Tofacitinib for Rheumatoid Arthritis User Reviews (Page 4)
Brand names: Xeljanz, Xeljanz XR, Xeljanz Oral Solution
Reviews for Tofacitinib
- Sun...
- Taken for less than 1 month
- March 2, 2020
Tofacitinib "I am on 11 mg Xeljanz for RA, and it has only been five days. I had diarrhea several times a day since starting it. I really hope that goes away, or I will have to stop it. My upper body is really hurting since starting this medication. Nothing is helping. I take pain medication, methotrexate, and prednisone also. The pain isn’t subsiding."
- Nan...
- May 9, 2017
Tofacitinib "Xeljanz XR is the first medication to truly give me relief. It has allowed me to live somewhat of a normal life! None of the biologics worked, and methotrexate was a bust with lots of side effects. I've been on it for 9 months and am very happy."
Frequently asked questions
- What are the new drugs for rheumatoid arthritis (RA)?
- Is Xeljanz an immunosuppressant?
- Who makes Xeljanz and where is it made?
- KLT...
- Taken for 6 months to 1 year
- August 6, 2022
Tofacitinib "I was diagnosed 15 years ago with seropositive RA. I have literally been on every medication and combo. A few years ago, I was given Xeljanz, and it was pure bliss for 6 months. I felt like a normal person and very quickly! After about 6 months, it suddenly lost its effect, and I went back to trying new medications. Three years later, and out of options, I asked to go back on Xeljanz to see if enough time had passed that maybe I could get some relief for even a short period. I began taking Xeljanz XR this time, and again within a week, my pain and inflammation was lessening greatly. I couldn’t write more than a sentence, and now I have zero struggle. I couldn’t use my right wrist, and now I can use it completely. It is the 6-month mark this month, and I am holding my breath that I continue on this track of amazingness. I have had no side effects, no illnesses, and feel fantastic."
- Mil...
- March 3, 2017
Tofacitinib "I was prescribed this med. I have alopecia areata, to regrow my hair, but I've been reading about this pill and it's so scary that I haven't even started taking it. Please give me your opinion. What should I do, keep myself without hair and be healthy, or take the pill and see what happens with the side effects?"
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Your review helps others make informed decisions.- ade...
- July 19, 2019
Tofacitinib "Been off of Xeljanz since June 5th. I am in so much pain going on Cimzia, but insurance denied it, but Dr. is working on getting it approved as I am in so much pain. I can honestly say this is the worst I have felt."
- Ama...
- Taken for 1 to 6 months
- October 19, 2022
Tofacitinib "I have been taking Xeljanz for 4 months now. I have experienced less joint pain and swelling in some joints but increased significantly in other joints to the point of crying. Extreme fatigue, dizziness, nausea, and a general unwell sick feeling. I was previously on other biologics and then just on prednisone. I would much rather feel the way I felt before taking the Xeljanz. The way I feel on this drug is worse than being on nothing."
- Los...
- Taken for less than 1 month
- September 26, 2017
Tofacitinib "On my 3rd week with no improvement, increased pain, swelling, and fever exponentially increased, (not 'core' temp just 'hot joints') decreased energy, frequent headache, and increased depression! I didn't know any of these things could get worse than they already were. But they have! :-( Hanging in there because mine is in every single joint and 'unrelenting.' I don't really have flares 'cause mine is constant daily (and nightly) pain, swelling, the fever."
- Mrs...
- Taken for 1 to 2 years
- December 3, 2022
Tofacitinib "I was hesitant to try Xeljanz. The reviews scared me to death. I decided to give it a try, and I’m glad I did. I’ve had a few sinus infections in the last year, but I stopped the Xeljanz for ten days, and antibiotics cleared it right up. I’ve had none of the terrible side effects I read about, and it’s been over a year now. My RA is close to remission. I’m thankful for this drug, and hopefully, with careful monitoring, I will continue to do well on it."
- rox...
