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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!

L

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I have the first of this month’s two important appointments tomorrow.

After my recent hospital admission, when it was confirmed the Infliximab was no longer working, my own Rheumatologist, (who I’ve now been with for eleven years), was at a bit of a loss what to do next with me treatment-wise and felt that we had exhausted all the different types of biologic drug available. He decided to bring in some other Rheumatologists to comment on my care and together they decided to refer me for the Stem Cell therapy / Bone Marrow transplant. One of these doctors was Professor Moots at Aintree hospital and they have since been discussing my treatment between them.

Tomorrow, I have an appointment to see Professor Moots in Aintree; the first time I will have met him. I’m a bit nervous since it will also be the first time I’ve spoken to a different Rheumatologist about everything in over a decade and I’m not sure what to expect – how much will he already know? I’m hoping he has some notes on me or else I could be there for a long time! Will he want to run his own tests and maybe re-diagnose the Still’s Disease himself or will he just want to discuss where my treatment plan is going to go next?

I’m also unsure how much I will get to talk about or ask. Of course I want to ask about the Stem Cell therapy and why this has been decided on as the next treatment option, but I also want to check that there are no alternatives – revisit my Rheumy’s suggestion that I may need two biologic drugs to block two different pathways; ask about any new drugs that are in the pipeline or clinical trials that may be open to me at some point in the future and then lastly, whether he thinks there is any chance of remission through pregnancy before facing infertility with the chemo.

Speaking of which, I happened to come across an article while researching the Professor and this following excerpt gave me a little glimmer of hope:

What has been your most satisfying case?

“That has got to be the case of a girl who had RA. She had seen several doctors and was convinced, because of her condition, that she would not be able to have children.

She came to see me because I look after some of the most difficult to treat cases. We got her much better. She got pregnant and now has a healthy baby boy.

She did not want to accept that she would never have children and thankfully we were able to help her.”

So today I have been trying to prepare myself for the appointment as much as possible; to think about what I need to say and ask and what he might ask in return. As well as feeling a bit nervous, I’m interested to see how it goes and what comes of it.

Hopefully, it will be mainly a positive experience.

L

I’m not going to pretend that I know an awful lot about US Politics and so forth, but thanks to talking with a number of people with Still’s Disease and Rheumatoid Arthritis over there, I do know enough to feel that Barack Obama winning the election was the best result. Especially if it means that Obama Care ie. the Patient Protection and Affordable Care Act comes through as promised.

From what I understand, many people with chronic illnesses such as Still’s and RA will benefit from this Act. I hear sooo many stories of people not getting the medication or treatment that they require because they are uninsured or their finances / insurance doesn’t cover the cost; of people rationing out the much-needed pain relief or sleeping tablets they have and suffering instead… and it breaks my heart.

I know the NHS isn’t perfect and that many people have complaints against it, but I for one have been very lucky in my own treatment of Still’s Disease. I have never had to fight for a medication; when one didn’t work, we moved on to another and that includes the biologic drugs that need to be approved by the PCT. My treatment plan doesn’t depend on what myself or my partner earns and even when I did have to pay for my prescriptions, at least there is the annual pre-pay option that makes it affordable. Then there are the doctors and care itself – I can’t imagine having to sign cheque every time I visit the doctor, have a blood test, an Xray or scan… which is how it works in the USA right? I’m watching ‘The Big C’ at the moment and that too highlights the stresses of financing medical treatment and she is dying.

So many people must go undiagnosed and untreated because they simply can’t afford it. Surely that can’t be right?

But Obama has signed this statute and with his re-election can put it into action. And it sounds like an improvement to me. It aims to reduce the number of uninsured Americans and to make the cost of healthcare more affordable for everyone, requiring insurance companies to offer the same rates to all, regardless of pre-existing illness and so on. This is only my very basic understanding of the situation, but I hope that it means many of the people I hear such horror stories from will benefit from the changes and receive a better quality of care in the future.

