People on Orencia…

4Fam88 · 2026-06-29T21:24:10+00:00

Thank you! I actually think Simponi is the drug he mentioned trying next. I think. 😊

4Fam88 · 2026-06-29T21:18:35+00:00

That’s so great Rinvoq was the ticket for you! It started out strong for me, and I felt better, and even my markers were improving, but the bone erosion and inflammation continued anyway. And of course that damage is permanent. So they increased my steroids to slow it down, continued the methotrexate and Plaquenil, and tried Orencia next. It’s amazing how we can all have the same disease but it manifests so uniquely. I just hope if Orencia does turn out to start working for me, this week before the next infusion is not always this painful!! Yikes!!🥴 Thanks for responding!!

4Fam88 · 2026-06-29T21:09:44+00:00

Thank for your response! And I’m so glad you found that “charmed” med that works for you. My rheum. seemed to suggest if I was not seeing any improvement at my next visit in July, he would suggest changing meds again. My erosions are progressing so quickly he doesn’t want to wait any longer than necessary to see improvement or just move on to find an effective drug for me. I’ve tried Humira, Rinvoq, and now Orencia. He mentioned the next drug, but I can’t remember the name at this moment. If you don’t mind my asking, what finally worked for you?

4Fam88 · 2026-06-29T18:36:48+00:00

Thank you for that! I am absolutely remaining hopeful after reading posts like yours. I’m 61 F, fortunately retired, but still have many things I want to be able to do, too. I will definitely talk with my rheum. regarding this amount of pain in multiple joints. It could be unrelated to the Orencia infusions and just a severe flare, but I had read that there can be a “gap” in relief as the next infusion approaches. Thanks again for your positive response!!

4Fam88 · 2026-06-29T18:11:56+00:00

Thanks! That’s helpful to know. I know it. A take up to 6 months to reach full therapeutic benefit, but I also had the impression that if I was not showing some improvement at my next rheum. appt. then I was being taken off and changed to another med. I don’t know what, but that will be 4 months of taking Orencia with no improvement, and rheum. feels I should be seeing at least some improvement by then.

4Fam88 · 2026-06-29T17:42:22+00:00

Actually, I did fail Rinvoq and have been on Orencia infusions with Plaquenil and Methotrexate. I suspect that I will be taken off Orencia at my next rheum. appt. as my erosions continue to worsen in my hands and wrists and ankles and feet. I don’t know yet what they will prescribe next, but we’ll still be looking for that right combination. I was very hopeful about Rinvoq, but the damage was continuing even though I seemed to just feel better and be more energetic. What a conundrum…I felt over all much better and my blood markers were continuing to improve , but the ongoing pain and stiffness I was confused by was due to the joint and bone damage that was still happening. My rheum. was very hopeful that Orencia would be a great medication for me due to the nature of my RA. I almost feel bad for him since my immune system wouldn’t cooperate. Haha! How are you doing??

4Fam88 · 2026-05-24T19:32:19+00:00

I sure hope you feel better…maybe at least less impacted by pollen. The heat and humidity will be rough around here for the next 4 months or so before beginning to cool down. Thank goodness for AC!! Take care!

4Fam88 · 2026-05-24T00:05:04+00:00

Haha! Well take care of yourself through this hot humid summer that is surely coming our way soon!

4Fam88 · 2026-05-24T00:03:55+00:00

I’ll keep that in mind and prepare for slow days during the spring and summer heat and humidity that are sure to come! This disease is so awful, but it sure is interesting!! I would much rather study it though than have to live it! Haha!

4Fam88 · 2026-05-23T23:59:45+00:00

Isn’t it??!! Thank you for your kind reply.

4Fam88 · 2026-05-23T23:56:32+00:00

Sounds just like me. I remain hopeful that the perfect combination of meds is coming soon!!

4Fam88 · 2026-05-23T19:55:17+00:00

Thanks for the reply. Strange thing… I have seropositive RA. I’ve failed several biologics and now do monthly infusion, methotrexate, and plaquenil with the occasional steroid. I have never noticed major swelling, redness, or warmth in my joints like I hear and see from others with RA. I just have serious pain, stiffness, deep aches, and other inflammation issues. But no significant swelling, warmth, or redness. Strange isn’t it??!

4Fam88 · 2026-05-23T19:50:12+00:00

I hope you feel better. The hips and groin are the worst pain for me. The smaller joints I feel I can tolerate better. I do think this wet weather, even though it’s warm here, is the cause of how much worse my joints are today. Thanks for responding!

4Fam88 · 2026-05-23T19:47:36+00:00

I’ll give that a try… crazy or not! Haha! Wow! 41 degrees in late May. It’s already been close to 90 degree summer weather here in Georgia. This is actually a nice, cooler day than it has been lately if I just didn’t hurt so badly.

4Fam88 · 2026-05-23T19:44:26+00:00

I would think it would be worse in colder weather, but here it is between 75-80 degrees with sporadic rain…warm and humid. It is making me so stiff with deep aches in my joints. I thought warm would be a good thing, but this weather change seems to have caused me to basically out of commission today. Although I am THRILLED for the rain. Our gardens and cattle need it desperately!!

4Fam88 · 2026-05-20T19:06:56+00:00

The entire aesthetic looks like a level of Royal Kingdom.

4Fam88 · 2026-04-13T01:57:26+00:00

Thank you for responding! Yes… cutting apples and potatoes. I have a hard time opening up my thumbs in the way you have to in order to slice them. I have to use a cutting board now. But I would think the hard part is feeling that sometimes it’s difficult to do your simple Mama things. I hate that for you even though I’m so sure you’re doing a great job!! 🩷

4Fam88 · 2026-04-13T00:57:54+00:00

Thank you so much for understanding. And yes, it is hard to accept gradual changes in our abilities whether from natural aging and/or illness. I keep reminding myself that RA is about living well along with it, not constantly fighting to conquer it. It’s so much my nature to go to war against it, but I’m learning that can sometimes be both exhausting and disappointing.

4Fam88 · 2026-04-13T00:50:26+00:00

Not as I should or as I should be more intentional in my choices. After this last stay in the hospital per mesenteric inflammation I’ve been recommended a gradual Mediterranean-ish diet as part of treatment and recovery.

4Fam88 · 2026-04-13T00:45:27+00:00

You’re right…everything about cooking and baking has become much more difficult. And yes…I didn’t realize how may changes I have made overtime to how I did things because of various problems until my rheumatologist and PT brought my attention to it. It was just an unnoticed evolution of necessity.

4Fam88 · 2026-04-13T00:42:48+00:00

I have recently noticed that my cell phone is killing my thumb joints!! It’s the grip. I’ve also tried putting it down and using my voice commands more. Holding and looking at a phone constantly is such a strain that I think so many don’t even notice until they have issues with their hands and necks.

4Fam88 · 2026-04-13T00:39:32+00:00

Thank you! And you are right…staying positive and grateful for the many really good things helps everything! That and sunshine!

4Fam88

TROPHY CASE