Drug induced lymphopenia

[fairpace]

After 2 and a half years on Tecfidera, I went off of it in February due to low WBC and abs lymphocyte count that hovered around .5 for months and refused to budge despite a reduced drug regimen.

Fast forward to October, I am still in the low range with a current lab result of .8 (barely normal) that actually dipped to a .7 last lab then came back to .8. My doctor sent me to a hematologist to make sure there are no 'non-Doctor caused (i.e., drug)' factors contributing to my low numbers. Nothing turned up with trip to specialist after bunch of lab work.

Hematologist is going to confere with neurologist regarding starting DMD and preventions due to low numbers. He mentioned the idea of taking a prophylactic antibiotic and an antiviral to prevent opportunist infections if I go on a DMD. He also suggested visiting an infectious-disease specialist as they may have a better perspective on how to prevent infections in this scenario.

I am wondering if my numbers will continue to climb if we are patient. He didn't think they'll recover to my original normal (1.5ish). My neuro is anxious to get me back on DMD, we were planning for Gilenya. She hasn't had any other patients experience this from Tecfidera. Maybe it was my low normal to begin with, or my prolonged suppressed status.

I guess I'm wondering if anyone else has had a long road back to normal lymphopenia status? Maybe it isn't so long (9 months and counting), but feels long to me and seems long by my doctor's actions. And, has anyone taken preventative antibiotics or antiviral for this while on a DMD?

[JerryD]

I have been concerned with this same problem. I had my blood checked, routine CBC, before I started Tec. I found a new neurologist, that is a 'bona fide' MS specialist. He has been tracking my blood levels and he suggested that I consult a hematologist/oncologist, because he explained that my blood count was dropping and it wasn't recovering. The hematologist said that it could be that Tec is causing the low counts. But he said that my levels should recover and I am now in a 'wait and see' posture.
I will be having a CBC test, soon. I hope that the Tec isn't the cause and the doctors can figure out what to do to fix it. Good luck

[rsinger]

low WBC count

Lymphopenia is definitely a concern with Tecfidera and also with Gilenya. I took Gilenya for a few months and my WBC count was dropping. Ended up getting shingles and discontinued Gilenya. Been on Tecfidera for about 1 1/2 years with no change in WBC count. I do have lab work done every 3 months. I am also JC Virus positive.

Just wondering how often you had blood work done and if you are also JC Virus positive. My doctor recommended blood work every 6 months but I am insisting on a 3 month regimen.

Maybe Gilenya would work better for you. Everyone seems to respond differently to these medications.

[jreagan70]

Hi fairpace:

Immunosuppression is a slippery slope for everyone involved. Every choice involves trade-offs, and every choice is individual, even though it's based on medical principles.

Nine months is a long time for white cell levels to remain low IF the suspected medication has been stopped. When my white count was low, I cut back on one of my meds and the level recovered in about three months.

Of course your neuro wants you back on a DMD (most of them are immunosuppressive to some degree now) because she isn't the one who will be caring for you if you develop an infection. And of course the hematologist has suggested a preventive antibiotic and antiviral because he doesn't have to deal with managing the side effects of that, of if you develop an infection with an organism that has developed resistance to the "antis" you'd be taking.

So the trade-off is whether the risks of a low white cell count and the side effects of antibiotic/antiviral drugs are worth the benefit you'll be getting from a DMD. Is the next DMD going to be causing more complications and harm than your MS or a different DMD that won't suppress your white cells so much?

Usually when someone is on preventive "anti" drugs, it's because they can't function well without them. That's the case for some people with, say lupus that's so active that the immune system MUST be suppressed or the person will incur organ damage and die, or someone with recurrent UTIs. They need to be on antibiotics and/or antivirals because their life depends on it. It's not so much the case for a person who's taking a preventive DMD for MS and then wanting to add other preventive meds to help the first preventive med when the preventive meds are currently causing more risk than the MS itself.

So yes, some people with some autoimmune conditions take preventive antibiotics and antivirals, but their cases may be very different from yours, and the hematologist's suggestion might not be appropriate for you. With the exception of Tysabri, the drug that's being taken isn't as important as the white count being allowed to remain low.

Has your MS been so active that allowing your white count to remain low and then trying to artificially get around that with other meds worth the risk/benefit trade-off? When you can answer that, you'll know what to do.

[fairpace]

Thank all for your responses. I must apologize for a dumb error, I wrote that I had been taking Tecfidera for 2.5 years, when I only took the drug for 1 year and 9 months. Math is not my strong point.

Anyways, here we go:

Jerry, I hope your numbers rebound quickly and to a good level. It may have been the Tec, I think you wrote at one point that they thought it was LDN (I've never taken that), when I saw that post my thought was the Tec not the LDN.

rsinger,
Just wondering how often you had blood work done and if you are also JC Virus positive. My doctor recommended blood work every 6 months but I am insisting on a 3 month regimen.

