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JUSTONCE
Regular Member


Date Joined Apr 2008
Total Posts : 21
   Posted 4/2/2008 12:31 PM (GMT -7)   
hello all..im new here but old 2 lupus...i have a question...well, a couple...for the last 4 months my platelets have hovered in the single digits...my dr suggested that i start taking cellcept in conjunction with plaquinil and of course, pred....have any of u had ongoing issues with ur platelets...also is anyone taking cellcept and if so, whut kind of side effects are u having...she really wants me to do IVIG treatments or have a spleenectomy but im not havin it....please advise!!!

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted 4/2/2008 12:52 PM (GMT -7)   
I took Cellcept for about 18 months -- it seems to have put my lupus into a remission, or at least really trivialized it. The ONLY side effect I had was some thinning of my hair. Other than that, it's been my miracle drug -- but everyone's results are different. I had some sorta' major cognitive issues that seem to have cleared up quite a bit -- back to 95% pre-lupus from about 30% at my worst.

Lynnwood, Co-Moderator: Lupus Forum

Dx Lupus since '00, new Dr wants to Dx Fibro instead....
SLE(’00), Sjogren's Syndrome, Raynaud's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Prednisone, Xanax, Trazodone, Boniva(3mth shot), Wellbrutrin SR, Valtrex
Links: DIAGNOSING LUPUS (4 of 11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions



JUSTONCE
Regular Member


Date Joined Apr 2008
Total Posts : 21
   Posted 4/2/2008 1:47 PM (GMT -7)   
thanks 4 ur response....my platelets are at 5....were yours that low and did the cellcept help raise them? heres the thing...yesterday i went to a breast specialist...aside frum everything else, my mammo indicated that i have a mass on my left breast...they cannot biopsy it bcuz of my low platelets...i need to know if the cellcept is going to help with that...
also, whut kind of cognitive issues did u have...did it inhibit u frum driving?

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted 4/2/2008 5:53 PM (GMT -7)   
yes, I stopped driving as I felt unsafe driving. just couldn't think clearly enough to make sense of much without a HUGE amount of effort. I got lost and/or disoriented quickly -- not good when driving. Not good even when trying to wash dishes, actually. I could manage to take a shower, but had to think hard to remember what I had washed and what I hadn't!!!

I did not have any platelet issues -- don't think I've heard of anyone who has.

Lynnwood, Co-Moderator: Lupus Forum

Dx Lupus since '00, new Dr wants to Dx Fibro instead....
SLE(’00), Sjogren's Syndrome, Raynaud's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Prednisone, Xanax, Trazodone, Boniva(3mth shot), Wellbrutrin SR, Valtrex
Links: DIAGNOSING LUPUS (4 of 11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions



JUSTONCE
Regular Member


Date Joined Apr 2008
Total Posts : 21
   Posted 4/3/2008 6:49 AM (GMT -7)   
thats really why im desperate to find another dr...i think something else is amiss...ive been dx with lupus about 6 or 7 yrs now and ive never had a platelet issue like this....imma get with somebody else, ASAP!!! thanks for ur words...i hope the cellcept does not disrupt my life 2 drastically...she want me to take 2500 mgs, i think....seems like alot 2 me...i need to google that right now....

applesk82
Regular Member


Date Joined Oct 2003
Total Posts : 262
   Posted 4/4/2008 9:13 PM (GMT -7)   
I have been taking cellcept now for almost two years, and so far nothing much with side effects just some diarrhea and thinning hair, I had a flare in march '07 but they had lowered my cellcept dose and now i am on 2000mg and it is working well. My lupus is laying low and my lab results have been good. My creatinine has been up just a smig but i think its more because i am not taking in enough fluids. so at my next appointment i am gonna make sure that i am very hydrated and i have been drinking more water lately too. But so far i have not have had any problems with cellcept.
Hugs and prayers,                      If it was easy being a lupie, 
   ~Suzanne~                                      the whole world would be one     
                                                             
diagnosed in May '95 with lupus nephritis, hypertension, hypothyroidism, avascular necrosis (knee) '98, kidney transplant April '06, pseudo-cerebral tumor '07, AVN ankles and hips '07
prednisone, cellcept, prograf, lopressor, allopurinol, synthroid, diamox, OsCal +D, lunesta, celexa, percocet for pain


hdgott
Regular Member


Date Joined Jun 2007
Total Posts : 28
   Posted 4/16/2008 11:07 AM (GMT -7)   

Hi -- just wanted to tell you that when I was diagnosed, my platelets were also at 5. I was treated with prednisone (100mg a day!-yuck) and Imuran. After about 10 months, the Imuran was causing my white blood cells to drop, so I was taken off of it and I started Plaquenil. I had labwork done yesterday and my platelets were 332. I know everyone is different, but I just wanted to share what my scenario was. I haven't spoken with many other people whose platelets were affected by their lupus. I hope things look up for you soon!

 

God Bless,
Heather


juliesq
New Member


Date Joined Feb 2009
Total Posts : 4
   Posted 2/17/2009 3:45 PM (GMT -7)   
hi can anyone help, my 5yr old grandaughter has low platelets over the last 6wks they have done blood tests, which they said needed to be done before they can do anything. she had her last test today and they were at 8. anybody know what happens next. we have been wrapping her in cotton wool so to speak its such a worry we had never heard of this before

Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1299
   Posted 2/17/2009 3:57 PM (GMT -7)   
Low platelets and mild anemia were the early, telltale symptoms for 15 or more years before I became symptomatic. My internist sent me to a hematologist who tested me for leukemia, bone disease and lots of other things. He finally concluded I might have lupus and 2 months later I became symptomatic. Treatment is usually for the underlying condition. My platelets have improved and are now in the low normal range and holding.

I had to reduce imuran dosage because it lowered them but they have come back up since reducing imuran.

Bill

juliesq
New Member


Date Joined Feb 2009
Total Posts : 4
   Posted 2/23/2009 7:43 AM (GMT -7)   
hi bill thanks for your reply, my grandaughter has been referred to a hematologist now and they want to take some bone marrow from her. Apparently when small children get low platelets in 90% of cases they start to improve within 6 to eight weeks and cure themselves without any treatment. but my grandaughter is not improving at all. also we know that the 1st signs have been goin on for about 3 month before actually going to the doctor. that may sound bad but she had just started full time school and was getting a few bruises etc.. we just thought maybe she were being a bit rough in playground. anyway my daughter took her to the doctors when her bruising became more worrysome and g/daughter didnt know how she had got the bruises. Now the bairn is starting to look tired etc.. we are very worried about the bone marrow procedure and what it may show. we were assured after the 1st blood tests that it was nothing awful as it was just the platelets that are low. does anybody know why they would need bone marrow from her.
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