Rit­ux­imab for Neu­ro­log­i­cal Dis­or­ders (2013)

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What is rituximab?

Rit­ux­imab is a new drug that removes cer­tain cells, called B-​cells, from your body. In healthy peo­ple, B-​cells make anti­bod­ies that help fight off germs and viruses. How­ever, in peo­ple with cer­tain neu­ro­log­i­cal dis­eases, the B-​cells become con­fused and start pro­duc­ing harm­ful sub­stances called autoan­ti­bod­ies instead which start to attak your own healthy cells.

How does rit­ux­imab work?

Rit­ux­imab attaches itself to B-​cells and destroys them. By doing this, it helps to stop your immune sys­tem from pro­duc­ing cells, both the anti­bod­ies and the autoan­ti­bod­ies. This might make it harder for you to fight off infec­tions. Rit­ux­imab will destroy some of your healthy B-​cells, but these will return after a few months.

What should I tell my doc­tor before receiv­ing rituximab?

Tell your doc­tor if you have had any of the following:

  • a severe reac­tion to a rit­ux­imab IV drip in the past
  • a his­tory of heart prob­lems, irreg­u­lar heart beat or chest pain
  • lung or kid­ney problems
  • an infec­tion or weak­ened immune system
  • any severe infec­tions, including:
    • Hepati­tis B virus (HBV)
    • Hepati­tis C virus (HCV)
    • Cytomegalovirus (CMV)
    • Her­pes sim­plex virus (HSV)
    • Par­vovirus B19
    • Vari­cella zoster virus (chick­en­pox or shingles)
    • West Nile virus
  • a recent vac­ci­na­tion or if you are going to receive vaccinations
  • if you are preg­nant or plan­ning to become pregnant

When do I take rituximab?

Usu­ally, you will start off with 2 doses of rit­ux­imab, with a 2 week break in between. You might get another dose 6 to 9 months later if your con­di­tion doesn’t seem to get bet­ter. Your neu­rol­o­gist will depend on you, to some extent, to say when you are hav­ing trou­ble again. You should dis­cuss this in advance with your neurologist

How do I take rituximab?

Rit­ux­imab is given by intra­venous infu­sion (IV drip) in a hos­pi­tal clinic. A nee­dle will be put into a vein in your hand or arm to give you the drug. Half an hour before you start your IV drip, you will be given Tylenol so you don’t get a fever, Benadryl, an anti-​allergy med­i­cine, and Solu-​medrol which is a med­i­cine that reduces your immune response. These drugs help pre­vent any reac­tions you might have to rituximab.

You should plan to stay at the clinic for 68 hours.

Because some of the drugs you will be given can make you dizzy or sleepy, you should arrange for some­one else to drive you home after each treatment.

When you are receiv­ing rit­ux­imab treat­ments, you should carry infor­ma­tion about the treat­ment you received with you. This is because if you get sick, the peo­ple treat­ing you will know that you have received rit­ux­imab and that your B-​cell count may be low. You can get the infor­ma­tion you need to carry from your doc­tor or nurse.

How long will rit­ux­imab take to work?

It takes a few weeks to see improve­ments after your treat­ment with rit­ux­imab. It is usu­ally clear by three months whether or not rit­ux­imab will help you.

What are other things your doc­tor needs to know while you’re on rituximab?

Your doc­tor needs to know if you:

  • have a fever
  • are sched­uled for surgery
  • are plan­ning to be vaccinated
  • have or think you have an infection
  • think you are pregnant

You might get infec­tions more often after the treat­ment because your immune sys­tem will be low. If you have a fever or any other symp­tom of infec­tion, you should call your neu­rol­o­gist, fam­ily doc­tor or nurse.

After 3 doses of rit­ux­imab, you might have fewer healthy B-​cells as well as unhealthy ones. Since the healthy B-​cells help fight infec­tion, your risk of infec­tion might be higher.

If you develop any other new symp­toms after start­ing rit­ux­imab, see your neu­rol­o­gist as soon as pos­si­ble. If any of these symp­toms are severe, see a doc­tor imme­di­ately. If you can’t see your neu­rol­o­gist, go to the emer­gency room at the clos­est hos­pi­tal to you.

What are the pos­si­ble side effects dur­ing the IV drip?

The most com­mon side effects of rit­ux­imab treat­ments are reac­tions to the IV drip. These are most likely to occur dur­ing the first IV drip. Most of these reac­tions are not severe and include:

  • fever
  • wheez­ing
  • rash
  • itch­ing
  • swelling of your lips, tongue, throat or face
  • sud­den cough
  • feel­ing of your heart rac­ing or fluttering
  • chest pain
  • a drop in blood pressure

If you develop any symp­toms dur­ing the IV drip, you should tell the per­son giv­ing you the treat­ment right away, because they might have to slow down the IV drip. Very rarely, reac­tions are severe enough to stop the treatment.

