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Posts Tagged ‘Biologic Drugs’

After emailing my Rheumatologist with an update yesterday, he replied to say that the referral to start the Stem Cell Therapy and Bone Marrow Transplant procedure had gone through.

Yikes. That conversation was real then.

I’m not commited to anything at this point, nor am I even close to making a decision about it; I have simply agreed to hear about what the procedure entails as a treatment option for Still’s Disease.  It has been agreed that we have exhausted all other options and the medications are just not working for me. There was a suggestion that maybe I could try a combination of biologics, which is unchartered territory but perhaps less risky than the SC/BMT. I need to revisit this idea with him at some point as I forgot to ask about it during our last conversation; the focus becoming SC/BMT.

There is only one hospital in the North of England that carries out the procedure and that is in Sheffield, about 90 miles away from home. That’s going to make it tough spending any long amount of time there. The funny thing is, that the only Haematologist to carry out the procedure also happens to be my Rheumatologist’s brother, which makes me feel I will be in safe hands. There shouldn’t be any communication issues between the two at least!

The first step is to see a Rheumatologist called Dr Akil at Sheffield Hospital. My Rheumy thinks it’ll be about four weeks before I get an appointment, but I wonder if even that is optimistic. It doesn’t sound very long and I’m kinda nervous about seeing a new doctor after all these years. I’m wondering if he will have access to my huge volume of notes, or if he will want to do some tests and investigations himself.

I was also sent some information about the procedure, although it is so rare that he hasn’t been able to find any patient-based info. Instead, it is a 21 page article full of medical jargon. I couldn’t face reading it straight away, it was enough to have it and realise that all this is very real. Today though, I decided there was no point sticking my head in the sand and that I needed to face it head on. It is going to be a massive decision and so I’m going to need as much information as possible to make it properly, plus enough time to process and take it all in and to address any questions I have about it all. Better to start now then.

And start I did, but after two and a half hours of reading I am only six pages in and have decided to leave it there for the day. Because I want to fully understand what’s in front of me, I’m constantly checking up on word meanings and acronyms and making notes in a separate document. It’s like being at school again, which would be great if it wasn’t such a personally daunting subject. My GP, (who popped round earlier to see how I am getting on since leaving hospital), has kindly offered to interpret anything I don’t understand though at least.

So what have I learnt so far?

  • Only 3000 of these procedures have been carried out for people with autoimmune disease since 1995 – worldwide; about 175 a year.
  • It will be an ‘Autologous’ Stem Cell Transplant, which means harvesting and replacing my own cells.
  • Remission is possible, both longterm and temporary; if temporary, returning symptoms tend to be easier to treat.
  • It is also possible that there will be no change and there is, of course, risk of death.
  • With Still’s Disease, the main risk of death comes from Macrophage Activation Syndrome, which can occur at either stage of the procedure. This is something I have already suffered from, I discovered recently.
  • My Still’s medication would be stopped as early as possible and I would have to rely on Steroids to prevent any further flaring.
  • I would need chemotherapy – I guess that might seem obvious but seeing it in writing makes it real.

And that’s about as far as I’ve got really, wading through all the medical jargon. I’ll read some more tomorrow and keep posting about it here. Since it is such a rare procedure, I think it is a good idea to keep a record of it for others that may need it in the future, even if I don’t go the whole way. Because it doesn’t just stop at understanding the procedure itself, or even coming to terms with the risks – it’s the whole impact on my life and future, the future I share with my fiance and any plans that we might have to start a family etc.

So much to think about,

L

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I thought I’d post a more thorough update on how things have been since my first Infliximab infusion last week, especially since most of it is positive. I noticed almost straight away, the very next day, that I had less pain and was able to move better: things that I had been finding hard, such as sitting up in bed or standing from a chair, just felt that little bit easier and have remained so. I’ve also noticed a slight decrease in swelling around certain joints, my left elbow is straighter and my knees are less restricted. This improvement has been maintained each day and, rather than the rollercoaster of good days and bad that I had previously been stuck on, I seem to have reached an even keel, which is brilliant.

This stability has enabled me to stick to a better daily routine, including with my Physiotherapy exercises. I now have set times for my sessions and have even been able to increase the number of repetitions of some of the easier exercises, without suffering for it. I try and push myself a little bit harder each day, but know to stop when I feel the strain not after it, and this seems to be working. My arms in particular are moving much better than they were and the spasms that I was experiencing in my neck / shoulder / collarbone area have definitely lessened, although it still feels like something is ‘catching’.  I also have a better range of movement in my neck, something that has been restricted for months and months!

