Seattle Connect Group

It's been an incredibly long time, so I'll post this in case anyone needs help getting or paying for biologics or other profoundly expensive medications in the future.
    I am in Washington and have the Kaiser Permante Medicare Advantage plan. It ain't cheap -- I pay around $350/month -- but I have had no trouble getting Humira, Orencia, Enbrel, or most other meds I need. They won't pay for custom shoes or footbeds for my arthritic feet, with two great toe fusions, one of those failed. So Kaiser ain't perfect.
    The copays for the biological are still astronomical. I applied for and got help from the company that makes Orencia (actual monthly cost ~$9,300; copay ~$1,500). Their assistance program ended, though. So applied to and received Medical Financial Assistance (MFA) from Kaiser. It pays all my medication and other Kaiser copays, so I got Orencia-- and now get a biosimilar to Humita -- free. I have to reapply in November. Note that I am disabled and low income.
    So I encourage everyone to look around for resources for paying for meds. Sometimes the manufacturer has programs. I'm sure Arthritis.org or your librarian can help you find help.
     Good luck, and I hope you can find one or two things to appreciate even if you're in pain today.
 

Hi Isabella, and welcome to the group! I don't have any experience with Medicare, but hopefully some of our other members can chime in. I do know that almost all insurance plans will cover Humira if your doctor submits a Prior Authorization to justify its use, and the fact that you have already been doing very well on Humira should make you an easy approval. I have heard that the amount of co-pay can vary widely with different plans though. 

You can use Plan Finder to compare Part D plans. Medicare's Plan Finder is an online tool at www.medicare.gov that can be used to compare stand-alone Part D plans or Medicare Advantage Plans. Plan Finder provides information about costs, which drugs are included on the plan’s formulary (list of covered drugs), and the star rating of the plan.

To use Plan Finder, follow these steps:

• Go to medicare.gov and click on the button that says, “Find Plans Now.”
• You can do a general search on the right side of the page, under the title “Continue without logging in” button. If you wish to save your drugs and pharmacy information, you can log into or create your Medicare account on the left side of the page.
• Next, put in your ZIP code and use the drop-down list to choose whether you are looking for a Medicare Advantage or Part D plan. Make sure you click “Apply” and then click on “Start” to begin your search.
• Then you can enter the drugs you take, choose the pharmacies you use, and indicate whether you are interested in a mail order option.

Plan Finder will display results for plans in your area. Plan Finder also tells you if the plan has a deductible and how much the monthly premium is.

I hope that helps. Best of luck to you!

Lorena

Joanna,

I am so sorry that your doc didn't at least try you on something in the meantime, even some prednisone. Can you call back and ask for that?

Here are some things I wish I had known right away when I was diagnosed. First, Cheryl Crow's site is invaluable and I  see that she is starting a new round of sessions for people  who are just diagnosed. I don't have her info at hand, but please try searching. It is called something like Rheum to Thrive, and maybe you can join her upcoming sesssions.  I think it would have made a difference if I'd had that. Second, I see that the Arthritis Foundation also has a new discussion group for "newly diagnosed". I thnk that would be worth checking out. And, your rheumatologist  likely will not think of other resources that you need aside from meds. Depending on where you are affected you may want to find a hand therapist and a PT. Stay in touch wiht this group, our experiences will help you.

So sorry you are goign through this and wish you the best,

Carolyn

Hi Joanna, and welcome to the group!

Coping with a new diagnosis can be a very stressful time, but you will learn how to manage and things will eventually get easier. This group and the Arthritis Foundation website are a great source of information and support. I also highly recommend working with a counselor or psychologist if you are able. That was very helpful for me in dealing with all the fears and overwhelming emotions when I was diagnosed. It might sound crazy right now, but one of the best tools I learned was to spend some time each day focusing on the things I am grateful for. It was difficult at first when I was in so much pain and felt like I had lost so much of what brought me joy, but starting with little things like being grateful for a hot shower or a pretty sunset or spending time with someone I love really helped me feel better. Good luck!

Lorena

Hi Donna,

Sorry for the delayed response! I don't have experience or know anyone with experience with the finger rings you enquire about. This just posts to our Seattle group and to be honest, this board has yet to become very active. There is a bigger on-liine community and you can find it at the bottom of the AF website in a black block of links. Possibly someone there has experience with the rings.

Welcome to our group and I hope to see you at one of our monthly virtual meetings. Teresa

Kristen,

I am so sorry it has taken you so long to start getting help. I have a few quick suggestions. This is one I wish I had known about early on--https://arthritis.theenthusiasticlife.com/. Cheryl Crow is a great resource. She has some kind of group for people who are newly diagnosed that sounds perfect for you called Rheum to Thrive. She will also do private consultations and her website has a ton of info. Also, the site Creaky Joints is useful. Johns Hopkins has several good videos on RA. This site, the Arthritis Foundation, has a lot of good info, but the website is really one of the worst I have ever run across for being able to find information, you really have to dig around. There are podcasts and videos in all sorts of places on the site, finding them  is not intuitive. The amount of info on RA is overwhelming, so I think Cheryl woud be the best first place to start.

