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Rank: Advanced Member  Groups: Registered
Joined: 11/20/2010 Posts: 244 Location: Cornwall
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Dear all,
Back from holiday and now I really must start taking this seriously!
Brief recap. Diagnosed Nov 2010 and put on MTX. We reluctantly tolerated each other on the basis that I didn't want any more joint damage so I would put up with it. October 2011 the infections started, lots of them, 10 different ones in all in 2 months, 2 weeks of penicillin, off the MTX, back on it gradually (my decision) because I didn't feel up to doing battle with it. Wham, week before Xmas full on puffy face feeling really dreadful, GP advised allergic reaction to MTX and stop taking it. One week later all over body rash, still feeling really rubbish, GP said continuing allergic reaction.
Appointment with rheumy nurse in February, said come back in April and here's some info about Leflunomide. We'll probably try you on that next, your ESR and CRP is OK so it won't hurt. Also get more of the MTX out of your system and not to start anything new whilst on holiday. All seemed reasonable to me, I'd had a depo and was feeling sort of OK and hoping it would kick in some more so fine. Then find out that my CRP and ESR were normal when diagnosed just the RF through the roof.
So brain gets into gear. I've been taking MTX to slow down my disease. I assumed that the monthly bloods for CRP and ESR would show whether or not it was working. They were always normal so it must be working even though I could go for a blood test feeling rough as a bag of badgers with joints popping up all over the place and they would always come back normal.
I've had lots of flares and infections since starting the MTX, the morning stiffness has never really got below an hour so did it ever really work? All the medics thought it was but how did they make that decision? Yes, feeling better than when diagnosed but not that much better! The Leflunomide works in the same way, how will I know whether or not that's working? Am I really so unaware of what's going on with my body or so good at ignoring it that it doesn't really matter?!
So I suppose the question is, does anybody else have blood which lies? Does this have an impact on treatment and if so what? And should I just say, to hell with it and go for the leflunomide and see what happens?
I'm going to see my GP to have a chat with him before seeing the consultant in April but any views from them who knows a lot would be much appreciated.
Take care
Sara
x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 714
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Sara
Absolutely. My blood is a complete liar. My CRP and ESR are low and has always been but I have joint damage. Enough for my first knee replacement last year. Luckily my Consultant does not take much notice of my blood test results but listens to how I feel and treats me on that basis.
I am now on my third anti-tnf, have tried Rituximab and take Methotrexate weekly and Naproxen twice daily and I still feel awful. I struggle out of bed each day for work and have continual stiffness even after sitting at my desk for 20 minutes. I regularly flare and as for the fatigue I could fall asleep typing this.
Since my diagnosis I have emphasised to my Rheumy team that I have to keep working (I am the only bread winner) and mobile and I continually tell them this at each appointment. I am very lucky in that I do have a brilliant Rheumy team who take time to listen and have continually updated my medication. Even though I have had problems with allergic reactions to anti-tnf's etc, I am a great believer in nothing tried nothing gained and that is why I have started on my third anti-tnf this week.
I can't tell you to take the Leflumonide Sara but if it were me, I would hope that maybe this was the drug I had been waiting for to give me a better quality of life.
Keep us posted.
Jackie
xx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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I have a friend with sero negative ra Never once has it shown in a single blood test Sadly, one look at him and is obvious he has ra lots of joints replaced etc. He's done brilliantly on the Rtx in recent yrs Jenni xx how to be a velvet bulldoser
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Rank: Advanced Member
Groups: Registered
Joined: 9/9/2010
Posts: 77
Location: Hampshire
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Hi I've recently started on Leflumonide and so far so good no side efftecs but I have been having flare ups and suffer from fatigue but my bloods come back fine. I've had a steriod injection to help but as my blood pressure is a bit high (not sure whether its the leflumonide causing blood pressure or because when I visit the hospital or dr's I always feel a bit stressed)!! they won't increase the leflumonide. I had to come off MTX and Sulfasalazine as I had reactions to both of them. Hope things improve for you. Take care Debs 
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 327
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Hi Sara
My ESR and CRP don't reflect how I feel at all! That's not to say they're always low, they can be really high sometimes but I don't feel any better or worse. My consultant accepts this luckily. I'd say that the MTX isn't for you, and I'd go with whatever else your GP or consultant advises. Good luck.