I’m defintely getting stronger in my legs and am able to bear more weight through my hips now too; I even managed to raise my leg off the bed when lying flat for the first time the other day – an exercise that I’d had particular trouble with – and I’m gradually increasing how long I can hold it there for. Not being able to do this had been upsetting me, so to me this is a big sign of improvement. I still have the muscle wastage at the tops of my legs and around my hips, but I know this is something that will take time to recover and at least it isn’t any worse. I’ve just started to add some resistance exercises to my lower body pyhsio, using therabands, so this should help build up some strength and muscle too. I’m really pleased now that I pushed through the pain and made myself exercise and I’m even more determined to keep it up and not slip back into bad habits. Who knows, maybe I’ll be lifting weights next?! 😛

Walking-wise, I am still mainly using the zimmer frame to get about and managing quite well with it, but I am at least using the crutches every now and again: I chanced a short walk around a shop on them the other day, which was an achievement in itself, although I felt a bit wobbly and it wore me out more than I expected. I’ve been able to manage the stairs a few times (with help), on the crutches too and so have had a few evenings downstairs, which is great. Not only does it mean a change of scenery and better zimmering space, but I’m able to pop in to say hello to my ‘furbaby’ Jasper the rabbit, who I miss like mad. I’m hoping that things are going to get better and better from here, that I’ll be able to use the crutches a little bit more every day and to go downstairs once a day too. I have three weeks until our Dublin trip and it would be great if I could manage with crutches alone.

I still can’t say if all this is thanks to the Infliximab / Remicade or the IV steroids, but any relief, any improvement is a welcome thing.  Despite not wanting to get my hopes up too much, I at least feel pretty optimistic about the new medication and I think that’s allowed. The only bad day I have had since starting it has been today actually. I woke up this morning with a very sore mouth and swollen tongue, (which has become increasingly worse), and when I looked in the mirror I had several ulcers/sores on my gums and a strange raised rash-type thing covering my tongue. I’ve also been feeling really weak and shaky, my pulse is racing and I’m exhausted, so for the first time since being in hospital I have slept during the day and am currently curled up on our sofa with a blanket.  From the information I was given, it looks like it could be a side effect of the Infliximab or of my immune system being wiped out by it; but hopefully, like so many of these things, it will just be a minor blip and disappear as fast as it came.

At least I can finally say there have been more good days than bad 🙂

L

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Just a quick post. I have posted a poll on the blog’s Facebook Page asking what current Biologic Treatment people with Stills are currently taking, so that I can try and see which drugs are the most widely used in the treatment of Still’s Disease.

The poll here is slightly different, in that you can vote for more than one option, to give you the opportunity to record each Biologic drug you have tried, since I figured this might give us a broader spectrum to base results on.

You can take part in both if you wish!

NB. Please only vote on the poll if you do have a diagnosis of Still’s Disease, Adult Onset Still’s Disease or Systemic Juvenile Arthritis, thanks.

L

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Just a quick note to say that I sent my Rheumatologist a weekly update on my condition, which isn’t getting any better. My current joint count includes: both hips, but especially my left being painful and unstable, both knees being very swollen, sore and restricted, left elbow swollen, painful and very restricted, both shoulders painful with fluctuating levels of restriction, neck stiff and sore, left wrist and fingers starting to feel puffy and stiff and developing pins and needles through to that hand, both ankles feeling tight and the left side of my jaw quite painful and tender to touch. So, you can probably understand that my hopes for Tocilizumab ever working are slowly dwindlng away…

I said as much in my email to my Rheumatologist and was relieved that he feels we have given the current treatment combination enough time now and that he is looking into other options to see what we should try next. I have been on Tocilizumab for 6 months now; 4 in combination with Methotrexate and 2 with Ciclosporin. Blood test results have show significant improvement but my joints have definitely not; in fact, I am much worse now than when I started.  In his reply he stated that the next step will probably be a stronger anti-tnf drug; Enbrel worked for a long time, but I eventually formed antibodies against it. I know there have been a lot of advances in anti-tnf since then and so I am happy with this option.

I’m due for my next infusion on Friday and will see my Rheumatologist to discuss things further then and hopefully come away with a plan of action. I’m guessing I’ll at least have this last dose of Tocilizumab and then maybe we will start the application to fund something new. I also hope that they will be able to take some of this fluid off my joints, particularly my knees, to give me a bit more movement. Not being able to bend my knees or weightbear on my hips properly is certainly proving to be a challenge!

Until then, I’ll be doing some research of my own into the anti-tnf options available,

L

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I felt a whole lot better today, as always my feeling low came out of the blue and disappeared just as fast. It just shows how easily hormones and emotions can wreak havoc on us. Even so, I felt a little bit fragile and had a migraine to boot, so it’s been a quiet day of resting and reading and getting stuck in the bath tub (I should have known when I had to ‘fall’ in that I’d have trouble getting out, oops).

