Hi everyone....

I don't think Arava is the drug for me. When I first started taking it I think what was making me feel better was the cortisone infusion (I hadn't felt that good for a long time). I guessed that a while back because I knew Arava would take a little time to kick in. I am sick of losing my hair...but it's not only that. The nausea started off within a week or so of taking it but now it seems to be really bad along with a headache similar to a methotrexate headache. I've tried taking it at night so maybe I could sleep it off but that doesn't work. I thought the side effects would get better as you went along? My GP gave me a prescription for Stemetil until I go see my rheumy.
The other reason why I don't think it is working? I am in the middle of a flare-up both RA and AS...why did that happen? I don't know... but I do know I don't think the Arava is working, and I don't think I wanna take a higher dosage than what I have already, thanks! I could feel the beginnings of it in the last week or two and now I feel like am back to square one...I can hardly move. I feel like I have been defeated. I feel like crap at the moment - physically and mentally. I try to be a pretty positive person most of the time but I don't feel very positive at the moment. I so wanted Arava to work...I know that all probably sounds dramatic but thats how I feel...
I can't go back on NSAIDS (though in a way I am glad - I feel I was on them for way too long and they played havoc with my poor tummy!)and I don't want to take any more pain medications than I already do. I feel like begging my rheumy for another cortisone infusion...I can see myself doing that already.

I see my rheumy in five days and I am relieved, although I have no idea what he will say next.

Thank you all for listening again. It makes me feel a little better just knowing I have somewhere to vent my feelings...

Take care,
Jess

Jess, I'm so sorry to hear you're feeling lousy. I know Arava has worked for others and it's such a letdown to know it doesn't seem to be working for you.

What are the chances of you getting on a biologic? With both AS and RA, it should be easier for you to have it approved, yes?

Warm hugs,

Hey Kat
Thanks for your reply. I do feel let down that it isn't working for me. I really did believe that things would be great by now, and they're not. But I have decided I'm not going to let it beat me. There has to be another way around it. Maybe I'm just sensitive to Arava, I dunno.

Yeh I suppose the biologic thing is the next option? My grandfather reckons it is 'the best thing since sliced bread'. For some reason he seems reluctant to prescribe it (even though he has said that I should meet the criteria for approval here) even though we have discussed it before in detail. I am not sure as to why that is - this time I am going to ask him. I'll let you know what happens on Tuesday.

Cheers,
Jess

Your granddad is your rheumy!! That's helpful in so many ways, I imagine. Good luck talking to him about the biologics.

Hugs,

Hi Jess,

I'm in a similar position right now myself. I was diagnosed last yer wit As after four years of not knowing what it was. I was given anti-inflams, and they just didn't seem to take the ede off, or stop a flare...so my doc kepy prescribing them for me. Every time I started a new med, my hope would be up so high...and after a month of two of being on the meds, with nothing happening, I would be so low and wonder why nothing was working for me. I was then prescribed Enbrel (biologic), and man, I was really keeping my fingers crossed because a few doctors that I had seen have basically said that this is the new wonderful miracle drug for many AS patients...giving these people a new leash on life without hurting. So, my hopes went so high when I started injecting myself (ugh...had to try to keep focused on the light at the end of the tunnel every time I stuck myself every week)...but then alomst 4 months passed...and nothing...no real improvement overall. I was sad sad sad...so, my doc said let's go to Remicade (I guess it's the last resort drug for many). So I have had four infusions thus far...but this time around, I did not let my hopes get too high...and so far the Remi has done as little as the Enbrel. I mean, I got infused last Thursday, and went into a wicked flare on the evening on Friday night that lasted the whole weekend (felt like someone had pummelled my ribs and left bum). I have one infusion left to give this one a fighting chance, however, I am skeptical at this point since I have had poor response to it so far. But, at this point, I am ok with that. If I have to live the way right now...I could manage because I am on a short-term disability, that could lead into long term disability, and if that happens, so be it. Every day I need to focus on myself, and work on exercising in some form (I swim and do water therapy) and focus on my eating and choosing the right food choices.

The point of my rambling is that sometimes we feel really disappointed that what the doc has given us is not working. It's made me very sad and very down in the past 6 months, but you can work your way through it with a positive mind. It's ok to feel let down and dissatisfied when things aren't working...but then that is also the time to start a new chapter and look in to other things (i.e. maybe homeopathic remedies, accupuncture, something like that), and go to your doc and ask for something else.

Keep striving ... even if you are feeling poopy about the situation at hand. And of course, come and talk to us!!!! We're always here for ya to talk to and vent to (Lord knows I've been whining about stuff these last couple of months!!!).

You take good care,

Trina

p.s. this was written in a pain medicated state on my part...hope that it makes some sense!!

