• rsongbird rsongbird
    October 14, 2010
    What helps inflammatory erosive osteoarthritis?
    rsongbird rsongbird
    October 14, 2010

    Yes, I know most osteoarthritis is not inflammatory, but mine is (and severe)...which makes it hard to find any answers.  All my major joints -- hips, shoulders, knees, lower spine, and all fingers -- are affected with inflammation, deforming osteophytes, thinning cartilage, and several joints are bone-on-bone. I frequently get bursitis as well.  I had one hip replaced, and am starting visco-supplementation with one knee.  I am serum-negative (normal SED rate, normal TNF, no Rheumatoid factor).  I had no positive results trying many DMARDS, many along with Methotrexate -- mostly I just got hair loss, and no change in my arthritic condition.  I take many anti-inflammatory supplements, and the NSAID Mobic. Anytime I try to take a break from Mobic I quickly get more deformity in my fingers.  I take Tramadol (Ultram) for pain around the clock every day.  Could biologics like Enbrel or Remicade help me slow or stop the disease?

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FROM OUR EXPERTS

  • V
    V
    Health Guide
    October 14, 2010
    V
    V
    Health Guide
    October 14, 2010

    Hello, and welcome to our community.   I was stunned to see your question. Only because, I too, have erosive inflammatory osteoarthritis. There really isn't much information out there that I can find. My rheumatologist told me that it is like RA only it doesn't attack organs. From the information I have been able to find, EIO is a subset of generalized osteoarthritis which is a subset of osteoarthritis.  I don't believe it is all that common.  I can't take NSAIDs becuase of stomach issues. Since my dx earlier this year, I have been taking Plaquenil.  It takes a while to kick in, but I can tell you that it does make quite a difference for me. It is an anti-malarial drug and doctors use it to treat lupus and RA. They don't know why it works for RA and lupus, but it does. It is one of the DMARD group of meds...disease modifying antirheumatic drugs. It is also one of the safest, from what I have read. I also have fibromyalgia, so I take a med for that and I also take Tramadol. My rheumy prescribed a joint supplement made from egg membrane. My vitamin D level is low, so I take 20,000 units of Vitamin D a week. Have they checked your Vit D level? I'm sorry you have this condition. I am new to this, so I can only share what I have learned so far. I see the rheumy again later this month. Today I am having a nerve conduction test because my hands and wrists are painful and I cannot play my guitar anymore. Some days are better than others, though. I have some sort of nerve entrapment, I think. I also have osteophytes. I can see one of them on my wrist through the skin. It is a bump that is growing every year. Wrist spints help the pain sometimes. It is hard to determine what is generalized osteoarthritis and what is the EIO. My rheumy says I have both. Is that also your situation? My worst problems with EIO are with my hands and my feet. Sorry I don't have anymore information than this. I think you need to talk to your doctor about your options. I hope he is more forthcoming than my rheumy, who is sort of "closed mouth" about a lot of things. Peace, V

    • V
      V
      October 14, 2010
      V
      V
      Health Guide
      October 14, 2010

      P.S.  I forgot to say that I get Synvisc shots in my knees every six to twelve months.  They help me a lot. Both my knees need replaced, but we are trying to wait until I am a little older. Hope this help! V

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    • ronie
      October 14, 2010
      ronie
      October 14, 2010

      Hope your tests go okay today.  hopefully also they give you results immeditately.

       

      Hugs and best vibes!

      Ronie

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    • rsongbird
      October 14, 2010
      rsongbird
      October 14, 2010

      We are very, very similar...and it really sucks.  Like you, I have both types of osteoarthritis and fibromyalgia. I was first diagnosed with arthritis 24 years ago at age 38 due to beginning enlargement of my finger joints.  My Mom had both osteo and rheumatoid arthritis, and responded to gold injections, and DMARDS like Methotrexate.

       

      My hands are considered to have IEO, with marked deformity: huge osteophytes and distorted fingers angling out of alignment.  I have very limited ROM with my fingers and cannot grip or make a fist.  It affects the medial and distal joints of every finger, plus the basal joint of the thumbs. At times I've had to wear braces on my hands to support my thumbs, as I was unable to even hold a Metrocard to get on the bus or turn the key to unlock my front door.

