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Gilenya For discussing the first oral disease modyfying drug, Gilenya.

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  #1  
Old 05-20-2011, 01:29 PM
krmercer krmercer is offline
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Low White Count

Have any of you been told by your doctors that you have a low white blood cell count. When I spoke to Novartis they said that was normal. The Lymphocytes should be decreasing. My question is....How low is too low? I've fought off 4 UTI's in the past 8 weeks and I haven't had one in 8 years. My doctor was concerned and repeated and it came up slightly, but is still low. I'm very tired, so I am concerned it is due to the low count. Is anyone else experiencing the same issue?
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Old 05-20-2011, 05:51 PM
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kbloom2 kbloom2 is offline
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Hello Krmercer, I have low white blood cell count as well. The norm is to be above 100 and mine go up and down right now they are at 24 not good. my Dr says you body is like a blue print if say you were on chemo and you stopped it for a long time you counts are great and just recently you start up it up again, your body remembers and they go back down.
I had taken chemo for my Ms for 4yrs and I had stopped, but just last yr I was given RITUXIN and my body remembered and now it just a waiting game for my counts to go back up
Hope the info is helpful and I didn't confuse you
Kari
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  #3  
Old 05-20-2011, 06:24 PM
Redwings Redwings is offline
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Yes, I've had a low white count that was due to a different medication.

How low is too low is relative to the person and the situation, depending on benefit vs. risk. In addition to that, different doctors have different opinions, depending on their specialty and training. For example, rheumatologists routinely [I]intentionally[/I] immunosuppress their patients because the benefit of doing so is worth the risk. Neurologists don't as often deal with those same situations and find the same level of immunosuppression to be an unacceptable risk for the conditions they treat. The labeling for the use of certain medications in the treatment of MS tends to caution [I]against[/I] immunosuppression because the risk may be higher than the benefit. In comparison to what's needed for their patients, that kind of caution looks wimpy to rheumatologists.

We're in the era now of newer, more effective medications for MS that are entering the realm of immunosuppression. So what's conventionally looked at as a low white count for a healthy patient, or even an MS patient based on past treatment options, now is becoming a "necessary evil" as a trade-off for the benefits the meds deliver. That explains how a low white count can be "normal" for someone on Gilenya. The low white count is an accepted -- even intended -- outcome for the trade-off of disease control. You and your doctor will have to look at the expected -- and intended -- action of Gilenya and -- based on benefit vs. risk -- determine how low is too low for [I]you[/I]. If your doctor isn't used to working with immunosuppression or meds like Gilenya, s/he might be alarmed by a white count that's completely routine (ho-hum) to a different doctor/specialist.

When looked at relatively, a white count of zero or near zero [I]is[/I] too low for most conditions, particularly a disease like MS that's rarely fatal on its own. In a disease like lupus -- which is more often fatal -- a low or very low white count might be an acceptable risk.

When my white count dropped, one of my doctors wasn't concerned, another was. Interestingly, the one who wasn't concerned was one who doesn't routinely prescribe immunosuppressants and hadn't prescribed mine. The doctor who [I]was[/I] concerned was the one who [I]does[/I] prescribe immunosuppressants (prescribed mine) and had a much better idea of how low was too low based on risk vs. benefit for [I]me[/I].

So how low is too low? It depends.
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Old 05-21-2011, 08:57 PM
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Tom Lewandowski Tom Lewandowski is offline
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Quote:
Originally Posted by kbloom2 View Post
[FONT="Comic Sans MS"][SIZE="4"][COLOR="Navy"][B]Hello Krmercer, I have low white blood cell count as well. The norm is to be above 100 and mine go up and down right now they are at 24
Actually, an "average" WBC range should be ~4,800 to 10,500 /mm3. This will vary slightly depending on patient population in your area.

We see chemo patients with WBC counts as low as 100 (0.1), but this is rare. Since starting Rebif, my WBC has gone from my norm of about 8,000, to about 2,500. That's low, but still adequate to function in fighting off infection. Since I work in a medical lab and am able to check my Complete Blood Count whenever I want, I normally keep an eye on the WBC, hemoglobin, hematocrit, and Red Blood Cell counts. They are all on the low side for a male, but not critically low. Gilenya, from what I understand, has basically the same effect on one's blood cells.
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Old 05-22-2011, 11:12 AM
Just a small town girl Just a small town girl is offline
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There are a ton of different ways of writing the lymphocyte counts so I've included two of the forms I've seen below. From what I've seen most neuros differ on what they think is too low.

For my neuro 200 or 2 is the cut-off. If you're above 200 lymphocytes you're good, if you're below then yank off gilenya until the body restabilizes. I've had a couple incidents where my bloodwork got down to 200 and 300. The first time I got yanked off and the second time my body stabilized on its own. I'm now at a "healthy" 890 or 8.9.

I hope this helps in any way shape or form.
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Old 05-24-2011, 03:25 PM
laurasari laurasari is online now
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Can someone tell me how often they send you for the blood work. I just started yesterday so i have only had 2 doses.
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Old 05-24-2011, 08:18 PM
Just a small town girl Just a small town girl is offline
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My neuro's schedule is after the first week, then once a month for 3 months, then every 3 months for first 2 years, then every 6 months thereafter.

Of course when I had a few issues, that got modified so I was going in every other week for a while. I'm now back on track with once every 3 months.

Every neuro is different though.
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Old 05-25-2011, 07:39 AM
Just a small town girl Just a small town girl is offline
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Thanks Kimba. I'm glad too. How's everything going with you??
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Old 05-29-2011, 09:03 PM
dolule dolule is offline
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I was in the clinical trial for fingolimod (which is now marketed as Gilenya). Once, when my lymphocytes got down to 0.20 x 10E3/uL (=0.2 x 10,000 = 2000), I was instructed to retest after two weeks and was told that if the count remained that low, I would be taken off the drug temporarily until my lymphocytes recovered. This was per Novartis' instructions.
I had other results between 0.20 and 0.25 and that didn't seem to be a problem.
I haven't heard anything about an increase in urinary tract infections being associated with Gilenya, but sometimes problems show up in post-marketing that didn't show up in the trials. Your doctor may want to contact Novartis Drug Safety and Epidemiology at 1-888-NOW-NOVA (669-6682) or FDA at 1-800-FDA-1088 or www.fda.gov/medwatch.
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Old 06-30-2011, 04:40 AM
dolule dolule is offline
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oops, I messed up my math: 0.2x10E3 = 0.2x1000 = 200, not 2000.
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  #11  
Old 07-24-2011, 10:06 PM
llevey llevey is offline
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low white count

Hello everyone,

I am a serious novice to online discussion forums, but I've been a lurker on and off to this one. I've been on Gilenya since March and doing very well, I think. I had a CBC yesterday, and my leukocytes are down to 2.3; they were 2.8 in April. I don't know what my neuro will say when I see her next month. But I felt tremendously relieved to read the discussion about your experiences and knowledge.

Oddly enough, though, in the 10+ years since my diagnosis, I've never felt better.
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  #12  
Old 07-25-2011, 05:46 AM
Just a small town girl Just a small town girl is offline
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Llevey - I felt the same way in that I would have never known that anything was wrong when my liver enzyme levels went way up and my blood cell counts were off. Ask your neuro about it when you see him or her but in my experience if they're worried about your counts, they will call you to let you know.

Keep us posted on how things go with you. So glad that you've joined us.
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