FertilityZone

Hi Maria,

Just wanted to say hi. Nice to see a new home for us immunies.

lots of love,

Ri

This is a brilliant idea Maria. The ivf cycle chatter is great for all ivf stuff but us immunies tend not to talk about immune stuff on there as we don't want to confuse the other girls (and they might not know what we're talking about!). The main section on here is great for immune questions, info, facts and specifics about testing and treatment but this will give us a place to discuss feelings, emotions, worries, side effects and questions about immune tx etc. I will find it easy to separate the two chatters as I see the two things as separate (maybe because I have two different docs/clinics).

I seems to me that none of the immune docs are conducting medical trials and only keep stats of successes (I'm guessing that's what they do). Maybe they should consider offering free treatment to those willing to be included in a medical trial. I would happily do that in order to help other women but because of my location I'm not sure that I could (I would also worry about it causing me extra stress aswell, which I'm sure lots of women would worry about). Maybe FZ could start some stats of success stories and have them published?

xxx

Can I continue/start the chatter with a concern which I've had over the past week and didn't really have a place to air it on here until now. I will start a diary soon but as it's more immune related I will write about it here. As some of you know, I had my cycle canx this month due to a cyst. At my day 5 scan I did have some normal/good sized follicles on my other ovary. The clinic didn't tell us whether we could/should BD this month so anyway we did. When the cycle was canx I stopped/didn't start my immune tx. I contacted Dr G about this and he said that there was still a chance I could conceive again this month but to wait to see if I get a BFP and then start immune tx then. (I also asked him about doing a natural cycle with immune tx next month if I'm not pg and if the cyst hasn't gone and he said I could). But this week, around the normal time of implantation I had some minor implantation symptoms and an immune flare (which I get alot of months around implantation time). I'm worried now that I might have wasted another month and lost another embryo/s.....

HI immunies!
Maria - its great to have a place to come and chat about this stuff. Thankyou! As Fluffy says, i dont like to talk to much about it, other than in my own diary, cause i dont like to confuse or worry other girls who dont know about immune issues.

Fluffy - i wish i had a crystal ball to help you know where your body is at this month. I had a situation in feb where i found out i was pregnant 2 days before my period was due. I phoned Dr G in a panic and he faxed a prescrition to healthcare at home, which they recieved within the hour. I got my drugs delivered the next day and so got started immediately on the immune stuff. So, dont worry. If necessary, Dr G will respond quickly to any unexpected pregnancy and your immune drugs can be there in no time!

Rii - Hi! I didnt want to write on here and not say hello to you too. I know youve had a very tough time recently and i hope you're doing ok.

Hi Ladies hope you don't mind me joining you on here we're looking to go down the immune route & just wondered if any of you know about Manchester Care's immune treatments? We would love to go to Dr Gorgy but unfortunately the practicality of it, living so far away & working full time is an issue. So we were thinking of going to Care but doe's anyone know if they do all the same tests that Dr Gorgy doe's? Sorry for the questions but very confused what to do, been reading Dr Beer's book which is helping me understand the immunology a little!!!!

Hi Fluffy just wondered if you can tell me what you mean by an immune flare? xx

Morning Immunies! Hi Amy, Maria, Nicpic & all other immunies.

Amy - I haven't been to Care Manchester (and don't know anything about them) but I'm a patient of Dr Gorgy. He is one of the only immune docs who will test and treat you for immune issues who gives you the option to cycle with him or elsewhere. My ivf clinic is in Italy and so I'm doing it completely separately. This is one of the reasons why I chose Dr Gorgy. Also I think he is probably the doc whose work is the closest to Dr Beers. If you decide not to have your testing done at Care then you can go to Dr Gorgy for one appointment (consultation and blood taking) and you can have your follow-up by phone (which is what I did but I would recommend trying not to speak to him on the phone as he has a very strong accent and I hardly understood anything!).

