Erosive Osteoarthritis

Posted by anniebrook @anniebrook, Feb 12, 2021

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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@nashville426

Please 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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Hello, @nashville426 . I'll keep my eyes and ears open for anything at ll. I desperately want to learn more and find out what's being researched. I know John @johnbishop, @sueinmn, @artscaping, @becs, and others stay in touch with the new information so we'll watch what they have to say. My hands are in a quiet stage right now and the MMJ tincture is helping, in conjunction with the compression gloves that do help with swelling and pain.
Blessings and let is know how it's going....elizabeth

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I was recently diagnosed with EOA. since last Dr visit, 3 weeks ago and since my appt along with the xray, I was referred to a specialis.t I have two knew fingers red swollen, and a bump. When ya think about it, we use our hands for everything, I mean everything, what type of future is there for us with this happening. I do not see to positive of outcomes or medical help for that matter with EOA. I am a CNA for a living, and I am pushing through to just make a living. everyday is a struggle, I hurt to lift, move or roll people, help up from the restroom etc, and lets not get started on if I accidently bump a knuckle.... or my fingers the wrong way. Also any one experience major fatigue along with no appetite with this?

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@kgresh11

I was recently diagnosed with EOA. since last Dr visit, 3 weeks ago and since my appt along with the xray, I was referred to a specialis.t I have two knew fingers red swollen, and a bump. When ya think about it, we use our hands for everything, I mean everything, what type of future is there for us with this happening. I do not see to positive of outcomes or medical help for that matter with EOA. I am a CNA for a living, and I am pushing through to just make a living. everyday is a struggle, I hurt to lift, move or roll people, help up from the restroom etc, and lets not get started on if I accidently bump a knuckle.... or my fingers the wrong way. Also any one experience major fatigue along with no appetite with this?

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Welcome @kgresh11 to Mayo Connect. We’re all patients or caregivers of patients who share information and resources about our health conditions…it sounds like EOA is a very difficult problem to deal with. I’m not really familiar with EOA; i have an autoimmune disease. I’m going to ask @sueinmn if she can join the conversation.
This link may have some good information for you.
https://www.the-rheumatologist.org/article/what-to-do-with-erosive-inflammatory-osteoarthritis/2/?singlepage=1
Have you been referred to a large medical center or a university teaching hospital? You might want to try going to one as they have the most up-to-date information and treatment.
Will you keep e informed of what you learn?

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@kgresh11

I was recently diagnosed with EOA. since last Dr visit, 3 weeks ago and since my appt along with the xray, I was referred to a specialis.t I have two knew fingers red swollen, and a bump. When ya think about it, we use our hands for everything, I mean everything, what type of future is there for us with this happening. I do not see to positive of outcomes or medical help for that matter with EOA. I am a CNA for a living, and I am pushing through to just make a living. everyday is a struggle, I hurt to lift, move or roll people, help up from the restroom etc, and lets not get started on if I accidently bump a knuckle.... or my fingers the wrong way. Also any one experience major fatigue along with no appetite with this?

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Hello, I'm sorry to hear that you are dealing with this. It is hard to find good research on treatment, prognosis, etc because this is a fairly new diagnosis in arthritis. It shares characteristics with both osteo and rheumatoid arthritis, with its own twist of these terribly painful fingers.

You are correct that there is no cure, however, with care and a good doctor pain can be managed and damage can be minimized. I do not have what they currently describe as erosive osteoarthritis, but rather the same thing but in different joints without the sero-confirmation of rheumatoid.

It is managed with NSAIDS, which do more than relieve pain- they also calm the inflammation to reduce damage over time. You may have to try several to find one that helps. If you can tolerate them, do use them.

Tylenol is not an antiinflammatory, but a pain reliever. It does not have the same effect as an NSAID, but it can help with the pain. Hot soaks, or alternate hot/cold therapy can also help. Before I retired, I sometimes soaked my hands and wrists during a break on reality bad days.

If none of these help, you can talk to your rheumatologist about a steroid injection in the worst joint(s) or sometimes they prescribe a course of methotrexate.

As to fatigue, any time you are fighting pain, it is extra taxing - it takes extra energy to get through the day, you may not be sleeping well, and your body is fighting the inflammation. Since you must keep working, be gentle with yourself in other areas, and rest as much as you can.

The same applies to lack of appetite. Be good to yourself. Keep healthy easy food in small amounts, and try to nibble your way through the day. Nuts, cheese chunks, yogurt, fruit, easy meals like healthy choice...

