Low T cells

[nursebarb427]

I was sent to an immunologist due to low immune response.  He found my T cells were 22 (normal 1000-3000).  I called my neurologist and he said its OK to stay on gilenya, but I'm scared to leave the house for fear of picking up some illness.  Has anyone else experienced T cells this low?  ZIf so, did they come back up without stopping the gilenya?

[Sarahsmom46]

I have been on gilenya for almost a year now and have low lymphocyte counts too.  I was in the hospitlal this past October and while there had a consult with the hematologist. He told me that it is the neutrophils that are of concern more so than lymphocytes.  With gilenya, low lymphocytes is an expected side effect of the drug.

Was the number of 22 the absolute lymphocyte count?  If your absolute lymph count is less than 200 then your neuro is supposed to take you off the medication for safety reasons.  Check with your PCP and have him/her explain this result.

I have not had any really serious infections since being on gilenya, but I do make sure I keep my hands washed and avoid touching my face.  You shouldn't get sicker any more than anyone else not taking this drug.  With that said, you must let your doctor know if you get a fever or other sign of infection. You may not get sick any easier but when you get sick it can get back quickly if you don't take care of it.

I hope this was helpful.  If you have other questions, feel free to ask.

Julie

[summerluvr]

I have bone marrow issues too but I've had a stem cell transpant (not ms but for Multiple Myeloma).  When I had low white counts I was treated with growth factors- Nupegon shots, and it brought the levels up. Also make sure you keep the handwashing up! and agree take some extra precations like avoid crowded places, and make sure well meaning friends know to keep away if they are sick a cold for them could be pneumonia for you

[teenyturner]

Hi,  t cells are lymphocytes aren't they? I think it's neutrophils being low that you have to worry about more than lymphocytes but as I'm not a doc , dont take my word for it.

I have bone marrow failure and my lymphocytes are always well below normal and neutrophils are sometimes 0 but I haven't had an infection yet and I don't take any particular precautions.  I just don't take silly risks , like babysitting sick children etc.

Hope it all works out for you.

Regards

[Lulu54]

I can't answer that question and we only have a few Gilenya users here.  Weekends are also very quiet around here so it may be Monday before you get an answer from someone who knows Gilenya.  

It sure makes sense why you are so concerned about the germs. That is a crazy, low number
Welcome to the forum.