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Tofacitinib for Rheumatoid Arthritis User Reviews

Brand names: Xeljanz, Xeljanz XR, Xeljanz Oral Solution

Rating: 5.4

Tofacitinib has an average rating of 5.4 out of 10 from a total of 125 reviews for the treatment of rheumatoid arthritis. 42% of reviewers reported a positive experience, while 44% reported a negative experience.

10
22%
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14%
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6%
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4%
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3%
5
5%
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2%
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9%
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11%
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24%

Reviews for Tofacitinib

Commonly mentioned side effects
  • Ros...
  • Taken for 1 to 6 months
  • September 19, 2019

"My wife passed away on 3/30/16. She was on Xeljanz for about three months before she became ill. Xeljanz lowers your immune system, and for that reason, she contracted Encephalitis. Sepsis ended up killing my wife. While she was on a respirator in her final days, she was diagnosed with slits in her intestines which caused her to bleed. One of the warnings published by Xeljanz."

2 / 10
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125 Report
  • Ric...
  • Taken for 6 months to 1 year
  • August 2, 2019

"I've been prescribed several of the 'conventional' medications - Methotrexate, Plaquenil, Sulfasalazine, Arava, and none of them was able to put a dent in my RA condition. Tried the biologic Brenzys and that worked wonders, however, 4-5 months into the treatment, I developed intense side effects and had to abandon it. Moved on to Xeljanz 5mg twice a day and voila - magic. It's been 9 months already, and I feel great. It has made me forget the pain of RA and the will to abandon everything. It has given me a new life and the will to live and do things again. Truly a wonder drug for me."

10 / 10
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115 Report
  • Mea...
  • Taken for less than 1 month
  • October 22, 2019

"I do not recommend this drug to anyone! I have been on leflunomide for the last 4 months, and it didn’t help, so my doctor put me on Xeljanz. Immediately, I started having sinus pressure, my eyes burning, and developed bronchitis and an upper respiratory infection. The fatigue is unimaginable, and severe headaches along with body aches. My anxiety has increased to the point it’s intolerable. I ended up in the ER tonight due to the pain I was in and coughing up blood! I really just want relief from my RA symptoms, but the side effects are far worse than the RA pain itself!"

1 / 10
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103 Report

Frequently asked questions

  • Ken...
  • Taken for 5 to 10 years
  • January 11, 2016

"37 inflamed and 18 painful joints before my first dose. 2 months later, 4 inflamed and 2 painful joints. 6 months later, 2 inflamed and 1 sore joint! The best RA drug I have taken to date. I have been on the drug for 6 years. I had been suffering from RA since 1987!"

10 / 10
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126 Report
  • tul...
  • Taken for 1 to 6 months
  • August 9, 2013

"Started to work the second day on it. I don't wake up with stiff hands and my joints hurt way less. I'm almost off the prednisone. I love it! Has worked better than anything else I've tried. Copay is covered through their assistance."

10 / 10
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134 Report

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  • Rob...
  • August 28, 2019

"Same as many others. First two months were terrific. Inflammation and joint pain nearly all gone. Great energy. Felt years younger. Then came the throat/sinus infections with headaches and increased blood pressure. The latter scared me the most. Quit taking drug and called doctor. It’s sad. This drug holds so much promise but if it turns on you, look out."

5 / 10
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79 Report
  • Bri...
  • Taken for 1 to 6 months
  • March 27, 2020

"Been on this Xeljanz poison for three and a half months. I got worse and worse with pain. Muscle weakness. Enlarged liver. Terrible stomach problems, excruciating pain in my guts, and constant nausea. Liver pain, swelling in feet, hands, wrists, and general unwell feeling. Developed chest infections. The chemist ran out, so I was without it for three days. Stomach... good! No liver pain!!! Not one ounce of swelling. Night sweats stopped. Burning up feeling stopped. Day one back on it... all symptoms back!!! Dreadful poison. I'm stopping it."

1 / 10
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68 Report
  • ken...
  • Taken for 2 to 5 years
  • February 11, 2014

"I have been in a clinical trial with this medicine for 2 years. It started working on the day after I started taking it. I was in a wheelchair prior to taking this. I have had no bad side effects and highly recommend it."

