Platelets bottomed out. It's been a tough week

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Ginny
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Date Joined Feb 2003
Total Posts : 5514
   Posted 9/4/2009 11:51 AM (GMT -7)   
Hi everyone, thought I should share how my week has gone.  I woke up Saturday with a fever and the most unbelievable body aches I've ever experienced.  Thought I had the flu.  Sunday was worse, fever got up to 101.4 and my knees were in a lot of pain.  Saw my family doctor on Monday and he wasn't 100% sure it was the flu because I didn't have any chest or lung involvement and my fever kept coming and going.  Had my weekly CBC blood work done that day and a few hours later I got a call from my rheumy saying that my platelet count had dropped to 17.  I told her how I was feeling and she also didn't think it was the flu, but a really bad flare up in my Lupus.  To combat the flare and help my platelet situation she told me to take 50mg of prednisone Monday night. 
 
Tuesday, woke up feeling WAY better. Fever was going, joint pain was gone. Did another CBC to see if the pred did anything to my platelets. Internal med doctor called me and told me to head straight to the ER because my platelets had dropped to 10.  The ER knew I was coming and they had a bed ready for me.  I was going to get a platelet transfusion and IV steroids.  So, before starting the transfusion, ER took another CBC sample and wouldn't you know it, my platelets climbed back up to 25.  So the pred I took the night before kicked in. 
 
I was discharged with instructions for the week.  No transfusion, no IV steroids.  WHEW!  I'm on day 4 of 50mg of pred.  I am not experiencing any typical pred reactions yet.  I'm shocked.  I thought by now I'd be willly nilly off the walls.  I guess my body desperately needed the boost.  My platelets are going up, but it's slow.  I have no idea how long I will be on this dose.  I truly look like a Dalmation with all these bruises.  My arms look like I'm a drug user from all the needle pokes.  I've been to the lab every day this week.  So my quiet Lupus is no longer quiet.  I haven't flared like this ever.  I didn't even recognize the flare.  Thought it was the flu.  I'm disappointed but not shocked.  I knew someday I'd be dealing with it. 
 
Anyway, that's the update on me.  I'm tired, and I have a wedding to shoot tomorrow.  Trying to get some rest in today and be ready.  I'll update as things change.  Thanks for reading if you got all the way through it!
 
Ginny
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in to be content. Phillipians 4:11-13
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, PTSD. Prednisone, Imuran, Plaqunil, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6,
 Moderator for the Lupus and Fibromyalgia forums


crazykitty
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Date Joined Jul 2009
Total Posts : 4796
   Posted 9/4/2009 12:18 PM (GMT -7)   
Ginny , I am so sorry. You really did have a tough week. What a wicked flare!

I am happy to hear your platelets are on the way up. The prednisone seems to be
working it's magic. Try to get as much rest as possible, and keep us updated.


prayers and healing vibes on the way !

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


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 9/4/2009 3:29 PM (GMT -7)   
Ginny, I'm sorry you have been through so much. The drop in platelets sounds scary. I'm glad you didn't end up needing a transfusion. It sounds like the lupus is back in full force which really stinks. Will you be on higher doses of prednisone for a while? Take care of yourself and I hope you are getting lots of rest.

lucysgd
Veteran Member


Date Joined Jun 2008
Total Posts : 669
   Posted 9/4/2009 8:44 PM (GMT -7)   

Ginny - so sorry to hear you've had such a rough week.  And scary!  Glad the pred kicked in when it did and is making you feel better.  I hope your wedding shoot goes off without a hitch, and then you can get all the rest you need.   Take care! - Lucy


diagnoses:  mono 1972; postviral CFS 1997; fibro 1998; UCTD & osteoporosis 2007; celiac 2009
meds: Plaquenil 400 mg, occasional low dose xanax for sleep aid, artificial tears w/ ointment at night, Advil/aspirin prn and lots of vitamins
 
 


aimsgirl16
Forum Moderator


Date Joined Jun 2008
Total Posts : 1469
   Posted 9/5/2009 5:52 AM (GMT -7)   
Hey Ginny! Praying things stay going up! How are they going to keep your platets up? Is the treated primarly with pred? How is the plaquenil?