Here is another article you may want to read.
https://www.healthline.com/health/osteoarthritis/what-is-erosive-osteoarthritis#outlook
What treatment has your doc suggested?
Sue

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@sueinmn

Hello, I'm sorry to hear that you are dealing with this. It is hard to find good research on treatment, prognosis, etc because this is a fairly new diagnosis in arthritis. It shares characteristics with both osteo and rheumatoid arthritis, with its own twist of these terribly painful fingers.

You are correct that there is no cure, however, with care and a good doctor pain can be managed and damage can be minimized. I do not have what they currently describe as erosive osteoarthritis, but rather the same thing but in different joints without the sero-confirmation of rheumatoid.

It is managed with NSAIDS, which do more than relieve pain- they also calm the inflammation to reduce damage over time. You may have to try several to find one that helps. If you can tolerate them, do use them.

Tylenol is not an antiinflammatory, but a pain reliever. It does not have the same effect as an NSAID, but it can help with the pain. Hot soaks, or alternate hot/cold therapy can also help. Before I retired, I sometimes soaked my hands and wrists during a break on reality bad days.

If none of these help, you can talk to your rheumatologist about a steroid injection in the worst joint(s) or sometimes they prescribe a course of methotrexate.

As to fatigue, any time you are fighting pain, it is extra taxing - it takes extra energy to get through the day, you may not be sleeping well, and your body is fighting the inflammation. Since you must keep working, be gentle with yourself in other areas, and rest as much as you can.

The same applies to lack of appetite. Be good to yourself. Keep healthy easy food in small amounts, and try to nibble your way through the day. Nuts, cheese chunks, yogurt, fruit, easy meals like healthy choice...

Here is another article you may want to read.
https://www.healthline.com/health/osteoarthritis/what-is-erosive-osteoarthritis#outlook
What treatment has your doc suggested?
Sue

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Thank you for your reply. I will know more once I visit the Specialist Sept. 17th. See where I go from there. Being a CNA, a bit hard to take it easy haha but I try. Also only being 49 and have two grandbabies, 3 and 1, I'd like to figure out all natural ways to help prior to popping pills. It's a bit scary to think of what the future holds. I do yoga, hand exercises I've seen on line with to try and get ahead but unsure if I am making it worse or not. Baffled.

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@becsbuddy

Welcome @kgresh11 to Mayo Connect. We’re all patients or caregivers of patients who share information and resources about our health conditions…it sounds like EOA is a very difficult problem to deal with. I’m not really familiar with EOA; i have an autoimmune disease. I’m going to ask @sueinmn if she can join the conversation.
This link may have some good information for you.
https://www.the-rheumatologist.org/article/what-to-do-with-erosive-inflammatory-osteoarthritis/2/?singlepage=1
Have you been referred to a large medical center or a university teaching hospital? You might want to try going to one as they have the most up-to-date information and treatment.
Will you keep e informed of what you learn?

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No, no referred to a large he medical center. Il have to wait to see Specialist Sept 17th and go from there. Thank you for the link 😁

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@kgresh11

Thank you for your reply. I will know more once I visit the Specialist Sept. 17th. See where I go from there. Being a CNA, a bit hard to take it easy haha but I try. Also only being 49 and have two grandbabies, 3 and 1, I'd like to figure out all natural ways to help prior to popping pills. It's a bit scary to think of what the future holds. I do yoga, hand exercises I've seen on line with to try and get ahead but unsure if I am making it worse or not. Baffled.

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Mild exercises will help - will preserve range of motion, and sometimes actually help with pain. I have been trying for 40 years to find a "natural" way to manage arthritis, but options are limited.
Let me know what the doc says.
PS I have two "littles" and have taught them to climb up in my lap for cuddles, etc. instead of lifting with my very bad hands. Doesn't always work, but helps some.
Sue

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@sueinmn

Hello, I'm sorry to hear that you are dealing with this. It is hard to find good research on treatment, prognosis, etc because this is a fairly new diagnosis in arthritis. It shares characteristics with both osteo and rheumatoid arthritis, with its own twist of these terribly painful fingers.

You are correct that there is no cure, however, with care and a good doctor pain can be managed and damage can be minimized. I do not have what they currently describe as erosive osteoarthritis, but rather the same thing but in different joints without the sero-confirmation of rheumatoid.

It is managed with NSAIDS, which do more than relieve pain- they also calm the inflammation to reduce damage over time. You may have to try several to find one that helps. If you can tolerate them, do use them.

Tylenol is not an antiinflammatory, but a pain reliever. It does not have the same effect as an NSAID, but it can help with the pain. Hot soaks, or alternate hot/cold therapy can also help. Before I retired, I sometimes soaked my hands and wrists during a break on reality bad days.

If none of these help, you can talk to your rheumatologist about a steroid injection in the worst joint(s) or sometimes they prescribe a course of methotrexate.

