I've been real busy and active. Almost like how I use to be. My biggest worry was what dress shall I wear today.
It's almost like having 2 lives - when cimzia works it really work and I can almost forget that I've got ra, but it runs out, this time I got 11 days and I am now fed up of morning stiffness, but I have a dull ache in my knees, in particular the right knee. Had it all day. I took anti flam today, so the pain is reduced, but its still a dull ache and because today is mtx I've not taken pain relief this afternoon and waiting to take it later when I do the mtx injection. I'm furious that I feel this way again.
Having to accept that limitations for a burst of life is proving hard & difficult. Why is it we can't have it all?
I know I should not moan as others have it worse, but I've been bad for so long, it almost as if I've been teased. Enough said.
On a positive note - I've started dinner as hubby is taking a small school party to the olympics (Earls court), to watch badminton with a couple of other teachers. This I think is ironic as we applied for tickets and never got any. We had to contribute for the building of the olympics when we lived in london, but yet they have empty seats.
My eldest has just walked in and saved me the burden from cooking!
Take care all Sci x
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sciqueen
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Know how you feel. Mine lasted a week! Mind you that probably had something to do with the fact that I got roped into taking my brother in law all the way up to RNOH Stanmore on Wednesday (I live on the south coast). No-one told me we had to be there at 8.30am so had to leave at 5 and never got back til gone 6pm. Came home, went to bed and have been laid up ever since. It's my own fault. I should've said no but never do. And to add insult to injury, I've not had one text or phone call from any of my inlaws to say thank you. But then there's nothing really wrong with me right??????
I think Cimzia will work Sci. I've had a better and quicker reaction to it than I had with either Enbrel or Humira, but just think it will take a little time so hang on in there. We'll be running a marathon before you know it!!!
B x
Hey it's like when the optician tries on all these lenses and suddenly everything swims into better focus than you thought possible - and then tells you this can be yours for a few hundred pounds you don't possess isn't it? I think I'm the other way round to both of you and had become used to having spots of pain like bad sprains but basically feeling quite well in myself. Then suddenly wham, bam it all went wrong with that raised dose of MTX 2 months ago. Now I feel totally lost and constantly tired and just want to get back to feeling okay and relatively enthusiastic in myself again - never mind if it comes with a bit of pain. If this is the meds working with me then they can keep it thanks! Sorry I know this isn't very relevant to your blog Sci but I do relate to the way you feel because today at the GP's I felt really sad that I'm having to sacrifice my immune system, which has always worked really well until recently - for this disease that is RA. It just feels so rotten and unfair at times doesn't it? TTx
I know Tilda. And as has been said so many times on this forum, people simply don't understand. Yes, we may walk funny and maybe we've got odd hands or a dodgy neck but "everyone gets aches and pains". they don't take into account the utter despair that we can feel sometimes when there's yet something else that you simply can't manage anymore. It's all very well getting "a touch of arthritis" in your twilight years but when you have to ask your 80 year old grandmother to do something for you 'cos you can't - that stinks!
I know I keep going on about it but it's like last week. The reason I got roped into the trip was because his wife (my sister-in-law) was "too tired" to take him so my father and other-in-law asked me. WHY DIDN'T I JUST SAY NO??? and more to the point W I've been thinking about it alot over the past week as I've lain on the sofa too knackered to get up.
Sorry hit the return key by mistake but you get the gist ..... xxx
I don't know why you didn't say no Bub - I certainly would have I think but then I can't bear my in-laws and they live a thousand miles away so would never ask! I think some small part of each of us enjoys playing martyr but it's daft and we do ourselves a grave injustice by not standing up for what is right and fair. If a person lays themselves open to exploitation they will be exploited - not by the really good people (although even quite decent people want to punish martyrs!) but by the ordinary ones who just don't think or have good imaginations.
I'm pretty tough now and having RA has helped. I try to use my dark sense of humor to get things across mostly - have never wept on anyone yet about the stuff that's going on with this RA but if these spells of low immunity get more common I probably will finally crack. But it's exactly because they don't understand that it's essential to spell it out, Those who run a mile will never bother you again - and the rest will eventually get it I suppose? TTx
PS that said I've agreed to run my son's girlfriend into town tomorrow night for the midnight sailing to Aberdeen - and I can't set off until 10.30pm because my son is working late and he wants to come and see her off - yiuk hours of smooching and waving when I should be tucked up in bed - so we all do it and I'm a hypocrite!
But that's what we all do. I think it's some weird way of denying what is really happening to us - if we say yes then we're proving to ourselves that everything is ok when it's clearly not and then we get cross with those that ask us these things because they should realise. But how can they realise when we're constantly pretending we're ok? It's such a rollercoaster of emotions...
