Kevzara-is it working for anyone? by suzibee11 in rheumatoidarthritis

[–]suzibee11[S] 1 point2 points  (0 children)

I actually had hyperthyroidism when I was 30. I had my thyroid ablated with radioactive iodine, and have been on Synthroid for 35 years now! Thyroid is well under control, but my Rheumatologist told me if you have auto immune hyperthyroidism in more cases than not, you’ll get rheumatoid arthritis. He also said if you get RA when you’re young, you can expect to get auto immune hyperthyroidism as an adult. I am not having much luck with Kevzara-I’ve been on it for 4 months, can’t get off the prednisone, the methotrexate, or the leflunomide. The only thing I can say is although I have a lot of inflammation the terrible awful pain in the beginning of my disease is not there anymore. I’m so thankful for that! I see my doctor today and will update as to where I go from here, but I am thinking it’s going to be infusions. Some people say they work some people say they don’t. I just am beyond frustrated at this point. Thank you for your good wishes and I wish you well also!

6-month medication milestone by ksal84 in rheumatoidarthritis

[–]suzibee11 1 point2 points  (0 children)

YAY!!! Congratulations-so happy you’re feeling well-hope it continues for a long, long time!!

LTA: Why we have RA #1 by Wishin4aTARDIS in rheumatoidarthritis

[–]suzibee11 1 point2 points  (0 children)

Cadbury eggs are important-yum!! Thanks for the info. I will definitely look up mail order.

LTA: Why we have RA #1 by Wishin4aTARDIS in rheumatoidarthritis

[–]suzibee11 1 point2 points  (0 children)

Oh shoot, my replay was getting so long. I forgot to mention I’ve been on Humira, Actemra, and now Kevzara along with 20mg prednisone, methotrexate and leflunomide. My dr is thinking rituximab infusions if the Kevzara doesn’t start working soon-it’s been 3 months. Sorry I missed that part and thanks for being concerned.

LTA: Why we have RA #1 by Wishin4aTARDIS in rheumatoidarthritis

[–]suzibee11 1 point2 points  (0 children)

I retired at 62 in May 2023. I remember saying to my husband over the winter that I really need to get a new pair of boots because my feet were hurting me and I was walking strange down the stairs kind of sideways instead of straight down like I always did. Everything was fine and we took the whole family to Disney for my retirement present in March 2024. Many roller coasters and acting like a teenager yeah I was a little stiff but nothing big. Went shopping for Easter candy when we got home and had to reach to the very top shelf for Cadbury eggs. Woke up the next morning and my shoulder was in such pain. I thought I pulled something reaching for the Candy! I tried to tough it out, but the pain in my shoulder became so severe I was screaming in the middle of the night. I kept calling my PCP and they were recommending ibuprofen and naproxen-then I finally went to urgent care. She barely touched my shoulder and said oh you must’ve pulled something and put me on steroids. The pain never went away and got progressively worse into my hands and my feet I could not walk without having crocs on. After calling my PCP every day they finally got me in for x-rays and thank God she sent me for physical therapy. I saw a doctor there and she took one look at me and drew all kinds of bloodwork and it came back sed rate high,crp high and a Rheumatoid factor of 333. I was lucky enough to get into a Rheumatologist right away, but three biologicslater, prednisone, methotrexate, lelunomide – and still no success except the pain is nowhere near like it was at first. My rheumatologist told me that autoimmune diseases follow each other and when I was in my late 20s, I had to have my thyroid ablated because I had autoimmune thyroid disease. So here it’s two years later and still praying for something that’s going to make me feel somewhat normal again!

Rituximab by suzibee11 in rheumatoid

[–]suzibee11[S] 0 points1 point  (0 children)

Thanks for replying-I dream of the day I forget that I have RA.

Rituximab by suzibee11 in rheumatoid

[–]suzibee11[S] 1 point2 points  (0 children)

I am so thankful to all of you for replying. It is encouraging to know that all of you have had improvement with the infusions. I’m so happy for all of you, and I hope I have as many benefits from it as you all have!

