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Joined: Jan 2008
Posts: 21,346
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Very_Addicted_to_AS_Kickin
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Very_Addicted_to_AS_Kickin
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had to look up petechia and must admit i never had that so don't know if the topical cremes or patches would cause that or not. don't know how serious of a symptom that is, so don't know if you could just try them and see.

but edema was always my big one. just one aleve and i could feel my feet swell up too tight in my shoes. more than that and the edema would not allow the inflammation to reside and it would just build up and build up. that's what happened while on the vioxx, the edema made everything so much worse.

and thus my surprise that after wearing a flector patch, changing it every ~12 hours, but having one on almost constantly since the beginning of april and no systemic edema at all, none.

i feel like i am the poster child for NSAIDs causing edema, and yet the topical ones seem to be perfectly ok for me.

i think i was like you, thinking for a long time that if i was so sensitive to NSAIDs, surely the topical ones would give me at least some degree of gastritis or edema, but thus far, that has not been the case.

i don't use the creme/gel as often, but when i do, maybe up to a week at a time on a spot, applied as often each day as i am allowed, no problems with it either, except that the KIP gel is very drying to my fingers and i have to wash them and lotion them immediately or they dry out and crack terribly. but other than that one little nuisance.........



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: Nov 2009
Posts: 378
I
Fifth_Degree_AS_Kicker
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Fifth_Degree_AS_Kicker
I
Joined: Nov 2009
Posts: 378
Originally Posted By: WendyR
Thanks Irish. Also thanks for all the humour you bring to KA.


*Blush*

It's either laugh or cry, Wendy, and I don't know about you, but I look like crap when I cry. lol

Joined: Sep 2001
Posts: 8,397
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Very_Addicted_to_AS_Kickin
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Very_Addicted_to_AS_Kickin
L
Joined: Sep 2001
Posts: 8,397
Mom2,
My sis lives in the Twin Cities.
I have wanted to go back and fish in Northern Minnesota, but haven't.

I sure miss our grand kids. Lin wants a foster child, but I think we are too tired...

I am not on a plan to reduce inflammation, cept for tomorrow when I get the shot. But I have taken a lot of stuff, and I am sick of all of it. lol..


I keep the New Covenant,
when I fail....I am pulled
back into place by HIM.
Joined: Aug 2003
Posts: 2,717
ironchef
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ironchef
Joined: Aug 2003
Posts: 2,717
yo kids,

all the cox2 nsaids are derived from sulfa- better living thru modern chemisty. 1/3 of all people taking this med are allergic to it.

celebrate can cause tummy trouble too.

and yes mtx can make your hair fall out...this is an old chemo therapy med from back in the late fifties when every cancer patient lost all their hair, felt miserable all the time and most of 'em died anyway.
mtx didn't do a great job killing cancer, don't do a great job on arthritis either.


Joined: Dec 2008
Posts: 5,231
WendyR Offline OP
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Joined: Dec 2008
Posts: 5,231
Well Ben, I've started lowering the prednisone again, went down from 6mg to 5mg this week. I think the doc agrees that, whatever my blood tests say, if I can't get off prednisone then the mtx isn't working well enough. So I'm really on the final stretch to determine if mtx is working or not.


Wendy

Rheumatoid Arthritis
Methotrexate, Celebrex, Plaquenil
Joined: Dec 2008
Posts: 5,231
WendyR Offline OP
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Joined: Dec 2008
Posts: 5,231
Well, after five days at 5mg of prednisone, in other words a reduction of 1mg, I'm already noticing worsening pain in my sterno-clavicular joints, hands, wrists, elbows and knees. I'm sitting here at 1:45 am again with insomnia waiting for pain meds to kick in.

And... I stupidly let myself run out of my celebrex script - how silly is that. I took my last one this evening and don't have one for the morning. The pharmacy doesn't open until 10:00 am on Saturdays and I've agreed to do two hours of volunteer bookkeeping for the local cultural committee - they're showing up at my house at 10:00 am so I'll have to wait until I've finished doing that before I can scoot down to the pharmacy and pick up my repeat prescription. If the pharmacy only opened earlier, I could have nipped out to pick up some celebrex and take it before they got here. Oh, well... that'll teach me not to pay attention when my supply is running low.


