Saw the Hemotologist today. 1st plan of attack...

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Ginny
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Date Joined Feb 2003
Total Posts : 5514
   Posted 8/13/2009 4:23 PM (GMT -7)   
The hemotologist wants me to get off of the Imuran to see if that med is causing my low platelets.  I see my rheumy (new, 1st visit) tomorrow morning.  She has the ultimate decision if that is an okay thing to try.  Good grief my anxiety and panic is going through the roof.  I'm all Fibro right now and have been for over 2 years.  I don't want my Lupus to all of a sudden wake up. I'll keep ya posted on how tomorrow goes. 
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


crazykitty
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Date Joined Jul 2009
Total Posts : 4796
   Posted 8/13/2009 4:47 PM (GMT -7)   
Ginny,

Did you ask the hemotologist about platelet clumping and did they check for
pseudothrombocytopenia? When my rheumy pulled me off Imuran my platelets did go
up, but that wasn't the true cause of my low platelets. It was due to pseudothrombocytopenia
due to EDTA, the chemical in the test tube. Please ask them to test. Like I had said before
it is rare, it only happens 1 out of 1000 people but it happened to me. To test all they need
to do is collect your blood in the purple top tube they always use and do another draw
using a blue top tube (citrate tube). As an example just last week I had my blood drawn,
my platelet count using the standard test tube was 76. They ran it again using the citrate
tube and it was 205. I have Pseudothrombocytopenia. Every time they test my platelets
they have to do it twice. The test in the citrate tube is the accurate count.

Good Luck

Robin
 
 possible MCTD, Raynauds, Fibromyalgia, Osteoporosis, Degenerative
 Disc Disease, Osteoarthritis, High Blood Pressure, Migranes and
 Pseudothrombocytopenia, biopsy shows a Scleroderma variant
 MEDS: Methotrexate, Savella, Boniva,Lisinopril, Folic Acid, Flexeril, and
 Vitamin Supplements


Ginny
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Date Joined Feb 2003
Total Posts : 5514
   Posted 8/13/2009 6:09 PM (GMT -7)   
HI Robin, yeah I did ask about that.  He said that if there was any clumping of platelets, the technician doing the test would make a note of it on the results. It's something that doesn't get overlooked.  I'm in Canada, maybe it's a Canadian thing to make those notes. I have no idea.  It's still very much a possibility though and I will mention it to my rheumy tomorrow.  It's such an easy thing to test.
 
Thanks Robin!
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


crazykitty
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Date Joined Jul 2009
Total Posts : 4796
   Posted 8/13/2009 6:24 PM (GMT -7)   
Ginny, I am glad you are checking it out. I am always getting my bloodwork done. I know
my lab techs well and all of them said they never saw any visible clumping in the tube.
They were surprised as I was when they found out it was pseudothrombocytopenia.

Keep us posted

Robin
 
 possible MCTD, Raynauds, Fibromyalgia, Osteoporosis, Degenerative
 Disc Disease, Osteoarthritis, High Blood Pressure, Migranes and
 Pseudothrombocytopenia, biopsy shows a Scleroderma variant
 MEDS: Methotrexate, Savella, Boniva,Lisinopril, Folic Acid, Flexeril, and
 Vitamin Supplements


MJLD
Veteran Member


Date Joined Jul 2007
Total Posts : 1048
   Posted 8/13/2009 6:28 PM (GMT -7)   
Ginny,
I e-mailed you and then came to the forum!  Sorry!  I'm pretty sure I told you before, but imuran was the problem for me!  I'm really praying you get all of this worked out without a major (or a minor) flare!  NO FLARES!!!!  I'm sorry you're not feeling good!
                                                                                                                                                                                     Judy

Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 8/14/2009 2:51 PM (GMT -7)   
I spent 2 hours with my new rheumy this morning.  She's amazing.  So was the resident.  The plan of attack is to start me on Plaquenil. (She was surprised that I wasn't already on it).  Plaq does help platelets to go up apparently.  So if the platelets go up then the problem is with my Lupus and/or APS.  If the platelets don't go up, it's the Imuran and I can stop taking it cold turkey because I'll have the plaquenil to take over.  Just have to give this stuff time to do its thing and see what happens.
 
So with being on Prednisone, Imuran and Plaquenil, I'm going to be really immune suppressed aren't I?  Wow. Yes, I'm having some anxiety about all this new stuff.  I haven't ever tried a different medication for my Lupus.  I started on Pred and Imuran 9 years ago.  I'm a little freaked to be honest.  Is anyone else on this combination of meds?
 
 
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


crazykitty
Veteran Member


Date Joined Jul 2009
Total Posts : 4796
   Posted 8/14/2009 3:15 PM (GMT -7)   
Ginny, I am so glad you like your new rheumy.

