Severe arthritis

Rheumatoid arthritis (RA) is a challenging autoimmune disease. For reasons that remain mysterious, people with RA are the victims of an assault by their own immune system. Bones and joints are especially vulnerable, but the whole body can be affected. Flareups can come and then go without obvious cause. Patients may become desperate for relief but treatment is complicated and expensive. One immune modulating oral medication is tofacitinib (Xeljanz). This drug was first approved for treating RA in 2012. A longer acting version, Xeljanz XR got an FDA green light in 2016. Some have called it a breakthrough for severe arthritis. Others warn about serious Xeljanz XR side effects.

Have You Seen the Xeljanz XR Commercial?

There is a very sophisticated television commercial advertising Xeljanz XR. It starts with a close up of a phonograph needle in a groove of a record. Of course, you have to be over 40 to even know what the device is. The voice-over says:

Needle. Essential for vinyl, but maybe not for people with rheumatoid arthritis. Because there are options. Like an unjection. Xeljanz XR a once daily pill for adults with moderate to severe RA for whom methotrexate did not work well.”

Wait for it…The Xeljanz XR Side Effects!

As with so many prescription drug commercials on TV you have an attractive couple. This one adds a cute kid and an even cuter dog. And of course everyone is having a great time, especially when the announcer starts to share the side effects:

Xeljanz XR can lower your ability to fight infection, including tuberculosis. Serious, sometimes fatal infections, lymphoma and other cancers have happened. Don’t start Xeljanz XR if you have an infection. Tears in the stomach or intestines, low blood cell count and higher liver tests and higher cholesterol levels have happened…”

The announcer tells the viewer that her doctor should perform liver and other blood tests during treatment and warns about fungal infections. People are supposed to tell their physician if they are “prone to infections.” While the scary side effects about infections and cancer are mentioned, the people in the video are smiling, dancing and enjoying the old-fashioned vinyl record player.

How Does Xeljanz Work?

This drug is called a JAK inhibitor. JAK is short for janus kinase, an enzyme involved in the inflammatory process. The TV commercial is right about the “unjection” appeal of Xeljanz. “Biologics” for RA such as adalimumab (Humira), etanercept (Enbrel), golimumab (Simponi) and infliximab (Remicade) are injected. These TNF (tissue necrosis factor) blockers also affect the immune system. Like the JAK inhibitor Xeljanz, the TNF blockers reduce inflammation in the joints.

Xeljanz XR Side Effects:

Powerful immune modulating drugs like Xeljanz work by targeting proteins within the immune system. When you mess with mother nature, there are bound to be consequences. The body may not be able to resist infections the way it normally does. People with latent hepatitis B or tuberculosis may experience a reactivation of the infection.

The Food and Drug Administration requires a special black box warning in the prescribing information for Xeljanz XR:

WARNING: SERIOUS INFECTIONS AND MALIGNANCY

SERIOUS INFECTIONS

“Patients treated with XELJANZ/XELJANZ XR are at increased risk for developing serious infections that may lead to hospitalization or death. Most patients who developed these infections were taking concomitant immunosuppressants such as methotrexate or corticosteroids.

“If a serious infection develops, interrupt XELJANZ/XELJANZ XR until the infection is controlled.
Reported infections include:

“Active tuberculosis, which may present with pulmonary or extrapulmonary disease. Patients should be tested for latent tuberculosis before XELJANZ/XELJANZ XR use and during therapy. Treatment for latent infection should be initiated prior to XELJANZ/XELJANZ XR use.
Invasive fungal infections, including cryptococcosis and pneumocystosis. Patients with invasive fungal infections may present with disseminated, rather than localized, disease.
Bacterial, viral, including herpes zoster, and other infections due to opportunistic pathogens.

“The risks and benefits of treatment with XELJANZ/XELJANZ XR should be carefully considered prior to initiating therapy in patients with chronic or recurrent infection.

“Patients should be closely monitored for the development of signs and symptoms of infection during and after treatment with XELJANZ/XELJANZ XR, including the possible development of tuberculosis in patients who tested negative for latent tuberculosis infection prior to initiating therapy.

MALIGNANCIES

“Lymphoma and other malignancies have been observed in patients treated with XELJANZ. Epstein Barr Virus-associated post-transplant lymphoproliferative disorder has been observed at an increased rate in renal transplant patients treated with XELJANZ and concomitant immunosuppressive medications”

Other Xeljanz XR Side Effects:

  • Upper respiratory tract infections, nasal congestion, sore throat, colds, sinus infections
  • Urinary tract infections
  • Blood disorders
  • Headache, insomnia
  • Elevated liver enzymes
  • Digestive upset, diarrhea, tears or perforations of the stomach or intestinal tract
  • Signs of kidney damage
  • Lung disease
  • Increases in LDL cholesterol levels
  • Skin cancer (non melanoma)

One Big Drawback of Xeljanz XR: Price!

