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Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1 to 17 of 17. This is the beginning of the thread.
Posted by lucie lu on October 27, 2008, at 11:06:39
In two recent successive blood tests (over the past 3 months and in connection with my fibromyalgia symptoms) my white blood cell count (WBC) has come back abnormally low. This has not happened before and I've been referred to a hematologist. While there are many other, non-med possibilities for a low WBC, I read that psych meds, particularly mood stabilizers and A/Ds can be a cause. Since I'm on bupropion and lamotrigine, meds cannot be overlooked as a possible cause. I've been on both drugs for years so you wouldn't suspect them, but there are a couple of reports of low WBC counts that appeared to be caused by wellbutrin. In these cases, low WBC count appeared suddenly after years of taking the wellbutrin, blood count back to normal when the drug was discontinued, and back to abnormal when the drug was restarted. That looks pretty convincing to me. The manufacturers of almost all the A/Ds and mood stabilizers I looked at cite this as a rare side effect.
Anyone else experienced a low WBC that has been may have been attributable to psych meds?
Thanks, Lucie
Posted by Phillipa on October 27, 2008, at 12:59:52
In reply to Low white blood cell counts due to meds?, posted by lucie lu on October 27, 2008, at 11:06:39
Oh Lucie lu wow is all I can say. Wouldn't that mean you're prone to infections. But fibo isn't an infection I don't think. Now you got me googling. I's sorry sweetie. Love Phillipa ps did you google the meds only? As I'm starting with causes for low white blood counts any one in particular that was low monocytes, eosinophils, macrophages etc?
Posted by Phillipa on October 27, 2008, at 13:11:10
In reply to Re: Low white blood cell counts due to meds? » lucie lu, posted by Phillipa on October 27, 2008, at 12:59:52
Lucie lu could be that fibro flare. This link may not be accurate as dont recognize the source. But seems low is viral and high bacterial. And low atutoimmune. No sign-up required now to the meds. Phillipa
Posted by emme on October 27, 2008, at 17:30:10
In reply to Low white blood cell counts due to meds?, posted by lucie lu on October 27, 2008, at 11:06:39
> Anyone else experienced a low WBC that has been may have been attributable to psych meds?Yes. My WBC normally runs toward the low end of the reference range anyway, and psych meds seemed to drop it a bit below the reference range. Neurontin was the initial suspect. But after stopping neurontin, it was still slightly low. We suspect it was the Lamictal. It was ultimately decided that this was a non-issue as my WBC count was stable, not very far below the reference range, and I was not prone to infections. So we kept the Lamictal and did not worry about it.
emme
Posted by Nadezda on October 27, 2008, at 18:32:06
In reply to Low white blood cell counts due to meds?, posted by lucie lu on October 27, 2008, at 11:06:39
I had a serious problem with leukocytopenia (low white blood cell count) when on parnate. I don't know what other drugs can cause it, but it is something that can be caused by various meds. Mine was low enough that it could have caused a quite severe reaction if I had some real injury. It seemed to have worsened over time, so I would definitely keep track of it, if I were you.
It may not be anything; or it may not be related to psych meds, since they aren't the only ones that cause it.
In my case I had to stop the parnate immediately, but I had reached an extremely low level, and I"m not sure what my pdoc would have done earlier. My white blood cell counts went back to normal within a couple of weeks after stopping the parnate, so it was a convincing demonstration of the connection.
How low are yours?
Nadezda
Posted by lucie lu on October 27, 2008, at 18:45:50
In reply to Re: Low white blood cell counts due to meds? » lucie lu, posted by Nadezda on October 27, 2008, at 18:32:06
> In my case I had to stop the parnate immediately, but I had reached an extremely low level, and I"m not sure what my pdoc would have done earlier. My white blood cell counts went back to normal within a couple of weeks after stopping the parnate, so it was a convincing demonstration of the connection.
>
> How low are yours?Hi Nazedha,
The two readings were 3.7 and 3.2 (x10 3 u/L, the usual units), taken in August and a week or so ago. It looks to be decreasing but admittedly there are only two points so I wouldn't be confident about the trend yet. How low were yours?
I haven't noticed any signs of low immune activity, just got my flu shot. My younger daughter is sick with a bad cold right now, maybe that will be an indicator (although maybe what it indicates is that my hand-washing methods need improvement). Did you experience any symptoms or just the leukopenia?
And since I assume you were on the parnate for a good reason, how did you handle going off it quickly and what did you substitute to control the symptoms the parnate was addressing?
Thanks for sharing this history with me.
