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Erosive Osteoarthritis
I have been trying to get answers for many years to find out why my OA in my hands is so painful and debilitating. It doesn't look as bad to the eye as many other people I have met that also have OA but have huge joint nodes but say it's not too painful. I had the traditional basal thumb surgery on left and right hands,left went well 10yrs ago but right which I had one yr later has never been pain free.. About 6 mths ago the pain in the back of my right wrist became so much worse at the same time a large lump appeared.I thought this was probably a Ganglion then a few weeks later a softer round lump appeared on the dip joint on the inside of my right little finger which as made the joint very swollen. Eventually got Xrays of both hands which have now been diagnosed as Erosive Osteoarthritis which I have never heard of. Prognosis doesn't look good with this type of OA. Has anyone else been diagnosed with this and do I ask to be referred to a Rheumatologist ? How do I deal with this ? Is there any meds I can take for pain and to slow down the progression ? Thank you
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I have been taking about the same amount of boron, 3mg. 3x day.
I increased a little yesterday, 6 mg.
I haven’t noticed any real improvement yet, but my dose is small. I will keep slowly increasing.
I feel for you describing your pain with your feet! My mother had a terrible time, they broke out all over her soles, ankles, and I remember she used a purple tincture sometimes. I don’t know what it was, she died when I was a girl. Arthritis runs in the family. Genetic? Skin problems also run in the family.
I have been diagnosed with erosive inflammatory osteoarthritis of my hands. I have inflammation and swelling in my fingers and then there will be relatively painless periods and then another flair. Apparently, there is disagreement in the medical community as to whether this condition is different from plain old OA. There are many things I can no longer do with my hands. It is progressing. The only treatment right now is pain relief. I wish there were studies in the US about this disease.
Hello @nashville426, Welcome to Mayo Clinic Connect, a welcoming online community where patients and caregivers share their experiences, find support and exchange information with others. I find the arthritis in my hands also limits what I am able to do with my hand. I don't have the erosive inflammatory osteoarthritis but did find some information discussing the debate over EOA vs OA.
What to Do with Erosive, Inflammatory Osteoarthritis: https://www.the-rheumatologist.org/article/what-to-do-with-erosive-inflammatory-osteoarthritis/
Has your doctor or rheumatologist suggested any hand exercises to maintain or strengthen your hands?
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1 ReactionWhile I wasn't able to identify any studies either, I did find 2 very interesting articles, the second has very specific suggestions for exercises and other coping strategies. My daughter's rheumatologist in Minnesota agrees more study is needed now that this condition is recognized as a separate disease from both OA and RA.
https://www.the-rheumatologist.org/article/what-to-do-with-erosive-inflammatory-osteoarthritis/?singlepage=1
https://creakyjoints.org/about-arthritis/osteoarthritis/oa-overview/what-is-erosive-osteoarthritis/
Sue
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2 ReactionsThank you, Sue and John. My hands are a bit quieter now I think due to the MMJ lotion, compression gloves I wear at night and often in daytime, and MMJ tincture at night. I think.....never know when a flare will scream at me and cause so much severe pain and the joints degenerate or erode. It feels like they are imploding and then become enlarged, disfigured, swollen, and frozen.
I went to hand PT at Mayo for several months last year. It did help, the hot parrafin and exercises - I still do both at home. Also, they hurt with typing, although less using the laptop I think. Maybe the keys are easier to use, lighter touch. But, I'm using it more, so they do get painful after a day....I think the extra exercise of the laptop is a good thing. Just have to follow up with gloves, lotion and tincture.
I'm researching erosive osteoarthritis. Thanks for the links. Read some last night, but it seems there's no concensus
to date and no additional treatment?
Thanks and blessings to all the OA and EO and RA folks. elizabeth
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1 ReactionMainlynwhat I see are tests of many antiinflammatory drugs used for RA, NSAIDS, and old drugs they are trying in a new way - the main conscensus is most are either not effective on the damage, or not on the pain.
I sure wish there were better answers - they're running out of bones to remove or repair for me. I know it's been around a LONG time unrecognized as a separate disease - my Mom and her sister both had it, now it's jumped to the next generation.
Sue
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2 ReactionsAs you can see the research is being done abroad, mostly in Europe. Nevertheless, there doesn't seem to be anything to do but heat (paraffin) and gadgets to help with everyday living. If there are rheumatologists out there who want to study this disease, I hope the NIH or others would fund their study. Are you listening May Clinic?
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1 ReactionMy grandmother had it. My mother did not.
So true, but this issue isn't at the top for research, I suppose. It's surely at the top for quality of life, daily functioning and pain. I had cortisone shots in my thumbs.....those were extremely painful and hurt for sometimes hours following the shots. Also, in most of the finger joints, both hands, and the wrists. I had surgery on the wrist/thumb sheath that was very uncomfortable and painful but did no good. All this from one of the leading ortho practices in town.
One day, after a couple of years of this, I asked the nurse practitioner giving me the shots what's going to happen with these hands? What happens when all the fingers are frozen and painful and the wrists hurt all the time and don't work...I'm out of thumbs now, what happens when I'm out of hands? At that point I couldn't use my hands for much and they hurt all the time. Her answer was remarkable.
She actually shrugged, smiled and shook her head. There was no plan to help other than ongoing shots which were lessening in help and clearly weren't good for me to have in my body. at all. I asked about joint replacement, other types of surgery? Nope....this was it.
That was the last visit I had with that or any ortho group. No more lumbar shots...helped for a month or so and then not AND were one of the most painful things ever done to me. I worked it through in my mind that this was the only way I could walk upright, walk at all at times, so I would deal with the pain. They were the only help available....NO MORE.
I stopped all bone/joint/back/hips/hands/shoulder/neck shots forever. I moved all my medical care except PCP to Mayo Clinic due to my heart situation and sarcoid and possible MS diagnosis., fibromyalgia, etc. Since then, no cortisone shots. I walk with the pink walker. I 'work out' in the warm pool. I'm off pain meds generally, just MMJ and Robaxin for muscle relaxation.
All good. But, my joints, hands need help and I've not even addressed them other than with you folks and look at the improvement from your suggestions. MMJ, tincture & lotion for pain/anxiety, Robaxin for muscles, Cymbalta for fibro.
important!!!!!! Last week, my gastroenterologist referred me to the fibromyalgia program. I didn't know Mayo has one! They do. I am scheduled for a battery of blood tests first, then consult with a psychologist who works in this area, then meet with the clinical director of the PRC, a psychiatrist, then am scheduled in July for a 2 day intensive program to learn about and how to deal with fibromyalgia pain and other issues it causes. As I find out more, I'll let you know. I think it's probably a central sensitization and cognitive behavioral program with PT and Biofeedback, learning about other possible helps - massage, acupuncture, etc. I've just learned about fibromyalgia from a you-tube video of a conference w/Mayo docs in Ireland. I've had it for 40 years!
That's my story for today. This clinic is a dream come true for me. At the right time, too, as I'm beginning to learn about these concepts. God is so good.....Mayo has/is helping me immensely.
Blessings and maybe we can get involved with some EO trials??? elizabeth
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1 ReactionPlease let me know if Mayo has any EOA trials. The shots in my hands are painful and ineffective after a month or so so I stopped those years ago. As I said my grandmother's hands got so crippled she could do virtually nothing. My grandfather took care of everything in the household. I have seen the end result of EOA and it isn't pretty.
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