       

      Over the past 6 years we've discovered I have osteoarthritis in my hips, shoulders, lower spine, toes...and I even have an osteophyte visible on my collarbone! I was told the problem in my hip (that was replaced) was regular osteoarthritis caused by congenital coxavara (hip deformity) that was undiagnosed until the hip replacement.  But there is inflammation and often bursitis in all my joints. I just got cortisone shots in both shoulders and my knee to fight the inflammation.  But no markers are showing up in my blood, and arthritis does not seem to affect my organs.

       

      So i agree with you...it's hard to actually tell which is general osteoarthritis and which is IEO.

       

      As I initially mentioned, none of the DMARDS work for me, and I did try Plaquenil.  The only NSAID I can tolerate is Mobic....if you haven't tried that one, you should.  It has a difference balance of the prostaglandins that it targets, and is less likely to cause gastrointestinal distress. I've been on it for close to 20 years...it's now a generic (Meloxicam) and is cheap.

       

      I have gone to MANY rheumatologists and none have answers for me. I'm actually working with a holistic-oriented Osteopathic Physician.  My Vit. D was low and now is okay with me taking 4,000 units daily.  I also take 12,000 units of Fish Oil...plus tons of other supplements and herbs.  I also take Tramadol around the clock daily as my basic painkiller. Sometimes use Lidoderm patches on painful low back or knee or shoulders.  Sometimes sleep with icepacks wrapped around my knee. I always need to sit on special firm cushions on my couch and in my car. 

       

      I take several exercise classes - stretch, yoga, and water aerobics - and next week am starting some personal training to strengthen my knees and shoulders.

      Earlier today I had my first injection of Supartz (like Synvisc) hyaluronic acid into my knee...we'll see how much that helps.

       

      Well...good luck to both of us!  We're on our own in this exploration.

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    • ronie
      October 15, 2010
      ronie
      October 15, 2010

      Well Rsongbird,

      It sounds like you too are a veteran at this and have educated yourself to a degree where you would not be surprised to taken back by anything a rheumie could tell you about your body. 

      Again, Welcome to the healthcentral community.  I look forward to hearing more from you.  You sound like a good addition to our online family. 

       

      Good luck,

      Ronie

      5f0638a8-5906-4d84-b3c1-8c02766b7a67
      1.03.01
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    • V
      V
      October 15, 2010
      V
      V
      Health Guide
      October 15, 2010

      Wow, Rsongbird!  You really have really been through it. Do you have high bp, too?  I have trouble w/NSAIDs because they raise my blood pressure, in addition to tearing up my stomach. They counteract the Lisinopril I take in the evenings. I take Cardizem in the morning, and NSAIDs don't interact w/that drug. Unfortunately, the doctors  do not want to change my bp meds for some reason. I am going to ask about Mobic, though. If I really think about it, I guess I have a laundry list of issues, too...Osteoarthritis, Fibromyalgia, Asthma, High BP, DDD in my cervical, thoracic and lumbar spine, severe DJD in both knees,GERD, spurs in both shoulders, spurs in my hands and wrists, torn cartilage in one wrist, cysts in both hands, recurrent UTIs, bulging discs. Geesh, I'm stopping now. That is a long enough list. I'm so happy to have you on this board. If I learn anything new about IEO, I will share it with you, and it would be great if you could do the same for me.  Peace to you, V

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    • rsongbird
      October 15, 2010
      rsongbird
      October 15, 2010

      Hi, V!  I don't have high BP or asthma. My blood pressure is 130/80 while taking Mobic 15mg. (for a long time I was taking Mobic 7.5mg, but I've had a lot of inflammation lately, so I upped my dose).  

       

      No UTIs but some IBS symptoms, which I manage with supplements.  For example, I take extra Magnesium to counteract the constipating effects of other medications.  When I have the opposite problem, I take a course of probiotics to normalize my intestinal flora and strengthen my immune system.


      Most of the other items we share, but not necessarily in the same locations.

      I don't have GERD, but I have EPR (esophageal pharyngeal reflux), which is very similar except that the acid goes up to my vocal chords instead of to the chest as heartburn. This is not uncommon for singers (which I am -- also a songwriter). 

