Back in September, when my Rheumatologist confirmed that the latest in a string of biologics (Infliximab), wasn’t working, a couple of other doctors were brought in on my case. They discussed my treatment options between them and it was decided that I would try Humira as a last ditch attempt, while being referred for Stem Cell Therapy / Bone Marrow Transplant. The reason I say ‘last ditch’ is that I just don’t seem to be responding to the biologics anymore, possibly because I have built up antibodies to certain things or maybe because I have more than one active inflammation ‘pathway’ to block.
My Rheumy admitted that he wasn’t very optimistic about Humira longterm but felt that it may just tide me over long enough to get the SCT/BMT arranged. I have my first appointment with the SCT/BMT team on the 28th November but also received an appointment to see one of the other Rheumatologists, Professor Moots at Aintree, today and felt that this would be a good opportunity to discuss my treatment options again and hear a separate opinion on things.
It was a long afternoon. I was given a questionnaire to fill in about my daily functions and ability and felt a bit uneasy at seeing my new flat folder of notes instead of the stacks I have at my own Rheumatology department. What if this doctor knew nothing about me and I had to start from scratch? I’d been waiting for over an hour when a nurse came to talk to me and explained that since the Professor’s clinic was running quite late I would have to see the registrar. Obviously, as far as they were concerned, I was just another new patient and I had a struggle to tell her the reasons why I needed to see the Professor. Not wanting to go into too much detail in front of a waiting room full of people, I think she thought I was just being awkward but eventually she agreed to let me wait the possible further two and a half hours.
I got a bit tearful at that point. I realised how much I had resting on the appointment and started to wonder if maybe I’d built it up too much. I was suddenly convinced that the doctor wouldn’t have time for me; by the time I saw him (it was already after 4pm) he would surely be wanting to go home and have his tea, not discuss a complicated case that suddenly appeared in front of him…
But I was wrong on that count thankfully. When I entered the room he had some letters from my Rheumatologist in front of him and reassured me he was familiar with my case. I can’t tell you what a relief that was. He went over my current medication and also my responses to medications I’ve tried in the past, then said I had three main options:
1. The Stem Cell therapy: He asked how I felt about this and I replied that I was obviously daunted by it and that I was also concerned about the effect it would have on fertility, since we still hoped to have a family one day. As soon as I mentioned this, he talked about referring me to an Obstetrician and said that maybe it would be better to consider the other options available first, including getting pregnant in the near future – he actually said he would be happy to prescribe pregnancy and that there was a chance of remission but even without it that I shouldn’t dismiss the idea. He told me that as a young, engaged woman with family plans, the Stem Cell therapy should really be a last resort. Yes, it may still come to that at some point, maybe even soon; but those plans made trying even the tiniest possibility worthwhile. And I totally agree.
2. Humira: Again, he agreed that it was a longshot but one worth taking. I mean, I haven’t got much to lose from trying have I? I responded to Enbrel for about seven years and Infliximab for a few months; Humira is a similar drug, so chances are I’d have some luck with it. The application went in during my hospital admission back in September, so I should hear something about starting this very soon.
3. Rituxan: This is another drug that was mentioned by my own Rheumatologist but for some reason he went with Humira instead, perhaps because of previous anti-tnf success. Rituxan works in a different way to the other biologics I’ve tried but is not usually used in Still’s Disease as there is little / no evidence of it helping. However, I tend not to respond typically anyway so I wouldn’t rule it out completely. The other thing he said about this option is that Rituxan can actually reset your immune system after wiping out your B-Cells. This could mean that the antibodies I have formed would disappear and so biologics that helped me in the past, could potentially work again. This is very appealing to me and something that I’m going to look further into. Even if the Rituxan itself didn’t help my Still’s, I could benefit greatly from this immune system reset – I guess it’s just a matter of what the chances of that happening are and how long it would take.
I also asked about the remaining two ‘current’ biologics I haven’t tried – Cimzia and Simponi, both of which received a similar response to Humira – they are very similar drugs, but there is a small chance that the difference between them could make all the difference to me. Then I mentioned the suggestion of combining biologics. For anyone else who is curious, the reason that this isn’t really an option is that despite blocking two separate inflammation pathways, the improvement in people’s overall condition is minimal but the occurrence of side effects is much greater and more severe.
So that was it really, apart from the fact that he has also referred me to an Obstetrician that specialises in pregnancy in people that have inflammatory disease – the before, during and after care. This will give me chance to discuss my concerns about having a family as a whole, because they’ve always been there; it’s just that the prospect of the chemo brought them to the foreground. Maybe that’s a good thing.
My plan for now – get started on Humira, go to the appointment at Sheffield to hear about the Stem Cell therapy, speak to the Obstetrician in the new year. Look into trying Rituxan after that if needed. Any decision on the Stem Cell therapy etc will hopefully be able to wait until after then.
Definitely feel a bit happier and more like I have options available,
We can but try!