* Author Topic: Help! Immune Issues & Prednisolone!  (Read 589 times)

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Offline daffodil123

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Help! Immune Issues & Prednisolone!
« on: 22/09/20, 11:30 »
Hi,

Yesterday when I went in for EC & checked with the doctor when to start my steroids for suspected immune issues/implantation failure, he said the clinic have now been told they canít prescribe or recommend the use of any immune suppressants to their fertility patients because of HFEA guidance (probably due to Covid-19).

This will be my 5th fresh round (2 ended in failure, one ended in a mmc at 9 weeks & 1 ended in a healthy full term baby). Iíve also had one FET last year from round 2 that didnít work. I was on prednisolone (20mg daily) for my last few rounds & the plan had been originally to go on them again for this round. My doc said the clinic have to now say that do not advise them. Basically, if I do choose to take them it would be at my own risk.

The other factor that slightly complicates things is that Iím already on cyclosporine 250mg bd for severe dermatitis, so I am already immune suppressed & have been in the government shielding group during the Covid-19 pandemic. We are being super careful right now - hubby is WFH, Iím a stay at home mum mainly due to health issues & our DD is not in nursery right now to reduce risks. I was on both cyclosporine throughout and then prednisolone for the first 3 months of my pregnancy with my DD & Iím worried that if I donít go on low dose prednisolone this time it might not work! But then I would be going against official clinic guidance & taking a big risk.

I had double pneumonia and sepsis a few years ago & ended up in the high dependency unit, so I know how horrible something like that can be. Immune/health-wise, I have severe dermatitis/atopy/allergies, hypothyroidism, endometriosis, mild vitiligo, migraines & fibromyalgia.

Has anyone else been told by their clinic that they now canít take immune suppressants like prednisolone? And anyone at a similar stage to me?! I have a couple of days to decide before (hopefully) ET!!!


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    Offline Pognut

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    Help! Immune Issues & Prednisolone!
    « Reply #1 on: 22/09/20, 15:27 »
    My clinic have said - after some to-ing and fro-ing - that they won't prescribe steroids, but that if someone else will, they'll treat me. We were about to do a FET before all this kicked off. The miscarriage clinic that found the issue I need steroids for have said they can't prescribe them at the moment. So we're in limbo, wondering whether to try to get someone to prescribe them or whether that would be a big risk.

    So much depends on how long this is going to delay us for. We've been TTC since 2012 and this just breaks my heart, I've had enough now. Some said it might be 12 months till steroids are ok'd again, if they don't find a vaccine. But if we go ahead without the steroids, I'm afraid of harming the embryos, which are the last 2 we'll ever have with a genetic link.

    How would you feel about doing a freeze-all cycle and waiting till you can take the steroids again? Is it a make or break thing for you? Is there anyone you can talk to about the effect of not taking them? It's just a nightmare, with everything else - fingers crossed for you. x


    Offline Londonwriter

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    Help! Immune Issues & Prednisolone!
    « Reply #2 on: 23/09/20, 08:58 »
    I agree with Pognut. I'd go for a freeze-all cycle and do a FET later. I have a 7-month-old baby from a freeze-all cycle.

    As an alternative, if you can afford it (and your clinic will let you do it), I would recommend trying IVIG/Intralipids in place of steroids. IVIG is immuno-modulatory, not immune suppressive, which means that it shouldn't leave you immuno-compromised. I found that it fixed my non-fertility immune issues and it might be worth giving a try, as you obviously have a variety of immune-linked/suspected issues in addition to your infertility**. However, it is extremely expensive (~£1,700 an infusion for IVIG and £300 for intralipids).

    I have two kids (one with immune treatment only, the other with immunes and freeze-all IVF) and have never used steroids apart from low-dose dexa before EC to improve egg quality.

    ** Note: My medical problems are different from yours and we don't understand the immune system, so I can't guarantee or promise it will help.

    Offline daffodil123

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    Help! Immune Issues & Prednisolone!
    « Reply #3 on: 23/09/20, 14:38 »
    Pognut & Londonwriter - thank you so much for your messages.  ^hugme^

    That's really interesting that your miscarriage clinic won't prescribe them right now either Pognut. And good point about the vaccine & the chances that clinics might not prescribe them for 12 months + depending on when/if a vaccine comes in.

    The crazy thing in all of this is that I am already immune suppressed being on cyclosporine!  ::) Just in a different way to steroids.

    I also have a few boxes of steroids leftover from my last FET round last year which my GP prescribed, so I could take them? But then I'd feel bad going against the clinic's official advise & it would be even worse if I did then catch Covid-19 & might even get my GP in trouble?