       

      In fact, I write and perform songs about my medical problems and other topical subjects.  One song I wrote several years ago is called "Medical Mess" in which I detail most of my diagnoses -- yes, it's a LONG song...and now I should add several stanzas with my more recent diagnoses!

       

      If I learn anything new, I'll post it here for you and anyone else who's reading.

       

       

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    • patjoppien
      June 20, 2011
      patjoppien
      June 20, 2011

      Hello,

      I am 66yrs. I was diagnosed with DJD 26 years ago. The first Rheumatologist I went to took xrays of my swollen hands. I still have a copy of the report and it states that I had "sea-gull" deformities of all of my distal finger joints at that time. I don't think he knew at that time what the "sea-gull" deformities really were because he said Osteo/nothing more. I stopped going to him. My hands, even now, are swollen, stiff and very painful. I have seen 4 Rheumatologists in the last 26 years and none of them could offer me any relief. I took Celebrex and that caused stomach ulcers. I have been on every Arthritis medicine that has come on to the market. None of it helped me.... I took Placquenil for about 15 months and the hands got worse. So I stopped taking it and told that Rhumatologist to take a hike because she wouldn't listen to me.  For the last 2 1/2 years I have been taking 4 mgs of Medrol and it keeps the inflammation down to a tolerable amt. Now the stupid people that make Medrol stopped making it (? - don't know how long) My internal medicine Dr. is a gem, but I don't think she understands exactly what I have or how I suffer.............. My daughter is 41 and has been diagnosed with the same crap, but her Rheumatologist gets it and has her on Metheltrexate and it seems to be helping her... I would go to her Dr., but it is 4 hrs away. Regards to all...

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    • nancy h.
      June 07, 2012
      nancy h.
      June 07, 2012

      Hello, I am so happy to find this site as I too, can hardly find any info on the web about my condition.  I was amazed at your answer!  I wish I had all the info on my body that you do in regards to having this disease.  I was just diagnosed with EIOA last week after being frustrated for a long time with incorrect diagnoses.  I have been dealing with so much pain and deformity, I truly did not know anymore, what was going on.  But in reading your responses on here, I am becoming educated, so thank you!  I am a recent widow, 52 years old, and since my husband passed away all heck has broke loose!  It just seems like I am being attacked.  The pain in unbearable and has now begun to affect my sleep, which is terrible for me because I am still trying to work.  I am self employed, so I can make my own schedule but am finding out more and more each day that it is about time to consider disability.  And I hate that.  I have been so active all my life.  I do yoga (not enough now though) and I garden, have 3 doggies I love dearly and like to take on walks, you know, just love being busy doing things.  I have kept my weight the same pretty much since high school and tried to care for my body so I could be healthier later in life, so this is really causing alot of anger and frustration for me.  I do alot of natural remedies, so I have about tried them all! lol  I plant alot of my own food, and try to treat myself naturally as best I can, but I am running out of options.  I am on a pain tablet, and even though I am taking it now everyday, it is nowhere near enough to take care of the pain I am in.  I drink a "green drink" each morning that consists of kale, spinach, cinnamon, alfalfa, and a whole lot of other things.  I also drink the raw cabbage juice as well in the a.m.  I take a shower in the a.m. to warm my joints and I am starting the day with a pain reliver.  If there is any chance something simple and natural will work, I will try it!  I have even considered leeches.  They help alot of people but are very expensive.  I am at my wits end, and love that I found this forum, thank you!  Sorry to have gone on like this, I just do not know what to do without delving into all of the different drugs out there, one at a time til I find something, but I want to explore all the natural paths I can find first.  Thank you for listening (or reading! lol)  Have a great day!  May we all find relief from this horrible disease.

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    • Kathy
      June 19, 2013
      Kathy
      June 19, 2013

      Your answer sounds just like me.  I was just dx with this condition.  I just saw the rheumatologist yesterday.  I am still getting a work up for RA tho I tested negative for RF factor a couple of years ago but a low positive ANA. I have double carpal tunnel and wear splints at night.  I can't take NSAIDs due to kidney disease.  Glad to hear you're getting relief from Placquenil I'm getting px filled today.  Very painful fingers I including a trigger finger.  Fingers have swelled so much can't wear my wedding rings.

