I took 2 shots of Humira 2 weeks apart and 3 weeks after the last shot I retested my cytokine levels. It was the end of May already by the time I tested, my TNF alpha fell from 40 to 38 and my IFN was at 28 now. Although the cytokines hadn’t dropped, we were just glad I hadn’t flared up at least like some other women on the forums had. On the side, I also started a gluten free , sugar free and caffeine free diet to help me lower my inflammations.
When the results were out, we were told that we would have to wait at least 10 days to hear from the doctor regarding further protocol. We were just too naive to worry about our time being wasted and remained patient to hear from the doctor.
In the meantime, I had the baby dream again! It had only been a week since my ovulation but I tested and there it was! A positive pregnancy test all over again! Humira was working on me! I had read about some ladies conceiving naturally on just starting Humira and luckily I was one of those. At the back of my mind I was scared of another chemical pregnancy but 2 positive pregnancy tests within a span of 5 months compared to 3 and half years of nothing but BFNs made me very happy and hopeful about my body being able to reproduce. I tried to remain positive but not too positive because I had been through too much of bad luck over the years.
10 days after the positive HPT, AF arrived. What were the best 10 days of my life were pretty much the worst also because I used to be worried about it not being a viable pregnancy and I used to keep on waiting for the doctor’s response regarding my May cytokine results! I had even called the clinic to tell them about my positive HPT following round 1 of Humira shots – I didn’t get to speak to the doctor yet because the doctor was always just too busy. At times like these a patient really needs the help of a professional but it was something I couldn’t get from my doctor when I really needed it. It was a terrible time for me or lets say my bad luck maybe the ARGC was really responsible with other patients.
Finally I received the call and as expected I was put on a second round of 2 Humira shots 2 weeks apart just like before. Today when I sit to think about it, I realize how much of my time was being wasted by the ARGC on a simple decision of repeating Humira – which I had expected to be the protocol anyway. Luck was just not on my side but the hope inside me never made me feel even one bit of annoyance at the negligence from the clinic’s side.
In June 2015 I completed 2 shots of my second round on Humira and in July I retested my cytokine levels. I really was out of luck – I had flared up this time. My TNF Alpha was at 44 from 38 when I had last tested in May and my IFN was at 32. Bummer.
Waited for 10 days to hear from the doctor for further protocol. Finally the day arrived and I pretty much knew what was going to advised. Intralipid infusion was advised and I did my infusion the very same day. Although sometimes I used to get frustrated on the 10 day waiting period to hear from the doctor, I used to keep my mind occupied and calm. There was not much I could do anyway. I used to tell myself ‘the doctor must be busy treating the pregnant patients and they should be his priority at the moment because sooner or later I too will be pregnant’. These positive thoughts kept me going on and on.
2 weeks after my 1st intralipid infusion, I retested my cytokines and from TNF alpha 44 I had come down to 39. Phew! I was happy for the huge drop. Intralipids were saving me for once.
I am sure you all know the drill by now : 10 days wait to hear from my doctor. When we finally did hear from the doctor as expected intralipid round 2 was advised. I had it administered the same day when I heard from the doctor, not even a day later. I was always committed to treating my condition and the lag was always there from the clinic’s end. Yet I didn’t let that bother me and I continued to remain busy with my daily house chores and kept looking on with hope for my rainbow baby’s arrival.
We were told by the clinic that after 2 rounds of intralipid our treatment would start and hence the day I was getting my second intralipid infusion – I couldn’t stop smiling. It was a wonderful feeling , every step I took towards lowering my cytokines was a step closer to having my bundle of joy finally.
I still remember that whenever I would be waiting to hear from the clinic regarding further protocol, I used to have my phone on full ringer alert and even have my phone besides me while in the shower because missing their phone call was like a nightmare. If I used to miss their call even once and would call them back – no one at the reception would know who called me or for what. It was a complete chaos. I had never been treated that way by any of my previous clinics but my desperate wish to make this treatment work was making me take a lot of crap from the ARGC. Sigh.
Round 2 of intralipids brought my cytokines down to 35 and that was a good figure to begin treatment with. It was end September already and day 21 of my cycle was also near. I knew I shouldn’t wait for the clinic’s response which wasn’t until the usual 10 day waiting period, I wanted my down regulation to start already. I booked a flight and we flew to London before they even called us there. I had to step up for myself, enough was enough.