- July 16, 2017
Tofacitinib "I have been on so many different drugs for my RA, this one has been the best one yet. I do have insurance, but the cost with insurance is still very high ($1000) a month. My doctor's office helped me to help from Xeljanz to pick up the difference."
- Jen...
- Taken for less than 1 month
- October 24, 2020
Tofacitinib "I was on prednisone for 6 months, then did Cimzia injections. No improvement. Xeljanz - I am on month 2. So far, so good. I did develop a sinus infection, but I dealt with it. I am not giving up just because of that. I will keep you posted. Feeling good today."
- HAP...
- Taken for 10 years or more
- December 11, 2024
Tofacitinib "I have been taking Xeljanz for about 11 years now. The longer I have rheumatoid disease, then the more I forget, or have difficulty recalling exact figures/dates/times. I was never going to kick Newton off of his math perch. It took me 3 tries to pass high school algebra, yet I can still remember dialogue sequences from movies I saw 48 years ago?! Truthfully, I'd rather have my health from 48 years ago, but que sera. Since I started taking Xeljanz, I fight more with doctors who want me to stop taking it! When I have had difficulty with the paperwork being approved, let me tell you, I can feel and see it! Others can see that I haven't been taking it, just by the size of the bumps on the outsides of my wrists. I take the 5 mg pill, twice a day. I notice one and only one side effect - NOT taking it. I thank the Lord every day."
- Ski...
- Taken for 10 years or more
- October 14, 2024
Tofacitinib "I was diagnosed with RA in 1996. Of all of the biologicals and JAK inhibitors that I’ve tried, which is many if not most, Xeljanz and Xeljanz XR are the only effective Rx. When I have stopped use, RA symptoms have returned in less than a week. Upon resuming Xeljanz, the effect was noticeable in three days. The sinusitis is annoying, but that is the only side effect that I’ve experienced."
- Net...
- Taken for 1 to 6 months
- November 19, 2019
"I was so worried starting this medication after all the reviews. I’ve had a few issues with cold sores and stomach issues, but I’ve always had stomach issues. I have no sore joints at all from day two of starting these tablets. I’m on one a day, and my joints are amazing so far, fingers crossed."
- Ann...
- Taken for 2 to 5 years
- June 7, 2022
Tofacitinib "I have had rheumatoid arthritis for 42 years and am 72 now. Before I was put on the drug Methotrexate, I would ask God not to let me wake up. Painkillers did no good, the pain was so severe. I have been on Xeljanz for a number of years now, and I can cope with my arthritis. I have a number of other problems now, taking around 17 tablets a day. Xeljanz doesn't seem to have interfered with any of them and lets me enjoy life."
- Els...
- Taken for 6 months to 1 year
- September 20, 2021
Tofacitinib "When I started taking Xeljanz, I was also on Methotrexate and hydroxychloroquine (Plaquenil). I was having GREAT results! My doctor had me slowly taper off the Plaquenil and Methotrexate, and I was still doing really well. BUT, then came Covid-19, and I was told to stop the Xeljanz for two weeks prior to and following my vaccinations (Moderna two-shot vaccine). So, I was off Xeljanz for two months. The pain that returned was so severe. Once I could restart the Xeljanz, my doctor also put me on a low dose of Prednisone to speed up my recovery. However, it's been 5 months back on Xeljanz, and I'm only getting very, VERY minimal relief from my pain. It seems that being off Xeljanz for those two months caused my body to not react the same as before. It's very frustrating. I hope my doctor can figure out a new way forward soon. PS: I had no known side effects from taking Xeljanz."
- Kim...
- Taken for 1 to 6 months
- July 2, 2024
Tofacitinib "Worked in about 1 month. 5 mg twice a day with hydrochloroquine (plaquenil). No side effects!! I am also super sensitive to most meds, for anything! Tried Humira and Enbrel. Those BOTH I had swelling, headaches (bad), diarrhea. Just all around sick."