Re the immune flare - I get it alot of months. It is always about a week after ovulation, around day 21 of cycle which is when implantation usually takes place. I get changes in temp (sometimes very cold but occasionally hot), sore throat, swollen glands and general tiredness and feelings of being unwell. It's that feeling when you think you are about to get the flu. As Maria says though, everyone is different and might have different symptoms with an immune flare. Or some people might not notice it. I remember Bravegirl saying that when she was on her immune treatment that she didn't get it. My symptoms might be more personal to me as I have suffered with glandular fever/epstein barr virus (and ME) before. Dr Gorgy thinks that my embryos have implantation failures due to my immune issues and either don't implant properly or implant but then are lost/rejected.

Hi Nicpic - was it you who also has low LAD? Aren't you with Dr G? Are you going to have LIT for this cycle?

No worries ladies with getting the drugs here. I have them all stocked up in my cupboard ready to be used. Just need to get some more 40mg clexane and another box of steriods from the gp here as he wasn't able to give us too many at once before! You're right Maria, they really do seem to throw all drugs at everyone very easily here (I think they over prescribe antibiotics here for example...but that's another issue!). But this has made it alot easier for me with getting ivf and immune drugs!!

Yesterday and today I've got really severe stomach pains. Yesterday I was doubled over in the supermarket while buying garden furniture and it came on really suddenly. I don't know if this is a bad sign of implantation failure (I suspect it is), a sign of high progesterone due to being pg (very much hopefully, but I do very much doubt it) or a sign that the cyst has ruptured or is dispursing (bloody hope so!). Am also very very bloated.

Maria, I also hope they don't ring you on your wedding day! Make sure you turn your phone off and they can leave a message which you can listen to afew days afterwards. xx

No, I definately wouldn't want a placebo in a medical trial. But surely there's an alternative way??

Love to you all and

Hi Amy

Having been treated at CARE Manchester - so ask away!

I think it's stress hun. It's amazing what stress can do to the body. Don't worry about it over the next few days (it would be too early to test anyway now). Relax and enjoy this week

Maria, I wouldn't be thinking in terms of immune flare, or even of stress. You have a mild temperature and a rash. By far the most likely thing is that you've picked up a bug of some sort, and rather than being an 'immune flare' it's your immune system responding, quite rightly, to an infection. I'd see what happens by tomorrow, but with the wedding so close, if you've still got symptoms tomorrow then I'd get on down the doctors! Chances are if it's a little bug, you'll have fought it off by then anyway, but better to be safe than sorry.

xxxx

Hi Fluffy thanks for clearing up the immune flare thing, I have suffered alot with feeling under the weather & my glands in my neck been swollen & sore at certain times of the month my GP just kept saying poss a virus but with both IVF cycles after the embryo transfer I got very sore swollen glands in my neck & felt like I was getting a bug or something but I am starting to wonder if it was an immune flare! Thanks everyone xx

Hi ladies i really hope one of you ladies will be able to help me with something.....

Well iv had 1 fresh cycle of IVF back in august 09 which ended up being a chemical since then iv had 3 FETs and my last 1 back in september 10 it also ended in a chemical, i was also taking 30mg of prednisolone and 75mg of aspirin. With these TXs iv had Ulcerative Colitis which is an auto immune disorder and i believe that this has been the problem as i dont think that its ever been fully under control! In feburay i was suppose to start my next fresh cycle of IVF but i fell really ill with a massive Colitis flare which ended in surgery and having to remove my whole colon! on the up side i no longer have Colitis and no longer have to take medication daily for it! SO my question is if i dont have Colitis anymore does that mean i dont have an auto immune system anymore??? and therefore would not need to take prednisolone with my next TX??? Also i already have a DD which i conceived naturally and had a natural birth so can you just develop an auto immune system??? My cons seem to think its been just bad luck!!! i hate that saying!!! i had reacurrent m/c blood tests done and theyv all come back normal, im just trying to make heads and tails of it all and some advice would be truely greatfull. My next TX starts on day 21 of my next AF and she should be here in about 2 weeks! i so want this cycle to work so im trying to find out as much as possible.