I've even tried telling my in-laws that I'm on a chemotherapy drug to try and shock them into understanding but even that hasn't worked and just made me feel that I'm over dramatising it.
Sorry to rant and I'm sorry Sci for hijacking your thread. Cimzia tomorrow so hopefully you'll start to feel yourself again.
xxx
Hi there,
I totally agree with you about 'having 2 lives.'
the amount of time I've spent really suffering from inflammatory arthritis is less, now, than the amount of time I've spent on steroids and MTX feeling fine but wondering what's 'really' happening to me.
I've started to get some pains - very strange floaty aches in my limbs - which I think of as ghost pains: I fear they may be a pale shadow of what'll be in store once I stop the steroids. With less than 6 weeks to go till I come off 'em I now just want to get on with it and find out whether I will hurt again and also, this is the big one for me, whether I'll get that 'only half-alive' feeling or hold onto some of the energy I have now.
Tilda, I've been following your blogs and questions and know that MTX has been the bain of your life recently ... Seems like whether the drugs are giving us a reprieve from reality or causing side effects they dominate everything. I try to explain this to people but it's so complicated I end up blathering incoherently about 'the drugs, the drugs ....'
Anyway, cimzia sounds interesting! Long may it keep working for you,
Christina x
• in reply to
Sorry, I got carried away going on about my own stuff - just read your blog again & realise the Cimzia isn't working for you just now, it's such a rollercoaster.
C x
Tilda, I know you don't have ready access to your consultant, to ask him to tell you how these anti-tnf's work... Maybe I can reassure you. It does take time, probably months, until your body retains the full strength of Cimzia. It has to get into the bone itself. If it lasted good for 11 days, next time, it may be 12, or 14 days., and so on.
The fact you got any good response from it means it is working. Don't miss a dose, or delay a dose, keep it right on schedule, each time it gets into the blood stream it will meet up with what is there from the previous dose and hitch a ride with it. Just picture all those molecules swimming together, hand in hand, till the chain finally gets so long, it reaches where it is needed! Cheers Lxxx
• in reply to
oh oh , It was originally Sci who has this blog. Sorry, it is now 12:30 am Weds and I'm getting bleary -eyed and possibly confused.
Tilda doesn't take Cimzia, does she?
But the principle still applies, it just have to take time to build up a titre of the drug. Someday, they may develope a simple lab tests to determine how much of the drug is circulating, then Drs would know how it is working, or not. Hmmm. Good day, all! Lxxx
Is this ra create by a man!! no offence to the men on here. I'm just trying to bring a smile to all of us that are suffering.
It is a destructive disease and i think the mental part of it is as serious as the disease itself. The trouble is until they start treating as a whole person and not just the bits they are qualified in we won't be able to get a grip on this disease. If your in pain then your mental feelings get dragged into it as well and it is a downward spiral. Sorry i shouldn't be so pessimistic,but it all goes hand in hand with each other. I do find that when it gets to the very worst with the pain that crying helps. I should know as this last week i have cried buckets. Yesterday was a bit of a bad day as well. Hang on a minute while i put my hearing aid in. Ah thats better. My tinnitus gets worse when i'm having a flare,hence the hearing aid. Still trying to cheer everyone up,not sure if i'm succeeding though.
cup of tea has just arrived so i am off to drink that. Hope you all have had a laugh at my bit of waffle. Sylvi.xx
Hi Sci, sorry you're still on the RA roller coaster, but as Loret says hopefully all the highs will soon join up and you'll be bouncing non-stop. I hate the unpredictability of this all, and not being able to have a 100% guarantee that I'll be able to do what I've planned is really frustrating. But I have to same I'm glad I've escaped the hustle and bustle of the Olympics as sounds hugely exhausting. How long till your next dose? Pollyx
Just update you all. Took another dose of cimzia this morning and can already feel the effects being topped up. I like the way Loret explained it, as its how it was explained to me by the cimzia nurse. It should last longer this time, may 12 days+, who knows. But the effect is I already am feeling better. By this evening I will be fully "juiced" again and raring to go.
Thanks & take care all
ps for newibies - sometimes you will mention a common thread and your blog gets hijacked a little this is normal and we never do it to newbies out of respect, but its ok - really.
I sometimes think ra is like a jekyl and hide scenario - sometimes you feel good, & you are able to do stuff and mostly bad, you feel down, miserable and lots of pain. Because peps can't see the disease they often take advantage, "as we always look well", despite the fact we could be in a lot of pain. That couples with the fact we rarely complain to others or down play the pain. We are our worse enemies as we present an all is well face!
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Lxxx
Splitting the dose of MTX?
What the.........?
Miserable Weekend.....and start of an even more miserable week!!!!