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  • Lene  Andersen
    Health Guide
    October 15, 2010
    Lene  Andersen
    Health Guide
    October 14, 2010

    I simply don't know enough about this condition to say much one way or another, but it sounds as if V has given you some good advice.

     

    Thank you for bringing this to my attention. I'll talk to my site producer about interviewing rheumatologist about this condition so we can have the information that can help you and other users.

    • V
      V
      October 15, 2010
      V
      V
      Health Guide
      October 15, 2010

      That would be awesome, Lene. There really isn't much info out there. I'm not sure whether my fatigue is caused more form the fibro or if IEO can cause fatigue, also. Then, again, it could just be the pain causing the fatigue...??? It isn't bad every day, but sometimes it is a real pain...everywhere! Any information would be greatly appreciated.  As you know by now, by rheumy isn't much of a communicator. Sometimes I wonder if they really know that much about it. I did read somewhere that a certain percentage of people w/IEO go on to develop RA. I'd like to know what the treatment options are, especially if this condition continues to progress and destroy my joints.   Thanks again!  V

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    • rsongbird
      October 15, 2010
      rsongbird
      October 15, 2010

      I agree with Miss V that getting some expert opinion on this particular issue would be awesome. It occurs to me that if the two of us are so similar, there must be many others out there under the radar. Perhaps it's because this issue is never discussed in Arthritis Today or any of the other Arthritis newsletters I subscribe to, so people don't even know this differentiation of EIA exists. It's time to bring EIA out from the shadows!

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    • rsongbird
      October 15, 2010
      rsongbird
      October 15, 2010

      I meant EIO, not EIA.

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    • V
      V
      October 17, 2010
      V
      V
      Health Guide
      October 17, 2010

      Hi, G,

       

      I just found an article on the web that says come rheumatologist are now considering IOA to be a low grade form of RA. Interesting. It went on to say it should be treated agressively. This article bolsters my suspicion that the doctors aren't quite sure how to categorize IOA. And the beat goes on.......

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    • V
      V
      October 17, 2010
      V
      V
      Health Guide
      October 17, 2010

      Hi, Lene,

       

      Just read an article on IOA that says some doctors consider it to be a low grade form of RA. I don't think they know all that much about this condition. At least I know there are many unanswered questions. The article went on to say it should be treated aggressively. Interesting.

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    • rsongbird
      October 17, 2010
      rsongbird
      October 17, 2010

      V,

      Can you give a link to the article so we can read it ourselves?

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    • V
      V
      October 17, 2010
      V
      V
      Health Guide
      October 17, 2010

      Hi, there Rsongbird. I have Windows 7 and I have never tried to copy and paste a link on using this operating system. I copied the link and tried to paste it. It didn't work. Any ideas???  Thanks ans so sorry for my incompetence on this laptop.  V

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    • rsongbird
      October 17, 2010
      rsongbird
      October 17, 2010

      TO COPY AND PASTE A LINK IN THIS FORUM:

      Highlight the http:// address line of your browser when you are on the page you want to link. Right click your mouse and select Copy.  Put your cursor into a "Reply to an Answer" Comment box on this website (the one you get when you click Reply).  Right click your mouse and select Paste.  As soon as you try to paste you will get another window called "Paste as Plain Text. " Paste again into this window and then click the INSERT button.  The link will then show up in the Comment box you usually type in.  If you highlight the address and then click the chainlink icon at the top of the Comment box, the address will become an active link.

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    • V
      V
      October 18, 2010
    • Lene  Andersen
      October 20, 2010
      Lene  Andersen
      Health Guide
      October 20, 2010

      Thanks for this and the link. It'll be a big help when I develop questions for the interview. We're planning this post for November, if all goes according to plan.

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    • Lene  Andersen
      November 08, 2010
      Lene  Andersen
      Health Guide
      November 08, 2010

      Hi V and RSongbird,

       

      Just wanted you to know that I'm currently working on the questions for the interview and it should be posted later this month.

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    • rsongbird
      November 12, 2013
      rsongbird
      November 12, 2013

      Whatever happened to the interview you said you would post? Where is it?

               -- rsongbird (original poster of this whole thread)

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    • Lene  Andersen
      November 13, 2013
      Lene  Andersen
      Health Guide
      November 13, 2013

      Hi there,

       

      here is the interview about inflammatory erosive osteoarthritis.

