Understanding Crohn's and Colitis
Ulcerative Colitis
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Last reviewed: October 2019
This information is for you if you’re considering or have been prescribed treatment with tofacitinib (Xeljanz) for Ulcerative Colitis. It looks at:
• what you can expect from treatment
• how the medicine works
• possible side effects
• stopping or changing treatment.
Our information can support you to make an informed decision about treatment that’s right for you.
Choosing between tofacitinib, biologic medicines and surgery can be a big decision. Talk to your doctor about the possible advantages and disadvantages of all the options.
I had multiple failed attempts at other medications and was beginning to lose hope. Then I was on tofacitinib successfully for two and a half years. My energy came back and I was able to do so much more with my life.
Lottie
Living with Ulcerative Colitis
The aim of treatment with tofacitinib is to:
Although tofacitinib doesn’t work for everyone, several large studies have shown that it can be effective in bringing about and maintaining remission in people with Ulcerative Colitis when other drugs haven’t been helpful.
Two large studies found that eight weeks after starting treatment with tofacitinib around 3 out of 10 people noticed a positive difference and over half of those people were in remission.
The people who found tofacitinib was effective continued to be monitored for a further year, and at the end of that time 4 out of 10 people were still in remission. Although this is a new treatment for people with Ulcerative Colitis, tofacitinib has been used as a treatment for people with some types of arthritis for a few years.
Tofacitinib is a small molecule drug, which means that it’s less likely to stop working over time than biologic medicines such as infliximab, adalimumab, golimumab or vedolizumab. Biologics are larger molecules that the immune system sometimes recognises as a foreign substance and thinks is harmful. It then produces proteins called antibodies to the biologic medicine and these prevent it from working as well.
If your condition hasn’t changed after the first eight weeks, your IBD team may decide to continue with the medication for a further eight weeks. But if treatment hasn’t worked for you after this time (16 weeks in total), it should be stopped as it’s not the right treatment for you. Your IBD team will talk to you about the other options available.
Try to take your tablets at a similar time every day. You can take it with or without food, and if you have difficulty swallowing the tablet, it can be crushed and taken with water.
Tofacitinib is great as it is just a pill and can be taken in the comfort of your own home. Other drugs I tried meant going into hospital to have infusions. I’ve been in remission on tofacitinib for three years now.
Shirley
Living with Ulcerative Colitis
If your Ulcerative Colitis flares whilst on 5mg twice a day, your dose can be increased back to 10mg twice a day to try to reduce the inflammation and symptoms. However there is a higher risk of side effects on the 10mg dose.
If you’re taking mesalazine you can stay on this whilst taking tofacitinib.
But you shouldn’t be prescribed tofacitinib with a biologic medicine such as infliximab, adalimumab, golimumab, vedolizumab or immunosuppressants such as azathioprine, methotrexate or mercaptopurine. If you are taking any of these medications, it is important that you stop them before starting tofacitinib.
Medicines that contain any of the following may also affect how the tofacitinib works:
This isn’t a full list so talk to your IBD team or pharmacist before you take any other medicines.
Tofacitinib acts on the immune system and can make you more susceptible to infections. To reduce this risk, you should have all the vaccinations you need before you start treatment.
If these are “live” vaccines such as the varicella zoster vaccination for shingles, you’ll need to have this at least two weeks and ideally four weeks before you start the tofacitinib.
Tuberculosis. If you have any history of tuberculosis (TB) or any recent exposure to people with TB. You should not be given tofacitinib if you have active TB, and if you have underlying, inactive TB, this will need to be treated before you start therapy. Most doctors now use a blood test to check for underlying or inactive TB, but you may be given a chest x-ray as well.
Infections. If you have a history of infections or currently have an infection, such as tonsillitis or a urinary tract infection, or have symptoms such as feeling feverish or generally unwell. Your tofacitinib treatment may need to be postponed until the any infection has cleared. This is because taking tofacitinib could make the infection worse.
Heart problems. If you have heart problems such as congestive heart failure, ischemic heart disease or a history of fainting, tofacitinib may make your symptoms worse.
Blood clots. Tofacitinib may increase the risk of blood clots in the legs (deep vein thrombosis) or lungs (pulmonary embolism). If you have a history of previous blood clots this medication is not right for you and you will not be offered this.
Cancer. If you have already had cancer you may have a slightly increased risk of developing some types of cancer including lymphoma and some types of skin cancer. This is because tofacitinib affects the way your immune system works.
Liver problems. If you’ve previously had hepatitis you may need regular checks for this as tofacitinib may increase the risk of you having hepatitis again.
Your doctor will give you a Patient Alert Card which contains important information about what to look out for.
To reduce risks:
Some of the most common side effects are mentioned below. You can find a full list in the Patient Information Leaflet (PIL) that comes with your medicine or at www.medicines.org.uk.
Any medication can cause an allergic reaction. Tell your doctor immediately if you develop any of the following symptoms:
The most common side effects that people experience when are taking tofacitinib are headache, runny or stuffy nose and slight swelling at the back of the throat (nasopharyngitis), feeling sick (nausea) and joint pain (arthralgia).
Because tofacitinib acts on the immune system it can have some serious side effects. Your IBD team will continue to monitor you to minimise risks but let them know if you:
There is an increased risk of shingles (herpes zoster reactivation). If you develop blister like skin eruptions, you should stop the medication immediately and contact your IBD team. You can normally restart the drug once the rash has healed.
Tofacitinib may increase the risk of blood clots in your legs (deep vein thrombosis) or lungs (pulmonary embolism). Seek urgent medical care if you develop swelling of your legs or arms with reddened and swollen skin. Or breathlessness, chest or back pain whilst you’re on this medication.
Tofacitinib may raise levels of blood cholesterol in some people. Your IBD team will monitor this with regular blood tests.
If you are worried about any new or ongoing symptoms talk to your IBD team.
Live vaccines include polio, yellow fever, rubella (German measles), BCG (tuberculosis), MMR (measles, mumps and rubella) and Zostavax (shingles). However, you may be able to have the inactivated polio vaccine. If anyone in your family or household is due to have a live vaccine, check with your IBD team whether you need to take any special precautions.
Tell your IBD team immediately. There are reports of some women who have become pregnant while taking tofacitinib, mostly in early pregnancy. In these women there wasn’t any increase in miscarriage or birth defects in the baby.
We don’t know yet if tofacitinib affects fertility in men or women. If you’re planning to get pregnant tell your IBD team as you will need to stop taking tofacitinib.
It’s not yet known whether tofacitinib is present in breast milk so as a precaution you should avoid breastfeeding.
If side effects are serious or difficult to manage, your IBD team will talk to you about your options.
Your IBD team should give you clear information, talk with you about your options and listen carefully to your views and any worries or concerns you may have. The choice of treatment between tofacitinib, biological drugs and surgery should be made after talking with your IBD team about the possible advantages and disadvantages of all the options. You can also talk to the Crohn’s & Colitis UK Helpline.
• Living With Crohn's or Colitis
• Fatigue
• Taking Medicines
• Managing Bowel Incontinence
• Living With a Stoma
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