I’ve also had a serious case of the munchies; in fact, this is pretty much a daily occurrence for me now. I never used to be much of a sweet tooth, didn’t really like cakes and so on, but would have a biscuit every now and again. For about the past six months though, I’m constantly thinking about what I can eat next and if there are any sweets, cakes, biscuits in the house they are soon demolished! And when there aren’t, I find myself searching through cupboards trying to find something, anything to take the edge off the munchies! (Chocolate scroll cake toppers anyone?!)

I thought it was just the increase in Prednisolone that had brought this on, although in the past it has always been savoury foods that I’ve craved – chicken mainly, but eggs, cheese and creamy sauces too. However, when I was in the treatment room having my last infusion, it came up in conversation that Biologic drugs could actually be the cause – Five of us were all on one Biologic or another and all five claimed never to have been sweet-tooths before starting them; only two of us were on Prednisolone. And the nurses said it wasn’t the first time they’d heard such a conversation in there too, so there could be something in it.  No wonder weight gain and increased cholesterol levels are included in the list of side effects!

Speaking of which, I’m currently working on the information page for Methotrexate in the Treatments section and should have it finished shortly.

Now I’m going to see what yummy treats are waiting for me in the fridge 😉

L

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This article outlines results from some recent studies into this question, which must be on the mind of many of us. It covers each of the non anti-TNF drugs individually, but the risk of cancer in each does not seem significantly greater than for people not treated with Biologics.  Of course, because these drugs are still relatively new, long-term effects have yet to be established and continued research is required. Still, it’s a promising start.

Edit: For some reason the above link doesn’t work for everyone, so I copied the article here.

Ps. The Guides for Diclofenac and Indometacin are now accessible from the Treatments tab.

L

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It saddens me that for once Google has alerted me to a ‘Still’s Disease’ article and it has to be something like this.  Georgiana, age 4, has Still’s Disease and has recently had her funding application to start Tocilizumab turned down by the PCT after a two month wait.

From the information given in the article, she has tried one other medication that didn’t work and the PCT are arguing she should try others before moving on to Tocilizumab, which is one of the newest treatments available and has a good record at treating Still’s Disease successfully.  I can see the point in trying other drugs first; as I tried to show in my Treatment section, Rheumatologists have a certain pattern they follow when prescribing drugs to try.  On the other hand, it would seem cruel to try Georgiana on drugs like Methotrexate and the other highly toxic DMARDs usually turned to first, when their side effects could also be damaging to her health.  But there are a whole host of Biologic options to try these days.

One of the best things about the Biologic drugs (which aren’t completely without serious side effects) is that they are tolerated well and have a good success rate at keeping disease progression under control – so I feel for children especially, we should be starting them right away, before any further damage is done by both the disease and other medications.  Georgiana currently seems to be taking only a high dose of steroids and her mother is already concerned about the longterm side effects after just months. Treating her properly now could save her from becoming someone like me, who has been on them for 14 years and will probably need treatment for the effects of that on my body too, in years to come.

I do wonder what the drug is that the PCT want Georgiana to try instead.  How someone can say it is ‘unlikely to work’ and will ‘waste another 8 weeks with uneccessary treatment’ is confusing to me though.  I don’t think anybody can be sure what drugs are going to work for any one person – Cyclosporin proved a wonder drug for me, for example, and I barely hear of anyone being prescribed that these days; maybe it just doesn’t work for many, but I’m glad we at least tried – it gave me almost ten years of normality.  No treatment is a waste of time, although it is understandable that some may feel that way.

What the main complaint seems to be about here is the frustrating way we have to go about treating Still’s Disease and similar conditions – it’s a game of trial and error and unfortunately that means a lot of ‘wasted’ time and waiting, which must seem a helluva lot longer to a 4 year old and parents that just want to see her well.  You have to try different drugs and it can take months before it becomes clear whether they are working or not; before you might have to move on to another and start the process over again. There isn’t any one drug that a rheumatologist can prescribe, confident that it will absolutely, definitely work. I’ve been doing the trial and error thing for over 18months this time round, I waited almost 6 months for my funding and there is still no guarentee, even with a drug like Orencia – just as there is no guarantee that Tocilizumab is the drug for Georgiana.

But what I do agree with is that if her rheumatologist thinks Tocilizumab is her best option, (and he wouldn’t have applied for funding otherwise),  then she should at least be given the funding to try.  Because, by cutting out trying other more old-fashioned drugs with all their risks, hopefully you will be able to fast track children to the road to recovery at a lesser cost to NHS.

I do hope they fight the PCT’s decision and that they get access to the Tocilizumab quickly.  But I also hope that if they are unsuccesful, or it looked like it would take time,  that they won’t completely dismiss other treatments thinking that this is the only one for her (I know how easy it is to be set your heart on one, Anakinra anybody?). Most of all, I hope they do find the drug that will turn little Georgiana’s life around, to give her the childhood she deserves and soon.

L

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