Thanks ladies. XXX

Oh forgot to mention that in the past 9 years iv had 2 ectopics and 1 m/c! not including the chemicals with IVF! XXX

fluffy - hi, yes it was me who was talking about having a negative LAD and thought about doing LIT. Dr G really wants me to go for LIT but it just doesnt seem to get a good press and everyone i ask about it says they didnt take it. There seems to be a lot of evidence that CARE get the best immune results and they dont even use LIT. My DH is really keen that we start with the IL's and the other immune drugs(clex, pred, asprin) and see how we get on. He wants us to keep LIT as an option for the next time should IL's not work this time. Its been a hard decision not to just do everything thats recommended as i want to maximise our chances but we'll try adding ILs this time and save LIT if that doesnt work.
Like you fluffy, i also chose dr Gorgy because he would allow me to cycle elsewhere. So he wrote me a prescription and my Glasgow clinic has agreed to follow his protocol. That takes out the stress of having to travel to london for immune tx. Like you, i also struggled to understand Dr G but he posted my results out the same day and i worked out what he was talking about after reading them! I'm sorry to hear you felt unwell the other day. Are you feeling any better now? Did you work out what it was that made you ill?

HI Siobhan - were we in the Sept Sweeties and the Jan Jewels together??? I'm so sorry to hear what a rough time youve had since we last chatted on FZ. I'm sorry i cant answer your questions about immune issues after colitis. I just dont know enough about it all yet. I hope someone elese comes along soon who can answer your queries.

Hi Siobhan, lovely to see you.

The annoying answer to the colitis thing is that I doubt anyone can say. Obviously as your colitis was auto immune, it means that your immune system was behaving inappropriately, and attacking your colon when it shouldn't. It doesn't mean, however, that your immune system will attack other things. If you spoke to any immune clinic, they would probably consider you to be higher risk for immune repro issues, because of your history of auto immune disease, but it doesn't mean that you will have a problem. As to the significance after the colectomy, who knows? On the one hand you don't currently have auto immune probs, as it was only ever your colon affected, on the other it means that you aren't now on steroids, and the steroids may have helped treat any repro immune issues, just by the by.

So the real answer is that no one can tell you. You still have the same immune system you always had, and arguably it may still 'over react' and attack the wrong things, but if it was only ever focussed on colon cells, then your reproductive system is safe. I would think that if anything, your risks are lower now, as although it was only your colon affected, when the immune system is over stimulated it can start attacking other things too. People with one auto immune condition, like say diabetes, are at higher risk of others. However, it doesn't follow that you will. To give an example my best friend has asthma, hay fever, numerous allergies, Type 1 diabetes, and lupus, all of which are auto immune conditions, and has had 4 children without problems. I've got no known immune probs clinically, but if ARGC are correct, I have lots of repro immune problems.

However, as ulcerative colitis is so debilitating, it may have been that that in itself was a problem, and I think going into a fresh cycle, having recovered from the surgery and giviing it a fresh start is v hopeful!

xxxxx

Thank you very much for that Ruthie it really helped. this could be nothing but since leaving hospital iv had lots of ulcers in my mouth and throat now! iv got DRs next wednesday to let him know coz its quite sore! you may laugh when i ask but thats not an immune issue is it? i hope your feeling better now. XXX

Yes Maria, Ruthie did give me a good awnser! am i not allowed to ask anymore quetions???? i was just worried about the ulcers in my throat! i used to get them when i was having a Colitis flare! But forget i asked then il ask my DR!

Hi Nicpic. Thanks, it seems we two are in a similar positions with the LIT. I've also found it difficult to find positive stories about it. I think we will be doing the same as you- intralipids, clexane, prednisolone, aspirin for this cycle and hoping for the best and then rethinking LIT if we have to later. I emailed Dr Gorgy earlier in the week asking him what his alternative to LIT is but he hasn't replied, but I'm guessing the only alternative is not having it and hoping that the other immune tx will do the job.

