottingham...apparently theirs a wait until August time, so currently swotting up on Dr.Beers book until I hopefully find out whats being going wrong all this time!

Thanks Maria, I'm hoping to be able to get the sorted soon so at least I'll finally be able to find out whats been going on!

Hi Girls

Nice to see there's a immune chatter place, I've just been going onto the ARGC thread as it seemed like the only place to chat about these things, and people have been so helfpul there.

I'm waiting to be told officially my immune results, but have already been told I can't start my cycle yet and will have to have Humira. Just wish they would hurry up about it so we can start, it all just seems to be one delay after another!

Fluffy, many congrats, it's so great to hear success stories.

j x

Hi Jewels and welcome to the immunies bunch!

Hello Ladies....

I'm sorry to barge on to your page - but I was hoping I could ask you all a few questions?

I recently experienced my 2nd miscarriage in 4 months following 2 years of infertility treatment. We had our pregnancy successes on: Menopure injectibles, Pregnyl, Dexmethasone (steroid), asprin, folic acid 5mg and metformin. However both pregnancies miscarried before 7 weeks. My gyno now wants to test both my husband & I for immune and chromosone problems. We are waiting for his letter to arrive with the GP and will then do these tests. It might be worth noting I was on 2mg of dexmethasone daily from day 1 of my period. At week 6 of pregnancy we saw a very healthy embryo that had 'implanted excellently and the sac and amniotic fluid looked great'. I then dropped my dose of dexmethason down from 2mg to 1mg a day from week 7. By the week 8 scan the embryo had suddenly stopped growing and the heart had stopped beating. Now this could be nothing or it could mean something?

I have been taking time off work to recover emotionally and have spent a large amount of time researching both chromosone and immune issues. I am beginning to wonder more and more whether I might just have an immune problem. Although I won't know for certain until I have done the tests, I just have a strange gut feeling.....

Firstly my mother had 4 miscarriages before finally managing to go on and have 4 children. All of us were conceived with clomid as she struggled to conceive naturally (this was back in the 70's so the reason for the miscarriages remained unknown). She is now beginning to wonder having re-experienced this with me, whether she had had an immune problem all along? I have looked this up & although not hereditary there does seem to be a link between relatives and immunity problems.

I have struggled my whole life with infections - consistently ill until aged 9 when i had my tonsils and adnoids removed. I always get sore throats and suffer with lots of reoccuring yeast problems (pitoriosis versicolor, thrush, bacterial vaginosis). I seem to have a strange sensitivity to alchol & sugar and the next day have 'sensitive skin' almost like sunburn. This sunburn feeling also always accompanies a sore throat or mild cold (I experienced this at 7 weeks pregnant around the time the embryo died). After a night out drinking I always lose my voice completely - very hoarse. I can (and have) suffered from severe fatigue and dizziness at random points each month and have problems with low blood sugar which I always put down to PCOS (despite being told my PCOS is very very mild). If I don't eat i become very weak. I have dermetological problems like itchy hands (when stressed) and heat rashes and suffer (and always have) with terrible digestive problems and constipation/bloating.

My mother also suffers (or did) from all of the above and I grew up hearing her say 'They all dissappeared when I finally got pregnant'...... hmmmmmmmmmmmmmmmm????

I just came across this website: Autoimmune Disease Symptoms | List of Common Symptoms of Autoimmune Disease which assossiates almost everything I have written above with autoimmune problems... now it could all be complete balony & i could be desperately trying to find a 'cause' for my miscarriage that doesn't yet exist- or I might be onto something????

So I just wondered whether you have suffered with symptoms (that were somewho unexplained throughout your life) that you now put down to your immune problems?

P.S. I should also add I have broken out in a red itchy rash all over my arms, legs and bottom & just went to see my GP explaning to her about the miscarriage and coming off drugs and she said it might be a reaction from my immune system to the miscarriage.

Anyway - just some thoughts I had to get down on paper. Maybe you can help?

xxx

Hi Maria72!

Thanks for getting back to me so quickly!!

You are right a test is really the only way to know for sure - actually maybe you can help there.... I mentioned the test to my GP this morning and she had no idea what i was talking about and said she had to wait for the letter from my gynae. Do you happen to know what the official name is? I know everyone calls is Level 1 on here but do you know of another name?

Thank you Maria,

Hi Butterflybee.

Welcome to the immunies! I found your post very interesting reading. I recognised alot of what you said. I definately think that you have immune issues and I really think that you should go ahead with the testing. You can get your level 1 tests/recurrant miscarriage testing done with your GP. Some GPs will only do them if you've had 3 miscarriages though so yours will do them (but if not then an immune doc can do them). Then you should look into choosing an immune doc/clinic to do your level 2/Chicago tests - the full immune tests - have a look around this section for info on clinics and on testing.

I have always known that I had immune probs but never knew that it would affect my fertility until my mum started reading things on this actual website! I researched it further (on here and on other sites) and went ahead and had the testing. I am still taking immune drugs now and am 10 weeks pregnant today!! I had glandular fever/epstein barr virus when I was a teenager and was ill with it for afew years ... it progressed to ME/chronic fatigue syndrome and I have had that ever since (I will always have it but have peaks and troughs and am mostly ok and funnily enough, now that I'm on immune meds and am pg I haven't really been suffering with it - my tiredness at the moment is about the same as other ladies in pregnancy). I have also always had problems with my tonsils (had them removed when I was 23), sore throats, yeast infections, sugar intolerance ... and other things that I can't even remember right now. I think all the things which you describe are immune related and that you are looking down the right route now. I just wish that more doctors were aware of this!!

Once you've had your testing done, you may find out that you need more/stronger/higher doses of immune medication.

Best of luck. And remember that immunology is not balony and that it does work!! And it will for you too. xxxx

Maria & Fluffy!

Thank you both so much for your replies. Both really so interesting & helpful. I almost had a eureka moment yesterday when I started looking into immune issues - it may well help to explain a huge amount of my health issues over the years that have been otherwise hard to understand. Obviously the tests will be the only way to know for sure though so I'll be eagerly awaiting the results. My gynae is a specialist fertility guy (a friend of my dad'x on harley street - we've been very lucky) so we'll do as much as we can through NHS but anything we can't do will have to be done through him. We looked at our finances recently and decided this was by far the most expensive thing we've ever invested in - bar our mortgage!!! But all so worth it.

I will keep you posted with the results. Thank you for your replies - very helpful!

xxx

Hi there BB it sounds like you have severe histamine reactions to stuff too which is one of the markers tested for in level 2 tests.

My mother had 5 m/c between my older sister and me and my younger sister had a child and then 5 m/c. So I always thought that there might have been something behind my m/c. Immune testing may be one of the most expensive things, but yes you're right very very worth it. Big hugs.

xxxx