I had no problems when I was on the plaquenil. My dosage was 200mg, 2x daily. I was taking it with Imuran
and had no side effects. My rheumy decided to take me off both the plaquenil and Imuran and put me on
Methotrexate. I was on a prednisone taper a few years ago. My present rheumy hasn't prescribed it
because of my osteoporosis.

Hoping all goes well for you !

Robin
 
 possible MCTD, Raynauds, Fibromyalgia, Osteoporosis, Degenerative
 Disc Disease, Osteoarthritis, High Blood Pressure, Migranes and
 Pseudothrombocytopenia, biopsy shows a Scleroderma variant
 MEDS: Methotrexate, Savella, Boniva,Lisinopril, Folic Acid, Flexeril, and
 Vitamin Supplements


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 8/14/2009 4:36 PM (GMT -7)   
Thank you Robin!  I am a little concerned about being too suppressed.  I guess I shouldn't worry wink .  I asked the rheumy about the EDTA stuff but she said the same thing as the Hemotologist.  When I see my family doctor in a week or so I'll get him to give me a requisition for the testing.  He's great and will most likely humour me. LOL.
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 : 1469
   Posted 8/14/2009 6:43 PM (GMT -7)   
Hey Ginny! Just wanted to wish you well with the plaquenil! I am really hoping its the imuran! That would sure be an easy fix. Let us know how you do on it!

Amy

 

21 yrs old, Systemic Lupus , lupus nephritis , raynoids , Carpal Tunnel

Cytoxan, Prednisone, Lupron, Zofran, Mesna, Lisinopril,  Ambien, Flexeril, Ultram, 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...

 


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 8/14/2009 7:27 PM (GMT -7)   
Hi Ginny, hope you are doing okay on all the meds. Plaquenil at least has an anti protozoal, antibiotic characteristic to it as a drug, so at least while you are immunosuppressed, you have a little bit of protection. At least against malaria maybe! Hopefully we don't have that to contend with, though I sometimes feel like I have it!
Love, Marji
Ills--Sjogrens-Lupus cond., AI polygland. dysfunction 2, hyper/hypopigment, scoliosis,kyphosis,stenosis, deg.,O.A.,spine surgeries, salivary/lymphectomies, NASH, COPD, RLS, UT/GI bleeds, hystero, brain/nerve damage,TB
Meds--INH,Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, HRT and Lidocaine patchs, Voltaren gel, Klonopin, Vicodin, Restasis, Albuterol, steroids


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted 8/14/2009 9:21 PM (GMT -7)   
I will add that since I've been on Plaquenil and Prednisone I've only been sick (with non-lupus stuff) twice in 8 years. Sometimes I've been on Imuran, sometimes I haven't....to tell the truth, I think most of our illnesses have more to do with handwashing and children than with our immune systems!
Lynnwood, Lupus & Sjogren's Moderator
Life is far too important to be taken seriously. - Oscar Wilde, 1882


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 8/15/2009 8:49 AM (GMT -7)   
Lynn I agree!  I don't get sick very often either (with non-lupus stuff).  If Plaq is going to make my immune system stronger that way that's great!  Marji you're funny turn .  Who knows if in the future we'll be under a Malaria attack at least we'll be protected.  LOL.
 
Thanks everyone for the encouragement.  I woke up with wicked anxiety this morning.  It's making me feel yucky.  The last time I started a new medication I ended up in the ICU fighting for my life.  My anxiety and panic is making me relive those events.  Taking deep breaths.....
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


jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 8/17/2009 4:49 PM (GMT -7)   
Hey Ginny,

Sounds like you have a great new rheumy! I am surprised you weren't on Plaquenil too, it was the first med I was put on back in 2004. It's a good med with the least side effects however it can give you some GI side effects. You know how my gut is, my rheumy started me off slowly (1/2 tab every other day) to prevent any uncomfortable side effects. Within a month or so I worked my way up to a regular dose of 2 / 200 mg tabs a day. I started on Imuran in 2005 (currently on 125mg) and Mtx (currently on 5/2.5mg) in 2008, right now I am tolerating the combo well and I pray it stays that way.

I don't like it when my doctor's change my meds either, I pray you tolerate it well with no complications! Please keep us posted on how you are doing!
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 : 5514
   Posted 8/17/2009 8:11 PM (GMT -7)   
Hey Stacie!  So you're on quite a combo of meds too eh?  I started the Plaq last night - 2/200mg.  I had some "big D" this morning and a mild headache.  So far tonight after my second dose I'm doing okay.  I am taking them with my supper to avoid any upset.  I hope I don't have the poops again tomorrow smhair .
 
Thanks for checking in on me!
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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