Light at the end of the tunnel

Posted by pdxmac @pdxmac, 5 days ago

I thought I'd share a hopeful note, especially since for those of you in the middle of healing. It can seem like we will never get there! I'm not in remission yet but the trend line is (finally) very good.
I was first diagnosed in 09/23 after six months of mystery pains in just my shoulders. My PCP figured out what was going on only after the pain migrated to my hips. I started at 20mg of prednisone and was told I'd be all better in one year.
Suffice it to say that I had my ups and downs. I had to "fire" my first rheumatologist and found a new and responsive great one. I got down to 10 mg after 14 months. But while on an extended trip I developed jaw pain and my rheumatologist upped the dosage back to 20mg.
It seemed like every time I thought the worst was behind me I had another setback. I couldn't get below 10mg so she added Methotrexate, which ultimately did not help.
I needed to reconsider so many aspects of my life - from lifestyle to the amount of activities I could tolerate to my relationships. Even my sense of identity suffered since I had always been so healthy, strong and independent. Leaning on friends, my terrific spouse, and my discipline about moving even when it hurt were key. This forum was also a huge help.
The turn-around only started four months ago when my rheumatologist prescribed Tyenne (a biologic similar to Actmera) and I have steadily progressed now down to 4mg with no side effects! I hope to be in remission in very early 2026.
I don't yet know if I'll need to stay on Tyenne but I'm ready to do whatever it takes to have my life back.
Hang in there everyone! And thanks for all your tips over these long months.

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

tweetypie13 | @tweetypie13 | 5 days ago

Thank you…..for,sharing.
I feel the same way….hang in there

Mike | @dadcue | 5 days ago

"The turn-around only started four months ago when my rheumatologist prescribed Tyenne (a biologic similar to Actmera) and I have steadily progressed now down to 4mg with no side effects!"
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I just wanted to bring this point to the top of the thread. I hope Tyenne will get you off Prednisone. Actemra was the light that allowed me to get out of my tunnel after floundering around with Prednisone for 12 years.

kare1 | @kare1 | 4 days ago

I’ll try to stay positive! Thanks for your post. I’m now at 3 mgs alternating w/3.5 mgs this month on prednisone. I’m not feeling any pains. I’m also on methotrexate. I began this journey with prednisone in March then added methotrexate in May. I had my labs done today and the usual RBC and Absolute Lymphocytes are still low. No real change over this PMR period. My SED rate did jump up from 19 in August to now at 28. I’m getting nervous as the normal range says 0-30. I’ll have a virtual visit w/rhuemy on Tuesday. I’ll see if he is concerned. I’m ready to get off the prednisone as my hair is so thin, my skin is so delicate and my mid section is a blimp! Ha. But at least I FEEL OK and that’s worth it. I can go for my nature walks, go to operas and ballets in comfort, play with grand babies and get a night’s sleep. I’ll stay positive!

ropnrose | @ropnrose | 4 days ago

I saw a remarkable improvement in my health about 3 months after I began Actemra infusions. I have been able to resume the activities I love. The Actemra was key in helping me taper completely off of Prednisone. Being off of Prednisone, I was able to eliminate 2 medications I needed to address side effects from the Prednisone (I turned into a diabetic while on Prednisone). I finished my last dose of Prednisone the first of November 2025. I'm so happy to be off of Pred, but now I'm dealing with immune issues. I 'picked my poison' and chose Actemra. No regrets. My rheumatologist was going to start tapering my Actemra dosage in January 2027 (you read that right). That would be my 2 year anniversary on Actemra. However, due to my low WBC, he started my taper this month, after 11 months. Time will tell.

mun68 | @mun68 | 2 days ago

how long were you on prednisone before switching over to Actemra?

pdxmac | @pdxmac | 2 days ago

I started at 20mg on 9/1/23. I went up and down from there - at one point I was as low as 10mg and at another I was at 60mg! (After an allergic reaction to a yellow jacket sting). I could never get below 8mg, even with Methotrexate. I am currently still on it but titrated down to 3.5 as of today. I hope to put it behind me by early January 2026. If trend lines continue I should be able to do that.

farnhamlaf1 | @farnhamlaf1 | 2 days ago

My doctor looks very confused when I tell him about how I feel I’m down to 2 mg of prednisone, but still in a lot of morning pain which kind of lingers throughout the day after how many rounds of Tylenol I have a lot of difficulty getting out of bed in the morning, a lot of you had said the same thing Now it’s drifted down to the back of my knees and my calves, which makes it difficult to walk and I’m an avid walker so it’s really disappointing. He doesn’t want me to go on Kazaa, says it’s really strong so I see him in a couple weeks and again I’m still in a lot of pain so I don’t know what direction he thinks he’s going. This is my second doctor. I don’t think they know what’s going on with palymyalgia I don’t think they know how to deal with it. Some people say it last for two years. I’m almost a year and a half in wish that was true.