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FROM OUR COMMUNITY

  • ronie October 14, 2010
    ronie
    October 14, 2010

    Hi there and Welcome Rsongbird. 

    It seems Miss V is becoming a professional at this.  She has researched what little info there is out there for EIO. 

    A lot of your symptoms will mimic RA.  And to answer your last question, yes the biologics will help suppress the progression of you EIO.  It will be a matter of which one will work for you.  Since you have issues with a lot of the other DMARD's it will be trial and error as pick the right one. 

    I am sorry that you are having a hard time controlling your symptoms right now.  But as a glimmer or hope, things get better as you learn to rest and modify your activities. 

    Miss V and I will be around to listen if you have questions or need someone to relate to. 

    Good luck playing the biologic lottery. 

    Ronie

    READ MORE
  • kate2011 May 09, 2011
    kate2011
    October 14, 2010

    Hello I also have erosive OA. My Xrays really show a definate change in my fingers.

     

    My left little finger has saw tooth erosions and gull wing.

     

    My middle right finger is really causing me problems. I am due to see my Rhumey next month

     

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  • BuffaloGirl October 24, 2010
    BuffaloGirl
    October 14, 2010

    I have erosive osteoarthritis. Even though most labs were negative, I had increased C reactive protein and sedimentation rate showing inflammation but not RA.   I was started on Arava which worked extremely well for pain relief and also relieved my fatigue.  Unfortunately it elevated my blood pressure and I had to go off of the medication.  I am on my second week of methotrexate , it has not increased my blood pressure but too soon to tell if if helps with the pain.   Good luck to you in finding a solution to your arthritis.

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    • rsongbird
      October 24, 2010
      rsongbird
      October 24, 2010

      The fact that you have some blood factors to work against makes it a little easier for you to decide on treatment, and that helps explain your positive (although mixed) response to Arava.  I got no positive results from any of the DMARDS, and I've tried them all. The one common reaction was that they all made my hair fall out. What makes it difficult to figure what might work is that all my blood work appears normal -- normal SED rate, normal TNF, normal CRP, no Rh factor -- so we have no idea what it is we need to target that is causing my inflammation and arthritic erosion.

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    • BuffaloGirl
      October 25, 2010
      BuffaloGirl
      October 25, 2010

      rsongbird,  I realize that my answer was not applicable to you, but I was so glad to read your original post and all of the responses to it.  I was feeling a little crazy at the beginning of my search because my pcp told me that osteoarthritis was not inflammatory period.   I have been complaining about pain for over 20 years and the only answer I got was it's osteoarthritis take tylenol, don't take NSAID's  except very rarely.   I have taken tylenol even tried vicodin and percocet with no relief.   Every time someone tells me to take tylenol, I see red.  Finally, I was referred to a rheum. who did an mri which showed inflammation, erosion, marrow edema etc.    I hope that you find some relief soon.

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    • rsongbird
      October 26, 2010
      rsongbird
      October 26, 2010

      Thanks for your last post.  I do take NSAIDS (Mobic), and I know it helps because any time I've had to be off it I feel MUCH worse, to the extent that if it hurts to move my hand through space.  Much of the time, if I'm not exerting my various joints, I am not aware of being in pain, as long as I'm timely about taking my Mobic and Tramadol, fish oil, and about 30 other supplements. Or I can be distracted from it if mentally engaged. 

       

      Of course, at bedtime, when I'm not doing anything but lying there, I feel all the parts that aren't in good shape.  That's why I play deep meditation music every night to help me get to sleep, as well as time my calcium pills shortly before bedtime, and take Benedryl antihistamine at bedtime as well, since it both helps my allergies and makes me sleepy. Plus I prop a neckroll pillow both under my neck and under my knees.

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    • kate2011
      March 10, 2011
      kate2011
      March 10, 2011

      Hello

      I came across this whilst doing reserach as I also have Erosive Osteoarthritis.

       

      Basically if you have an Xray of your fingers E OA shows Sawtooth erosions and Gull wing erosions.

