mlynn's Status Updates

Hi . Your frustration is certainly understandable and I totally get why you hung up that phone. Part of me really wants to believe that the person on the other end of the phone wasn't actually speaking on what the doctors would have wanted (note that I don't say they were not speaking for the doctors, because as staff they were - too often doctors forget that the staff they hire represent them). I say this because it is ridiculous to think that a doctor shouldn't treat someone who was once someone else's patient. As an example I'll offer my wife, Kelly Mack. She had her original bilateral hip and knee replacements when she was 15 and 16 years old respectively. When she faced a desperate situation with an infection in one of the knee replacements it was over twenty years later - not only did she live in a different state, but the original surgeon had passed from this world. Your situation is really no different.

The medical community often says that not only are second opinions a thing, but often encouraged. The problem is that sometimes individual doctors don't quite adhere to this collegial concept. Plus, as your and Kelly's examples illustrate, time passes, circumstances change, but patients continue to need care.

All of this is a long-winded way of saying that you may have dodged a bullet in things not working with this particular office - this may not be the place you want to be treated. I don't know what the situation is with orthopedists in your area, but can you ask other locals for recommendations (orthopedists tend to be in much greater supply than rheumatologists). Did your doctor have any recommendations? Are there orthopedists they can actually contact on your behalf explaining that your previous surgeon has retired and it was done in a different state (doctors tend to listen more carefully to other doctors). I mention these ideas because the burden shouldn't only fall on you - sometimes doctors also have a responsibility to make sure their patients get the care they need. Don't hesitate to ask for help. That said, I hope all of this has been a little helpful. Best, Richard (Team Member)

, oh, goodness. I'm so sorry and no wonder you hung up the phone. I tend to be very polite, too, but sometimes (especially when it comes to medical or insurance stuff), my well of patience can run dry.

I have no helpful suggestions, but please know I am thinking of you and I hope you are able to find a solution that doesn't involve driving for hours!

Gentle Hugs, Erin, Team Member.

This really is a lot, . I'm so sorry you're in such a tight space. Healthcare should definitely feel easier and more compassionate, not like jumping through hoops. Have you tried reaching out to any bigger hospital systems or academic centers nearby? Sometimes they’re more open to seeing patients even if you didn’t have your original surgery with them. I hope you get the help you deserve soon! Keep us updated! -Latoya (Team Member)

and and Faust, I thank you all for your kindnesses and for listening. It's often what keeps me going when I hit a wall and want to cry.

While this shoulder provider issue swirled around my head, I learned that I need surgery on my right foot. RA really never quits with the surprises.

Over 14 surgeries and almost 20 years, I established a good relationship with my retired surgeon's patient coordinator. She remained on staff. Out of desperation, a Hail Mary pass if you will, I emailed her and asked if what I am hearing in my state is standard practice in the orthopedic world. Lisa said "absolutely not"! Lisa would like me and my shoulder to return to TCO but if the 8 hour trip is more than I can manage at the moment, she will speak to another surgeon there and provide a referral.

This particular orthopedic practice added rheumatologists and infusion centers to their staff in 2023. What I novel idea, says I, with a hint of sarcasm. Why don't more clinics in the US take into consideration the long term and unique needs of people with an autoimmune arthritis? If we could get care from the wide range of specialist care that we often need under one roof, it would be something to celebrate 😀

Hi . This is one of the biggest reasons Kelly is staying at the University she has gotten treatment for almost 20 years even though her rheumatologist just retired. Most of her specialists are there and it just makes it so much easier to coordinate care. Kelly wrote this article on choosing a doctor and noted "The best doctors have a combination of experience with RA, compassion for their patients, and ability to coordinate on related conditions. With RA resulting in various health complications, recognizing different problems and referring treatment is crucial for managing overall health:" https://rheumatoidarthritis.net/living/choosing-doctor-2. Best, Richard (Team Member)

, I am so glad you threw that Hail Mary pass and that it is offering you some better options (though, a long drive is still not ideal, I know). I know it's exhausting, but keep advocating for yourself and for the quality healthcare you deserve. You shouldn't have to work this hard for good care, but I am glad you don't give up!