The last time we checked, the cost of a month’s supply of Xeljanz XR was well over $4,000. We suspect that some insurance companies are not thrilled when a doctor writes a prescription for this medication. They may even reject payment altogether. Although the original Xeljanz is substantially less expensive from Canadian online pharmacies, a month’s supply is still around $2,000. That is beyond the reach of many patients with RA.

One Person’s Experience with Immune Modulators:

Laurel could not tolerate biologics:

I have Rheumatoid Arthritis and have been on many RA (meds) throughout the years. I have developed allergies to all aspirin products and the so called miracle biologics like Embrel, Humira and now Xeljanz with horrible side effects. I’m 63 years old and when I have a flare-up the only thing I can take are pain pills. Why are we being punished for what a few people do? I’m tired of the Govt. having a say in what I can or cannot take to lessen my pain. God forbid they ever get a debilitating disease!”

Share your experience with Xeljanz XR, both positive or negative. Other visitors to this web site would like to know how you have fared on this drug. Did your insurance company pay for it?

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  1. Cindy
    CA
    Reply

    I have just stopped taking as well. I got headaches, joint pain, nauseated and at time threw up. Stomach pains and diarrhea. I had shortn of breath and hoarseness as well as I broke out on my face and back. And of course extreme insomnia! Recently I got extreme joint pain where I couldn’t lift my entire right leg or toes. I took any pain meds I could try and stop pain and the next day had a fever of 103.5 that I couldn’t get down. I got all this side effects around 3-4 weeks after starting xelganz xr. I was scared. Now hoping side effects stop very soon.

  2. Bettie
    Maryland
    Reply

    I was diagnosed with RA in September of 2011 when I was 66 years old, I have always been very healthy and was shocked to have this disease. I was in pain, and my ortho doctor, who discovered I had RA through a blood test, put me on a pack of steroids. I found an RA doctor out of state since where I live only had had one, and there was a six-month waiting list. The doctor’s office lost my chart, and I waited two months for an appointment. I finally was seen in November and was told I had to get a flu shot and a shingles vaccine before I could get on any medication. I finally got everything I needed and was put on Methotrexate in January. It took a month for it to work and, and it stopped working in three months. I was put on Embrel, and it also stopped working in three months. I was miserable with pain for several months and was put on Humira. Humira worked great for a year. In 2013 I had to have one of my knees replaced and had to go off of the Humira for two weeks before and two weeks after the surgery. I had both my knees replaced in 3 1/2 months, and Humira never worked again. I was on steroids for nine months, and I am now diabetic.

    I was put on Xeljanz in May of 2014, and it has worked great since. It is like I don’t have RA at all unless I get an occasional flare, I am praying it continues to work for me. It is very expensive, but my insurance covers it, and I also have a co-pay card.

  3. Caro
    N.C.
    Reply

    I so agree with Laurel. Why should everyone be punished when the only pain meds That help are so mis-used. I have RA and take infusions of Orencia. Right now it is working for me but when I have a flare the only thing I can take is Tylenol arthritis. I have Afib and take a blood thinner, so ibuprofen is not an option.

  4. Merrilyn
    SC
    Reply

    I was on the original drug study for Xeljanz starting around 2007. It was apparently effective for me. I kept wondering if it was working but apparently I would have been a lot worse off without it. I take the 5mg twice a day, not the XR. I also have lupus and take the minimum dose of methotrexate. I have been fortunate so far, and Phizer has kindly enrolled me in their hardship program, since it would cost over twice my monthly income.

  5. Deloris
    Reply

    I was diagnosed with RA over 3 years ago. None of the disease-modifying drugs and biologics that I’ve tried have offered my any relief. I have only one option left and that’s Xeljanz. The side effects listed above are similar to almost all the other RA drugs, so I don’t find them that scary. As far as price is concerned, I didn’t pay much for the brand-name biologics I’ve tried. Between my health insurance, the co-pay plans offered by the drug manufacturers, and the efforts of my rheumatologist’s staffers, I never paid much, if at all. I’m hopeful that this will be the same for Xeljanz. I was recently diagnosed with chronic inflammatory demyelinating polyneuropathy (CIDP) and will soon start plasma exchange treatments for it. If they’re effective in keeping my destructive anti-bodies in check, I may not need Xeljanz after all.

  6. Barbara
    Albany, NY
    Reply

    My aunt died from complications of RA meds. So did Glen Frey. I got pneumonia from taking Methotrexate. We can do better!! More research and development into a better class of drugs and pain medicines.

  7. Dot
    Seattle WA
    Reply

    Happy, smiling, dancing people in the big pharma ads today remind me of the happy, smiling, dancing people in the cigarette ads of the 50’s/60’s.

  8. Cheryl
    Granite City IL
    Reply

    Anyone have experience with low dose naltrexone for RA?
    A friend with MS has suggested it. I would like to wean myself off Humira and find a low cost soltion.

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