Lucie
Posted by lucie lu on October 27, 2008, at 18:49:47
In reply to Re: Low white blood cell counts due to meds? » lucie lu, posted by emme on October 27, 2008, at 17:30:10
>
low. We suspect it was the Lamictal. It was ultimately decided that this was a non-issue as my WBC count was stable, not very far below the reference range, and I was not prone to infections. So we kept the Lamictal and did not worry about it.Emme, how low was your WBC, do you remember? I hope I don't need to go off lamictal. For the most part it's worked very well for me and with virtually no side effects. Other mood stabilizers have been awful.
Thanks for writing, Lucie
Posted by lucie lu on October 27, 2008, at 19:01:11
In reply to Re: Low white blood cell counts due to meds? » Phillipa, posted by Phillipa on October 27, 2008, at 13:11:10
> Lucie lu could be that fibro flare. This link may not be accurate as dont recognize the source. But seems low is viral and high bacterial. And low atutoimmune. No sign-up required now to the meds. Phillipa
>
> http://www.diagnose-me.com/cond/C270145.html
Phillipa,In answer to your previous question, the WBC was low but the other values (e.g. neutrophils etc) were normal. This really had me puzzled until I looked at the units. The WBC is an absolute number of cells, and the neutrophils, basophils etc are expressed as percentages of the whole. Their proportions were all OK so they must have all been down by an equivalent amount. So... nothing specific for any of these cell types, just their total number.
Thank you for the link... I took a look at the site, which I found pretty interesting. I checked out their sample reading and saw that while the advice seemed to be fine, they rely heavily on herbal and other supplements and these are not without potential side effects of their own of course. But I got a couple of great suggestions including (duh)epsom salt baths for aching muscles. Which I'd completely forgotten about, and they have worked in the past. So I can't wait to go buy some and have a long hot soak!
Thanks! Lucie
Posted by Phillipa on October 27, 2008, at 19:51:04
In reply to Re: Low white blood cell counts due to meds? » Phillipa, posted by lucie lu on October 27, 2008, at 19:01:11
Lucie lu what site did you use for the lamictal as couldn't find that as a rare side effect? Once found the constant spitting I had was a rare side effect. Went off it as it was disgusting. I'm glad you got something from the site it really didn't look that hot. I have two new webmd's haven't looked at yet and the nursing one will see if anything. I guess different uses for the basos etc as one is for allergies. Why do they even divide them? Love Phillipa
Posted by emme on October 27, 2008, at 21:56:39
In reply to Re: Low white blood cell counts due to meds? » emme, posted by lucie lu on October 27, 2008, at 18:49:47
> Emme, how low was your WBC, do you remember? I hope I don't need to go off lamictal. For the most part it's worked very well for me and with virtually no side effects. Other mood stabilizers have been awful.In the mid 3's. Maybe around 3.4 or 3.5. The bottom of the laboratory's reference range was 3.8. So I was really not very low. We monitored it and it remained steady, which I believe was key in my doctor's feeling comfortable with it.
emme
Posted by yxibow on October 29, 2008, at 0:05:00
In reply to Low white blood cell counts due to meds?, posted by lucie lu on October 27, 2008, at 11:06:39
> In two recent successive blood tests (over the past 3 months and in connection with my fibromyalgia symptoms) my white blood cell count (WBC) has come back abnormally low. This has not happened before and I've been referred to a hematologist. While there are many other, non-med possibilities for a low WBC, I read that psych meds, particularly mood stabilizers and A/Ds can be a cause. Since I'm on bupropion and lamotrigine, meds cannot be overlooked as a possible cause. I've been on both drugs for years so you wouldn't suspect them, but there are a couple of reports of low WBC counts that appeared to be caused by wellbutrin. In these cases, low WBC count appeared suddenly after years of taking the wellbutrin, blood count back to normal when the drug was discontinued, and back to abnormal when the drug was restarted. That looks pretty convincing to me. The manufacturers of almost all the A/Ds and mood stabilizers I looked at cite this as a rare side effect.
>
> Anyone else experienced a low WBC that has been may have been attributable to psych meds?
>
> Thanks, Lucie
Is there any reason why your doctor is monitoring the WBC that often? Because usually that is only with Clozaril, and maybe with... mm... Remeron I think has a possibile rarity. I assume its the fibromyalgia I guess. Because its sort of like taking your temperature or weight very often.Not that I'm saying there's a lack of judgment with your doctor because, well, fibromyalgia is still not completely understood.
Standards for blood tests aren't always as uniform as they may see -- ethnicity, lots of things can change them. I mean if it came back really off then there is a reason. But also a high WBC can just mean a random virus sitting around -- yes, there are other reasons besides that too, I know.
Causality isn't always causation but the rule I guess in general is what is the last thing that was done.
And it seems the last thing that was done was to restart a medication, and if you've been on it for enough time for a plasma level and then you have a repeat WBC, it could very well be that agent.
