Erosive Osteoarthritis

Thanks for your reply on this I’m still taking only 3mg. But my daily women’s multi has some in it too. I will try increasing the dosage. I was afraid of the side effects to my stomach, I’m pretty sensitive to some supplements.
I’ve been using MM cream on my neck and hands, it helps the arthritis and doesn’t give any sedated feeling. I also am trying the Charlottes Web CBD , creams and gummies. They were recommended by a doctor and sell over the counter. I’m hoping something will help! All the best to you.

I have RA and OA. Allergy to NSAIDS leaves me with prednisone (and a fat face!). I’ve tried numerous drugs my rheumatologist recommended, none worked for long. At the moment, I’m on Orencia. It’s a biologic that I believe targets the T cells. It’s a weekly shot that I give myself. I can’t say it’s reducing pain, but is reducing inflammation and I think slowing the progression.

I was diagnosed with Erosive Osteoarthritis in mid-2020. I was referred to a Rheumatologist who said it was rare but was "the bad one". I was told that they could try cortisone injections but they are pretty painful in the fingers and it hasn't shown to be all that helpful. The best thing that happened to me was being referred to Occupational Therapy where I was introduced to a lot of adaptive aids. I have compression gloves for both hands, custom made splints and braces. From what I have read, EOA only became its' own subset about 10 years ago and when only 3% of the population have it, research doesn't seem to be growing in leaps and bounds. I only take Tylenol for the pain, and just started taking Glucosamine with MSN again (I have an allergy to shellfish). I have two types of nodules or nodes on my joints. I had one uncle who had the same kind of hand problems and am told my fingers look just like his did. I used to think that ice to numb the pain would help but told "not so" and the OT was right. Wax therapy helps. For nutrition, the Mediterranean Diet seems to help the most, I try to avoid foods that can cause inflammation and use things like tumeric to reduce inflammation.

I would like to find a clinical study and possibly be able to join it. Information and support groups don't seem to be readily available.

Welcome @ljbrindle66gmailcom, I have carpal tunnel in my hands that causes me some minor aches and pain at times but I know it must really difficult for you. It's great that you found some help through Occupational Therapy and a lot of adaptive aids. I did see one actively recruiting clinical trial on ClinicalTrials.Gov but it's not in the U.S.:

-- Methotrexate in Erosive Inflammatory Hand Osteoarthritis (MERINO): https://clinicaltrials.gov/ct2/show/NCT04579848

There is a ClinicalTrials.Gov beta test website that makes it easy to search if you want to see what trials are available or have been completed - https://beta.clinicaltrials.gov/. You might also want to read their disclaimer about clinical trials they list - https://clinicaltrials.gov/ct2/about-site/disclaimer.

I did see a related 2019 article to the clinical trial above that sounds like it could be helpful --- Methotrexate Reduces Joint Damage in Erosive Hand Osteoarthritis Patients: https://www.uspharmacist.com/article/methotrexate-reduces-joint-damage-in-erosive-hand-osteoarthritis-patients

One thing that normally helps my hands is heat. Have you tried any type of heating pads to warm the joints in the hands?

I was diagnosed with erosive osteoarthritis 7 yrs ago by a rheumatologist. He said it was the worst osteoarthritis a person could have. I also have carpal tunnel-both wrists + trigger fingers. (Surgery soon)The treatments for the arthritis was cortisone injections. And I was also prescribed hydroxychloroquine. I decided to discontinue the drug since it didnt seem to be helping me and i was concerned about side effects. The doctor said since there was nothing else for him to do for me he was sending me back to my primary. At some point I remember going to OT for some hand therapy(i also had broken my arm/wrist-so was sent) and remember the hot wax treatments felt so good. I found compression gloves myself. But what about the splints and braces? From OT? The EO seems to be really flaring up. I am wondering if it would help? Do I Talk to my primary or go back to rheumatologist? I dont think many people have heard about or know much about erosive osteoarthritis.