       

      This means where the cartlidge use to be the bone looks like sawtooth (jagged edge)

       

      and Gull wing looks like a sea gull flying

       

      This is the thing that determines E OA

       

      Kate

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    • rsongbird
      March 11, 2011
      rsongbird
      March 11, 2011

      I was diagnosed with E OA over 20 years ago, so I don't need help with diagnosis. The question is WHAT TO DO ABOUT IT?  I can't even get corrective surgery for the deformities in the fingers because the bone-building aspect of the disease would cause the joints to fuse while healing. WHERE ARE THE SOLUTIONS, TREATMENTS, CURES....anything that helps?

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  • JunkSpine October 22, 2013
    JunkSpine
    October 14, 2010

    I am 72 years old.  I have carried diagnoses for psoriatic arthritis, osteo arthritis, AS, Sjogrens, polymyalgia rheumatica, lupus, etc.  X-rays of my spine reminded one of an old growth forest with all the spurring, neural foraminal and central canal stenosis. About 5 years ago my NP looked at my hands and said "You have inflammatory joint disease.  You need to see a rheumatologist."  At that time I had elevated CRP and ESR.  The rheumy thought polymyalgia rheumatica.  Started plaquinil after a trial of prednisone.  Rheumy said if pred helped, plaquinil should also.  Plaquinel helped with the pain, thank God!  One time I had a slight ANA titer.   I have always been neg for RA, HLab, and the bevy of tests for arthritis, other than a one time elevated ESR, and occasional elevated CRP.

     

    I took a disability retirement at age 45 due to back issues and double carpal tunnel.  I have undergone 7 spinal surgeries, 2 carpal tunnel surgeries,  1 toe joint replacement, 1 knee replacement and 1 rotator cuff repair.  I have been on anti-inflammatory meds more than  40 years.  Pulmonary emboli 20 years ago left me taking coumadin.  Coumadin + anti-inflammatory is a risky combination.

     

    Recent visit with rheumy said RA appearing lesions in hands, also EIA lesions.  We are awaiting results of blood work.  He is going to want to start me on either methotrexate or colchicine, neither of which is in the top 10 of desired meds, as far as I am concerned.

     

    I can not make fists.  I have a hard time holding a coffee pot or similar item.  I can not pick up a needle or coin without sliding it to the edge of the table.  I am developing contractures and have palpable cyst formation in my hands.  I have developed peripheral neuritis, thought to be related to the inflammation in my body.  My avocation has been making wire jewelry and seed bead weaving.  I hate to lose that because it has given me an outlet for my emotions and support by being refcognized as a good artist.  I have also made a little money from it.

     

    So far, nothing has really stopped the joint destruction.  

     

    I am glad I found this discussion.  It helps to know others are dealing with the same problems--misery loves company?

     

    Hang in there, everyone!

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  • painintheneck January 04, 2013
    painintheneck
    October 14, 2010

    I am also arthritic with a positive inflammatory gene and no finger changes on xray. I do have wrist and elbow tendonitis now and my back is bad from multiple car accidents. The Rheumi did the tests and wnted to put me on Enbrel or Humira. He gave me 6 months to research and think about it. For all those taking NSaids....they help a lot, I liked Diclofenac the best and hardly needed much else until I discovered Tramadol . The only problem with Nsaids beside the GI is they are toxic to kidneys after yrs on them. I was taking them 10 yrs and when my MD took me off, my kidney function returned to normal. I cannot take them again. The tramadol by itself is not enough. I am considering the Enbrel as I have to have cortisone injections to my shoulders and have already had 4 joint replacements 2 hips and 2 knees and 1 revision hip. They want to replace my shoulders as I have no cartiledge anywhere but I can't do surgeries as easily as when I was younger. THis is the worst year. I am 66 and a Hospice RN just cut down to 4 days a week instead of retiring. My 3 yr old grandson lives with us and it is very hard to keep up.  I don't hear enough long term effects of those drugs to even start but I may have to since they are suyppose to stop  or slow the degeneration. 

