low lymphocyte count

[newbie but goodie]

Hi everyone. I recently figured out how to interpret my lab report from a recent CBC and I was more than a little startled. My lymphocyte count seems to be around 300 which according to my amateur research is very low. My neuro should have received this lab work and never contacted me with concerns. Shouldn't I be worried about a lymph count that low??

Anyone else here have experience with CBC and crazy low lymphocyte counts? I know a decrease is to be expected but I didn't realize it would go this low.

[Torn]

Most docs say 200 is when you have to stop dmd temporarily to see if it comes back up. Many choose a smaller dose when you continue. I have low lymph count as well and they are watching carefully. Is your % low too? Mine was at 17%. Which is pretty low. I'm waiting to hear back from nuero about recent labs. What dmd are you on?

[Kimba22]

Hi newbie but goodie,

Definitely contact your neuro. You want to be certain your neuro has both received and reviewed your blood work. I had a problem once with my MS Specialist receiving my bloodwork while I was on Gilenya. I ended up with a very serious infection and complications before I could get this straightened out.

Your neuro will have his/her own cut-off of what he/she considers too low. I would ask what that is. Information I wish I'd known when I ended up under the care of different doctors when I had to be hospitalized at a different hospital. They were keeping me on the drug when my MS Specialist would have pulled me off.

Best wishes,

[newbie but goodie]

torn: I am on Gilenya. Not sure about the % but I know it was low as well.

Kimba- I took your advice and contacted my neuro to see what his deal breaker count was. He was able to tell me the # that would get me taken off G and the # that would make him want to monitor me more often/closely. I am just hovering above that point now so fingers crossed!

A kind of side note here- my PCP now has my personal health record online so I can access my labs, MRIs, and any report or documentation any time, any where. So now I can just peek in to see how I am doing and pass the word along wherever it needs to go. So awesome.

[Kimba22]

torn: I am on Gilenya. Not sure about the % but I know it was low as well.

Kimba- I took your advice and contacted my neuro to see what his deal breaker count was. He was able to tell me the # that would get me taken off G and the # that would make him want to monitor me more often/closely. I am just hovering above that point now so fingers crossed!

A kind of side note here- my PCP now has my personal health record online so I can access my labs, MRIs, and any report or documentation any time, any where. So now I can just peek in to see how I am doing and pass the word along wherever it needs to go. So awesome.

Good to hear you found out the info from your neuro!

And that really is awesome you can access your own records on-line! That would make life so much easier! I'll be anxiously awaiting the same.

Best wishes

[TryingNow]

low WBC count no surgery !

I am new to this whole "talk about your MS" but not new to MS (24 years of relapsing remitting moving into 2nd progressive)I have done nothing, taken Avonex, Copaxone and now have been on Gilenya for about 2 1/2 years!

Sooo, I thought I was doing well on Gilenya until my recent WBC count came back at 2.9!! I was schedule for some out patient surgery and was told NO SURGERY!!

I just moved to a new city, my neurologist is (of course) is on a 3 week vacation (wish i was!) and now I am mad and confused what to do?

Does anyone take Gilenya every other day to raise their WBC counts and lymphocytes? Any other ideas? I would still like to have my surgery!

[Kimba22]

Does anyone take Gilenya every other day to raise their WBC counts and lymphocytes? Any other ideas? I would still like to have my surgery!

I recall another poster who did after hers got too low. This still may take longer than you want, so depends how fast you were hoping to have your surgery. Otherwise, you might have to discontinue therapy and then restart it again under the supervision of your new neuro.

Good luck!

[junckman]

The gold standard on CD4 counts probably lies with people that are HIV -positive. Below 200 for these folks means Aids and most start getting anti-virus meds when counts fall below 350. My neuro consulted with Novartis neuros when my counts fell below 350. Presently, we are carefully watching my counts since they are staying constant after the drop. The good news with G is that counts go up after G is discountinued, however, this still doesn't immediately help with getting over opportunistic infections.

[newbie but goodie]

I have heard of people going every other day to raise lymph counts. It's quite the little dance we do, isn't it? Low lymphs have me feeling great but at risk for infection. High lymphs have me "healthy" but feeling like garbage. Oy.

[Temagami]

I am taking it on odd numbered days. Mine has dropped to the 200 zone and I´m still on it. Kind of wondering what taking it every third day would do for me. Hey, my drug costs have dropped by 50%

This PML case scares me as I am JVC+.

[Temagami]

Spoke with neuro, told him my anxiety was high regarding gilenya and PML- we´re going to see what taking it every third day does with a new blood panel in mid-October.
Lympho count has been 198, 218, 333, 240 It is the drop back towards 200 that has me worried. Also, discovered that body weight is now tied to dosage for Tysabri and am wondering it they will also discover that for Gilenya- I´m a lightweight and below 60kg was correlated with a higher PML risk if taking Tysabri. My anxiety was high enough that I´m willing to take the risk of every third day instead of being on high alert. I´ll post the result in October.

[Temagami]

Got the results- so, altering to every third day only increased the absolute lymphocytes to 257 from 240 a month prior. This drug has quite the kick. Neuro left VM saying to stay the course, but that we´d discuss new meds at next visit as at this rate I´d need a blood test every month to keep an eye on the WBCs. I don´t see better options for me, so in order to preserve brain fx, I think I´d be willing to go to the vampire once a month.

[newbie but goodie]

Wow, thats not a big change . Hopefully the g is doing you some good to make it worth it? I would def do blood once a month to avoid shots.

[Kimba22]

Got the results- so, altering to every third day only increased the absolute lymphocytes to 257 from 240 a month prior. This drug has quite the kick. Neuro left VM saying to stay the course, but that we´d discuss new meds at next visit as at this rate I´d need a blood test every month to keep an eye on the WBCs. I don´t see better options for me, so in order to preserve brain fx, I think I´d be willing to go to the vampire once a month.

Sorry to hear this new schedule didn't increase your count more. There have been other posters who were pulled off for a few weeks, then when their lymphocyte count went back up, restarted Gilenya. It can challenge your mental psyche to constantly worry about this.

I had a UTI that went septic within 48 hours, and that very quickly turned into endocarditis. 6 weeks of 2 different IV antibiotics around the clock was no fun (besides the fact it threw me into a bad relapse).

I "liked" taking Gilenya. It was better than the shots or going for an infusion. I even started lifting my bad leg better. This made it easy to "forget" the possible side effects of the drug. But, the whole ordeal had negative ramifications for both my health and disease progression.

As far as going on Ty, even though you are JCV+, I'm not sure if you were aware there's now a JCV blood titer test that helps determine your risk profile for PML.

Good luck & let us know what you decide.

[Temagami]

update: staying on every third day dose with monthly WBC panel hoping to transition to every other month panel. And so it goes.