If any of our American readers want to correct / add to this explanation to help the rest of us understand better, please feel free to comment.

Here’s to another four years of Obama as President.

L

Reblogged: Pain and the Weather (Poll)

The colder weather has just started to take hold in the UK and once again I’m seeing lots of comments about it effecting peoples’ joints and pain levels, so I thought I’d repost this Poll from last year.

If you haven’t voted already, please do!

Stills Life

For the past week or so, the weather here has been mainly wet, windy and much colder; around this time I noticed that my joints were more painful and increasingly stiff.  I know I was already flaring but there is a longstanding belief that climate has an effect on arthritis; that cool, damp weather leads to painful joints and I’ve always wondered if there was any truth to it.

It can’t be coincidence then, that for me, the worst of my flares have always seemed to occur in the Autumn months. I used to dread September and October coming round –  the start of new terms at college, university and then work were always a struggle – and now it looks like it’s happening again. Nothing has changed in my treatment schedule, yet joints are tighter and I start every morning feeling like the Tin Man from The Wizard of Oz.

I have…

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Since I spend most of the week days at home on my own right now, my fiance and I try and make the most of the weekends to get me out and give me a change of scenery and stop me from feeling too isolated. Even though I’m grateful for small things like actually being able to function and get downstairs,  it does get lonely at times and I wish I could get out more. So today, we visited my Dad for Sunday lunch and my brother, sister and twenty month old niece also came, which was lovely.

I hadn’t seen my niece since Easter for various reasons; mainly, that she lives with her mum in a different area. She has altered so much in that time and is now walking and talking and starting to grow the most beautiful white blonde curls, just like her daddy at that age. It made me feel a little bit sad that we don’t see her more often and are missing so much, but that’s just the way it has to be for now unfortunately.

As always, she was completely smitten with my fiance, who got far more cuddles than I did, but I’m trying not to take it personally! She was very fast on her feet but for the first time I was able to watch her and pick her up – I’ve always been on crutches in the past.  Thankfully, she’s only tiny for her age and I didn’t struggle too much, but it is always a question tucked away in the back of my mind – would I be able to look after a child myself, with all the lifting and so on? But then I think, I’m sure people with more severe disabilities manage. Famously, there was Alison Lapper, who was limbless because of Thalidomide and she raised a son?

These issues are very much in our minds at the moment and being with my niece obviously made us think about certain things. I know looking after a young child isn’t easy for anyone, physically or emotionally; but particularly for someone with such health problems that Still’s brings. Sleep would be a major concern for me, since I need a lot of it and even after just four hours with my niece, I was exhausted. And that’s with being able to hand her over to my brother to take home when she was tired and cranky and screaming.

But I still think we could do it. We want to do it. And being with my niece made me realise that even more.

Anyway, we had a lovely afternoon and evening and now we’re catching up with X Factor before I grab an early night. If I don’t sleep tonight there is something seriously wrong!

Hope everyone has had a good weekend too,

L

I  received an appointment for my initial consultation to discuss the Stem Cell Therapy / Bone Marrow Transplant treatment option in the post this morning. It’s with Dr Akil, who is another Rheumatologist that specialises in Systemic Autoimmune disease, on November 28th. The appointment is at the Sheffield Hallamshire hospital over in Yorkshire, so is going to be quite a trek, but my dad has offered to come with me and my fiance, for support and to share the driving.

The most recent information sent by my own Rheumatologist was a lot more helpful in understanding the procedure itself and I feel like I’ve got my head round things a bit better now.  That doesn’t mean I’ve made a decision, but I’m more open to the idea of discussing it.  I took a break from reading too much into it, but now I have the appointment I’m going to have start looking at the information available online (related to the procedure itself, although mainly aimed at Leukemia patients). I’ll be doing this in small chunks again, so as not to get too bogged down and overwhelmed by it.