I am just going to ask my PCP for another referral back to the OT. The OT I had was great & she told me to come back if she could be of further help. She had the equipment & custom made the splints. If it’s OK to mention a brand here, my braces are Top Shelf Orthopedics. I have Medicare & a supplement so everything was covered by insurance under Durable Medical Equipment with the proper billing codes. I have my own wax machine, wax and need to get more disposable gloves. Someone also suggested heating pad so I am going to look for heating gloves. I have all kinds of adaptive equipment for the kitchen & also try to make things like soups in my crock pot or instant pot so I have a lot of healthy one pot meals. Actually, my husband does a lot of everything to help me. My Rheumatologist told me what I have and was as positive as yours (lol). I don’t take anything other than Tylenol for pain. EOA is something I think they gave its’ own name in about 2011 & they say only 3% have it. I wish their were studies we could join but haven’t found anything in the U.S. yet. Want to check nih.gov.

I did buy my own kitchen equipment & wax machine.

I am a 60 year old male. I have had severe erosive osteoarthritis for years, it is just now being diagnosed. I have swollen joints, the distal PIP joints on both hands and thumbs and also have trigger fingers. I have the severe erosive OA all over my body, including my spine as Degenerative Disc Disease, I have 10 totally collapsed vertebral discs. L4-L5 were fused several years ago. Now, I need S1-L5 fused. We are concerned about fusing discs because, that can strain the additional weak discs, creating a cascading effect, and us having to play "Wack-a-Mole", as adjacent discs are strained further. This is off subject but, I thought I would include it for comments also.

I am on all sorts of medications including Methotrexate. I am blessed to have great local physicians including a Rheumatologist and Neurosurgeon. I am now fully disabled and generally use a cane or walker to get around. I have not heard of the boron supplements before. Most of the previous comments were from women, I think and involved estrogen discussions. I also have slight Osteoporosis. With many of the comments from women and discussions involving estrogen, would the boron work for men? I would greatly appreciate any input!

Welcome @pmb462, It's good to hear that you have some great local doctors along with a rheumatologist and neurosurgeon. taking care of you. I have not read a lot about boron but did find some information on the topic that might be helpful until members can share their experience.

Minimising the Impact of Age and Arthritis-Related Changes on Joint Health and Function: https://www.clinicaleducation.org/resources/reviews/minimising-the-impact-of-age-and-arthritis-related-changes-on-joint-health-and-function/

Have you discussed taking a boron supplement with your care team?

Please forgive me, the supplement discussed is Boron. I just learned about Boron reading these posts, and have not discussed it with my physicians.
I am prescribed the following medications:
Diclofenac Sodium Gel 1% (Voltaren) as needed, not enough, or often enough, leaving clothing off, and not touching anything for 15 minutes is challenging!!
Methocarbamol (Robaxin) muscle relaxer, 750 mg 1 or 2 per day
Gabapentin 300 mg (Neurontin) 4 tab spread through the day
Hydroxychloroquine (Plaquenil) 200 mg 2/day
Meloxicam 15 mg, cut in half for one tab/day, each with a food, morning and noon.
Triamcinolone Cream 0.1% for mild psoriasis, on wrists and ankles and lower legs.

Methotrexate tab 2.5 mg 6 tabs, all at once, only once per week.
Leucovorin Calcium 10 mg, 12 hours after the Methotrexate (once per week to offset some Methotrexate side effects).

for pain: (confidential and ambiguous amounts, for confidentiality; Max 90 MME/day is fairly standard maximum) (MME=Morphine MG Equivalent)
Oxycodone / APAP Tab 10-325 mg (Percocet) (1 tab is 15 MME)
Morphine Sulfate ER Tabs 15 MG, (1 tab is 15 MME)

Additionally, I take other medications.

I will be seeing my Rheumatologist next week and will ask about BORON as a Supplement.

