Can RA affect just one side of the body early in the disease?

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Ginny
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   Posted 8/16/2008 3:24 PM (GMT -6)   
Hi all,
 
Okay, I have new symptoms as of today.  The 2nd and 3rd toe on my right foot look totally deformed.  They're both bending in funky directions. SORE too.  Wow. I can hardly put any weight on that foot today. The toes themselves are really painful.
 
But the toes on my left foot look normal, no pain.
 
Does RA affect both sides of the body, or can it hit one side first and show up later on the other side? 
 
I don't have an RA diagnosis (yet).  Seeing rheumy on Wednesday.
 
Thanks!
Ginny
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, Cozaar, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


sjkly
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Date Joined Dec 2007
Total Posts : 2110
   Posted 8/16/2008 7:41 PM (GMT -6)   
If you lightly touch the skin on your toe without bending any of the joints does it hurt like h***.
If so it might be gout (toes are a favorite gout spot)

As to your other question my first swollen joint involved me being sick for nine months then waking up one day looking like there was a softball inside my left knee. No other swollen joints anywhere. My right knee did not swell up for two months.
My most recent flare which was the worst ever involved both knees and every joint in my left arm but none in my right arm.
Yup, it can be asymetrical at any given time but usually you will get bi-lateral involvement over time.
I hope this was helpful.
Sj

Ginny
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   Posted 8/16/2008 7:56 PM (GMT -6)   
Hi Sj,
 
Yes, thank you that is helpful information!
 
I have had gout before.  This isn't gout.  I had it in my big toe a few years ago and the pain feels totally different.  I've been having foot issues for about 2 months now, and it's in the toes and on the ball of my foot.  Today, the pain is not only on the ball but on the top where the joints meet the metatarsals. The pain goes all the way to the tips of the toes.  This is a new symptom today too.  The pain has always been only on the bottom of my foot.  These two toes are definitly looking deformed and bent in weird directions.  I had xrays done. No fractures. 
 
I tested negative for the RA factor back in February.  I'll have it rechecked next week when I see my rheumy.  My hands and fingers are definitely swollen, but there is very little pain and no deformation.  It's a mystery. 
 
You mentioned you were sick for a lengthy time.  Was it the RA that was causing the sickness? I'm asking because I keep going in and out of feeling absolutely rotten.  It doesn't feel like my lupus or Fibro kind of sick either.  It's totally different.  The fatigue I'm getting is really bad too.  None of this is typical for me and my lupus.  But that can change over time too. So many possibilities.
 
Thank you for your information. I really appreciate it!
Ginny
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, Cozaar, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


sjkly
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Date Joined Dec 2007
Total Posts : 2110
   Posted 8/16/2008 8:25 PM (GMT -6)   
Ginny-they were never sure (at the time) wether the initial illness was caused by the RA (my pcp was sure she told me the very first time I saw her I had RA). They thought I might have had mono-I would not let them test me for mono.
All the tests for RA kept coming back negative but I had all these AI symptoms (I was terrified that it was lupus). My hair was falling out, I had food aversions, I slept 20 hours a day and just staying awake the other four (not continuous) was a huge effort, I had the exact same foot pain you are describing without the obvious inflamation, I was dizzy all the time, constant sinus infections, I had a fever part of every day for nine month.
They put me on steroids at about month five for the sinus infection-I was on them for three weeks-and I felt fabulous during that three weeks. The day my knee swelled up all the RA tests came back positive even though they had been negative every two weeks for nine months-I never had a positve ANA.
I am now convinced that it was not mono because when the RA got totally out of control last sept-oct I had all of the same symptoms again and they went away when the RA came back under control thanks to a great rhuemy and good meds.
Let me know if I can give you any additional information.
Sj

Ginny
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Date Joined Feb 2003
Total Posts : 5511
   Posted 8/16/2008 8:45 PM (GMT -6)   
Oh my goodness...Sj, that is quite the story.  AI diseases can mimick and trick us so often.  All this negative blood testing drives me crazy.  I'm praying that if I do have RA, the tests will be positive. With all the other diseases I have to deal with, I need to have answers and treatment right away. 
 
What is so complexing to me is that when I increased my prednisone a couple of weeks ago to stop a lupus flare, it actually made my pain and sick feelings worse.... Weird eh...  So I immediately assumed it was a Fibromyalgia flare up. Fibro and prednisone don't mix. skull I went back down to my normal dose of prednisone, and the sick feelings went away, but the joint pain stuck around.
 
The foot, heel, ankle, knees, lower back, hips, elbows, wrists, hands, and neck pain has been consistant for almost 3 months now. No matter what dose of prednisone I'm on, whether it's 8.5, 10, 15 or 20mg, the pain is the same or gets worse.  You'd think, if it was inflammation, arthritis, etc, that the higher doses of prednisone would help?  It doesn't. Even my ESR sed rate is within normal ranges. I have been diagnosed with arthritis in my neck. C3, 4, 6, 7. It's moderate to severe.  Not very nice at all.... I also have bilateral sacroilitis.  Again moderate to severe. AS is one thing she's thinking about, and she's told me that. But she's a stickler for positive blood test results, and I came back negative for that antibody. How ironic!! Of course I'd be negative!! LOL.
 