Amy

 

Systemic Lupus , lupus nephritis , and a lot of other stuff associated with Lupus!

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...

 

Post Edited (aimsgirl16) : 9/5/2009 7:01:32 AM (GMT-6)


Butterflake
Forum Moderator


Date Joined Jun 2006
Total Posts : 1547
   Posted 9/5/2009 7:25 AM (GMT -7)   
OMG! I'm so glad the pred started working. What a terrible week! Besides feeling like poop, u had labs every day, doc visits, and a trip to the ER. I'll tell a quick story: I was working in a lab and a woman came into the ER with a nose bleed that would not stop. I ran the CBC and her platlets were 15 (if my memory serves me). Knowing how serious, I circled the result in red, hand carried it to the ER, and told the nurse. The doc sent her home- it's just a nose bleed. She came back the next day still bleeding. CBC- she's now very anemic and platelets 10. This time I found the doc and told him personally. The light bulb flickered and she was admited. So, be very careful with bruising and bleeds while you're so sick. Please let us know how you're doing OK? Love, Butterflake 

Systemic Lupus ('05), depression, fibro, sjogrens, cns issues, diabetes, gerd, hypertension, colitis, stage 1 kidney disease  Rx: Cellcept, plaquenil, prednisone, celebrex, lisionpril, actos, lipitor, nexeum, prozac, wellbutrin, ambien, cholestryramine, lomotil PRN: xanax, neurontin, tylenol arthritis, flexeril, nasonex, phenegren, vitamins, Acupuncture.  "Welcome to lupus, where the strange is ordinary and nothing is normal." Donna 
 


FW
Regular Member


Date Joined May 2007
Total Posts : 477
   Posted 9/5/2009 7:40 AM (GMT -7)   
Ginny, How are you doing? Hope you are feeling? Been thinking about you.

edited for spelling
Take care,
Fran

Dx: Lupus, sjogren's, celiac, severe allergies.

Daily Meds: Plaquenil, Zyrtec. Aciphex, Nasacort, Prozac, Ambien CR, CellCept

Daily Supplements: Calcium, B-100 Complex, Daily Vitamins.
As Needed Meds: Epinephrine, Benadryl, Proventil, Xopenex, Tylenal, Darvocet, Prednisone.


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 9/5/2009 8:11 AM (GMT -7)   
Good morning everyone,
 
Well, I'm feeling quite a bit better.  Still have that lingering Lupus headache.  I had forgotten how yucky those were.  My platelet count doubled on Thursday, up to 78.  Doctor didn't call me yesterday with the Friday results so I'm assuming they're still climbing.
 
The effects of 50mg of prednisone are starting to rear their ugly heads.  I'm jittery and feeling not so chipper, hehehe.  So far, no weight gain. In fact I've lost 2 more pounds.  Which is odd.  Whatever, I'll take it!  Old bruises are disappearing and I'm not making new ones which is GREAT.
 
I have a wedding to photograph today, so here's praying that I make it through alright. I have an assistant who knows my issues. She'll be very helpful.
 
I'll touch base on this next week when I get more blood work done. It's a long weekend here in Canada so no labs until Tuesday.
 
Hope you're all having a nice start to the weekend and that you're feeling well.  Talk with you soon!
 
Ginny
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in to be content. Phillipians 4:11-13
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, PTSD. Prednisone, Imuran, Plaqunil, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6,
 Moderator for the Lupus and Fibromyalgia forums


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 9/7/2009 6:52 AM (GMT -7)   
Ginny, I hope you made it through your wedding okay. I bet you are not enjoying the 50mg of pred. The highest I've been on is 20mg and even that made me feel yucky. Hopefully you have been able to get some rest after the wedding.
dx: UCTD (lupus), sjogrens, reynauds,
meds: prednisone, plaquenil, methotrexate, tramadol, neurontin,
doxepin, folic acid   