Thanks hun for asking after me. The tummy pains continued until Tues (but not as severe as Sunday) but got better by yesterday. This morning I got my AF arrive one day early so I was abit surprised. I'm guessing now that the pains this week were due to the cyst. (The immune flare from last week was different though and not connected to the cyst). I've got my baseline scan and bloods tomorrow which I'm really nervous about. I'm trying to prepare myself for bad news though. xx

Maria - hi hun, what were you doing on FZ on the morning of your wedding?! I hope that by now you are getting ready and that everything today goes smoothly and that it will be a magical day. I didn't want you to get even more stressed or worried about the immune flare thing only afew days before your wedding. I'm sure it was nothing to worry about and I'm glad that it went and you're feeling better. xx

Hi Siobhan - I also get mouth ulcers at certain times which is connected to my immune problems. But it is best to ask your doctor about it. None of us here are doctors but we always try to help when we can. If you are worried/thinking about immune issues then maybe think about seeing one of the immune docs/clinics who can do the level 2/Chicago tests for you.

Hi Maria! So good to see you back! No my scan didn't go well at all. I've written about it on May Miracles. Really hoping I will be starting on 12 May now.

Hi ladies can any of you tell me the difference between the level.1 immune tests & the level.2?

Thanks Maria hun. xx

Hi Amy - the level 1 tests are your 1st port of call. These are the tests for karotyping, blood clotting issues etc - maybe someone else will come on to give you the full list or a better medical explanation. Some gp's will do these tests for you but I believe that the nhs will now only pay for the tests if you've had at least 3 miscarriages. Otherwise you will have to have them done privately (either through a private lab or through one of the immune docs). The level 2 tests are also referred to as the 'Chicago tests' as the bloods are sent off to the Beers clinic in Chicago for testing. Any of the immune docs/clinics will do these tests for you and which tests you have depends on the doc. Usually they will be tests for natural killer cells, tnf levels, more thorough blood clotting and others (again, maybe someone else will come along who can give you the full list and medical explanations). For the level 2 tests you will always have to pay privately and most docs at fertility clinics (which don't support/do immune testing) will not want to discuss these tests. For the level 2 tests you will pay anything from about £800 - £1300. Hope that helps abit. xx

Hi ladies im wondering if you can put my mind at ease. Im 5 days post 3 day transfer. Yesterday i started to get a sore throat, its still there today plus i have got loads of horrid spots on my face. (i never get spots like this) Could this be an immune flare???? or could it be side effects from the meds Im taking 25mg of steriods and clexane??? HELP X X X

Hi girls just thought I would pop in on the chat I am having the level 1 and 2 tests done in a couple weeks but we are travelling down to a clinic in Wales that do them as they are £500 cheaper than CARE. It called CRMW and so far the phone conversations we had with them they sound lovely, anyone been there? Xx

Hi All,

I have been going through all of my medical papers (again) and looking at the Level 1 tests I had done which showed a platelett issue (low). All other things came back normal. I have been worrying about it a lot because of my premature ovarian failure and wondered if anyone had any info as to whether this is due to an autoimmune problem?

hx

Hi ladies,

I have seen the link for level one tests but my gp has asked me to produce this list does anyone know a site where it looks official just in case he gives me a hard time?

Thank you

X

Hi 2011baby - I also get spots with the progesterone and they could also be a side effect of the steriods (I'm not sure but am guessing). I'm not sure about the sore throat - have you ever had this before around the time of implantation? If not then maybe it's a good sign. But it probably doesn't mean anything either way, it's prob just because your body is going through alot at the moment and unfortunately the skin is one of the first things that suffers when there are other things going on in the body. Take care and rest xx

Mistykins - good luck with your tests. Haven't heard of that clinic before. xx

Hi Hayley - as far as I know those things aren't auto-immune related. I wouldn't have thought there was a connection between low platelets and POF. Did your clinic see the results and comment on them? xx