    We have a DD from our fourth fresh round of ICSI who is almost 3 & along with the fact I'm almost 38 with a low AMH, we can't afford to wait around time-wise if we do need to do another fresh cycle. We are doing the Access Fertility's Multi-Cycle Programme too (where 2 fresh rounds are covered) so that complicates things a little.

    It's so hard when you feel like you're going around in circles & don't know what the best thing to do is!   :-[

    Please Note: Fertility Friends does not endorse any type of self medication/DIY drugs administering.  We strongly advise you to seek advice from your GP/clinic on any aspects when self administering drugs of this nature and do not do so without professional medical supervision/approval.

    Offline Cloudy

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    Help! Immune Issues & Prednisolone!
    « Reply #4 on: 23/09/20, 14:52 »
    Itís such a difficult time  ^hugme^

    I think Iíd be inclined do something a freeze all cycle, or consult with a separate clinic for Immunes and run your immunes treatment alongside your IVF: i think Dr Gorgy used to do this, and Iím sure there are a few other clinics that will do just immunes, but I canít remember off the top of my head.

    I definitely wouldnít take anything without medical advice: and if you did you may have to shield. Although shielding has officially ended I have a few friends who are still having to shield due to the immuno-suppressing drugs they take, and obviously this may cause you issues with regards to your lifestyle etc.

    I know itís a really difficult decision and choice, and Iím sorry this is complicating things for you xxx

    Offline daffodil123

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    Help! Immune Issues & Prednisolone!
    « Reply #5 on: 23/09/20, 16:02 »
    Thanks Cloudy9.  ^hugme^ Yes I definitely wouldn't want to take it without medical supervision/agreement. It's just a last minute curve ball!

    Yes I'm already in the government shielding group due to being on another immune suppressant called Cyclosporine, so I'm being hyper-cautious. Shielding is definitely easier said than done! Xx

    Offline pookiepoo

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    Help! Immune Issues & Prednisolone!
    « Reply #6 on: 23/09/20, 18:59 »
    Hello,
    Hope you donít mind mer jumping in this conversation.

    Iím almost 43 and have frozen embryos at my clinic.
    I have a 5 year old daughter through FET at CRGH and immune treatments at Dr Gorgy.

    I have been advised by CRGH that if I go ahead with my FET they advise against immune treatment during the pandemic, especially because I cannot shield. But ultimately itís my decision and I could do immune with Dr Gorgy again.

    But itís really hard. Do I go ahead with FET Without immune and hope for the best? Or so immune and be in rish during the pandemic? Or wait. But how long? My daughter is already 5 and Iím not getting any younger!

    For those who are younger If I was under 40 I would wait. Perhaps freeze and wait.

    Thoughts please !!!

    Thanks

    Offline Londonwriter

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    Help! Immune Issues & Prednisolone!
    « Reply #7 on: 24/09/20, 09:12 »
    Definitely don't take any meds without medical advice ESPECIALLY if you're already on immunosuppressants.

    I understand it's a difficult decision. My personal view is that ladies with no sign of symptomatic immune problems should run without immune meds. They are massively overprescribed and the connection between the test results and fertility are poorly understood. The Chicago tests are definitely not a direct measure of fertility - I had sky-high cytokine levels during my first pregnancy, became pregnant naturally and carried to term just fine (my symptomatic immune symptoms, however, were much improved at the point I became pregnant). Unless you know you have no chromosomal problems or gynae problems, there's no reason to believe your problem is largely immunological and a normal IVF cycle won't work for you.

    I appreciate you have symptomatic immune problems and are already seeing an immunologist and on immunosuppressants, but - in that case - I would question why you need to take pred - another immunosuppressant - as well. However, I'm obviously not an expert.

    I personally would freeze-all and replace your embryos at a later date. This isn't just due to the steroids issue. As a more prosaic point, you are already on the shielding list and a successful pregnancy comes with multiple essential medical appointments to check on the health of a baby. You would be risking your own health and that of your much-longed-for child attending these appointments in the midst of a global pandemic. At the very least, you would be very anxious. So, if it is possible to delay, do so.

    If it helps any, you look from your profile to be 37. I had my first DS at 36 and my second at 40. I'm considering trying for a 3rd DC once I've stopped breastfeeding DS2. I appreciate you have gynae issues (endo) as well as immunological ones, but there's no reason to believe your age-related deterioration in egg quality should be any worse than a normally-fertile woman of your age.