I also take MTX and folid acid, but the MTX didn't do much for me so I am now also taking a biologic. However, MTX alone does work for a lot of people. I take mine by injection, which allows me to take a higher dose that you can usually take with pills. But you can see as you ramp up how it works for you. You do need regular blood tests while you are on it. I am assuming Teresa wrote to you about the Seattle RA Zoom group. Hope you will free to keep asking questions.

Best, Carolyn

Hi Kristen, Welcome to our Seattle Connect Group!

It sounds like you have had a very rough go of it in the last year! I am glad that you found our group and we do have monthly zoom meetings.Our next meeting is tentatively set for Sunday, October 17 from 4 to 5PM and when it is confirmed a message will be sent to all in our group, including you. Currently, most of the attendees including me have RA but some of us have OA or other arthritic conditions.We often discuss ways to deal with the pain and emotions that go along with our conditions. Most of us with RA are or have been on Methotrexate Folic acid is a B vitamin and is prescribed with Methotrexate (MTX) because Folic acid is depleted by the MTX and that is what causes many of the possible side effects (most commonly GI upsets). I have been on MTX for over four years and it has really helped me. Almost five years ago I began to ramp up my training for another marathon when I felt odd knee pain and swelling which intensified and soon included many other joints to the point that I could barely walk and my hands and wrists were very painful. Fortunately I was able to see a rheumatologist within three months (still too long) and begin methotrexate soon after. It took several months for the medicine to do its job but finally the pain and swelling went down. Currently I am able to walk miles and also run again, though slower and I have not attempted a full marathon but I have run several halfs. I say this to encourage you and advise you to stick with your treatment and rheumatologists recommendations. Some but not all have as much success with the first drug tried as I did. Your rheumatologist will monitor your progress and if need be change or add to your medications. What you are experiencing is a flare. Many people experience flares periodically, that is times when inflammation increases and symptoms are worse. Thus far I ahve been very fortunate and have not had a second flare. That is not to say I don't have daily symptoms/reminders that I do have RA. Some of our members do have young children and I hope you can discuss that with them. I have two grown children, now in their early thirties.

Kristen, I encourage you to explore the AF website (where you found our group) which addresses many of the concerns you raised. It is a little awkward to navigate but has a wealth of trustworthy information and is worth the effort. 

Also please feel free to send me a private message. Above the box where you posted your message there are four categories. This one is Discussions. To the left of it is Members and if you click on that you will see all our members, including you listed and there is an option to send any of them a message.

When a message is written in our Discussions any of our group can see it BUT only the facilitators are notified that there is a new message. I will send out a group message letting others know that there are new posts and asking them to take a look.

Warm regards, Teresa Van Horn

Great questions! Please do raise them at our next meeting. And perfect timing, I was just going to email you. I just found out about a Pharmacist Q&A that is going to be on the AF website. They want us to submit our questions by 4/8. Both supplements and questions about biologics might be asked and addressed here.

https://liveyes.arthritis.org/#/Replies/10781/0

You may need to be logged in to use it but if this link doesn't work for you, contact me directly and we will figure it out!

Welcome to our group, Carolyn!  The Arthritis Foundation doesn't recommend specific therapists, HOWEVER please ask our group members at the Zoom meeting on Sunday and they can share their experiences and therapists who have helped them and other resources that they have found helpful.  You are asking the right kinds of questions.  I will also say that our arthritis "journeys" are all different, but please remain optimistic . I am also an active person who ran marathons, gardened and sewed a lot when I had my first encounter with RA over three years ago. Early in my RA journey, I went to an OT for several sessions and received some wrist and finger exercises and will share some of those at our Zoom meeting. (BTW I am a retired school-based PT.)  At first there were months when I could barely walk and needed to use two hands to lift a cup BUT with good medical care and medications (and dietary changes), I am back to running, though half-marathon has been my longest distance and I am sewing and gardening again. So hopefully, you will start to see improvements soon. Also, what helped me through those months was getting into a pool for twenty minutes and moving gently almost every day. I would be less stiff and with reduced pain afterward.  I know that is much harder now in the times of pandemic, but perhaps showers and baths can help if you can't access a pool.  Looking forward to seeing you at our Zoom meeting! Teresa

Welcome to our group, Carolyn!  The Arthritis Foundation doesn't recommend specific therapists, HOWEVER please ask our group members at the Zoom meeting on Sunday and they can share their experiences and therapists who have helped them and other resources that they have found helpful.  You are asking the right kinds of questions.  I will also say that our arthritis "journeys" are all different, but please remain optimistic . I am also an active person who ran marathons, gardened and sewed a lot when I had my first encounter with RA over three years ago. Early in my RA journey, I went to an OT for several sessions and received some wrist and finger exercises and will share some of those at our Zoom meeting. (BTW I am a retired school-based PT.)  At first there were months when I could barely walk and needed to use two hands to lift a cup BUT with good medical care and medications (and dietary changes), I am back to running, though half-marathon has been my longest distance and I am sewing and gardening again. So hopefully, you will start to see improvements soon. Also, what helped me through those months was getting into a pool for twenty minutes and moving gently almost every day. I would be less stiff and with reduced pain afterward.  I know that is much harder now in the times of pandemic, but perhaps showers and baths can help if you can't access a pool.  Looking forward to seeing you at our Zoom meeting! Teresa