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    • jojo2
      November 11, 2013
      jojo2
      November 11, 2013

      Hi, newly diagnosed in July, with EIOA. On Plaquenil and Mobic increased to 15, they both have helped. Left ring finger distal joint is fuzed. My stiffness was debilitating. I stopped eating wheat after researching WHEAT BELLY book by Dr. William Davis. I don't have Celiac Disease, just a big belly. Multiple reviews mentioned improvement in arthritis. The author suggests going wheat free for 3 weeks, to give it a try. 3 days in, the swelling in my hands was cut in half. Everyone who knew me well noticed immediately. I still take immense pleasure in rubbing my hands together and feeling my much thinner fingers. I still have knees that will need to be replaced but Synvisc One works well for me. My Rheum sent me to PT which helped immensely with my hip bursitis and just strengthened my atrophied muscles from  inactivity. The combination of all has been life changing. My stiffness is 80% improved. I am much more active and no longer feel like I am 84. Stomach is much flatter and continues to shrink. I'm a nurse too and this had made my workday much more enjoyable.

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  • rsongbird November 20, 2011
    rsongbird
    October 14, 2010

    Well, it's me, Rsongbird, back with some interesting news from a new rheumatologist...and a new diagnosis!  It seems I have a form of Rheumatoid Arthritis called Psoriatic Arthritis, and I have been put on Enbrel for the past 6 months, which seems to be helping somewhat. I don't have typical psoriasis, but I do have some tell-tale pitting of my fingernails, and my doctor says the nature of the changes in my joints point to psoriatic arthritis.  She actually thoroughly examines me, and listens to what I have to say, and is a good diagnostician. This is the first rheumatologist I've ever had that I felt looked at me as a whole person and is working in partnership with me.  Because I have no blood markers, for 25 years no other rheumatologist could diagnose my condition properly. This doesn't mean I don't also have both inflammatory erosive and regular osteoarthritis and fibromyalgia, but this new diagnosis explains the systemic aspects of arthritis affecting all my joints, both sides of my body.  Only problem with Enbrel is that it lowers my immune system.

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  • Laura <>< November 20, 2011
    Laura <><
    October 14, 2010

    Hi everyone!

    I am a 48 year old female - who went through forced menopause a few years ago and then this past spring started getting the gull-wing nodes on my DIP of my index fingers. It has now spread to nearly every finger.  It is becoming more painful and i can feel the throbbing and heat coming from my DIP.  I tested neg for RA by blood work but my family doc knew it was something significant so she sent me to a rheumatologist.  He did a thorough exam but after he made the diagnosis of Inflammatory Erosive Osteoarthritis - his only adivce was to take a high dose NSAID. The high dose NSAID did not work - did not relieve any of the pain and inflammation.  not much help and he didn't have many answers. I saw a hand specialist and an occupational therapist. I now have the swan neck rings on both of my index fingers to lend support and to help keep them from curving too much ( they both already had a 10-12% curvature within just a few months of symptoms presenting) .  I got to work researching this online and you are all correct - there is VERY little information out there. Its not OA and its not RA so since it doesn't fit the criteria for either ( and the meds that are used for OA and RA don't work for EIO ) it is very discouraging.  I told my Dad about it and after explaining to him ( and him finding out for himself) how little info there is out there - he is doing every bit of research he can to help me !!  We are thinking about starting a support website - so we can share what has worked - and not worked to help with pain and symptoms.  Right now i just tolerate the pain - but am worried because how fast will this progress? will i not be able to use my hands soon?  what will i do for work ?  would i be eligible for disability? 

    So everyone please let me know what you think about this idea.  I'm not a website designer - but have a friend who might be able to help - it would be specifically for EIO.  If there is already a website like this - could someone point me in the right direction ?  I would like to try the Depo-Medrol injections but am on Estrogen patches so not sure (because of the interaction)  But also heard that Cymbalta works and has been indicated for the pain. I have not tried it because my insurance will not cover it and it is a cash price of about $360 a month.  Has anyone else tried Cymbalta ?  Also - does anyone have a supportive, knowledgeable Rheumy who might be a part of this website ? 