- Anonymous
- Taken for 1 to 6 months
- July 2, 2024
Tofacitinib "Worked in about 1 month. 5 mg twice a day with hydrochloroquine (plaquenil). No side effects!! I am also super hyper-reactions to most meds, for anything! Tried Humira and Enbrel. Those BOTH I had swelling, headaches (bad), diarrhea. Just all around sick."
- Lef...
- Taken for 1 to 6 months
- November 28, 2020
Tofacitinib "I was getting Orencia infusions for a few years and was pain-free from my RA. Started on Xeljanz due to the COVID situation (I didn't want to risk going to the hospital). I'm taking 10 mg twice a day. So far, I'm still barely able to function. I am hoping that it just needs to build up in my system. Male, 63, 180#."
- Cha...
- Taken for 2 to 5 years
- December 2, 2023
Tofacitinib "I have severe RA. Xeljanz XR works well when I use it with 20mg methotrexate pills once weekly. I have been taking this combination for 4 years. The only bad side effect I notice is cramps in my feet occasionally, and not so occasionally in my hands. I didn't have this condition until I started using Xeljanz XR."
- Nam...
- Taken for 6 months to 1 year
- December 15, 2023
Tofacitinib "Have been on Xeljanz for a year, and now it’s not as effective. Got a blood clot in my leg. My doctor says it's not from Xeljanz and that there’s no way of knowing. This drug has an interaction with aspirin, so if you did get a blood clot, taking aspirin wouldn’t be optimal. I told my doctor that I want to switch medications to avoid long-term problems that may develop with this drug. If you take a look at all the different medications prescribed for rheumatoid arthritis, you will see how differently they work. I am trying to figure out what to target. These drugs all work differently. Methotrexate (Mtx) was the most effective for me, but it meant one to two days in bed due to nausea. You will notice that as you continue taking it over time, you feel sicker than the week before. However, I had absolutely no pain with this drug (Mtx). I think maybe switching drugs yearly may prevent side effects."
- Azi...
- Taken for less than 1 month
- January 11, 2021
"I'm 32 years old. I was diagnosed with RA nearly 12 years ago. I have been on steroids and methotrexate and used other combinations of NSAIDs. But those were not doing well. So I developed deformity in some fingers. Changed a few doctors. Finally, my current rheumatologist used a combination of sulfasalazine, leflunomide, and methotrexate, which controlled my RA very well. I got complete remission for the last 6 years with these medications. Quit steroids, no pain, all test reports are good, I can even run. However, recently my liver SGPT count came high, and my doctor thinks that this is because of the leflunomide and/or sulfasalazine. So he suggested quitting these and starting tofacitinib (Xeljanz). But after reading these reviews, I am now afraid of starting tofacitinib. What if the RA flares come back again? I don't know what to do."
- Bea...
- Taken for 6 months to 1 year
- July 30, 2021
Tofacitinib "Ineffective for me. While it was great not to have infusions, I had the worst flares I'd had since my onset. Huge, awful flares that steadily increased in frequency, duration, and severity. Was happy to return to Remicade. I guess it works for some people, but for me, it was a long, painful disaster."
- len...
- Taken for 6 months to 1 year
- May 21, 2018
"I have been taking tofacitinib for about six months. After a few weeks, I started to notice that my hair was falling out. I complained and was told to stick with it, but my hair is still thinning, which scares me. I now get a lot of heartburn (almost daily) and would just like to know if anyone else gets these side effects from this drug? I have RA, fibromyalgia, and lupus."
- Old...
- Taken for 2 to 5 years
- March 25, 2025
Tofacitinib "I have used various biologics, but none as effective as Xeljanz. Initially, I had nausea and diarrhea for a few weeks, which disappeared and nothing else since. It is great to have a medication that keeps my pain and inflammation levels at an acceptable level. I have been on Xeljanz for about three years with no issues."
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Tofacitinib "62 years old and have had RA for 22 months. Tried methotrexate pills and then injections. Next, I tried Humira injection with limited relief. Switched to Xeljanz XR and found immediate relief. I have had no known side effects except some skin rash, and the rash might not be associated with Xeljanz. I am able to function in life again."