What are the side effects I may expe­ri­ence at home?

The more com­mon side effects you might have are:

  • abdom­i­nal pain, nau­sea and diarrhea
  • sore mus­cles or joints
  • rash, hives or itchiness
  • headaches, dizzi­ness or tingling
  • sore throat, fever, chills & gen­eral weakness
  • increase in blood pressure

You could have the more seri­ous side effects of severe skin and mouth reac­tions. These are:

  • painful sores on your skin, lips or in your mouth
  • blis­ters
  • peel­ing skin
  • rash or other skin lesions

Tell your doc­tor or get med­ical help right away if you get any of these symp­toms at any­time dur­ing your treat­ment with rituximab.

Rarely, rit­ux­imab can cause seri­ous and life-​threatening side effects.

If you have had Hepati­tis B in the past, rit­ux­imab can cause the virus to become active again. This can cause seri­ous liver prob­lems. Watch out for:

  • stom­ach and abdom­i­nal pain that doesn’t go away
  • extreme tired­ness
  • your urine becomes dark and your skin and eyes become yellow

Another side effect can be heart prob­lems. Watch out for:

  • irreg­u­lar or fast heart beats
  • chest pain
  • You might develop kid­ney prob­lems that make it harder for your body to make urine.

    You could have stom­ach and seri­ous bowel prob­lems includ­ing block­age or tears in your bowel.

    Rit­ux­imab can cause changes in your blood. You may have a drop in the num­bers of:

    • white blood cells that fight against infections
    • red blood cells that carry oxy­gen to your body tis­sues and organs
    • platelets that help your blood to clot

    You could pos­si­bly develop Pro­gres­sive Mul­ti­fo­cal Leukoen­cephalopa­thy (PML). This is a seri­ous brain infec­tion caused by a virus. This is a very rare side effect but peo­ple with a weak­ened immune sys­tem can get PML. PML can result in death or severe dis­abil­ity. There is no known treat­ment, pre­ven­tion, or cure for PML.

    Tell your doc­tor right away if you have any of the fol­low­ing symp­toms or if any­one close to you notices that:

    • you are con­fused or are hav­ing prob­lems thinking
    • you have been los­ing your balance
    • there is a change in the way you walk or talk
    • you have less strength or weak­ness on one side of your body
    • you have blurred vision or loss of vision

    Your doc­tor pre­scribed you rit­ux­imab because he or she has judged that the ben­e­fit to you is greater than the risk of side effects. Most peo­ple using this med­ica­tion do not have seri­ous side effects.

    Do I need spe­cial tests while on rituximab?

    You should have blood tests before you begin your treat­ment and every few months after that.

    The pre-​screening tests we’ve asked you to do help us iden­tify and reduce poten­tial risks.

    Can I have vac­ci­na­tions after a treat­ment with rituximab?

    Dis­cuss all vac­ci­na­tions with your doc­tor. Usu­ally, you will need to wait 4 weeks after your treat­ment to get vac­ci­nated. If you need any vac­ci­na­tions, you should get them before you start Rit­ux­imab or between doses. Talk to your neu­rol­o­gist about this.

    Some vac­cines are called “live” vac­cines. Usu­ally you would be asked not to get vac­cines of this kind while you are being treated with rit­ux­imab. How­ever, some­times you may need to have a live vac­cine. For exam­ple, you may need a rubella (Ger­man measles) vac­cine if you are a woman of child­bear­ing age. Your doc­tor will dis­cuss the pos­si­ble risks and ben­e­fits with you.

    Pneu­movax (a vac­cine that is given to pro­tect you against pneu­mo­nia) and yearly flu vac­cines are safe, but you should ask your neu­rol­o­gist if you should have them.

    Does rit­ux­imab affect pregnancy?

    We don’t know yet if rit­ux­imab will hurt your baby if you become preg­nant soon after tak­ing this drug. The maker of the drug sug­gests that you do not get preg­nant for 12 months after your treat­ment. You should take care not to become preg­nant after treat­ment with rit­ux­imab unless you have dis­cussed this in detail with your doc­tor. You should not take rit­ux­imab dur­ing pregnancy.

    What about men tak­ing rit­ux­imab and pregnancy?

    Please use con­tra­cep­tion dur­ing your period of treat­ment and for 12 months after to pre­vent your part­ner from becom­ing pregnant.

    What about breastfeeding?

    Rit­ux­imab enters your breast milk and may affect your baby’s B-​cells. You should not take rit­ux­imab if you are breast­feed­ing. You should not breast­feed for 12 months after a dose of rituximab.

    When may I return to my usual activities?

    You may return to your usual activ­i­ties once you are at home

    Can I travel?

    Ask your neu­rol­o­gist if you can travel. Your neu­rol­o­gist can judge if you are well enough to go elsewhere.

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