joint damage. Does it always happen?

[Patti D]

Hi All,

Serenity has raised a good question about joint damage. Those of us who are newly diagnosed (last 1-2 years) have that question always on our minds.You probably had the same question when your treatment first began as well. Is pain & morning stiffness that disappears after 30 minutes of waking in a morning something we can expect to be “normal” Does this stiffness that comes and goes and even mild pain corrected with ibuprophen indicate the disease is not progressing. Are we ultimately going to wind up with joint destruction say in 10 years or less and should we be doing all things now, just in case??

These sound like crazy questions and too much planning in my life has probably gotten me to looking too far ahead. I know we should be living day to day. I know I am feeling better now but that could change tommorrow. I know this treatment is a good option, the best available but really, how did you all know what really was the best for you and were you able to suffer without joint damage.

Thanks.

 

Patti D

[Joe M]

A quick search turned up this, which seems to be a pretty good overview of the mechanics behind joint damage and why it can still occur even if there are no symptoms of RA present.

http://www.webmd.com/rheumatoid-arthritis/guide/preventing-joint-damage-rheumatoid-arthritis

[Serenity]

Thanks for the follow up post Patti, and thanks Joe for the link.  I found this line interesting:

Joint swelling is a reliable sign, though. For the most part, having joint swelling is proof of having ongoing disease activity.

This may sound silly, but how exactly would I know if I have joint swelling?  Like, how would you know the difference b/t true joint swelling or if you are retaining water due to a high sodium meal or PMS? 

My Rheumy glances at my hands and knees and says I have no swelling, but would X-Rays be a better way to determine this? 

I'm nervous b/c like Patti, I have very mild discomfort and can certainly live with it, but I'm terrified of deteriorating down the line.

[Patti D]

Hi Serenity,

I started a new post on this so we, you & I could get more responses. I too am terrified.We need to trust that the AP is working. I have been on it for 5 months and feel a lot better, but there still is that pain. I just got home from work and I got out of the car really stiff. Am I to believe this is joint deterioration occurring or just normal”stiffness ” because I'm 53 and was in the same position for 45 minutes.

Serenity, I want to be way more hopeful than that Web MD article indicated. That sounded pretty “hopeless”. It made me feel that no matter what we do, we are still going to have permanent joint damage. Let's just wait for all of the wonderful “mentors” we have on this board to tell us differently.

Joe- Thank you for the information. Is your wife ok, feeling good andfree of joint damage? I sure hope so.

Happy Days!!!

Patti D 

[Joe M]

Hi Patti,

Michelle has some minor damage to her hands, which occurred in the first year and a half after the dx.  There have been no changes since (according to xrays) and it does not limit her in any way.  She is feeling good.  Thanks for asking.

Joe

[Patti D]

Hi Joe,

Thanks for responding. I am glad your wife is well with little joint damage. Like Serenity,my doctor has not taken xrays. Based on what you said, I am going to call him right away and again request xrays. I started AP in December. Thanks again

Happpy Days!

Patti D

[Susan LymeRA]

I have been on AP from the start of my diagnosis Jan 06.  I have also pursued some alternative care in addition to the AP.  I have incurred some joint damage in my left wrist, but the damage would have been much greater if I had gone the traditional route.

I know this because I finally was persuaded to take methotrexate last Oct, 07 in addition to some aggressive antibiotic therapy for Babesia.  I was feeling great from the aggressive antibiotic therapy and did not want the methotrexate but finally caved in.  After 3 mths of mtx, my doctor found swelling in all my joints.  She was alarmed and yanked me off the mtx immediately.  Prior to the mtx, her exam found no inflammation.  This is a physical exam, not x-rays.

I was stunned to hear I had swelling as I was not in any pain.  She ran a gene test to determine my ability to detox and it is pretty poor.  Some of the stuff I can't detox includes antibiotics so she also took me off all except the doxy 100mg MWF.

Now, I am on a mild chelation (mild because I can't tolerate aggressive) therapy to slowly detox me artificially.  I have had some symptoms return (I was virtually painfree before).  They come and go.  Today I am painfree.  I never have enough pain to warrant a pain pill.  Still, my left wrist cartilage is gone.  I am starting to look into stem cell therapy as a way to possibly regrow the cartilage.

This past Monday, I met a woman who has suffered RA since 1982.  Her fingers are deformed and she has knots in her feet and ankles.  She has been on methotrexate and different biologics from the very beginning.  She is fed up with them and with living with the fear of developing lymphoma cancer from the drugs.  I gave her this website.  She also asked for my phone #.  I sure hope she calls. 

Soooooo, joint damage may occur to some of us regardless of which therapy we pursue.  For myself, I choose the safer routes and keep hoping for full remission.

 I know bacteria is behind my illness and I am sure suppressing my immune system is a very bad thing.  When I was first diagnosed I had severe inflammation in nearly every joint in my body.  My rheumy classified me as “raging RA” and said she has only seen 3 or 4 cases as severe as me in her entire career.  (Yipee…I could skip that award).   Treating infection rather than suppressing symptoms has given me back my life and my health even though the wrist was not spared.  So many other joints completely cleared up that might otherwise have become just like my wrist.

We have a frightening disease and we have to do what we believe best.  The rest is up to God.

Susan

[Patti D]

Amen Susan!

If your case was that severe and you have joint damage in only 1 joint.that is fantastic. Good luck on the stem cell search. I am sure there is some hope there.

Serenity are you hearing this!! This is what I had hoped to hear. There is a way to come out of this ok; a functioning person able to live there life with some minor modifications. This is all I am asking. Thanks.

Patti

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