You are in my thoughts as you face more surgeries.

Gentle Hugs, Erin, Team Member.

Thank you!

Ugh, I’m sorry you’ve been hurting the past couple of days. And yeah… “the mind is a powerful tool” is not exactly the pep talk you needed. It's tough. Those who don't struggle with RA themselves truly have a hard time understanding the pain on both a mental and physical capacity. Sometimes we just need someone to listen and validate what we’re going through, not try to reframe it. I'm glad you told him how you felt. It’s important that your feelings are heard. If you'd like, maybe you can share this article with him and talk about it. It's about the things we should and should no say to someone who has RA- https://rheumatoidarthritis.net/living/the-right-things-to-say-to-someone. I think it would be a great way to bridge you two together. Just a thought... I truly do hope things turn around for you soon! Keep us updated and stay encouraged.

, I just want to echo Latoya's words. I do hope that your pain levels start diminishing very soon. And, I have been married for 25 years and I know what it's like when the spouse says the wrong thing at the wrong time. Ugh. I am glad you communicated clearly with your husband and I hope he took your words to heart and didn't get mad. Sigh. Some days are just hard, aren't they?

Gentle Hugs, Erin, Team Member.

, thanks for "getting it" and for the article link. I have learned that when my pain levels are high, I just need someone to acknowledge that this disease is darn hard. That's why this community is so important. I'm glad that you're here!

, your post made me smile. You hit the nail on the head about a spouse's ability to say the wrong thing at the worst possible time. I'm sure I never do that. In this marriage, I wear the halo 😀
We had more conversation yesterday and I think I was able to better articulate what I need when I am in loads of pain. Yes, some days sure are hard.
Thanks for bringing me a smile on a mighty bumpy day.

We women always wear the halo 😇 haha! -Latoya (Team Member)

, awwww. You're quite welcome. And, I, too, never stick my foot in my mouth with my spouse 😉 . And here's to spouses who love us and listen and try to do better by us.

I am glad I could make you smile!

Best, Erin, Team Member.

I’ve had 2 extractions and received similar advice from my rheumatologist. As a general rule, I follow the advice of the doctor that prescribes the meds, especially immunosuppressants. My oral surgeon also felt comfortable recommending an implant for tooth replacement, but 2 rheumatologists felt that with my history of dental infections, a bridge was more appropriate. I’m not sure if it’s coincidence, but my dental infections finally stopped after I quit taking methotrexate, even while continuing on biologics. I Hope you are healing well and can resume your meds soon, Jo

Hi . I can tell you that my wife, Kelly Mack, does take an antibiotic before dental appointments, but has not had to stop her biologic, but (and it is a big but) she has not had something like an extraction. My non-medical thought is that if you can hold off the meds like the rheumatologist recommends then better safe than sorry. Best, Richard (Team Member)

Hi again . I noticed that mentioned that she gets fewer infections since she stopped methotrexate, even though she continues to take a biologic. I wonder if this has anything to do with the methotrexate being a blanket immunosuppressant, while biologics hinder a specific part of the immune system. During COVID the American College of Rheumatology recommended stopping methotrexate for the vaccine so that antibodies could develop, but not for biologics. That might be an interesting question for the rheumatologist about whether they would have the same recommendation for the tooth extraction if you were not on the methotrexate (they very well might still want to play it safe). Best, Richard (Team Member)

, the roots of the tooth that was extracted showed infection on the exray so I appreciate hearing of your experience with methotrexate and dental issues. I will definitely ask my rheumatologist for his input on an implant. I am leaning towards leaving things alone since the tooth was in the back of my mouth.
You confirmed what my gut was telling me - follow the advice of the prescribing doctor. Thank you.
This is not the first time another provider has felt the need to make comments about my RA management. It's maddening and I wish folks would just stay in their lane. Their opinions just clutter up all of the decisions we have to make on a regular basis. It's exhausting.
Thanks again, Jo!

, well, this is really interesting information about methotrexate being a blanket immunosuppressant. I had assumed it was the other way around with the biologic being the more imuno potent, so to speak. You bring a lot of medical insight as well as encouragement here. Thanks!
I am following my rheumatologist's guidelines for holding both the methotrexate and biologic. It's no fun at all but I will muddle through. Better days are ahead.