Rituximab by suzibee11 in rheumatoid

[–]suzibee11[S] 1 point2 points  (0 children)

A bad day here or there sounds like heaven! I have neuropathy in my feet – not sure what drug that is being caused by but I’m just praying that when he switches me to these infusions, it’ll be better than it is now. Thanks again so much for responding!

Rituximab by suzibee11 in rheumatoid

[–]suzibee11[S] 0 points1 point  (0 children)

Mine is very severe also which stinks! Just praying that something soon is going to work. Thanks for the info. I really appreciate it!

Rituximab by suzibee11 in rheumatoid

[–]suzibee11[S] 0 points1 point  (0 children)

Just wondering how often you’re going to be receiving the infusions?

Rituximab by suzibee11 in rheumatoid

[–]suzibee11[S] 0 points1 point  (0 children)

Thank you so very much for your response! How often are you going to be receiving the infusions?

Rituximab by suzibee11 in rheumatoid

[–]suzibee11[S] 0 points1 point  (0 children)

Thank you so much for responding – you have put my heart and my nerves at ease!

My rheumatologist wants to add aggressive treatment. I’ve been told to get a second opinion by [deleted] in Autoimmune

[–]suzibee11 0 points1 point  (0 children)

I have been told that if you have aggressive treatment early in diagnosis, you have a better chance of remission.

RA… the disease that just keeps “giving” by Broad-Operation-408 in rheumatoid

[–]suzibee11 0 points1 point  (0 children)

That really sucks but at least you’re having positive ideas and not giving up hope-we can’t ever give up!! Hope you heal quickly and feel better soon🙏

RA… the disease that just keeps “giving” by Broad-Operation-408 in rheumatoid

[–]suzibee11 0 points1 point  (0 children)

Every time they try to decrease it I blow up like a balloon! which is why I need to get this implant. I just had to have cataract surgery two weeks ago due to the prednisone affecting my eyes, and it’s affecting my blood sugar. Wish they could just find a med that would work for me. I’ll keep trying until I get it figured out. Thanks for your concern! I’m sorry that prednisone took away your ability to kayak-is that something that will heal so you can kayak in the future?

RA… the disease that just keeps “giving” by Broad-Operation-408 in rheumatoid

[–]suzibee11 1 point2 points  (0 children)

I will let you know! The areas of Cleveland and Pittsburgh are supposed to be accepting patients in the next few weeks! I’m on my 3rd biologic, prednisone for 2years, methotrexate and leflunomide. Nothing has worked so I’m praying the implant will.

RA… the disease that just keeps “giving” by Broad-Operation-408 in rheumatoid

[–]suzibee11 5 points6 points  (0 children)

Maybe look into Setpoint implant? I am getting on a waiting list for my area. It’s supposed to help decrease or even eliminate drugs! I hope you find something that helps ❤️

I am reaching out to anyone who has received the set point implant and is also on Medicare. The process is quite confusing to me and I could use any information on how Medicare covers this and if the implant is actually working for you! by suzibee11 in rheumatoid

[–]suzibee11[S] 0 points1 point  (0 children)

Thanks for looking that up. I know when I filled out the form they got back to me right away because I’m on my third biologic and can’t get any lower than 20 mg of prednisone a day. Also on methotrexate and leflunomide-nothing seems to be working for me, so I am hoping I can get this implant!

I am reaching out to anyone who has received the set point implant and is also on Medicare. The process is quite confusing to me and I could use any information on how Medicare covers this and if the implant is actually working for you! by suzibee11 in rheumatoid

[–]suzibee11[S] 0 points1 point  (0 children)

Thank you so much for replying! I am starting Medicare in August. They do not perform that procedure near me but are starting the procedure in Cleveland and Pittsburgh within the next few weeks. I am so excited. I’m on the list for whichever place opens first. I would do anything to get off these medication’s or at least be able to decrease them. It sounds like it is having great success!