Appointments and more appointments

The past weeks I’ve had appointments with 4 doctors from 4 different countries. No wonder I’ve been feeling confused and overwhelmed…

I’ve mentioned the skype appointment with Dr. Braverman before. After that, on March 14th, I had my long-waited and hard-fought for consultation with the local RPL specialist.

Having already been through his clinic’s mandatory information meeting, I didn’t get my hopes up too high and it went pretty much as I had expected. We went through my history and he looked at the test results I already have. He then explained that since I’ve only had 3 miscarriages (the ectopic doesn’t ‘count’) he would usually ask me to try again without any medication or treatment. However, he believes there are some ‘clues’ that the cause of my losses is immune related. Therefore he can offer me to try hydroxychloroquine. He wants to start a double blind randomised placebo controlled trial on this drug and I would participate on the pre-trial (if I understood correctly, they need to have some success cases to use as argument for starting the actual trial).

He explained the scary side effects – worsening of my psoriasis and possible retinal damage, potentially causing blindness, though only in very rare cases – and advised me to take it for 2 months before trying to become pregnant again. He also requested a few more tests.

I was a bit surprised he was ready to make a diagnosis and suggest treatment right away. And I was glad he had something to offer other than ‘tender loving care’. Hydroxychloroquine has been successful in a few cases in the UK, but I worry about potential side effects harming the baby, since I’d have to continue the drug until around 20 weeks gestation. The doctor didn’t comment much on that, so I’m waiting for our follow-up appointment to ask more about it. Not to mention that the idea of possibly (even if very rare) becoming blind and still without a baby is quite scary.

But mostly I was discouraged because he was not able to tell me why he thinks this drug can help my particular case. When I see a doctor, I always have the expectation they’ll say ‘I believe this particular area/mechanism/thing is not working on you, and we’ve seen this drug help in such cases’. If he would have phrased it like that, I’d been taking the drug already. But I’m not sure whether he has a good reason to suggest me this drug and just wasn’t so clear about it, or if he’s just giving it to ‘anyone’ desperate enough to try.

A few days after that, I travelled back home (to Zika infested south-america) and saw a RI (reproductive immunologist) there. Again, we went through my history and test results and he ordered a cross-match (also known as LAD) test. This supposedly checks how my immune system reacts to the presence of my husband’s immune cells. They believe if it doesn’t react enough, the immune mechanism that should protect a new pregnancy is compromised, causing miscarriage. The treatment for this is LIT, basically a ‘vaccine’ made from my husband’s blood products (lymphocytes).

When I received the results, showing very little reaction, and the recommendation of the RI that I get 3 doses of this ‘vaccine’ prior to becoming pregnant and 4 more doses during pregnancy, I was quite excited. It felt good to finally have something wrong, some kind of answer that could explain my losses. And not only that, but something that could be fixed, with a rather simple procedure.

I was still worried, though. Besides the practical issues of either finding a clinic in Europe willing to do this treatment on me, or having to stay in my home country for at least 6 weeks, I kept thinking: but is that the only thing wrong? I mean, this RI didn’t run a lot of tests, so maybe he’s missing some more immunological underlying issues.

Moreover, I remembered from our skype consultation, Dr. Braverman mentioning he didn’t use LIT any more because he didn’t believe LAD could really tell who could benefit from it, so he prefers to use other medications. Since he didn’t elaborate more on this, I was left wondering why he doesn’t believe in LAD. I searched and found this and this (or check here for a better explanation). No need to say my hopes were crushed. This result by itself doesn’t explain anything and the suggested treatment might even be harmful.

At last, we’ve met with the doctor in Spain who will conduct our treatment, if we choose to follow Braverman’s protocol. We travelled to Barcelona last week to meet her and draw blood for all immune testing requested by Braverman (17 vials!). I was very happy about that appointment. The doctor was very kind and receptive to questions. She very humbling talked about the many patients from all around Europe she has treated under Braverman’s supervision with great success. It was very clear to me how much she trusts and admires Braverman. I thought it was very reassuring.

After all these appointments, what I can say for sure is: Reproductive Immunology is certainly not a consensual area. Braverman told us on our skype consult: ‘A lot of doctors call themselves Reproductive Immunologists, but most of them don’t understand enough of the immunological field’. At first I thought he was being a bit arrogant (though he might be entitled to it), but now I’m starting to believe he’s right, sadly.

Many weeks of doubts, uncertainties and worries later, our only decision so far is to wait for our next appointment with Dr. Braverman, when we expect to have the immune test results and his protocol suggestion. This will be on May 17th. So, at the earliest we can start trying in my June cycle, which means more waiting (sigh).

But I’ve come too far, waited too long and spent too much money to simply rush into a decision and a treatment before hearing this last advice. And I really hope it’s the last, because I’m done with all the appointments and all the mixed feelings and confusion that comes with it.