Erosions?

[whaleharbor]

Just wondering what, if any, reversal or slow down in erosions anyone has experienced on AP.

–whaleharbor

 

Minocycline 100mg every other day with food...lots of food: Zydus brand. Celecoxib 200mg twice per day: Greenstone brand.

[mom]

Hi,

I've been on Doxy for almost 2 years, I haven't noticed any reversal of joint damage, I notice worsening of my hands.
I've had RA for 11 1/2 yrs, my sed rate has always been high. As long as there is inflammation, joint erosions will continue to occur.

mom

[Sierra]

I had one erosion before starting AP; none since (1.5 years on it).

Sierra

[krazykrow]

It is my understanding you can take certain supplements ie. Glucosamine/Chondroiten to help slow or repair damaged joints.
My doctor (Franco) recommends it!!

[whaleharbor]

Great idea!  My Rheumy that I just fired said my hands were very bad…I'm hoping to go on AP soon (May) but I'm just wanting to know if erosions have been stopped by AP.   I suspect if the inflammation is down, erosions won't happen…but I don't know.  I've asked that of the Rheumy and he didn't know either…hence the new doctor…

Glucosamine and Chondroitin (sp?) seems like a great idea and something that certainly won't hurt.

–whaleharbor

Minocycline 100mg every other day with food...lots of food: Zydus brand. Celecoxib 200mg twice per day: Greenstone brand.

[Joe RA]

Hi Whaleharbor   I had joint damage after I started AP and I believe it was bacause I had severe RA . My hands and knees got worse for about two years after starting AP and then they stopped when my sed rate went below 40, no more damage after that. This is why I think it is so important to start AP as soon as posible in these diseases, this is no quick fix , it takes a while to kill these  :angry::angry: and it does, please newbees read my testimonial and those of others. AP works, give it time and be a patient, patient The best to all…. Joe RA

[Joe M]

Hi
The famous MIRA study, a double blind study that proved the effectiveness of minocycline for RA, said this about joint erosions:

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[John McDonald]

Joe quoting the MIRA

I think the point is that if you have inflammation and pain from disease or herx then you are at risk of erosions. This group of daily dosers looked similar to the placebo group at 48 weeks (11 months). We AP'ers expect or hope to see improvement in 8 to 14 months or so, varying widely by individual. Things like alternate vs. daily dosing, IVs or oral, and individual luck affect the time to respond, possibly along with vitamin D levels and other immuno suppressive treatments. The MIRA conclusion is disappointing but it sounds about right to me. On the other hand, I haven't needed or taken a pain killer for RA for a 2 or 3 years now.:)

Good post Joe![/size]

[whaleharbor]

Lack of pain is one thing…lack of disability down the road would be good too.   I truly have very little pain now (thank God) but my rheumy (yes, the one I fired) said that he wanted to put me on MTX and Enbrel (even though my sed rate is 23) because he says my hands are so bad…even though he's comparing xrays now from xrays 17 years ago…I had no xrays in between.  I'm thinking he's nuts…but I'm also wondering if there is some truth to what he's saying.  He scared me so bad…he said he had no idea how I was walking (I wore high heels to the appt) and he said I'd be crippled within 5 years.  It's been 17 years of this dreaded disease and of course I'm not who I used to be…but I'm not crippled.  I don't know how much is a scare tactic to get me to take the meds he wants me to take and how much truth there is to it all.

So I'm hoping that if I have erosions…not sure if I do …not sure if you can see them on xrays…I'm hoping that minocycline will help to avoid future erosions.

 

Minocycline 100mg every other day with food...lots of food: Zydus brand. Celecoxib 200mg twice per day: Greenstone brand.

[Maz]

Hi Whaleharbor,

Really sorry to hear you were scared so badly by your rheumy. These “medical pronouncements” are something else, eh?  You didn't mention how long you'd been on AP or if you've been on other meds throughout the years, but it sounds like you're doing really well now. I look forward to the day I can get back into my heels like you! 😀

Only a thought, but if you have an AP doc, why not take your X-rays (the old and new) to them and ask for a second opinion. It may well be that this damage occurred long before you were on AP and it's now been halted. Although probably no way to tell when the damage occurred, if you're doing well now, I don't understand either why it would make sense for this doc to push the big guns. I think in your high heel shoes, I'd question this, too. 😉

Peace, Maz

[whaleharbor]

Maz,

I appreciate your perspective and wisdom.  I'm not actually on AP per se.  My rheumy put me on 20mg of doxy once per day a year ago…so I spent 16 years on nsaids and prednisone refusing mtx and other meds much to my doctor's complete dismay.  I got much, much better on the mere 20mg of doxy once per day but am still not well.  My sed does go up sometimes, crp is way too high. Plus if I miss doxy by even an hour…holy cow, the pain starts almost immediately and severe. 

Anyhow 2 rheumys told me I needed mtx and/or mtx and enbrel based on I don't know what and they are telling me that will not refill my rx for doxy.  Can you believe it?

So I've made an appt with an AP doctor thinking that if I had a real dosage from a doctor who actually believed in this, I might actually get 100% better.

It's a constant battle and yes those medical pronouncements have sure caused me a lot of stress and heartache.  I'm just totally freaked out about the “erosions” but I will take him the xrays. 

Thank you again.

– – whaleharbor

 

 

Minocycline 100mg every other day with food...lots of food: Zydus brand. Celecoxib 200mg twice per day: Greenstone brand.

[Maz]

[user=217]whaleharbor[/user] wrote:

So I've made an appt with an AP doctor thinking that if I had a real dosage from a doctor who actually believed in this, I might actually get 100% better.

Hi Whaleharbor,

So great you're booked in to see an AP doc and how odd the rheumy would agree to doxy (in such a miniscule dose) when mino is an approved off label DMARD for RA. Oh well, that's in the past now and you've got a new road back to look forward to!  Let's put it out there that you'll respond really well to mino, especially as you've noticed how you feel worse just before your next dose. Let us know how your AP appt goes and all the best for that!

Peace, Maz

 

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