low platelet counts

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Ginny
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Date Joined Feb 2003
Total Posts : 5511
   Posted 6/27/2009 7:02 PM (GMT -7)   
HI everyone, I haven't needed to post anything about me and my Lupus for quite a while, but things seem to be changing mad .
 
My platelet count has been going down for about 3 months now.  They're at the point where intervention is needed.  My numbers go up and down between 45 - 85. (120 is normal). This week they're 62.  I'm bruising like crazy, I look like a dalmation.  To make matters worse, I'm on warfarin, so the risk of bleeding is much higher. 
 
Doctors have done various tests to rule things out.  One of my compliment tests (C4) came back low - which means there is disease activity going on.  We just don't know which disease.  It's likely that it's my Lupus, but all my other blood tests look great.  It's just the platelets that are wonky.  It's a bit of a mystery.
 
Just wondering if anyone else has had low platelets due to their Lupus, or if you've had this due to a different disease or condition? 
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in to be content. Phillipians4:11-13
35 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety, Chinook migraines. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus
 Co-Moderator for the Lupus and Fibromyalgia forums


dbab
Veteran Member


Date Joined Jan 2004
Total Posts : 4151
   Posted 6/27/2009 8:16 PM (GMT -7)   
Do meds affect your platelets? I know low platelets can be caused by Lupus, but not sure on the meds. Never had a problem with mine, just my WBC is borderline low all the time. I'm hoping you get some answers. Will be keeping you in my thoughts.
Dx: IBS 1989, Diverticulosis 2004, Idiopathic Acute Colitis 2006, UCTD 2007, Localized Scleroderma 2009, Raynauds 2009
 
Meds: Plaquenil 400mg/day, Pred 2.5 mg/day (tapering), Methotrexate 10mg/week, Hydrocodone PRN, Flexeril PRN, Fiorinal PRN, Baby aspirin, Prenatal Multi, Vit E, B12, Fish Oil, Biotin, Calcium, Folic Acid


Ginny
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Date Joined Feb 2003
Total Posts : 5511
   Posted 6/27/2009 10:40 PM (GMT -7)   
Hi dbab,
 
Yes actually! I started taking Gabapentin (Neurontin) about 6 months ago.  It's the only med that I have started since my platelets started to fall.  1/1000 people will get thrombocytopenia from taking it.  So I'm tapering off of it right now.  We'll see if it's the cause or not. 
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in to be content. Phillipians4:11-13
35 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety, Chinook migraines. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus
 Co-Moderator for the Lupus and Fibromyalgia forums


Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1227
   Posted 6/28/2009 9:43 AM (GMT -7)   
Ginny,
 
Lupus can eat your platelets.....they did mine.  I had low platelets for at least 15 years before becoming symptomatic as well as mild anemia.  Was not sick in the first 62 years of my life.  Then the platelets dropped lower and my docs sent me to a hematologist thinking I might have leukemia or a bone marrow disease.  After 9 months of testing...nothing.  My hematologist speculated that I might have lupus and bingo....2 motnhs later I became symptomatic.
 
My platelets are just below normal now but I am not on any blood thinner.  Imuran did lower my platelets and I am now on 1/3 the original dose and my platelets are near low normal now which seems to be good for me.
 
It is definitely something to check out but it can be very difficult to figure out what is causing it.  Based on my experience I would say it is your lupus most likely.
 
Mine were as low as 25 and are now 130-150.  150 is the bottom range of normal in most labs.
 
Bill
MCTD (lupus, scleroderma, polymyositis).  Diagnosed 2005.  Kidney, liver, GI tract, dysphagia, raynauds, Barretts esophagus, quadriplegic in 2005.  Recovered and now active in skiing, tai, chi, hiking, golf.  Meds: prednisone 2.5mg, imuran 50mg, amlodipine, benazapril, omeprazole, potassium, folic acid, vitamins, maxide and various supplements and vitamins.
 
Remain optimistic and you can overcome the odds.