But as I look at that statement again, you've been on both of them for a long time. The medications may possibly be a red herring, or there may be a grain of truth. It could simply be upsetting your fibromyalgia temporarily for unknown reasons since it doesn't make a lot of sense for agents that you have been on for years to suddenly have low WBC.
That's usually an emergent thing if there's a rare reaction when someone first starts a particular drug and they notice mysterious frequencies of flu-like things.
I guess I can only say its sort of a coin toss -- I know not the most useful of comments, but maybe you have to monitor things one more time and see what happens, rationally, I mean I can see now why you would have more blood tests.-- best wishes
Jay
Posted by Phillipa on October 29, 2008, at 0:14:24
In reply to Re: Low white blood cell counts due to meds? » lucie lu, posted by yxibow on October 29, 2008, at 0:05:00
Jay high white count bacteria low virus like autoimmune or Hiv. Fibromyalgia is now recognized. Must have 4 trigger points just passed my CEUS in fibromyalgia. A guess on my part as I think there is a total of ll trigger points. Didn't know it flaired. Must read the abstract again. Love Phillipa
Posted by yxibow on October 29, 2008, at 0:34:47
In reply to Re: Low white blood cell counts due to meds? » yxibow, posted by Phillipa on October 29, 2008, at 0:14:24
> Jay high white count bacteria low virus like autoimmune or Hiv. Fibromyalgia is now recognized. Must have 4 trigger points just passed my CEUS in fibromyalgia. A guess on my part as I think there is a total of ll trigger points. Didn't know it flaired. Must read the abstract again. Love Phillipa
Not just autoimmune or HIV, there are like 60 corona or rhinoviruses out there.
I didn't say it isn't recognized as a disorder, I said it still isn't understood. I think you missed my point -- cancer, autism, even all the mental illnesses that people have on this board are probably recognized, but that doesn't mean there are "cures" or even the best palleatives for them.
Treatments vary a lot and sometimes there aren't the best ones. Despite being in the 21st century, on some conditions we are still in the middle ages of psychiatry and medicine.
Why do I still have a high D2 and all sorts of visual and auditory and bodily complaints?
There's no "cure" for my disorder and its frustrating since I've never met someone with so many things that I feel basically all alone.
I hate to say it because it sounds nasty but "simple" dysthymia has many more palleatives than what I'm experiencing. I'd give anything to have some of the "simple" disorders I had in the past. But that's also rosy lenses.
And one has to look at the fact that for a lot of things there are palleatives, not cures.
Maybe that Augmentin that you took for a serious upper respiratory infection or skin infection "cured" the bacteria that was affecting you (assuming that it wasn't a virus in the first place, usually not bothered to be tested but recognized by a variety of presenting symptoms)
...but basically these single or multi-drug regimens for mental illness take the edge off of things and allow people to go on with their lives, for a period of time that can't be predicted. Because almost all the time they're biological illnesses.
Now some people may have PTSD or have depressive reactions to a secondary disorder or a calamitous event, or cancer e.g. and are carefully placed on medication to help with that and not mess up their chemotherapy -- those are different.
But in general, if you remove the medicine for something that doesn't have a "cure" yet, just like (an extreme example), if you remove drug cocktails for HIV, you have a real problem again. (Yes, there are theories about drug holidays and prolonging retrovirals, but that's aside the point).-- tidings
Jay
Posted by Phillipa on October 29, 2008, at 0:40:49
In reply to Re: Low white blood cell counts due to meds? » Phillipa, posted by yxibow on October 29, 2008, at 0:34:47
Jay I'm so sorry you feel so lonely. And what a horrible disorder you have any closer to understanding it? I do feel for you. Love Phillipa
Posted by yxibow on October 29, 2008, at 3:17:43
In reply to Re: Low white blood cell counts due to meds? » yxibow, posted by Phillipa on October 29, 2008, at 0:40:49
> Jay I'm so sorry you feel so lonely. And what a horrible disorder you have any closer to understanding it? I do feel for you. Love Phillipa
I appreciate that, Jan
No.. I had some good years with Seroquel not that I wanted to take it, but I felt "real" -- but there is a lot more to it than that, complex psychological issues....
....I was having trouble already with Seroquel which I believe would end with my non-tardive orobuccal tic [it is very psychologically connected to things], so gave the choice to switch to Zyprexa, which one month of going through stiffness caused a probable permanent stiffness (dystonia) from my trunk to my toes and my arms.
Anyhow, the dropping of Seroquel and Zyprexa was not a good match at the time that I had a volunteer and then my first real job in a long time -- which was probably very scary for me as noted and caused a dramatic plunge in depression last year.