I am actually really eager to see my rheumy on Wednesday. Who says that!  She's been on vacation for almost a month, which is why I haven't been able to get any answers on all this.  I need her to take this very seriously and test me for EVERYTHING.  I'm usually a very easy patient that she only needs to see a couple times a year.  This will be my 4th visit with her this year already.
 
I"m trying to learn as much as I can about AS and RA.  Just in case I do have one of them, or both - good grief, that is my luck. No kidding.... Thanks again for such great info and sharing your experiences. It helps me to wrap my head around it all!
 
Ginny
 
 
 
 
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, Cozaar, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


sjkly
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Date Joined Dec 2007
Total Posts : 2110
   Posted 8/16/2008 9:00 PM (GMT -6)   
Ginny, when my flare this October was at its worst they started me on a medrol dose pack-you know the one that you take 60mgs then 50-..well by the day you take 30 I was horribly ill again-they gave me another dose pack and at the end of the second one I was just as sick as when I started.
I finally was put on 30mgs per day of pred and it took almost a month before I stopped hurting at that dose-so maybe you werent on enough for long enough-though with fibro I might not want to go that high.
I hope your doc can help you sort this out. I don't know much about AS or how these things interact with each other but I hope you feel better soon.

Ginny
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Date Joined Feb 2003
Total Posts : 5511
   Posted 8/17/2008 1:52 PM (GMT -6)   
Hi Sj,
 
Yeah, I've never had to be on a medrol pack (knock on wood).  I won't let my rheumy put me on higher doses of prednisone as the treatment for this if it turns out to be RA.  I've been on prednisone for 8 years now.  That's a long time.  I refuse to be on higher doses than what I need for my lupus.  I'm afraid of the long term consequences of higher pred doses.  I'm already wondering how my body is doing with the 10mg I've been on for so many years.... It's a toughy.  I want to entertain other options. 
 
Even now, on 10mg, my body is telling me I'm on too much.  I get jittery, anxious, hyper, etc, when I'm on too much pred.  It's a great indicator for me that it's time to taper down a little.  My body knows how to talk to me!  It's great.  Trying to balance the lupus with the fibro and the prednisone is really hard sometimes.  And now with the existing arthritis I have, plus this new "stuff", it's going to be a trick to figure out how to make all my diseases happy, LOL.
 
The toes and both feet and ankles are really sore today.  Still all bent funny too. Knees are bad today too.  Great timing for all these symptoms to poke their heads up.  Wednesday can't come soon enough.
 
Thanks again for talking with me about this.  It's just comforting to know I'm not crazy or reading into things too much.  I know my symptoms and the visual evidence is there. I'll keep you posted. 
 
Blessings,
Ginny 
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, Cozaar, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


sjkly
Veteran Member


Date Joined Dec 2007
Total Posts : 2110
   Posted 8/17/2008 3:09 PM (GMT -6)   
Ginny have you talked to your rhuemy about plaquenil or methotrexate-of cource with lupus maybe you've tried the plaq before but I wouldn't be without it.
I totally understand about the pred-when I first went on it I was so relieved and when I started getting better pred was my best friend but the minute I did not need it anymore I could not wait to get off of it.
Sj

Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5511
   Posted 8/18/2008 9:20 AM (GMT -6)   
Good morning Sj,
 
Yes, I talked to my rheumy on the phone just before she left on her longggg vacation.  I told her I thought we should discuss and at least consider the possibilities of me changing my meds to something else.  I'm on Imuran and prednisone for my lupus.  I've never tried anything else. This combo has worked so well for these past 8 years.  I'm very open to trying Plaquenil and methotrexate.  What is odd is that when I was talking with her, she said that I, "Don't have many options" for trying other meds..... Hmmmmm.  Well, I can think of two, that we are talking about right now!  Cellcept is another one.  I don't know, maybe there's something about my body that means I can't take anything else!  I have no idea. 
 
I will need to be on a small dose of pred no matter what.  My adrenals are mildly deficient because I've been on pred for so long.  So that stinks, but even if I can get down to 2mg or something it would be fantastic. 
 
Wednesday is right around the corner, thank goodness!
 
Ginny
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, Cozaar, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


jhmom
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Date Joined Oct 2004
Total Posts : 2244
   Posted 8/18/2008 6:34 PM (GMT -6)   
Hi Ginny,

As I was reading your post I too thought about Methotrexate and Plaquenil, both great meds! You know I have a lot of joint pain and recently started Mtx, it has helped a lot but I continue to have some pain especially in my hands and feet. I am not sure if we need to increase my MTX or what. Plaquenil is also good, I am on that too in addition to Imuran. Plaquenil doesn't seem like it's doing much until you try to come off it and the Imuran is for my gut problems, I've never noticed it helping my joint pain.

