my joint damage

[InternetSNOB]

I've had PA since i was 21, now at 25 i have significant damage, i've never taken pics of hem, but i thought i should start. I couldnt get all the pics i wanted, so im starting my fingers, wrists and elbow.


my left hand, notice my middle finger, i cant extend it anymore.
http://i13.photobucket.com/albums/a252/internetsnob/brenda/arthritis/DSC01225.jpg

http://i13.photobucket.com/albums/a252/internetsnob/brenda/arthritis/DSC01227.jpg



my right hand, my thumb has significant damage, notice how far it extends when i try to give a thumbs up
http://i13.photobucket.com/albums/a252/internetsnob/brenda/arthritis/DSC01229.jpg

COMPARED to the thumb on my left hand where i dont have arthritis
http://i13.photobucket.com/albums/a252/internetsnob/brenda/arthritis/DSC01238.jpg

[InternetSNOB]

the index finger on my right hand, notice how when i try to make a fist, my index finger doesnt close in all the way
http://i13.photobucket.com/albums/a252/internetsnob/brenda/arthritis/DSC01231.jpg

http://i13.photobucket.com/albums/a252/internetsnob/brenda/arthritis/DSC01230.jpg


my left wrist doesnt turn all the way up anymore (palm up) is is as far as it will turn
http://i13.photobucket.com/albums/a252/internetsnob/brenda/arthritis/DSC01236.jpg

COMPARED to my right wrist where i d have light arthritis but no joint damge yet, i can turn it all the way up
http://i13.photobucket.com/albums/a252/internetsnob/brenda/arthritis/DSC01237.jpg

[InternetSNOB]

lastly, my right elbow can no longer extend fully. I wish i could get a better shot, but i had to do this on my own... you can see from the inside view, then from the top view

http://i13.photobucket.com/albums/a252/internetsnob/brenda/arthritis/DSC01234.jpg

http://i13.photobucket.com/albums/a252/internetsnob/brenda/arthritis/DSC01235.jpg

[SandraJean]

Hi Bren,

I'm so sorry to see that your pa has done damage to your joints. It's so hard when permanent damage takes place. I surely understand as that's why my knees won't straighten anymore and are fused in a permanently bent position, thus the use of a wheelchaior full time.

What meds are you on right now? I've been on the Humira biologic for 2 years now and the one main reason I wanted to help in the clinical trail study for it was the slowing down of the progression of pa. I know when I started the study I had 98 joints affected and over time it's gone down to 36 joints. My knees were pretty well gone with both pa and osteo when I started the Humira.

Thanks for sharing your pictures with us all as we often see pictures of p, but not often see the progression pictures of pa and how dibilitating it can be.

I think back on my earlier life and I was extremely physical in that I took dancing classes from the age of 4 and graduated from dancing studio at 18. I took tap, ballet, acrobat, modern jazz, baton, toe and ballroom--even taught ballroom thru out high school. I was a majorette in school and marched and performed at all football game.

Don and I both did active camping, tenting in the primitive site, canoeing, swimming, Don was active in the Navy and medic to the Marines, we both did alot of fishing,
I was very active with rollar skating (my Mom and Dad meet at a rollarskating rink and put my sister on I on skates when we were very, very young.

Now. when I look back, I realize that even with an active lifestlyle, it's no guartee that the progession of a diesase such as pa can still make life limiting to me being in a wheelchair now and also Don, with a dx of spastic parapelgia can limit him to a wheelchair too.

We have found that neither of us give up easiliy and we both just find different ways of accomplishing thing and continue to keep on "keeping on"

I wish I could say that I didn't take care of myself and came upon this, but I did take care--I stayed active, took gluscomanine/chrondintion regularly, tried eating right, tried the nasids, and dmards, but untill I realized and the new hope in something to slow progession came along, that I did do as much as I could at the time.

Sorry Bren, that I went on so much, but I want you to know that your pictures will speak to alot of people and I'm so glad you posted them. If I can figure out how to post pictures I'll show my knees and how far they can extend. Thanks for your insight to help others

I'm hoping you will find relief in not having any further damage. Take care,

Sandy

[ouchyk]

BL,

You're pictures do speak louder than words.

I wondered if the damage occured before you started a biologic and if you feel that being on one has put the brakes on the whole damage process?

After meeting and hanging out with you both, I don't notice the hands, elbows, knees, wheelchair, scooter etc anymore. I see two really special people who find enjoyment in life no matter what it throws at them.

