mlynn's Status Updates

It takes so long to get things approved and paperwork etc these days, it is bonkers. It can be overwhelming at times for sure, especially when you are waiting for medications. A real pain, literally and figuratively! You are not alone in that. Let us know if there's anything we can do to help from here. Keep on keepin' on, DPM

I have an update that would be funny if I wasn't so miserable going without medication for so long.
The dance continues with the specialty pharmacy so my husband called our insurance company yesterday. Our insurance company put him on hold while they called the specialty pharmacy. Toni, the insurance rep, was told by the pharmacy that my drug and infusion were not covered by insurance. Toni, of course, could view my insurance approval letter. Toni was so mad she hung up on the pharmacy. She then escalated the issue to a National Priority Service Response Team within our insurance provider, who spoke with my husband and the pharmacy for well over an hour to get this resolved. We have her email address and she will handle any and all issues with the pharmacy going forward.

I truly hope no one else has to go through this to get a medication. But the reviews for this company tell me its common. My advice is to call, and call, and escalate the problem if you get the run around. But I know it hard to to if you're in pain and tired.

Dan Malito, thanks for your words of support. This site with people who understand keeps me somewhat sane 😀

Hi . Your reaction about all of this being funny (in the absurd), if it wasn't leading to real life pain is so apt. They are literally telling the person who does the coverage that the medication is not covered. This all sounds so familiar. I recall several years ago having these conversations with the insurance company and getting the specialty pharmacy or pharmacy benefits manager on a third party call and going round and round. Since when did pharmacies become gatekeepers to a negotiation that has nothing to do with them? The whole situation is mind boggling. On our end, other than reassuring each other to keep advocating and don't give up, there is basically nothing we can do for each other because one person's success does nothing to stop it from happening again or make the go-arounds any shorter or easier. You would think the pharmacy wants to move product to make money and yet they don't want to listen to the company that is guaranteeing the money - go figure or as the kids say "make it make sense." Best, Richard (Team Member)

, thank you for sharing your own nightmare experience with a pharmacy. While I am sorry that you and Kelly endured it, I felt less alone in trying to do battle with a company that holds the keys to the medicine cabinet. Indeed - make it make sense!

, good grief! I am so sorry you and your husband had to go through all that. This isn't the same, but when my daughter was born (almost 25 years ago) it took TEN MONTHS to clear up the medical bills from her birth. I still joke that it took longer to square away the bills than it took to make her.

That said, I acknowledge that my overall health was not in jeopardy from delayed treatment, like your situation. That's unacceptable!


I am so glad you finally have someone in your corner (Toni) fighting for you and not taking any excuses! And maybe she can put in a complaint to have this pharmacy removed fromthe list of your insurance's partner pharmacies?

It shouldn't be this hard, should it?

Best, Erin, Team Member.

, your comment about clearing up the bills taking longer than it took to make your daughter cracked me up! I needed to laugh yesterday.
The medical establishment, at least parts of it, seem to have forgotten that we are real people with real lives, not just names or clinic numbers on a screen.

I think I should organize a party today or maybe not since party planning is not my forte. But moments ago I received a delivery date from the specialty pharmacy for Inflectra. I can hardly believe this ordeal is over.

I sure appreciate the support that I got here. I was about to lose my mind.

, I feel like you almost SHOULD have a party when the Inflectra arrives! Lord knows you have waited and struggled long enough!

Best, Erin, Team Member.

That's great news . I don't know if it is possible for you to get refills as soon as they become available and build up any kind of supply for when the authorization comes around again, but I know it can be helpful to have some cushion, however small, when those gaps come. Let's hope they simply don't come. Best, Richard (Team Member)

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!

My grandmother would always say, "If it ain't one thing, it's another!" and this really sounds like one of those moments. You’ve been through so much, and it just keeps coming. I’m really glad you had someone you could reach out to who actually listened and helped point you in the right direction. That kind of support is everything! You needed that win! -Latoya (Team Member)

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)