I think our main issue is still fitting this option into our longterm plans to have a family and this is something I want to discuss thoroughly. I’m also seeing another Rheumatologist who is now having input on my care – a Professor Moots at Aintree – on Novemeber 14th. He’s been a part of the decision to put me forward for the Stem Cell treatment, but I’m also going to ask about a previous suggestion of trying a combinaton of two biologic drugs; double check there are no trials or new drugs in the line up and possibly, what his opinion is on pregnancy and remission.

This last thing is something we have been thinking about in light of having to turn to the Stem Cell treatment one day, since the chemotherapy would leave me infertile. If there is a chance that pregnancy could result in some sort of remission, even only temporary, it may be worth pursuing. After that, there may be more options to consider before resorting to the Stem Cell treatment, but if not it, at least it wouldn’t seem quite the sledgehammer to our future family plans. That’s our thinking anyway, but obviously it would need the support of my doctors.

So there we go, that’s where things are up to right now. I have lots of thinking to do and questions to make a note of before both appointments.

Who knows where they will take me.

L

I’ve posted about the dreaded ‘How are you?’ question a few times before but it is an issue that just keeps rearing its ugly head.  A question that most people with chronic illness have dreaded hearing at one time or another, if not all the time.

On Saturday we went to a house warming party – one of my best friends from university has moved back up North after living in London for a few years and having her closer by is definitely something to celebrate! It was more than I’d done for quite a while, but I figured I could handle it if I stayed sitting and luckily we were able to grab a spot on the sofa. For once, it wasn’t the physical side of things that I was worried about but the socialising.

Of course there were no problems with my friend and her husband, but although I knew most of the others, only on the distant terms of friends of a friend.  And at the moment I am not very good at small talk; it is hard to know what to say when your current life consists mainly of staying in the house all day, not working, not having exciting hobbies or nights out to talk about. In fact, the majority of things relevent to my life right now are quite scary – the prospect of needing Stem Cell Therapy / Bone Marrow Transplant / Chemotherapy etc. People don’t want to hear about that, to be dragged down into the negatives in others’ lives; so I start to panic when I sense that dreaded question on someone’s lips.

‘So how are you??’

*awkward pause*

Do I lie and say I’m fine, even though I’m obviously not and they may be told otherwise by someone else later? I’m thinking now that might have been easier. But me being me and all honesty instead said ‘I’m not doing so good at the moment…’

I was going to follow this up with a postive comment about our engagement, to change the subject away and stop me from sounding like a miserable party pooper, but I didn’t the chance.

Instead, halfway through my sentence, the person I was talking to hastily turned their back and blanked me completely. Now, I’ve had people look awkward, at a loss for things to say; had them change the subject and so on, but never have I had someone physically turn their back on me.  My fiance and I were both gobsmacked and I had to stop him from tapping them on the shoulder and saying something.

At first I kicked myself for giving the wrong response to the question, but then I thought no, I just said it as it was; the problem was their’s. If they couldn’t handle the answer, they shouldn’t have asked the question – even if they were just doing it out of politeness, since the outcome was anything but polite!  Most people know I have health problems, so they must realise that the question ‘how are you?’ is a loaded one. I would much rather they didn’t ask and stuck to talking to me about The X Factor, than ask when they obviously don’t care about the answer.

Maybe then I wouldn’t have to gage people’s reasons for asking, wouldn’t have to worry about tailoring my response to each individual and then maybe, maybe I wouldn’t dread hearing the question so much. Ugh.

Anyway, on a more positive note, I had a great time at the party and managed to stay until just after 10pm, which is late for me. Yes, I wished I could have stayed later and chatted away with everyone and maybe had a few drinks and gone home a bit tipsy. But this was a step up from being housebound and unable to move, so I was pretty pleased that I actually made it and didn’t have to let my friend down.

Oh and I think she liked the ‘Home Sweet Home’ cross stitch I made for her; the first I’ve managed to do this year I think.

So yay for being able to function, even if it is all the demon Prednisolone’s doing.

L