Rinvoq - Week 10 - Update

Well, the Rinvoq has been a roller coaster - but mainly for good so far. Within 2 weeks I started to feel better. But, I have had some flares - they seem to revolve around weather changes, which I guess is good. But a few have been pretty bad. With the public virus scare and lowered immunity, I do my best to make sure I get the rest I need and try not to stress. The doc told me to stop taking the Plaquenil after 1 month, which was scary since I've been on it for 15 years. I did have a bad flare about a week later after that, but a storm came in as well.

I feel like overall I'm still adjusting to the med, but here's some things I've experienced (good and bad):
*Getting adjusted to the med was an interesting GI event (I'll spare you the details, unless you really want them)
*I find I have to drink a LOT of water on this med or else I feel terrible. I take the med at 7:30 each night, and if I don't have at least 3-4 cups of water by noon the next day (after waking up, that is), I feel awful. I typically drink 9-12 cups of water a day now. And sometimes that means waking up a lot at night to use the restroom (but not always, which is good and weird).
*Within the first 6 weeks, i found myself being able to do things I haven't been able to do in decades - like sit on the floor with my legs crossed while stretching.
*My fatigue and energy has improved - but I come home one or two days a week completely exhausted and ready to go to bed early. Since this has not been something I usually could do, I'm thinking this might be a good thing?
*General issues that don't seem normal to arthritis, but have been affected by it are better - my ear pain/issues, stomach/GI issues, sleep patterns, vertigo - not completely gone, but much better
*Even tho I'm on Singular for allergies, they seem slightly worse. I also find myself getting super thirsty and dry eyes and throat easily.
*I can walk easier and quicker at times
*I have days where I just feel good...and it's a wonderful feeling after all these years.

Some info on me: I have psoriatic arthritis for as long as I can remember, some RA, and they told me they are seeing signs of OA. I had JRA as a child/teen (tho, I had psoriasis too - so I'm wondering if it really was just PsA). I have been overweight since being laid up for a few years, many years ago - which I hope will change with this new found mobility (will I be running marathons? no, but I don't have the need to be dormant all the time either.).
Anyway, if you're thinking of trying it - I say give it a shot. It's a daily pill and you have to keep it in its original container (not a weekly pill box) and take it about the same time every day (like an anitbiotic). I'll post an update in a couple of months.

Yes. It's been amazing when I can suddenly do something I haven't done in decades. Almost makes me cry.
Yes. I see an ophthalmologist every four to six months. For the plaquenil checks and for chronic dry eyes.
Been worried about the new virus. Company is allowing us to work from home for a while. I'll start on Tuesday next week.

Thank you. Yes, the kids are home as well. It'll keep down the worry. A lot of folks already were at home yesterday at work, and for a moment I thought maybe it wouldn't be so bad to keep coming in if it's this light of people. But, then there was a person coughing up a storm and I said, "nope - forget it!" lol
The dry eyes hit me a few years ago - I couldn't work after 6 hours. My eyes would be done. Thankfully, there are drops they can give you for that. They basically saved my career. Scary. The extra dryness and thirst has hit since taking this med - so hoping that is all it is and not anything worse.
With the lighter crowds at work and knowing your immune issues - hopefully there won't be any problems with your husband staying clear of any contagions.
Stay healthy!

Yeah, my kids are a freshman and sophomore in college. My daughter commutes on public transit, so I'm really glad she's home.
What did your doctor give you? Restasis? Xydrol? I got relief from both.
I don't think the dryness is a listed side-effect of this med, but I'm thinking it should be.
my company sent us all home for 2 weeks now. so, i'm glad it's for everyone.

Glad to hear you are getting some relief on the Rinvoq CaMama. It is so heartening to hear when someone is doing better. I hope it continues on indefinitely and you are soon turning cartwheels with the kids.
My Doctor wanted to put me on Rituxan recently but I just don't have the stomach for another biologic especially one that has such a long shelf life with 6 month infusions so instead he wants me to try going back to MTX, Plequinel, and Sulfasalazine. I am game to try it. I am already taking MTX and sulfasalazine worked really well for me a few decades ago.
Take care,
Don

CaMama I’m so glad you are doing good on that. My doctor was waiting on that drug to come out he just knew it was going to help
Me as I’ve been on so many we are starting over trying some that I’ve been on before to try and get some results. When that drug finally became available he sadly reported to me that I could not take it because I have had a blood clot before. 😢😢😢. So I’m back on Imuran 100 mg again. It’s working ok he is adding acthar gel injections starting tomorrow. So we will see. I just pray it helps and I can get off steroids. Hugs
Peggy

Hey CaMama I’m doing well on the injections and the imuran. I have had to start taking glimepride for diabetes tho. It’s always something. Dr said it was due to the steroids I’ve been on for years. Of course it runs in my family terribly. So there is that. Plus I don’t eat right and I’m overweight too. I gotta do better. My pain management dr also put me on the fentanyl patch and my pain has been so much better since that. I hope your bp gets under control soon. That is a scary thing. Let me know how things go with you. Hugs my friend.
Peggy

Michelle - hope you are doing well on Rinvoq. I had to stop. It ultimately affected all my lipids (cholesterol, liver enzymes, etc) I had to stop. It was an absolute miracle drug for me, but eventually I felt awful when everything else came to a head. However, I already have naturally high cholesterol and am overweight - so, take care of your health and keep on your blood work to make sure things are going well.
I had cut back to 4 Rinvoq a week, instead of 7 and it did help lower the lipids, but the doc made me stop when I made a comment about something and they worried it was the Rinvoq, which I KNOW for a fact it was not. I also needed an extra med (went back on plaquenil) to help with the missing 3 doses of Rinvoq.

Post Edited (CaMama) : 11/9/2022 6:21:36 PM (GMT-8)