    Thanks for all that everyone has written - sometimes i feel very alone with this and can see the marked decreased ROM as well as the decreased strength in my hands in addition to the pain.  I drop things all the time and was told by my OT that the strength will continue to diminish.......  I will pray for everyone who has this and we can support each other and lift each other up in prayer - knowing that God will not give us more than we can handle and that suffering with this will only result in making us more like Jesus Christ !  We have this for a reason - the reason we don't know - but we can support one another in prayer and encouragement :) 

    Laura <><  

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    • anna
      January 28, 2012
      anna
      January 28, 2012

      hi Laura      - -  did you find or create the website you suggested?  I'd love to participate.  Diagnosed 16 mo. ago with PMR, new rheumy thinks that was a wrong diagnosis.  He's thinking Erosive Inflammatory Osteoarthritis - but i've only seen him once (last week) and will do blood work and other tests that he recommends before seeing him again in three weeks.  Am on 15 mg Methotrexate once weekly, (only in fifth week) miss my nightly glass of scotch, but do have wine or other drink occasionally, 48 hrs. after dose and 48 hrs. before next dose.  Read that somewhere.  Also on prednisone, 11 mg. down from 15.  Have felt much better only the last two days - maybe the Methotrexate is kicking in.    :=)     anna

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    • Aloha Lady
      December 22, 2012
      Aloha Lady
      December 22, 2012

      Hi, All,

      I am so happy to have found this site! Yes, I would love it if you started (or have started) a website for EIO! I was diagnosed approximately 10 months ago. I am a 57 year old woman and an OT! This has made it particularly difficult as I have treated people with deformities from arthritis in the early years of my career and know the progression we will probably be dealing with. I am, like a few of you, wondering how long I can continue to work (I work with kids in schools now) before having to go on disability. Really don't want to do that as I love my work!

      I am currently only on Meloxicam. I did take Plaquenil for about 6 months and found great relief, but it started to affect my eyesight and made my hair start falling out.

      I have a good rheumatologist, but always have to do my homework ahead of time if I am asking for a change. I have had two sets of cortisone injections for the CMC joints at the base of both thumbs and for the PIP joint (closer to the knuckle) my left index finger. My left hand has more erosion than my right as I am left handed.

      Next week, I have an appt. with my rheumatologist to look at alternatives to the Plaquenil. Since getting off of it, I have had a definite increase in pain and inflammation in my hands. 

      I, also, take natural supplements, including Magnesium with 1400 units of Vit. D. I will try to up my Vit. D to 4,000 units and see if that helps.

      Please let me know if you did get the website up!

      Thank you, for everyone who has contributed to this site and shared their stories! What you have shared has blessed me more than I can describe.

      Aloha Lady

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  • NoLikeInflammation August 12, 2011
    NoLikeInflammation
    October 14, 2010

    Hello,

    I do not have the exact symptoms as the original poster, but I seem to have some sort of systemic inflammation in my body and I accidentally found something that seem to work for me for my various inflammation-related pains. I am conveying this in case it helps others.

     

    Background: My hands and fingers are particularly affected ( hands get puffy, the ball-like bones at the base of fingers get swollen evertime I sleep or take a nap, have difficulty clasping hands in the morning, have occasional swelling of various finger joints, have recurrent ganglion cysts, etc.). I have seen a rheumatlogist and all the blood tests came out normal. However, apparently, I have the HLA B-27 gene, which makes one prone to things like ankylosing spondilylits, psoriatic arthritis, and other arthritic tendencies. I tried Ibuprofen first and then Mobic. I had to quit Mobic when I gained several pounds in one week. I tried many supplements (Glucosamine, Chondroitin, Fish oil, Flax Oil, Vitamin D, MSM, Ginger, Bromelein, etc.) w/o much appreciable success. Then, almost accidentally, I found one thing that seems to work for me, although the effect only lasts for about four hours or so.

     

    What Worked For Me: On an empty stomach, right after you wake up, just drink 1/2 cup to 1 cup of RAW (emphasis on RAW) green cabbage juice. This would be about what you would get from half a head of a medium-sized cabbage. I use cheese-cloth to filter the juice before drinking. (If you drink right after making it, it is not so bad). Almost miraculously, within half-an hour I can visibly feel my puffy hands and fingers become normal and the motions of the fingers and wrists become smooth. The effect seems to wear off after about four hours or so.

     

    The problem: It is a lot of work to make and drink raw cabbage juice every four hours. 

     

     

    DISCLAIMER: This is NOT a substitute for medical advice. I am just describing my own (perhaps, unique) results.  When it comes to inflammation-related health issues, individuals seem to differ widely in their response to various agents. What I describe seems to work for me. It may not work for you. I advise caution on any "internet remedies," including this in case you want to give it a try.

     

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