I was wondering if anyone has had a flare-up whilst on enbrel and if so how
long does the flare-up last. I'm on 25mg twice weekly injected by community
nurse. At this time i'm flared up badly and been in quite a bit of pain this
last 3/4 weeks, funnily enough the pain is affecting joints that had'nt
previously caused problems. Affected joints are hands, feet, ankles, elbows,
neck, hips etc basically them all, most problems were down my right hand
side but now its down the left. I previously had a failure on Humira and am
wondering if this is another failure. Was back to doc this week and because
i'm on a specialist regime of drugs by my RD in ABDN he could only increase
the pain medication from 30mg dihydrocodeine to 60mg every 4 hrs along with
1000mg paracetamol every 4 hrs as well. He has referred me back as a matter
of urgency to my RD and i should hear from him sometime this week. The drugs
i'm on daily are as follows: -
Monday 1x Lansoprazole 15mg capsule, 60mg Dihydrocodeine 4 hourly, 1000mg
Paracetamol 4 hourly, 3x500mg Nabumetone tablets, 3x 120mg xenical capsules
Tuersday 1x Lansoprazole 15mg capsule, 60mg Dihydrocodeine 4 hourly, 1000mg
Paracetamol 4 hourly, 3x500mg Nabumetone tablets, 3x 120mg xenical capsules,
1x5mg Folic Acid, 1x 25mg Enbrel
Wednesday 1x Lansoprazole 15mg capsule, 60mg Dihydrocodeine 4 hourly, 1000mg
Paracetamol 4 hourly3x500mg Nabumetone tablets, 3x 120mg xenical capsules
Thursday 1x Lansoprazole 15mg capsule, 60mg Dihydrocodeine 4 hourly, 1000mg
Paracetamol 4 hourly, 3x500mg Nabumetone tablets, 3x 120mg xenical capsules
Friday 1x Lansoprazole 15mg capsule, 60mg Dihydrocodeine 4 hourly, 1000mg
Paracetamol 4 hourly, 3x500mg Nabumetone tablets, 3x 120mg xenical capsules,
3x2.5mg Methotrexate, 25mg Enbrel
Saturday 1x Lansoprazole 15mg capsule, 60mg Dihydrocodeine 4 hourly, 1000mg
Paracetamol 4 hourly, 3x500mg Nabumetone tablets, 3x 120mg xenical capsules
Sunday 1x Lansoprazole 15mg capsule, 60mg Dihydrocodeine 4 hourly, 1000mg
Paracetamol 4 hourly, 3x500mg Nabumetone tablets, 3x 120mg xenical capsules
As you can see its quite a lot to be taking with little or no effect, I'm
still trying to be focused and positive but its getting really frustrating.
Another point to note is i was sick for the very first time yesterday after
having my mtx and enbrel injection this has never happened previously. I see
that a few others here have been on the 50mg weekly and appear to be going
quite well, heres hoping you continue to progress, will post later with what
happens this week with regard to the enbrel etc, hopefully i won't be going
to hospital again as its quite a long journey for friends and family etc to
travel too visit especially if they keep me for the length of time they did
last time, 5weeks.
Anyway best wishes to all, just had to vent some frustration on the
computer, guess it may cheer me up.
robert

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heather - 15 Oct 2005 15:21 GMT
>I was wondering if anyone has had a flare-up whilst on enbrel and if so how
>long does the flare-up last. I'm on 25mg twice weekly injected by community
[quoted text clipped - 45 lines]
>
> robert
Hello Robert,
>I am on most of the same drugs as you, (apart from exenical) but I use a
>different painkiller.
I also failed on the Humira, but have been on Enbrel for over 6months now,
and its great, I have had a small flare up lasting a couple of weeks, which
also affected my knees and jaw, I haven't had a problem with these joints
for about 18 years, until then.
I notice that you take your folic acid a few days after your 7.5mg of MTX, I
was always told to take mine 24hrs after taking MTX!
I hope you get that app asap and this is just a hiccup with Enbrel. They
would have to drag me away screaming to get me off it now :-)
All the best
HeatherB
diclidophora@yahoo.co.uk - 15 Oct 2005 16:13 GMT
Heather
I also get pain with enbrel and I think the enbrel story may not be as
straightforward as some would have us believe. How are your
CRP/ESR/platelet counts?
Peter
heather - 15 Oct 2005 18:45 GMT
> Heather
>
[quoted text clipped - 3 lines]
>
> Peter
Hello Peter.
CRP and ESR are perfect 4.3 and 22 at the moment, platelets 254.
I do have low Lymphocyte and wbc, but feel much much better than 6 months
ago (touching wood)
Great drug, for me anyway:-)
HeatherB
baino - 17 Oct 2005 14:35 GMT
Thanks for the replies. Still suffering but hopefully by the weeks end I'll
have seen my consultant again. I tend to agree with Peter when he says "I
think the enbrel story may not be as straightforward as some would have us
believe" as I know of a few others in my area who are on enbrel and still
have significant pain as well as flare-ups, maybe its just a question of
finding the right level of pain medication, I'm not sure. In my case I had
an allergic reaction to tramadol and had to go back to dihydrocodeine's.
Whats the significance and meaning of the CRP, ESR & platelet counts? I've
never known mine or been parity to that information. All I know is that my
liver function has went through the roof on several occasions. The first
time was when they wanted me to get up to 7 x 2.5mg MTX, I got as far as 5 x
2.5mg when the consultant called and said to go no further than 5 x 2.5mg as
my liver function had went very high. Another time was when I was in
hospital and had methyl prednisilone infusions to control the inflammation
etc in joints and my liver function again went through the roof and my MTX
was suspended until it came back to a respectable level and I was then put
back on to 3 x 2.5mg, which I still take to this day.
In the beginning back in early July I thought that this drug was beginning
to work fine as I was responding well but now this last month has been back
to normal before enbrel which was very painful and swollen joints. I'm still
hoping its just a flare-up as if its a failure then I've failed on 2 of the
latest anti-tnf drugs and I guess the outlook may be a bit grimer but I
guess we'll just have to wait and see.
For anybody thats wondering why I appear to write quite a bit in fact I use
dragon naturally speaking tools voice recognition software to do my typing
its proved to be a real bonus to me as it avoids typing with my swollen
hands, wrists etc, Highly recommended to all in this position.
robert
> Heather
>
[quoted text clipped - 3 lines]
>
> Peter
diclidophora@yahoo.co.uk - 17 Oct 2005 18:32 GMT
Robert.
Sorry to hear that you also are still suffering.
ESR = erythocyte sedimentation rate
CRP = C reactive protein (level)
Platelet count. - small cells in the blood which are concerned with
clotting
The blood levels of all these are indicative of the amount of
inflammation. Thus when it is high the figures for these are high and
vica versa. The ESR is used as part of the calculation of the disease
activity score in rheumatoid arthritis (DAS28). This in turn is used to
assess whether or not you are benefitting from enbrel etc.
If enbrel is working your counts for the above should diminishing. -
But as I said these are objective measurements and I think they may not
tell the whole story when it comes to the level of pain one
experiences.
Hope this clarifies my thoughts.
Peter
Harvey R. Stone - 16 Oct 2005 03:55 GMT
>I was wondering if anyone has had a flare-up whilst on enbrel and if so how
>long does the flare-up last.
Hi Robert,,, I have been on Enbrel for a little over 3 years. All of it
was the 25mg size back then. I remember the meeting held by the makers of
Enbrel and the fact that all of us would have small flares. I have to
admit that since I have been on the 50mg size,, I have not had a flare but
tomorrow could change that.
Harv