As I understand, the Severe Erosive Inflammatory Osteoarthritis is the worst type of arthritis. Basically, nothing can be done, except some medications to try to help stop the pain and help slow the progression of the disease. They say it is not fatal however, I feel myself dying a little every day. Last year, I lost about 30 lbs, I went from an active endurance athlete weighting 185, now, I weigh about 150. Some of this may be due to several stress factors, losing my last parent and dealing with the estate, going on disability at work and having to quit my work and routine, losing my client and co-worker relationships and sports related relationships, lunch groups, and basically all social activities, and dealing with insurance, including private disability insurance, ETC. At my last Neurosurgeon appointment, we were both teary eyed, discussing the need to fuse S1-L5, and losing lots of Range of Motion, rehab ETC. We both know that it's straight downhill for me, the physicians don't want to tell me that, because each patient is different and the prognosis is variable but, I can tell that it is not good. The 2 distal joints in each hand are so eroded and have bone growth that looks like a piece of popcorn at each joint, there is no visible joint, it is just a large mass, resembling a piece of popcorn, with no space between bones and I have the gull-wing appearance on X-ray's . I believe I am heading to the point of being a 2X4 piece of inflexible human. I admire those who have this disease and manage it, and especially those who have it worse than I do. I live such a sheltered life that it is hard to be grateful for what I have. For me, this is the year of GRATITUDE TO ALL, AND ACCEPTANCE OF MYSELF AND OF ALL OTHERS, AND EMPATHATIC TO THEIR SITUATIONS. Growing up is not for sissies! I feel I have so much to offer others but my isolation hinders my outside contact.

I need to add a bidet to my toilet, and make other house adjustments before my next surgery. At 60, I often feel that I should be in an assisted living facility, where I can get several good meals/day. Currently, I have no appetite, and force myself to eat something for dinner. It seems like I cannot complete any tasks that I start. I often spend 20 hours/day in bed. It's so difficult to manage my day-to-day needs, laundry, hygiene, cleaning, cooking, maintenance, dressing myself and basically most of my ADL's. I do still drive; however, I wonder why and how.

I have always been so independent, it is hard for me even grasp the idea that I have any limitations at all or to understand my limitations, and when to call someone for help, and how to hire others to do what I used to easily do myself. I'm hard headed and independent. I don't grasp the concept to contract with others to do what I used to do. I am also very financially conservative, so that also makes it hard to pay someone to do what I used to do just the year earlier.

I do not intend to be negative; I merely want to express my situation hoping that I can help others who are struggling also. I want to write a book about my struggles with this disease, including the mental challenges, physical challenges, social challenges, financial challenges, all coming as a brick wall hitting me. Even the physicians did not believe that there was anything wrong with me. My right leg lost 2 cm in circumference, or 36 cubic inches before physicians began to be concerned and figure out what I had been complaining about. My L4-L5 was pinching nerves, cutting off communication with the muscles in that leg, and the loss was from atrophy (neglect of my physicians). The physicians want to send you to a shrink for complaining about pain, instead of searching for the real physical problems. Physicians are not perfect, it is an art. You Know Your Own Body better than anyone, be persistent. I recommend if you have lower back pain, to measure the circumference of each leg in several locations (same locations on each leg) periodically to see if there has been any atrophy. I could actually see that my Right leg was smaller than the Left!

A young physician thought that since I could take my shirt off by myself, that I did not have any problems, even after knowing that I had Severe Erosive Osteoarthritis. I am extremely flexible or hyper flexible, and this tends to disguise some to the stiffness or lack of mobility that is typical. Just because I look young and athletic and very flexible, does not mean that I don't have very real, very painful, very serious problems, I am just atypical. Physicians, please listen to your patients & be Objective. Patients please be persistent, investigate, and get second opinions. Actually, I am not in a position to give advice on anything, especially unsolicited advice. So, I am sorry to those whom I might offend.

I am not trying to wine or cry or ask for sympathy, I am merely trying to express my personal situation and what I am going through in order for me to help others going through similar problems. I ask those with similar or worse situations to post up, so that together, we can help others. Maybe we can build a bridge for others to cross, as they come to the raging waters that we have crossed, so that it might be easier for the next person; That is my Hope and Prayer.