PA " bleeps ". :(

Karen

[tmartha]

Thank you very much for posting your pictures - yes, we see p photos often but it's huge to see what pa can really result in - and why we must pay attention as soon as any joints start acting up.

And Sandy, thank you for sharing your story too. As someone newer to pa, I needed these reminders about the importance of being aggressive with treatment EARLY.

Thank you both.
Tani

[Mybadgenes]

Bren,

I agree, thanks for the pictures. :) I am sorry that you being a young person has been afflicted with this and showing such damage.

I could not help but compare my thumbs with yours. The right thumb of mine looks just like yours. My left one is frozen with perpetual swelling that makes it look like a fat chicken leg. That is the one that needs a joint replacement that I haven't done yet. Also, wears a brace.

I am only telling you all this so that you will stay on top of it and get treatment for it to forestall further damage.

Thanks again,
Juanita

[patti2957]

My PA is invisible and I never realized how lucky I am. I'd like to know your meds history and its correlation to the joint damage. Bless your heart.
patti

[Kimbercat]

After meeting and hanging out with you both(Bren and Sandy), I don't notice the hands, elbows, knees, wheelchair, scooter etc anymore. I see two really special people who find enjoyment in life no matter what it throws at them.

PA " bleeps ". :(

Karen
I couldn't agree more, Karen. I can honestly say that in the 2 years that I've known Bren, I didn't notice any of the damaged joints until she pointed them out. And although Sandy is in a scooter, it's difficult to notice much more than her smile and upbeat attitude. Both of you are inspirations! :)

[crazyme]

Sandy,

98 joints? Makes my 6 joints look like nothing. I am in awe of your wonderful, upbeat attitude.

Bren: thanks for sharing. I, too, am curious about your med history. Did you have swelling in your fingers? My index fingers are swollen and, therefore, I cannot bend them either. However, I am thinking that with the sulfasalazine the swelling will disapper and they will be back to normal.

Dawn

[dmedonis]

Bren,

The only thing I've ever noticed about you is what a wonderful, fun, caring person you are.

I'm so sorry that you have been affected this way.

Some days, my spine feels like if I had an x-ray done, it would look like a train that derailed. But for all the moaning and complaining I do around here, I only have a couple of fingers and a toe that are twisting kinda funny as visible signs.

No matter how this rotten disease affects each of us, your pictures are a wake up call to be proactive (or continue to be proactive) about treatment that prevents or slows damage.

Thanks for posting them.

Doug

[InternetSNOB]

continueing my "peep show" ;) You guys will have to excuse my non-pedicured toes. I havent had a pedicure in close to a month!

my left foot. My pinkie toeis very swollen so is my big toe. The only toe on thsi foot NOT affected by arthritis is my 2nd toe, notice how slender and pretty it is.. *sigh* all my toes used to be pretty. When i try to curl my toes, my big toe wont curl anymore.
http://i13.photobucket.com/albums/a252/internetsnob/brenda/arthritis/DSC01240.jpg
http://i13.photobucket.com/albums/a252/internetsnob/brenda/arthritis/DSC01244.jpg

side view of the CURL that WON'T
http://i13.photobucket.com/albums/a252/internetsnob/brenda/arthritis/DSC01243.jpg

[InternetSNOB]

my right toes... once again, the ONLY toe that isnt affected by arthritis is my 2nd toe.. *sigh* i look at it and rememebr what once was. You can see significant sweeling in th 3rd, 4th and pinkie toe. My Big toe is also swollen and like the big toe on the left foot, it also wont curl in.

http://i13.photobucket.com/albums/a252/internetsnob/brenda/arthritis/DSC01246.jpg
http://i13.photobucket.com/albums/a252/internetsnob/brenda/arthritis/DSC01248.jpg

[InternetSNOB]

Thank you all for responding to my post, i cant stress enough the importance of EARLY DECTECTION AND TREATMENT!!!

I started getting swelling in 2 toes when i was 20-21.. and from then on, it was a fast downhill. Once day my left ankle swelled and i could hardly walk, then my right ankle swelled. By the time i was 23, i couldnt walk. At one point i spent 5 weeks bed-ridden. I was e-dermic at the time. It was at that time i finally visited my FIRST rhumy. almost 3 years after the start of the symptoms. I rememebr not being able to climb onto the examination table because my ankles wouldnt be able to support me. I could only climb stairs one at a time and most time i hunched over and sort of crawled up.