Initially, I had my blood work done at 5 weeks or so, and then again at another 5 to 6 weeks, this was in the beginning. My 1st lymph count wa 1.1, then it dropped to .7 at about the 6 month point. It was a drop that she (my doctor) wasn't concerned about at the time, probably expecting a plateau. After that, I think the labs went to a 6 month schedule. The next result was a .5 count, but nobody was concerned (I didn't know any better.) I think the PML event (in the news) in the fall of 2014 and subsequent change in Tecfidera labeling is what changed her approach toward my labs (this is an assumption, maybe she would have gotten more vigilant regardless). Starting that fall, my labs were every 4 to 6 weeks and have been so ever since. The choice to stay on Tec at that time was collabrative, she was skeptical and ready to switch, I delayed the matter. We compromised on a reduced dose, it made no difference in my labs.
And, yes, I'm also JCV+.

jreagan,

Your posts always make me exercise my mind! Thank you for that! OK:

Nine months is a long time for white cell levels to remain low IF the suspected medication has been stopped. When my white count was low, I cut back on one of my meds and the level recovered in about three months.
This is why she sent me to the Hematologist, she wanted to make sure we weren't chasing the wrong rabbit. Unfortunately, he didn't find anything with the tests that he did. He ordered another CBC and one other lab that he hadn't done previously, I should get the results this week.

So the trade-off is whether the risks of a low white cell count and the side effects of antibiotic/antiviral drugs are worth the benefit you'll be getting from a DMD. Is the next DMD going to be causing more complications and harm than your MS or a different DMD that won't suppress your white cells so much?

I love this quote. Very good food for thought. Honestly, I have no desire to take more pills. I would love to be a fly on the wall for the conversation between my neurologist and hematologist. They're both very bright in their own fields, but yes, they have their own fields at heart don't they?

As far as my MS, family stress and a hot summer chipped away at it. As they say, 'it's stable until it isn't' (or whatever it is they say). I would like to eventually get back on a DMD. However, weighing the options at hand, I can be patient for a little while longer. Still hoping my labs will continue to climb.

It will be interesting to see what options my neuro presents after they confer. I think there must be other MSers out there in a similar predicament? Since her patient pool (and she's a dedicated MS specialist) doesn't seem to have any, maybe another neurologist has encountered one or two? Mulling a second opinion, though probably not much can be done.

For folks on Tecfidera:
Get your labs done regularly.
Obtain and keep copies of the results (you may want to refer to them later)!

[JerryD]

I didn't hear or read anything about Tec as relates to low blood counts, before I was tested several times. It appears that no one on this message board has had this problem, other than you and me ( and possibly, another poster). So, in this instance, our experience with LBC is unique ! Good luck

[jreagan70]

Still hoping my labs will continue to climb.

Hi fairpace:

Here's the conundrum I see in your situation. Your neurologist wants your white cell count to come back up so she can put you on another DMD for the purpose of lowering your white cell count again (to inhibit your immune system's ability to attack your myelin).

Now, that's very broadly stated, without the necessary nuances. But to explore that issue and open up those necessary nuances, here are some questions to ask your neurologist:

If the purpose of a DMD is to suppress your immune system (usually by decreasing the amount of white cells available to attack your myelin), but your white cell count is already lower than desired, then what would be the purpose of putting you on a DMD to artificially lower it?

Is your currently low level of white cells not already providing the desired effect?

What would a DMD do for you that your currently low level of lymphocytes isn't already doing?

The last question is necessary to ensure that the premise of the first question is correct and to examine all of the medical nuances involved in the choice of a DMD for MS. (For sake of argument, I'm leaving Tysabri out of the mix because it works differently than the other MS DMDs.)

It will be interesting to see what options my neuro presents after they confer. I think there must be other MSers out there in a similar predicament? Since her patient pool (and she's a dedicated MS specialist) doesn't seem to have any, maybe another neurologist has encountered one or two? Mulling a second opinion, though probably not much can be done.

There's another specialist your neurologist should probably be consulting with. Rheumatologists deal with the balancing act of immunosuppression all day, every day. They certainly have had patients in your situation, just with different autoimmune conditions and involving different meds.

Neurology as a specialty has come to the immunosuppression game very late. MS specialists are specialists in the workings of MS, but they aren't specialists in immunology and rheumatology, which is necessary for understanding the new generation of treatment meds for MS.

Rheumatologists are the experts in autoimmune conditions and immunosuppression. It would be interesting to have a rheumatologist answer those three conundrum questions from the viewpoint of treating a lupus patient rather than an MS patient. You would benefit from a specialist who can look at your case immunologically rather than neurologically.

If you'd like to get another medical opinion from a neurologist, it really should be from one at a large clinic, who is skilled in working with the immunosuppressive aspects of the MS DMDs. And it would be helpful to get a medication/treatment opinion from a rheumatologist.

Your case is tricky. I'm sending you good wishes as you work through it.