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5511
   Posted 6/28/2009 1:31 PM (GMT -7)   
Hey Bill thanks for your input.  I appreciate the first hand experience with this.  I'm also wondering if it might be the Imuran I'm on.  SIGH, I don't know.  I'm in a quandry.  
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in to be content. Phillipians4:11-13
35 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety, Chinook migraines. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus
 Co-Moderator for the Lupus and Fibromyalgia forums


aimsgirl16
Forum Moderator


Date Joined Jun 2008
Total Posts : 1434
   Posted 6/28/2009 1:55 PM (GMT -7)   
Hey Ginny! Its great hearinng from you agan and sorry you are having trouble again! When I was on Imuran, my white and red blood cells did drop, but it started happening pretty soon after I started taking it. When they took me off of it, my counts went back up to normal!

How is your workout going? Are you still haveing the great results? Has it helped your pain? How long is the workout each day? I am starting to look for something to help with the weight I put on from the pred at the begining of the year...

Amy

 

21 years old...Systemic Lupus , lupus nephritis , raynoids , Carpal Tunnel

Ultram, Prednisone, Cell-Cept, Lisinopril,  Ambien, Flexeril, Darvocet, Ferrious Sulfade, Calcium, Vitamin B12, Aspirin 81 mg, Vitamin C

The Old Normal is no more so I and we have to find a New Normal...

 


Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1227
   Posted 6/28/2009 2:03 PM (GMT -7)   
Ginny,
 
Imuran can hit the blood counts after long term use.  My WBC, RBC and platelet counts dropped after 18 months at 150mg.  My rheumy dropped to 100 then 50mg and everything stabilized or improved.  It has been 2 years since reducing imuran and my blood numbers look good.  For whatever reason my platelet count is a little on the low side but I have never had a problem with bleeding even when it was low.  Must be my "norm."
 
Imuran is a cytotoxin and is in effect a poison so it can cause these problems.  Most people tolerate it very well but some do not.
 
What dose of imuran and how long have you been on it?
 
Bill
MCTD (lupus, scleroderma, polymyositis).  Diagnosed 2005.  Kidney, liver, GI tract, dysphagia, raynauds, Barretts esophagus, quadriplegic in 2005.  Recovered and now active in skiing, tai, chi, hiking, golf.  Meds: prednisone 2.5mg, imuran 50mg, amlodipine, benazapril, omeprazole, potassium, folic acid, vitamins, maxide and various supplements and vitamins.
 
Remain optimistic and you can overcome the odds.


jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 6/28/2009 4:09 PM (GMT -7)   
Hi Ginny (((hugs)))) I was just reading about how lupus can affect the blood. My WBC, RBC are usually always low which is from lupus and recently my absolute lympocyctes was really low. Here is a link on it: www.uklupus.co.uk/fact14.html

My rheumy told me when your body rejects Imuran it usually shows across the board, affecting the WBC,RBC, Platelets, etc.

I hope you get some answers soon! Take care of yourself!
Stacie
Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Lupus, Sjogrens, Raynaud's, Hashimoto's and Celiac Disease
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Folgard OS (B12), Vitamin D-50,000 IU, Tramadol (as needed) and magic mouthwash (for mouth sores)


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5511
   Posted 6/28/2009 6:22 PM (GMT -7)   
Hi Amy! I haven't worked out in 3 days now.  My Fibro is really bad and I'm just feeling all over crappy.  I'm giving myself another day or so and then I'll try getting back to it.  Each routine is 60-90 minutes long.  Yoga is the longest at 90 minutes. It's an amazing workout. I burn 700+ calories!  Crazy. I definitely went too hard in the month of June.  I had 3 huge, 12 hour weddings to shoot, plus I was doing all this exercise.  NOT a good idea.  I'm paying for it now. 
 
Hey Bill, I've been on 150mg for 9 years.  LOL.  A wee bit of a while!  My dose hasn't changed at all.  I do have a hematologist and I'm waiting to get an appointment, but it's taking too long to hear from his office.  I'll be seeing my family doctor this coming week and I'll talk with him about all of this. 
 
The other thing that sucks is that my rheumy is moving to another province.  In fact she's already left her practice here, so I can't see her.  Bad timing.
 
Stacie, thanks for telling me about how Imuran usually affects across the board.  All of my CBC results are totally normal except the platelets.  That has stumped my internal medicine specialist. 
 
I guess I just have to wait this out for a bit.
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in to be content. Phillipians4:11-13
35 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety, Chinook migraines. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus
 Co-Moderator for the Lupus and Fibromyalgia forums

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