10 / 10
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117 Report
  • No ...
  • Taken for 6 months to 1 year
  • April 1, 2017

"Those who suffer with incurable rheumatoid arthritis understand the willingness to try a new medication that could possibly ease the painful symptoms of RA. I tried Xeljanz hoping it was the limited cure-all. I've never paid too much attention to the commercial warnings as I am like many others that think, that couldn't happen to me. Well, it did. I ended up hospitalized for several months diagnosed with E. coli sepsis. In all fairness, this drug may be the one to help you. Unfortunately, it wasn't for me. Do take seriously the warnings that could develop while using this drug. It CAN happen to you."

1 / 10
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86 Report
  • Ano...
  • October 12, 2015

"I started taking this medicine after a long unsuccessful stint on methotrexate. Metho made me super tired and my hair fell out in clumps with almost no improvement in pain, stiffness, or energy level. Xeljanz changed my life! My hair also grew back full force on this medicine and my energy level is totally restored. I get a flare maybe twice a year on this medicine and have figured out that a prednisone taper and a month of this can kick me into a 4-8 month remission period. It really works and worked within the first week for me. I am 24 and have not experienced many side effects after the first week of pills. It has also decreased the severity of my seasonal allergies and totally eliminated the eczema I used to get all over the place."

9 / 10
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91 Report
  • Hus...
  • Taken for 1 to 6 months
  • March 15, 2020

"To begin with, everyone who has RA needs to choose between quality of life or quantity of life. You can't have both. The meds used to treat RA are very strong and have side effects. Period. I have been on Xeljanz XR since early January and have not experienced any of the bad side effects yet. It is controlling my RA well, in conjunction with Methotrexate, folic acid, and leucovorin. Previously, I have been on Enbrel and Humira. Enbrel worked for a long time, Humira was okay but not as good, and now Xeljanz XR."

9 / 10
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64 Report
  • Mea...
  • Taken for 1 to 6 months
  • July 24, 2018

"This medication does work. My liver and kidney numbers began to rise after the second month, and I had to get off it. It also causes lung pain - a burning, odd feeling inside the lungs and stabs of pain. There is pain in the back of the lungs too. I want to tell you all to make your rheumatologist try Minocycline. They swear it's for mild disease, but I have severe RA, and it took it completely away for 17 years - a miracle. The only reason I got off was that I developed pericarditis (heart inflammation), and they worried it was a rare response (drug-induced lupus). But three years later, still off it and still having pericarditis, so I talked the doctor into letting me try it again. Go to The Road Back Foundation to read about the bacterial infection theory of RA. I swear it's true - why would RA go away for 17 years, but come back if I skipped a couple of Minocycline pills? Good luck to us all. Horrific disease."

3 / 10
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64 Report
  • san...
  • Taken for 1 to 6 months
  • December 20, 2013

"I experienced an improvement in pain, swelling, and stiffness within the first two weeks. I was able to titrate off of prednisone and hydrocodone. However, I am experiencing stomach upset and rapid hair loss, which is very disconcerting."

9 / 10
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88 Report
  • Anonymous
  • Taken for 2 to 5 years
  • May 7, 2019

"After having limited relief with 2 injectables, I started Xeljanz (5 mg once daily) 3 years ago, with essential remission of my joint pains. I discontinued briefly after a shingles outbreak and vaccination, only to have recurring joint pain. I resumed after 6 weeks and have had good results since. Game changer!"

10 / 10
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53 Report
  • Anonymous
  • Taken for 1 to 6 months
  • March 10, 2017

"I have had RA for 35 years. I stopped taking Humira due to cost since I became eligible for Medicare, and the medication was no longer providing swelling and pain relief. I tried Simponi and Orencia with minimal relief. After starting Xeljanz, I had marked swelling and pain relief in six weeks. I had planned, prior to starting Xeljanz, to have two joints replaced, but I have since canceled due to improvement. My physician is decreasing the methotrexate dosage slowly to see if I can discontinue it. I am so pleased."

10 / 10
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61 Report
  • Sie...
  • June 8, 2020

"I am currently on leflunomide only, and my symptoms are getting worse, so the doctor prescribes Xeljanz. I have taken every injectable, including Remicade infusions, that eventually all stopped working. I have to say I am scared to take this drug. I have read all your reviews, and it doesn't make me feel any better. For those of you who take prednisone on a regular basis, I just wanted to share with you that my bones got so brittle from having to take prednisone to get flares down. I am an avid walker, and my fibula just ended up breaking because of steroid usage. Currently, I have inflammation in my neck so badly that I cannot turn my head at all, but I just don't think I want to try this Xeljanz pill. Still searching for a better way."