I started Enbrel 3 months before my 24th bday. And its actually coming to 2 years this month that i have been on Enbrel. Before that, i was on nothing but ALIEVE as a pain killer.

I basically have full body arthritis at this point. 8/10 toes affects, both ankles, left knee, left hip, lower back, 4/10 fingers, both wrists, both elbows, neck and jaw.

To date, the joint damage that i have and can only be fixed by surgery are 8/10 toes, both ankles, left wrist, 4/10 fingers, right elbow, neck and jaw.


I remember when i first met Jodes (JodyGK, only 3 monts after i started Enbrel) she can tell you, i used to walk on the SIDES OF MY FEET because the damage and inflammation caused to walk that way. I remember going to the San Diego conference in 2004 and being ABLE TO WALK UP AND DOWN THE STAIRS without having to hold on the railing for dear life. Although the Enbrel couldnt regress the joint damage i had already.. it did however slowed any damage the other joints could've had.

I remember a time when i couldnt even get out of bed, or even turn over in bed because my hip would be hurting so badly. Now sometimes they do ache, but there is no damage there and the inflammation is controlled.

My life has been much better and there are times i am very scared (knock on wood) that the Enbrel will stop working and ill go back to not being able to move anymore.

[Ihurt]

You are amazing. I have to tell you that I cannot imagine the pain of feeling the joints disfigure and only having Aleve to help. Thank you for reminding me of what this disease does.

I was 28 when I first felt the destructive effects of it. Mine started with my knees, ankles, and my left wrist. I remember not being able to walk on the feet like you describe, and in January of 2004 after moving to PA, I too spent three weeks in bed, but it was soon after that that I was finalloy diagnosed properly. I have disfigurations of two fingers (not nearly as bad as yours), and one toe will not bend (pinky left), and I have pitting on the big toe (I keep cutting it away). My major joints are affected, and it seems that I have severe spondylitis and spine involvement-discs buldging and cracking (this is my major joint problem). The hip involvement is also heavy (sacroilitis). Lately I feel the progressin in the shoulders, neck and jaw, but Im not on any biologics because of an eye problem, so the progression has a chance to get me at this time, and Im well aware of it,.

Your pictures remind me of my daughters little freind Aisha. She's 13 and has JRA since age 2. Her fingers look like yours and her right elbow does not bend. They tried the surgery but despite the pins and rods,it was unseccessful. She too is my hero.

I think you are amazing at your age to have to deal with this. Im in awe of your strength. Thank you for sharing your pics with us, it did alot to keep my memory green and remind me why I pursue treatment and a cure one day. Im sorry you have suffered like this, you are too young. Im glad that the Enbrel is working for you, it did little to work for me accept clear my skin. Good luck, and just know that Im in awe of your strength to deal with this disease.

Elaine

PS: Your manicure is just fine...that's how mine always looks lol. Also, you talk about the tpke or parkway, this can only be Jersey. Im from Jersey, where are you from?

[MikeK]

Bren,

Thanks for sharing both you pics and your story. To be honest with you, you have such a great sense of humor and you're so much fun to be with, that I never noticed the damage to your hands until you showed it to NPF President and CEO Gail Zimmerman when she joined us for a drink at the conference in Boston. That being said, I'll never forget seeing you break down in the lobby of the US Grant Hotel at the San Diego Conference when you suddenly realized that you weren't alone in your struggle with this awful disease.

Sandy,

That you also for sharing your story. As others have said, I never notice your scooter or Don's wheelchair. I just see two very special people with great senses of humor who are also a lot of fun to hang out with. Talk about not letting something stand in your way -- Sandy and Don did a lot of sight seeing at the Conference in Boston. It was not unusual to see both of them motoring along the streets of Boston. Sandy was in the lead (because she was in a motorized scooter) and Don was holding on as she pulled him along in his wheelchair. Sandy was ill and couldn't join us at this year's Capital Hill Day (she was there in spirit) but last year Sandy didn't even let a bomb scare (which shut down the streets of Washington) get in her way. She simply motored up Capital Hill -- with some help from some friends. Even Gail Zimmerman took a turn pushing Sandy and her scooter up the hill.

It's an honor to know the three of you -- Bren, Sandy and Don!