Hi Maria - am so pleased you've had the call from argc now (they were taking their time weren't they!?) and the humira has worked. Does that mean you will def be starting in May? xx

Hi Phoebe - good luck with your gp. I don't know of an official list. Have you tried googling? I hope your gp is ok with it, my gp refused to send me for the tests (as there wasn't medical proof/records in my file of more than 3 miscarriages in the UK). He did instead refer me to the 'recurrant miscarriage clinic' but there was a delay in getting the referral/appointment and I'd ended up having most of the tests done privately anyway. It's worth having a check at what tests were done before you started ivf (maybe your clinic had already tested you for some of the level 1 things?). Let us know how you get on xx

Hi there and thanks for your replies,

I only ask about the POF and autoimmune because Dr Beer seems to suggest that it can sometimes be as a result of autoimmune issues......I think we will wait and see what happens on this cycle and perhaps think about it again if we need to.

Ta.

hx

I wouldn't worry about the platelets unless they were v v low Hayley. One of the causes of low platelets is a thing called immune mediated thrombocytopenia, which is when the immune system attacks the platelets and destroys them. This is an autoimmune condition. However, it's an acute, life threatening thing, and ussually results in very very low platelet counts. By far the commonest cause of low platelets on a blood screen is that the person taking the blood didn't have v good technique, and the blood clotted slightly on drawing. The clot is made up mainly of platelets, so the level of platelets in the rest of the blood appears low. This can usually be seen when they confirm the results with a blood smear, so wouldn't be highlighted by the haematologist. Also the clotting studies you have done all highlight different parts of your clotting system, so if your platelet count was genuinely low, it would affect some of the clotting studies.

The danger with blood results is that they CANNOT be read out of context. One blood result is meaningless usually. You need to look at all the bloods together to get what's going on.

2011baby - spots could def be due to the steroids. A lot of people on high dose steroids get skin probs. Also the sore throat could be. The whole point of the steroids is to immunosuppress you slightly, and this will make you more vulnerable to infection so a sore throat could mean you've picked up a little something. When on steroids alcohol hand gel has to be your friend! I spent 4 months on them and had the alcohol gel out about 20 times a day! It's by far the best way to stop you picking up any little bugs etc etc.

I'm guessing (but not sure as I've always been on long protocol) that they will do Day 1 bloods to check all is well. Then a baseline scan on about day 5 with hysteroscopy the following day if you're having that. Then I started stimming the next day. After that it was bloods every morning and scans every 3 days, then week 2 of stimms it was twice daily bloods most days.

I didn't have Day 1 bloods, I just started D/R on day 22 I think, then called them on my Day 1 and they told me when to come in for scan and hysteroscopy, but I'm guessing they would want Day 1 bloods for a short protocol.

Hope that helps! Unfortunately you just have to get used to not having a clue what's going on!

The stimm drugs they will change every day, and I mean EVERY day! They check your oestradiol bloods daily, but check FSH every 2-3 days too. I had FSH only (Fostimon) for the first few days, then Fostimon and the FSH/LH mix (Merional/Menopur) together for a bit, then just Menopur for a few days. Presumably if they go for long protocol you'd have to start on day 20something though, as you'd need to D/R first? Just go with it, there's no other way!

Thanks for your help ladies. My spots are getting better now, but still have a sore throat. I never thought about using alcohol hand gel but i will be from now on. Hope you are all well x x x

Thanks Ladies for your replys about the level.1 & level.2 tests we,ve had our last NHS cycle so are looking to go private & think we will have the immune tests done as our consultant has said that the very low fertilisation rate from our 1st cycle is probably an immunology problem & I have a medical history that points to possible immune issues so rather than wasting thousands on a cycle, we think we'll pay for the immune tests 1st. Thanks again for your support & sending you all lots of luck with your treatments xx

Bless you Maria! Keeping ticking off those days. What is humira please?
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