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#414930 10/05/10 10:02 AM
Joined: Mar 2008
Posts: 215
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Second_Degree_AS_Kicker
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Second_Degree_AS_Kicker
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Joined: Mar 2008
Posts: 215
Hi All
I am feeling HEAPS better on Methotrexate! I decided to write this post b/c MTX often gets a bad rap around here.
I once remember reading a fellow kicker's advice "Friends dont let friends take methotrexate" and it really spooked me.
My disease has progressed in the 3 years since I was diagnosed with uSPa. I was recently upgraded to regular AS after my x-rays came back with Grade 1 and 2 damamge to my SIJs.
I thought I was doing well on SSZ, but in reality, while it completely stopped my fingers flaring, SSZ only reduced the sacral pain enough for me to function, unfortunatley not enough to stop those darn joints eroding!
My rheumy put me on the road to Humira and the last stop is Methotrexate. I think to qualify for subsidised Humira under the Australian pharmaceutical scheme, I need to show that the DMARDS do not cut it. Well maybe one does!
I was in the worst flare of my life a month ago, and I agreed to trial low dose MTX once a week. Its making me quite nauseated, I vomit the day after I take it - but I have been pain free for 20 days IN A ROW! Its such a relief.
Maybe, if my liver stays happy, I could do this for a couple of years. I am not so keen on the anti-TNF while living with children who get sick a lot! But if I can stick it out until the time they reach say 7 and 10, this sounds like a good plan!
Regards to all
Felicity
ps. Thanks to Wendy for encouraging words about MTX

Joined: Jul 2009
Posts: 296
Third_Degree_AS_Kicker
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Third_Degree_AS_Kicker
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Posts: 296
Well thats grrrrrrrrreat that is working for you. I hated the stuff! but if it works why not keep taking it. But you do need to be careful around sick people because it does lower your immune system also. take care


Life is short stop and smell the roses
Joined: Dec 2008
Posts: 5,231
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That's good news, Felicity. I hope the nausea goes away. That's not fun.

In fact, fear of nausea was one of the reasons I delayed trying mtx. I've been warned to avoid vomiting because of the damage to my oesophagus and the fear of rupturing it. So I was very nervous of mtx and that's why I started on such a low dose (2.5mg per week!!). And increased so slowly.

As a result it was a long time before I saw any improvement but the benefit was no side effects at all until the dose got quite high and then just some slight hair loss. Although I possibly have some fatigue from it at this high dose (I'm on 25mg per week now). It's hard to assess whether the fatigue is from the mtx as there are so many other possible reasons (including intermittent insomnia) so the reason I think there MAY be a connection is that the fatigue seemed to get worse around the time I increased the dose above 20 mg.

I truly hope mtx continues to work for you. So many of the available treatments, including anti-TNFs, seem to have a limited life in terms of providing relief so it seems that the longer any one of them works, the more options you may have in the future if it stops working.

Best of luck.


Wendy

Rheumatoid Arthritis
Methotrexate, Celebrex, Plaquenil
Joined: Nov 2001
Posts: 18,141
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Very_Addicted_to_AS_Kickin
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Very_Addicted_to_AS_Kickin
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Hi there, I'm so glad you're getting some relief!

The thing is that we're all different and will all respond differently to the various treatments (whether alternative or alleopathic). What works for one will not always work for the next guy. The same goes for how we react (side effects and such) to a treatment. All we can do is share our own experiences. After that, it's up to the individual. You have to make the decision that's right for you. smile

Hugs,


Kat

A life lived in fear is a life half lived.
"Strictly Ballroom"

Joined: Jan 2008
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Very_Addicted_to_AS_Kickin
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Very_Addicted_to_AS_Kickin
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glad you found something that seems to be working so well! clap

though not sure i'd be tolerant of the vomiting, but that's just me.

just a thought, maybe as you were so cautious of the mtx but have found that its really not as bad as others made it out to be, maybe you'd feel the same way about the tnf-blockers once you were on them, just a thought. if you decide that you don't like throwing up, or something.

but i know what you mean. my last rheumy made me so paranoid about prednisone and what it would do to me that i suffered without it much too long. and when i finally tried it in desperation, it was so fantastic, i can't believe my rheumy cautioned me against it so strongly. i know long term it does nasty stuff like bone loss. but to think i could have had that short term releif years earlier if the doctors hadn't instilled such needless fear in me.

anyway, mostly, glad to hear how much better you feel! heart



sue

Spondyloarthropathy, HLAB27 negative
Humira (still methylprednisone for flares, just not as often. Aleve if needed, rarely.)
LDN/zanaflex/flector patches over SI/ice
vits C, D. probiotics. hyaluronic acid. CoQ, Mg, Ca, K.
chiro
walk, bike
no dairy (casein sensitivity), limited eggs, limited yeast (bread)
Joined: Sep 2009
Posts: 1,236
Copper_AS_Kicker
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Copper_AS_Kicker
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Posts: 1,236
What time of day do you take the MTX?

I found that if I took the MTX before bed, after a snack, that my stomach would generally feel okay the next day. If I stayed up after I took it, I could feel myself starting to feel sick, but if I just went to bed I guess I slept through the worst.
I'm so glad it is making you feel better..


Micki
Mom to 9
Dx'ed Ocular Herpes, Sept. '08
Dx'ed AS May '09, suffering on and off since 1979
Dx'ed Non-Hodgkins Lymphoma May '08, relapse Oct '11
Joined: Nov 2009
Posts: 378
I
Fifth_Degree_AS_Kicker
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Fifth_Degree_AS_Kicker
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QUOTE: was in the worst flare of my life a month ago, and I agreed to trial low dose MTX once a week. Its making me quite nauseated, I vomit the day after I take it - but I have been pain free for 20 days IN A ROW! Its such a relief.QUOTE:

Good for you, sparkgirl. I'm glad the MTX is working.

Being pain free is such a blessing - nausea, not so much..;-(

QUOTE: Maybe, if my liver stays happy, I could do this for a couple of years. I am not so keen on the anti-TNF while living with children who get sick a lot! But if I can stick it out until the time they reach say 7 and 10, this sounds like a good plan!QUOTE:

While I hated being on MTX, I did feel relieved to have regular blood tests to show my liver wasn't shutting down (yeah, the Drs scared the life outta me lol)

I feel the same with the anti-TNF. Regular blood tests, appointments with my rheumy. Plus, I have kids, they get sick sometimes, I do too, but thankfully, I shake it off, as I always do/did.

*taps head*

Touch wood, my immune system is going big guns. lol

Joined: Mar 2008
Posts: 215
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Second_Degree_AS_Kicker
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Second_Degree_AS_Kicker
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Joined: Mar 2008
Posts: 215
Thanks Wendy
My dose is 10mg at present.
Regarding the fatigue, the day after the dose is the worst, and on that night I am sleeping 12 hours straight. This is an absolute pleasure as I am an intermittent insomniac too,(I was blaming the SSZ for bad sleep, but who knows what causes what???)
Your comments have been so useful to me, thanks very much.

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Second_Degree_AS_Kicker
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Second_Degree_AS_Kicker
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Joined: Mar 2008
Posts: 215
Thanks Irish, touching wood also!

Joined: Mar 2008
Posts: 215
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Second_Degree_AS_Kicker
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Second_Degree_AS_Kicker
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Joined: Mar 2008
Posts: 215
Thanks Micki, I will experiment (currently taking it at 9.30am) so will try a night dose. Thanks for the reply!

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