P.S. Elaine: One of Bren's many talents is imitating accents ( She got mine wrong, because I do not have an accent :D ). She's from California. She's from the San Francisco Bay area to be specific. But since she's so good at accents ( with one exception :D ) she can sound like a native Jersey Girl when she wants to! LOL. ;)

[RichJ]

hi bren, sandy and don,
to see you and all the rest in boston was some thing for me. im glad i didn't miss it. so glad

have a good night all

richard

[InternetSNOB]

Mike, i cant believe you remember that!! I cried so much that weekend, never looked back sense.

This is what the boards are about and sometimes i feel so angry that the point is lost. Its about support, sharing, love and caring. There are times i feel i cant go on, but i know i can name 2 handfuls of people here who will push me, pull me and stand by me through it all!

Im afraid some of my joints arent fixable, even by surgery but im willing to take the chance, anything for some sort of normality. I could kick myself at times for letting it get as bad as it did, and not being smart enough to get help when i needed it.

Ihurt, I'm the SF bay area (cali) but the parkway and turnpike comment is an inside joke i share with Steve (makeitgoaway) from our CHD trip. My entire sig. is made up of inside jokes from CHD. If you've seen Fred's film.. My Skin Is On Fire, theres a part where a girl in a pink jacket was sitting on a couch with Jody talking about her ankles. Thats me :)



I remember when i first met Sandy and her gorgeous "I DREAM OF JEANNIE" pony-tail, all i saw was this amazingly bubbly and happy woman and how easy she was to talk to and get to know! I couldnt help but think how cute she and Don were.. scooting along and not letting anything hold them down. Inspiration! Send Don my love Sandy!

[SandraJean]

I feel so blest to have met alot of you all and to be in contact on the boards, support groups and life in general with so many of you. Thank you for all the wonderful comments to Don and myself. We feel like the lucky ones have come in contact with all of you.

Bren,

I really never noticed your pa when we met---I did notice your fun and out going ways and what a special person you are, right from the first time I met you. You are an inspiration and I'm lucky to call you my friend! You are coming forward and speaking for a whole community of pa sufferers and doing it with grace, information, and love. You are special!!(from "Jeannie"lol)

Mike, Karen, Kim, Rich, Elaine, Doug,Dawn, Patti, Juanita and Tani----Thanks to all of you for all you have given to us and to all the people you inspire everyday in all ways. We are all so lucky to have each other and the boards and the friendships we developed over the time.

My pa and osteo will not be able to be repaired with surgery either as I do have other health issues and would be considered "high risk". Maybe someday in the future with new ideas on the horizon for p and pa, there will be less or no more people having to say I have p and pa.

Take care,

Sandy

[janelee]

Wow...thanks so much for the pictures. I agree on getting treatment early. Does anyone have pictures of the fingernail pitting? We talked about that on another thread and I am not sure I understand what that means either.

[InternetSNOB]

i wanted to push this thread up since i know its been buried since the change.

Hopefully it'll give those who are a bit scared to see the Rhumy a push. I can't stress enough the importance of care and maitenence as soon as possible

[makeitgoaway]

I'm the SF bay area (cali) but the parkway and turnpike comment is an inside joke i share with Steve (makeitgoaway) from our CHD trip.

No doubt - Turnpike!

Hang in there BL! - And thanks for sharing your pix. You and Sandy are a huge inspiration to many!

[Allie]

Hopefully it'll give those who are a bit scared to see the Rhumy a push. I can't stress enough the importance of care and maitenence as soon as possible

Thank you for your selflessness & sharing...

[cordiod]

~Bump~

;)

[abbyroad]

Bren, you are such an awesome gal....I have to agree with everyone else here that knows you on how wonderful, fun loving, and happy of a person you are! It is ALWAYS so much fun hanging with you and the rest of the West Coast gals.... :p ...you're pics are amazing and thank you for sharing them....

Sandy, it was so wonderful meeting you last year in Boston as well....you and Don were so good to hang with and talk to.....

both of you are such beautiful people.. :)

[Stillworking]

Thank you for sharing with all.

[InternetSNOB]

just thought id give myself a bump.

[ouchyk]

bumping and hoping your doing better

Karen

[nyoki]

Wow. Those are some pics. My fingers have some joint damage, but it's my toes that are really disfigured...and I was dx'd and rx'd quickly. I still sometimes walk on the side of my feet (hubby yells when he sees me do that). It actually got easier to walk when my latest (and finest) podiatrist told me to never walk barefoot again, not even to go to another room. I have several sets of crocs (recommended by doc) and they're great.