Wendy

Rheumatoid Arthritis
Methotrexate, Celebrex, Plaquenil
Joined: Nov 2009
Posts: 378
I
Fifth_Degree_AS_Kicker
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Fifth_Degree_AS_Kicker
I
Joined: Nov 2009
Posts: 378
I'm sorry the pain is kicking in, Wendy, but not sorry if it means you find out if the mtx is worth it or not. (I hate the stuff, as you know, and believe your doc and you should hate it too. ;-()

The AM is the darkest, loneliest hour, especially if you are in pain - just know you're not alone. *hug*

As for your 'scrip... don't you have your chemists/pharmacy number?

When I run out of something necessary, (only happened once) I just phone my local chemists and they send someone up with my tabs. Mind you, I live in a smallish town and the chemist not only knows me, he knows my mothers grandmothers second cousin once removed - and all their relatives. *grin*

Joined: Dec 2008
Posts: 5,231
WendyR Offline OP
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Joined: Dec 2008
Posts: 5,231
Hi Irish,

My husband went down and picked it up for me so I didn't have to wait too long. We're so rural here they wouldn't be able to send anyone to my house. It's about a 7 km drive - not too far but further than they would want to help me out.

Don't feel as bad today so I'll just carry on and see how it goes. I won't lower the pred by another 1 mg for another week or two so maybe it'll settle down.

Thanks for the support


Wendy

Rheumatoid Arthritis
Methotrexate, Celebrex, Plaquenil
Joined: Jan 2010
Posts: 839
Ninja_AS_Kicker
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Ninja_AS_Kicker
Joined: Jan 2010
Posts: 839
Hi wendy.

It took some time to read the whole thread. I am 100% sure your doctor will find the combination of drugs that will help you pass this. I know there is a long list of DMARD's.

I've been in a similar situation last year when things did not seem to get better no matter what and sitting on a chair or dressing my self was a real chalenge. The thing will make you go on is you family and your friends. They are always there for you.

Try thinking only of the good things in your life now, they are there even if maybe you'll find the list short. And try avoid stress situations, for me those were the worse...


34. Some rheumys say AS stage 1-2 some others say USpA
Also UC - rectocolitis.

UC curently in remission since feb 2011.
AS/USpA remission march-aug 2011. Flare - sept-nov 2011 (antibiotics). Remission now...

Modified NSD/SCD. Cook your own !
____________________________________________________________
Mesalazine-Salofalk 500 mg/day

And the list of my medication has become verry short after some years on this diet smile
Joined: Dec 2008
Posts: 5,231
WendyR Offline OP
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Joined: Dec 2008
Posts: 5,231
I thought I should update this thread now that a few more months have passed. I've been taking 25mg of methotrexate once a week for several months now and have been slowly able to lower my prednisone dose. Each time I lower it, the pain levels go up but then seem to settle down again after a week or two and I'm back to normal. So now I'm down to 4mg of prednisone and about to try going down to 3mg.

I don't seem to have any more hair loss (it hasn't got thicker either) so it's just a bit thinner but it's not too obvious. I don't seem to have any other side effects from the mtx.

Despite the lower dose of pred, I still haven't lost the weight I gained, although I am walking again, often up to 3 km per day. I still feel extra hungry all the time so if I try to cut back too much I feel dreadful. I'm assuming that's still the pred giving me an increased appetite. I guess I haven't gained that much weight but I'm used to being a fairly small person so seeing pictures of myself looking chubby really bother me. Plus none of my clothes fitted any more.

Looking back through this thread I can see that I had increased hip and shoulder pain for a while but, at the higher dose of mtx, that seems to have settled down as well. UNLESS I miss a celebrex dose. That still seems to be essential. I figure once I'm off pred, I'll take another look at the celebrex. I just don't want to be taking more than one toxic drug if I can help it but I might have no choice.

I do have adhesive capsulitis (frozen shoulder) in my right shoulder probably from lack of use for months (due to pain).

On the whole, I guess mtx seems to have my RA under control for now.


Wendy

Rheumatoid Arthritis
Methotrexate, Celebrex, Plaquenil
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