I'll be praying for you and hoping your doctor will have some new and great ideas (after being on vacation for a month) and a way to help you and these weird new symptoms. hugs and love
Stacie

Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Hashimoto's, Celiac Disease, Raynaud's, Lupus and Sjogrens
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Folgard OS (B12), Darvocet (as needed) and magic mouthwash (for mouth sores)


sjkly
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Date Joined Dec 2007
Total Posts : 2110
   Posted 8/18/2008 6:53 PM (GMT -6)   
Ginny, I am glad you get to see your rhuemy soon. I agree with jhmom plaq is really subtle you won't notice a big difference right away but it lessens fatigue and morning stiffness and the general feeling of being unwell. It is my rhuemy's favorite med for her lupus patients and she trys all of her RA patients on it as well.
Sj

Ginny
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Date Joined Feb 2003
Total Posts : 5511
   Posted 8/18/2008 8:00 PM (GMT -6)   
Well sign me up!!!  Pop those puppies into my gullet!!! Hehehe.... Thanks Stacie and Sj.  Yeah, it sounds like plaq would be great for my symptoms.  It's the fatigue, stiffness, pain and general ickies that I need help with.  If I can take it while staying on Imuran, that's great.  Imuran has been really good for me.
 
My toes are still all funkified today. They even have red swollen spots on the little joints. both feet now.  So this is good. I need my feet to look and feel like a dog's breakfast for Wednesday.  If my hands could join in the fun that would be great too....The more visible symptoms the better.  Who says this kind of stuff?  No one WANTS deformed toes and pain - except someone with multiple AI diseases who needs help!  OY.
 
Thanks gals!
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, Cozaar, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 8/19/2008 6:29 PM (GMT -6)   
Ginny, ok.. here they come... I'm passing some over, lol. I think the Plaquenil is worth mentioning to your doctor. Of course she may have a reason for not putting you on it but it's far safer than other meds used for lupus.

Funkified?!?!?! LOL I had to laugh when I read this. Not laughing at your pain, only the word. I hope the doctor is able to see with her own eyes how your feet and hands are behaving.

I am praying for your appt tomorrow, let us know how it goes okay?? hugs and love
Stacie

Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Hashimoto's, Celiac Disease, Raynaud's, Lupus and Sjogrens
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Folgard OS (B12), Darvocet (as needed) and magic mouthwash (for mouth sores)


Ginny
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Date Joined Feb 2003
Total Posts : 5511
   Posted 8/19/2008 6:42 PM (GMT -6)   
Oh thanks Stacie.... Yup, caught them!!  LOL!  They came floating down from the heavens....
 
Hehehe... I had a small chuckle when I typed "Funkified".  I couldn't think of a better word. 
 
Thank you for your prayers Stacie.  I'll let you know how it goes tomorrow.  I started a new topic in the lupus forum about my appointment too.  I haven't talked much about this whole RA/arthritis issue with the folks in lupieland.  So I wanted to catch them up.
 
Talk with you tomorrow, and I hope you're doing well too :-)
 
hugs and love back at ya!
Ginny
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, Cozaar, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


RA+CDhouse
Regular Member


Date Joined Nov 2007
Total Posts : 80
   Posted 8/20/2008 6:23 PM (GMT -6)   
it seems like most ppl here are taking this plaquenil along with mtx; I wonder if I should be as well....I am only on mtx and an nsaid; I see my rhuemmy again on Sept 16, and that's the 5 weeks at 15 mg mtx--she says she's giving mtx 5 more weeks to work (I started at the end of may with 10 mg).
 
I can't decide whether it's just more patience needed or whether it's time to add something!  I am sooooo fatigued, and learned from here that I need to be taking way more folic acid than I am (I am actually pretty inconsistant with it and only take 800 mcg).
 
I am going to try taking around 3 mg and see what happens.
 
Best of luck to you in your journey to find relief!  My doc told me this last time that I am not "classical" in my RA presentation!  So I guess I am just as weird as you!
 
~~ pkm ~~
Be who you are and say what you feel, because those who mind doen't matter and those who matter don't mind.-----Dr. Seuss


sjkly
Veteran Member


Date Joined Dec 2007
Total Posts : 2110
   Posted 8/20/2008 6:28 PM (GMT -6)   
Pookie-I am not classic in my presentation either my doc still once in a while asks "Are you sure you don't have lupus?"
Don't skip the folic acid it will make you feel horrible. Also you could try folinic acid on the morning after your dose (fully reduced folic acid so it is not affected by the mtx-just don't take the folinic acid the day of your dose their is a small chance it can make the mtx less effective).
I love my plaq-won't let my rhuemy take me off of it.
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