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 9/7/2009 8:05 PM (GMT -7)   
Hi Hippi,
 
Yes, I made it through the wedding just fine.  It's funny but I've been on 50mg of pred for a week now and I'm not getting any of those nasty side effects...... Like none.  WHAT?  I'm like you. Normally anything over about 15mg makes me crazy.  Not this time.  I guess I really needed it!!  I'm actually losing weight too.  5 lbs this week.  I have heard that if there's active inflammation going on it can hamper weight loss.  So maybe I'm killing the inflammation and my body is rewarding me with some more dropped poundage.  I don't know. But whatever is causing it can continue!! LOL.  I do have a weird head feeling today and yesterday.  Thick, and heavy over my eyes. Kind of a sludgy feel.  Not nice.  Almost a headache but not quite.  Can't seem to describe it right.
 
Anyway, thanks for checking in on my Hippi.  I hope to be back to the forum more once my season is over at the end of the month.  Sorry I haven't made many comments on other's posts.  Just having trouble finding time and energy to be on the computer much.  I know you all understand tongue .
 
Tootles!
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in to be content. Phillipians 4:11-13
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, PTSD. Prednisone, Imuran, Plaqunil, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6,
 Moderator for the Lupus and Fibromyalgia forums


jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 9/8/2009 2:06 PM (GMT -7)   
(((( Ginny )))) bless your heart, this was a wicked lupus flare!! You know this disease never fails to amaze me, it can rear it's ugly head anywhere and everywhere! I had one several months back, I didn't recognize it either and ended up on pred too and that's not a med I take on a regular basis but it's the only thing that helped it.

I pray the pred continues to help you with no side effects!
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 9/10/2009 10:22 AM (GMT -7)   
Well, good news!!  My platelets are in the normal ranges again.  Monday they were at 258!  So today I'm imagining they're even higher.  Bruises are disappearing and I don't bleed forever and a day if I knick myself shaving wink I'm still on a high dose of pred.  40mg.  I'm starting to feel the effects.  Jittery, hyper, anxious, blah.  I will call my rheumy tomorrow and see if I can start to taper down more.  So far, no weight gain!  VERY happy about that. 
 
The one symptom I'm having is a really heavy feeling in my head. Behind my eyes.  Pressure kind of feeling. I can even feel it in my sinuses. I don't have a cold or any sinus issues.  Just this heavy, pressure.  Started a couple days ago.  Anyone get this with high doses of pred?
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in to be content. Phillipians 4:11-13
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, PTSD. Prednisone, Imuran, Plaqunil, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6,
 Moderator for the Lupus and Fibromyalgia forums


crazykitty
Veteran Member


Date Joined Jul 2009
Total Posts : 4796
   Posted 9/11/2009 9:02 AM (GMT -7)   
Ginny, I am so happy to hear your platelets are back up there again, how wonderful.
Hoping your predinose taper goes well for you. Wishing you luck!

Robin
 
 MCTD, Fibromyalgia, Raynauds, Osteoarthritis, Osteoporosis, Degenerative 
 Disc Disease, Hypertension, Migraines and Pseudothrombocytopenia
 MEDS: Methotrexate, Savella,Flexeril,Diltiazem, Boniva, Vitamins 
  
 
 
 
 
 
 
 
 
 
 
 
 
 


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 9/11/2009 10:09 AM (GMT -7)   
Ginny, glad to hear you're starting to feel better. As far as the pressure behind the eyes goes, you might want to use your neti-pot on a regular basis just in case it is a sinus problem starting to flare up. My doc recommends using one every day of my life. Boooring....but effective.
SLE, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.

prednisone, plaquenil, leflunomide, neurontin, synthroid, triamterene, actonel, niaspan, tri-est, cymbalta, tricor, acifex


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7017
   Posted 9/11/2009 11:27 AM (GMT -7)   
Hey! So glad things are looking up!
Lynnwood, Lupus & Sjogren's Moderator
Life is far too important to be taken seriously. - Oscar Wilde, 1882

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