As to fatigue, any time you are fighting pain, it is extra taxing - it takes extra energy to get through the day, you may not be sleeping well, and your body is fighting the inflammation. Since you must keep working, be gentle with yourself in other areas, and rest as much as you can.

The same applies to lack of appetite. Be good to yourself. Keep healthy easy food in small amounts, and try to nibble your way through the day. Nuts, cheese chunks, yogurt, fruit, easy meals like healthy choice...

Here is another article you may want to read.
https://www.healthline.com/health/osteoarthritis/what-is-erosive-osteoarthritis#outlook
What treatment has your doc suggested?
Sue

Jump to this post

For at least 12 years I have had steroids injections in both thumbs and both shoulders and in the last 6 months, the foot surgeon has been injecting my left foot right in the middle and my big foot. He says there is no surgery to fix the problem. So every 31/2 months I have injections forever. I have lost so many cushions, that I have so much bone-on-bone movement. I go to the pain clinic for the neck C3-C6, lower back L4 to L6(radio), both hips, and my tail bone which was broken back in the '70s ( a Ram got me good). This has lasted sometimes 2-3 years before we redo it again. I do my exercises for my shoulders. And chores outside help keep me moving. And lately, my fingers have become more crooked and larger knuckles. I am waiting to see what my Endo Drs. will start me on next. I never have a choice. But they are waiting till I have my dental surgery over and healed. As far as drugs go over all the last 15 years we have tried Fosamax, Reclast, Tymlos, and maybe next Prolia. I do not know if my experiences have helped but maybe a little. Stay healthy and safe. Keep in touch as to your progress.

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I went to my Specialist, Friday. She was nice, seemed attentive. Did 5 vials of blood. 2 red cap, 2 yellow. The yellow take a few days as those or more extensive testing, such as for autoammune diseases. So far both red caps were good. As far as protein, Hep C, stuff like that. She prescribed me Plaguanile. Just took first one this a.m. I was told to watch my sugars, starch, it cause inflammation.
Also doing a sleep study due to the constant fatigue and falling asleep easily. This Erosive Osteoarthritis is driving me nuts. I can't believe all they are able to do with so much that noone can help us, as far reconstruction of fingers and inject some sort of replacement cushion, where I have none.

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@kgresh11

I went to my Specialist, Friday. She was nice, seemed attentive. Did 5 vials of blood. 2 red cap, 2 yellow. The yellow take a few days as those or more extensive testing, such as for autoammune diseases. So far both red caps were good. As far as protein, Hep C, stuff like that. She prescribed me Plaguanile. Just took first one this a.m. I was told to watch my sugars, starch, it cause inflammation.
Also doing a sleep study due to the constant fatigue and falling asleep easily. This Erosive Osteoarthritis is driving me nuts. I can't believe all they are able to do with so much that noone can help us, as far reconstruction of fingers and inject some sort of replacement cushion, where I have none.

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You said, "I can't believe all they are able to do with so much that noone can help us, as far reconstruction of fingers and inject some sort of replacement cushion, where I have none." That is certainly a good question, and one that several people I know would like to have answered.

First, keep in mind that the idea of injecting a replacement cushion is definitely being tried --- but even on larger joints, the results are extremely mixed. A few things are helpful to some people, but the experience is not there yet to tell what will work for each individual. There can be side effects, including rejection or allergic reaction by the body, missing the injection target, with possible complications, migration of the substance to the wrong place (causing their own side effects) Even when it works, the length of effectiveness can vary greatly between individuals.

The ability to inject almost-microscopic quantities precisely into small joints is hugely difficult. It took me several years to find an orthopedic surgeon able to precisely inject cortisone into my failing thumb joint and get it right every time. I believe it would take development of a robotic, x-ray-guided process.

Some finger and thumb reconstruction is possible, but in a body with erosive arthritis, even those can be temporary, and may not provide the usability or pain relief you might expect, because other joints may continue to erode. For example, the carpectomy I had 10 years ago to maintain use of my wrist is beginning to fail - next week I will find out if there is another conservative surgery or if it will need to be completely fused.

So the short answer is, they are working on it, but it's not there yet.

If you are interested in pursuing treatment, I recommend you find the very best hand and finger surgeon you can (usually a plastic or orthopedic surgeon with extra training.) Then ask for help to find the latest reliable solutions for your hands and who does the procedures A LOT. For example, my current hand surgeon says there are 4 techniques for repairing the CMC joint in the thumb, with numerous variations on each. He told me which he preferred, and why, showed me the success, revision & failure numbers in general & his own. I had my second hand done last year & I'm very happy with the results.

Have you been seeing a rheuatologist? She may be able to refer you to a hand surgeon.
Sue

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