I chose to not have my first extracted tooth replaced as it was the furthest back tooth. My endodontist and rheumatologist made that recommendation. The second tooth, because of it’s placement we chose to use a bridge. I’m happy with both decisions. It’s also important to recognize dental infections can have a negative effect on RA. It is possible that once your dental infection is resolved you see some overall improvement It’s not curative, but we’ll take every increment of improvement! 😀

Hi . Just to follow up, this article from our editorial team on the available biologics mentions what type of inhibitor each one is: https://rheumatoidarthritis.net/treatment/biologics. I probably should have posted this before 😀. Rituxan is another blanket immunosuppressant. Both Rituxan and methotrexate, in much larger doses, are used to treat some forms of cancer. I know people on Rituxan who simply could not build antibodies for COVID even after multiple vaccines. They were part of a clinical trial on this issue. I believe one of patient leaders may have been part of this as well. Best, Richard (Team Member)

It is 100% possible, at least in my personal experience. It's funny because I am sitting here with my right ankle still swollen because of the surgery I had 6 months ago to put on one of those external fixators with the pins going thru. It was to turn the ankle flat after 15 years of walking on the side of my foot. It still hurts now and I really thought it would not hurt after it was flat, so shame on my for assuming! My point, though, is that my RA is well controlled with my injections of my biologic, but my ankle still hurts as does my shoulder. It's hard to say what makes what joints flare, but sometimes they just do and nothing can stop it, unfortunately. If the pain is getting so much that it is affecting your quality of life it may be time to think about a pain specialist but in the meantime I usually just ice it and use lidocaine cream. Let us know if there's anything we can do to help! Keep on keepin' on, DPM

, I can't tell you how much I appreciate your response. I'm feeling stuck, like the only option is to simply endure. I doubt my ability to do that with any sort of positive attitude. I should probably send out a warning to family and friends that say " I am crabby and tired and in pain! Approach with care." Maybe I am mostly just a bit frightened.
Interesting to note that you walked the outside of your foot too. Try as I might, my foot doesn't like to be flat when I walk.
My hip and knee have joint replacements on that left side. I was doing so well with those until the ankle started to raise a ruckus. Its setting off my hip.


I have read here of your ankle surgery and recovery with great interest. You have tremendous fortitude. I wish you good things as your recovery continues.
And thank you for sharing your experience with biologics and various joints. It answered a big question that I've been chewing on.

Unfortunately, feeling stuck is part and parcel of this wretched illness! It still happens to me after three plus decades and I call it "the blahs." It usually takes me a few days to shake it off and get back to "normal." There is absolutely nothing weird about being sick and tired of being sick and tired! Of course it's going to make you crabby and short-tempered! Thank you so much for the kind words, it will probably end up to be a full year before it's done healing, but it was worth the pain. Still, though, it was one of the worst recoveries I ever had to go through. If you need any help or advice in the future just know you are not alone and you can always come here!! Remember - however you get through the day is exactly the way you are supposed to be doing it. 😀 DPM

Hi . Like Daniel, my wife, Kelly Mack (also a contributor here), has those joints that no treatment seems to touch. She was also diagnosed many years ago as a child and, finally, found a treatment that controls the JRA pretty well, but her one ankle consistently has pain and a shoulder did also, but was replaced last year. We even has a discussion with her rheumatologist and another rheumatology fellow about inflammation that simply isn't measured by the current tests (they also noted that ongoing fatigue for those whose numbers come back normal could be due to this - small enough to break through the blood-brain barrier and to impact cellular energy). You mentioned your ankle looks sound, but maybe it is the joint that RA just can't quit. Know that you are not alone. Best, Richard (RheumatoidArthritis.net Team)

, thank you for your reply. It helped clear my confusion about why this foot and ankle remain so resistant to treatment. Steroids help some but my rheumatologist is tapering down my daily dose.
"The joint that RA just can't quit..." a very good way of putting it!
I appreciate all that you and Kelly share here!