Anthea
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Rank: Advanced Member Groups: Registered
Joined: 11/20/2010 Posts: 244 Location: Cornwall
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Cor blimey its a bit rough when you can't even trust your own blood isn't it! Glad its not just me, so its not all in my head then?! That's sometimes the way they make me feel, so I shall be more persistent in the future about explaining how things are.
What always gets me is you don't how everybody else feels so how much of all this is just normal getting older stuff! I think the little old lady overtaking me walking down the street tells the tale.
So the plan. Seeing the GP next week to talk though the next steps. He always listens and takes me seriously. Will start the Leflunomide on the basis that it could change my life. But I'm not putting up with any nasty side effects and if my blood pressure starts to go up that's time to knock it on the head. Not taking any more drugs than necessary to control side effects, to control side effects etc We shall see.
Unfortunately I think the depo is starting to wear off. New pain in the palm of my hand, very bizarre! Can't grip a thing, driving quite entertaining, he ho!
Sara
x
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Rank: Advanced Member Groups: Registered
Joined: 11/20/2010 Posts: 244 Location: Cornwall
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Dear all,
Saw lovely Rheumy registrar today, the big man too busy trying to retire. She explained the CRP EST mystery like this. There are lots of different types of RA but they haven't necessarily all got specific names yet. Some people like me and the others here who admit to having misleading bloods have this issue but also clearly have RA and progressive joint damage which she happily pointed out to me on the x-rays of my feet. This group of people she says, tend not to have much of an improvement in symptoms with stuff like MTX, but the DMARDs still slow down the progression. She did have to zoom in a bit to find the progression from the year before, apparently for some folk its bleedin' obvious from a glance. So all my whining is justifiable, its not all in my head, but I could need a new pair of feet if I don't take any DMARDs.
Brilliant, an explanation, so onto the Leflunomide then. In spite of driving around the hospital car park looking for a space for 45 minutes and being totally stressed out, BP not too bad so here's your prescription. Thanks a lot see you soon.
Next chapter started, here goes nothing!
Sara
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Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009
Posts: 2,127
Location: Thornton Cleveleys
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Hi Sara Your story is a very common one so don't go thinking it is in your head. Without some sort of DMARD you will almost certainly incur further irreversible joint damage, even with it there are no guarantees but at least it should slow down any progression. I have had Leflunomide, done the rounds of that one twice, and neither worked for me! However Methotrexate in combination with an anti-tnf has been very good and effective. Like you I went through a period of infections, all reactions to the MTX, stopped it at one point for well over a year and re-started on a low dose increasing gradually to 12.5mg, my current dose. Had a few problems with recurring infections but it seems to have settled as my body has adjusted to the dosage. I am about to start a third anti-tnf, Cimzia, having just failed on Rituximab which has left me in a bad way with a number of additional problems that now need sorting out. As much as I hate it and hate saying it even more because I don't feel it is right to put people through this, it is unfortunately trial and error. I am quite sure that RA is not one disease but a combination of very diverse symptoms and drug responses all snuggled under a big umbrella on a very rainy day. If only there was a way to know what is causing the inflammation the doctors would then know how to treat us effectively and target the disease accurately. Is it tumour necrosis factor, CD20 on B cells, T-cells, IL-6 or any other number of possibilities? All guess work for now but being informed does help with the choices available. I have now developed an excellent relationship with my rheumatologist and the team and they are happy to consider and act on my choices because they know I have researched thoroughly before reaching a conclusion. Just hope the Cimzia works!! For me, my ESR is normal at 16/17 but let it get to 22 or above and I know about it! 27 is pretty bad. It went over 100 for 6 months a couple of years ago and I felt wonderful  Who knows?  Good luck Sara, keep us posted  Lyn x
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Rank: Advanced Member  Groups: Registered
Joined: 1/21/2012 Posts: 388 Location: Powys
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HI, What I don't understand, is if these blood results can be so misleading, why do our rheumy teams put so much store on them. Don't they know!!!
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,006 Location: Timperley
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Strange you should mention that, Zena. 'Tis something I have often pondered on myself! xx
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