Finally through various episodes we don't need to go into I went back on Seroquel and actually though I hate to say it, my "functionality" -- thats a very clinical term for, well, everyone, how they are able to cope and manage, life, which my moroseness and other things I also won't go into, show that I'm really afraid of living -- that is, being on my own.
I know I'm lucky to have parents who have some resources to be able to care for me, I always have had good relationships with them anyhow basically -- can't change reality, I wish they had me younger.
But that doesn't really answer your question -- cosmically, do I have any understanding why sometime between November 17 and 18, 2001, my Dopamine D2 (theory, nobody can exactly place that, its just response to drugs) went skyrocketing and my psychiatric vision (and hearing too) started getting stranger and amplified and/or distorted from what others could probably understand but would have filtered it out by the time I mentioned it...... I don't know, and no doctor knows.
So yes, I feel lonely. But I also know that there are only so much resources and also I need to go forward. But I've only accepted this on an abstract level. I haven't accepted where I am. I live in the past at times, I don't mean literally, but I wax back at moments that may have been good, also may be through rosy lenses.
Until I really accept where I am -- regardless of the fact that I am angry that Jay's reality (and don't get me wrong, my intelligence is in there, its trapped) but I mean how I see things, literally, and experience anxiety is not like everyone elses and their capabilities, I'm not moving forward.
It's not like anything I've experienced before -- Somatoform NOS, Psychosis NOS -- and thus some things I really don't know how to deal with and, well, there goes hiding under the covers at times.
And I'm also angry that medicine essentially betrayed me, but nobody could have seen really rare reactions to low potency antipsychotics coming -- still I have that anyhow.But then anger is one sign on the road to acceptance, something I just find so foreign.
And then there's the issue of getting off the Valium, which would improve my memory, probably, and was originally a destination for Clozaril (you can't have benzodiazepines on Clozaril, not Valium certainly), which never emerged, has actually proven a hard double edged sword, because it still provides some vestige of anxiolytic power even though I don't feel it.
That's causing problems now, maybe -- we don't know.
I mean some could say it could be worse, you could think about every other disorder in NORD (national organization of rare disorders) and there would be hundreds of "orphan disorders".
I still have the ability to walk, even if it hurts, especially at night. I used to be an avid mountain biker and hiker -- it doesn't mean I'll never be one but its a challenge.
I could go on -- the risk of diabetes with my weight, although my lipid panel recently was fine.
Basically since I'm not using the gym because I have such confusion distinguishing sounds and voices and that also is a part of my visual field now -- imagine being at a party and not separating things and having certain sounds tick you off -- no I'm not hearing voices, its just the gate in my mind that is supposed to be there to block these things like everyone else has is not quite functional.
.... I have to try to limit my intake (very hard) and I need to walk more.
So its not a question of being closer to understanding because unless someone in North America presents with the same list of medications and symptoms I'm not likely to find a cause other than perhaps my hyper-hysteria over 9/11 and the aftermath spilling into a disorder -- yet you'd think that would have dissipated...but being closer to accepting the present and fighting despite the dozens of things that are thrown my way.
Its tiring (bad insomnia too.... speaking of which I'm turning in) and that's just one reason why its hard to fight. I also could use social interaction which is another loop of how do I do that, etc.
Anyhow, that's a long enough laundry list.-- tidings
Jay
Posted by Phillipa on October 29, 2008, at 19:57:04
In reply to Re: Low white blood cell counts due to meds? » Phillipa, posted by yxibow on October 29, 2008, at 3:17:43
Jay yes it is I'm still your friend and always will be. I kind of understand from the past we've shared what your're going through minus the side effects from the antipsychotics. So Cloraril is canned for Now. Love Phillipa
Posted by yxibow on October 29, 2008, at 21:31:31
In reply to Re: Low white blood cell counts due to meds? » yxibow, posted by Phillipa on October 29, 2008, at 19:57:04
> Jay yes it is I'm still your friend and always will be. I kind of understand from the past we've shared what your're going through minus the side effects from the antipsychotics. So Cloraril is canned for Now. Love Phillipa
Thank you Jan.
Its been for a while -- both my own thoughts abstractly -- its somewhat similar to Zyprexa and given my sensitivity to medications at the moment and having to be very careful of another mess I'm also leery, but I can't get down enough on the Valium anyhow to safely take Clozaril.
Plus there's the weekly blood tests and I'm in therapy a lot and shuttling around all over the place, it would be an extra hassle on top of things.Its not a non option, but its not something I'm ready for yet and if I had the slightest bad movement effect I'd have to stop the whole thing, not to mention the issue of converting over the Seroquel and possibly losing my functionality, my ability to conduct my life, for a period of time.
-- Jay
This is the end of the thread.
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