Hi Jess,

I'm so sorry you're having such a hard time with this! I know nothing about Arava, so I can't really offer suggestions, but I wanted to say *hug*

*hug*

-Bridget

Yes, Arava sux indeed. I was on it back in 2003 for a while. Didn't do a darn thing. I researched it later and learned that it isn't very effective for AS. On top of that, it is VERY toxic to the liver (tons of lawsuits). For me the combo of not working + possible liver damage=dumped the remaining pills down the toilet. Good luck.

lexus/trina

has a very good point...something real important to remember...rheumies have a whole list of things to try...
everytime you try something new you have that great expectation that this one will actually help out what you want helped.

it sounds like you guys have been pretty much through the list...

many of these meds are real old in pharmacology terms...
sulfa was developed between the world wars as a topical antibiotic wound treatment( this was prior to the development of penecillin)...sulfasalazine (it does work for some) requires a huge dosage to be clinically effective, has about a 40%
'success' rate largely on peripheral stuff, also has a high rate of allergic reactions.
({vioxx, bextra, celebrex...were all adopted/adapted/extrapolated from sulfa)

methotrexate is a fifty's chemo therapy drug...very toxic to the liver, hard on the tummy...NAUSEA !!!! isn't gerd...
nausea is a fine natural reaction to poison...mtx works maybe 50/60% of the time, again largely for peripheral stuff.

arava is newer...like a high-end designer mtx, again very toxic to the liver...many of our folks have tried it and
moved on to biologicals...i can think of only two people who did well on it...and both have moved on to enbrel.

in the medical world a lot of insurance companies want you to FAIL on several/all of these 'less expensive' thingees
before they'll spring for the big bucks stuff...i don't think doctors do a good job telling the truth about the trip
down this garden path...the rheumy i dumped kept saying things like 'give it another month' ; it took my primary
care doctor to see allergic reactions...the rheumy said 'keep going' because these thingees take MONTHS to work.

i have discussed this subject with my current rheumy, and suggested that doctors ought to give probability
estimates and create reasonable expectations and remind ya that 'if it sux, call him/her and stop taking it'

only you can tell if you 'tolerate' a med...everyone's own experience is different...and while each story is different,
the common thread is that things as they are are not good and you're seeking relief...i look at the 'eat well', homeopathic,
accupuncture realm as 'perhaps, relief' ...fine...good...

but this is a progressive spondy monster, at a young age you're seriously discomoded; what are you doing to
prevent disease progression ? all the dmards of old and the biologicals of new have as their primary goal the halting
of the monster that's eating your bones inside out...accupuncture ain't gona do that...the RELIEF we seek is a by-product
of stalling the monster...that's why ya keep trying.

Failing a med, is disheartening, but it's not your failure, not a moral lapse; you did nothing wrong...It didn't work.
best
aB

Hi Kat

No, my Grandad is not my rheumy. My grandad is on Enbrel and he reckons it's great. He said he is sure he would be in a wheelchair if not for that! I should have added something else in there to explain - sorry. We do share the same rheumy, though.

Hope that clears that up,
Jess

Ben...

So, you say to try and stall the monster that's eating our bones inside out...may I ask how you are trying to do this? I ask because I have had nothing that has helped with the pain relief, and I imagine that with the pain relief comes the slowing of the progression, no? Or am I backwards tonight??! LOL...there's a good chance of that...

All the best,

Trina

Thanks for the info on Arava...it was interesting to know the background/origins of the drug. I read this last night with interest, and have today from a personal level found out about how it can affect your liver (new post).
I did have the expectation it would work, mainly because of a positive experience with MTX about a decade ago (although the last time I took it wasn't so positive!) - but I guess it doesn't always work out like that.

Cheers,
Jess

T...aloha

i think sometimes that i am expressing myself clearly...guess not.

look i'm sixty, now...lot of water under the d (obstacle to the normal flow of a water course)...and
i have personally tried just about everything except killing myself...

every Nsaid, all the old dmard (sulfa, mtx ), the pains meds, the muscle relaxers, nerve pain stuff...five rheumy's...
it's a long story...i hate repeating myself, yet we have so many newbies frequently asking the same questions.

by 2004...i was taking about fifteen pills a day( and six more on wednesday)...and wished i had died, so sick.

in sept 2004 i started enbrel shots twice a week and stopped taking methotrexate...( studies posted here previously
report NO improvemnt in folks taking enbrel and MTX together, so my rheumy gifted me the relief of no more mtx)...

by november 2004 my neighbor had invited me to start walking the sidewalk around our complex...and thence somewhere
i learned that less is more...you can't appreciate the deliciousness of a half-mile walk to me...actually moving

as the enbrel started working and boy/girl has it been a winner...i started cutting back on pain pills, decreased the
dosage of neurontin, stopped bextra entirely { NSAID-free for two full years now...WOW!!!! )...no more muscle relaxers.

now, i think i take like six pills a day including frolic acid and calcium w/D (right windy?).

enbrel doesn't fix things that are 'damaged' my ankles hurt all the time, myleft hand is still troublesome, there
is still a little fire in my butt, my scoliosis aches all the time, both feet are bad...I have limitations, life's not 'prefect'...
but biomodified is the way to be...i would not want to repeat the path of getting here. it took almost three months of shots
for the enbrel to kick in- almost gave up on it
i feel alive and voting...i move pretty well somewhat...pain is much better controlled.

NOW, if i could back track, it's not my personal story of note here...what i was preaching was a cautionary-
doctors themselves don't experience the suckiness of arava or the great emotional investment that goes along
with ' mighty zeus, please let this new med be the 'one' that works and doesn't kill me...' and then it doesn't.

and doctors don't experience that desperation behind 'this is so suckey, i can't take it anymore'.
you're the one in control, you've got to take the stuff, it's your decision...not his...and 'you're frontwards, not backwards'
if you slow/halt disease progression...then all the stuff starts to improve as a sort of fringe benefit.

best
aB