2 / 10
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46 Report
  • Ema...
  • Taken for 6 months to 1 year
  • April 20, 2019

"I'm 19 and have been on Xeljanz for around 6 months. I take it along with methotrexate, which I have done with all of my other treatment options. I've struggled with catching anything and everything since starting this med, and when I get sick, I have trouble fighting it off. From stomach bugs, ear infections, colds, anything. I have never struggled this much with catching things, and seemingly small issues end up turning serious and landing me in the hospital. Other than this, I have also struggled a lot with joint swelling on this drug. Not sure if I will be able to stick with this."

6 / 10
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42 Report
  • MzL...
  • Taken for 1 to 6 months
  • December 29, 2020

"My rheumatologist prescribed Xeljanz almost immediately. I knew something was wrong. Long story short, I had blood clots in my lungs twice within 3 months. And now I am on blood thinners for the rest of my life!"

1 / 10
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32 Report
  • NAN...
  • Taken for 6 months to 1 year
  • February 15, 2017

"Started Xeljanz XR after everything else failed. I had immediate relief, and it continues to work for me. My hair is growing back after a failed attempt with methotrexate. A surprise side effect for me after 6 months of usage was increased energy! WOW, I'm enjoying that and being able to function much, much better!!!"

9 / 10
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54 Report
  • Xel...
  • March 26, 2017

"Moderate/severe RA, it's not recommended. Tried it though; very little help. Withdrawal is awful due to anxiety/depression. It's not stated, but there must be an ingredient that is also used for antidepressants in Xeljanz. Most other countries in the world refuse this drug. Just be careful. Ask for other options!"

1 / 10
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57 Report
  • Hop...
  • January 5, 2018

"I have tried all the RA drugs available over the past 9 years. The last two drugs prior to Xeljanz: Humira for 4 years and Enbrel for 6 months created neuropathy in both hands and feet. I never had much relief with either of the two shots. I have always taken prednisone. I started this 11 mg tablet 5 months ago, I’m walking up to 8,000 steps per day and feel less depressed and have more energy, experiencing pain only with weather changes. The relief with this pill has been God-sent. Only complaint is the cost, these drugs should be available to everyone at a reasonable cost, no different than the cost of insulin for a diabetic. Drugs are made to promote quality of life, not lucrative lifestyles for the drug executives."

9 / 10
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48 Report
  • Cin...
  • Taken for 6 months to 1 year
  • July 23, 2019

"I have been taking Xeljanz for a little over 6 months. Finally, there is something that really helps with my rheumatoid arthritis. I have tried several different medications before this, and nothing touched it. Very thankful for this drug."

10 / 10
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40 Report
  • Mad...
  • Taken for 1 to 2 years
  • August 1, 2019

"I've been taking Xeljanz for 16 months. During that time, I've had a couple of surgeries and illnesses, so I had to stop temporarily. But overall, when I take it regularly, it has given me my life back. I can do most anything now, before, I was 80% bedridden."

10 / 10
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39 Report
  • kar...
  • Taken for 1 to 2 years
  • August 27, 2016

"I started Xeljanz 1-1/2 years ago, after all the years from 2008, having pain and stiffness and some relief. This Xeljanz so far has been a miracle to me. I'm down to 2-1/2 mg of Prednisone, which I hope to be able to completely be off it, except for flare-up times and needing a tapering of it. I still have chronic pain every day, but don't we all? There's so much less of it though, that life is of more quality. I'm doing more. My right wrist is deformed and so eroded, that I can't bend that much at all, so I just try to avoid moving it so much. It doesn't hurt anymore with it being idle! My feet are the very worst though. I try to limit my walking, but it's hard. I'm 57 and appreciate this drug very much!"

9 / 10
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49 Report
  • Kev...
  • May 5, 2017

"My experiences have been very good with Xeljanz. Before that, I could barely move, I could barely walk down the stairs. It was horrible, my husband had to pull me out of bed. Now I'm able to function today, but if I do overdo it, I start getting sore. I've been on it for 2 years. I have no bad side effects."

10 / 10
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47 Report

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Reviews may be edited to correct grammar/spelling or remove inappropriate content. Reviews appearing to come from parties with a vested interest are not published. This information is not intended to endorse any medication and should not replace the expertise and judgment of healthcare professionals.

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