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not feeling well

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14 years 7 months ago #13107 by server
not feeling well was created by server
I started Promacta. 3rd day. I don't feel well. I think it may be to soon to be a side effect of the medicine. I dunno. I feel just unwell all the way around. Physically and emotionally. I don't like it. Could it still be side effects from IVIg? My counts dropped from 357 to 233 in 3 days. Could it be that? I absolutely hate whining but I feel it's all I'm doing lately. I don't like this anymore.
My flesh and my heart may fail, but God is the strength of my heart and my portion forever.
Psalm 73:26
Blessings,
gretchen
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14 years 6 months ago #13151 by server
Replied by server on topic Re: not feeling well
well, I'm at 81 today. I know....it's a good number, but in 7 days I've dropped from 357 to 81. that's a lot! I'm averaging loosing 40k a day. At this rate, if the Promacta doesn't kick in, I'll be at 0 by Wednesday. sigh.
My flesh and my heart may fail, but God is the strength of my heart and my portion forever.
Psalm 73:26
Blessings,
gretchen
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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14 years 6 months ago #13153 by Sandi
Replied by Sandi on topic Re: not feeling well
I hope it works for you soon, Gretchen.

As for your side effects, it could be Promacta. I don't know much about that drug, but I have had side effects from a medication that quickly. I had side effects from Dapsone the very next day.
14 years 6 months ago #13171 by
Replied by on topic Re: not feeling well
I noticed side effects from Promacta starting on the first day....Most noticeably nausea. It decreases after awhile.
But I have lost 30 pounds over one year of Promacta treatment, without changing anything else. I was happy to rid myself of 30 pounds of leftover Prednisone fat.
Promacta; the world's most expensive diet drug.... :D
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14 years 6 months ago #13178 by server
Replied by server on topic Re: not feeling well
the nausea hasn't been to bad, I've had worse from antibiotics. It seems I feel better later in the evening. I've not been blessed with the lose of appetite yet though! Do you suppose the fatigue could be because my body is working overtime to destroy the platelets? I dunno
My flesh and my heart may fail, but God is the strength of my heart and my portion forever.
Psalm 73:26
Blessings,
gretchen
14 years 6 months ago #13218 by
Replied by on topic Re: not feeling well

in 7 days I've dropped from 357 to 81.

Bear in mind that the stated purpose of Promacta is to maintain a 50k range.
I didn't see what dose you are on. But I did not respond much at all over the first two weeks on a 50mg/day dosage (from 4k to 14k over two weeks). After the dose was upped to 75mg/day, it still took a couple of weeks to bump me up to the 30's.
The dosage was lowered to 50mg/day after a year, count stays around 50k.
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14 years 6 months ago #13228 by server
Replied by server on topic Re: not feeling well
I'm on 50mg/day right now. Only been 6 days. I'm hoping it kicks in sooner than later. I can't do IVIg again.
My flesh and my heart may fail, but God is the strength of my heart and my portion forever.
Psalm 73:26
Blessings,
gretchen
14 years 6 months ago - 14 years 6 months ago #13247 by
Replied by on topic Re: not feeling well
Like I said, 50mg dosage did not do it for me. Looking back over my notes, 50mg only upped my count from 4k to 14k over a two week period. Dosage was then upped to 75mg, which gave a 32k count after a couple of weeks.
After a year at 75mg, the dosage was dropped back to 50mg and I'm holding steady in the 50k range.
I noticed no increase of side effects from 50mg to 75mg....and no decrease when dropping back to 50mg a couple of months ago.
My initial side effects were: upset stomach, creepy-crawlies (tiny spiders dancing under the skin), dizziness, some loss of appetite, fatigue, and sleep loss. I have either just become accustomed to all or perhaps it has faded some. It's just not as big a deal now.

Am I the only other person here taking Promacta? I sometimes feel like I need a mask and a sidekick named Tonto.
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14 years 6 months ago #13269 by server
Replied by server on topic Re: not feeling well
thanks for the input Jack. I really appreciate it. I guess for now it's only you and me! I still am not experiencing the loss of appetite, darn! Thankfully no creepy-crawlies either! Fatigue is running rampant, used to that though and my sleep is not restful at all. In the long run, it's gonna be alright!
My flesh and my heart may fail, but God is the strength of my heart and my portion forever.
Psalm 73:26
Blessings,
gretchen
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14 years 6 months ago #13363 by server
Replied by server on topic Re: not feeling well
platelets are 21 today. 10th day of Promacta. See the doc on Wednesday. Not feeling well is starting to effect my quality of life. I'm not happy.
My flesh and my heart may fail, but God is the strength of my heart and my portion forever.
Psalm 73:26
Blessings,
gretchen
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14 years 6 months ago #13420 by plopper
Replied by plopper on topic Re: not feeling well
You asked if the fatigue might be from falling platelets, it's definitely the case for me. My dr said it's my body busy eating my platelets, so at least she's on the of the doctors that "gets" it. When I'm crashing, I have terrible mood swings, headaches and painful joints. Once they're dropped all the way, I'm exhausted.
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14 years 6 months ago #13509 by server
Replied by server on topic Re: not feeling well
thanks for your input plopper. I guess the promacta is starting to work because my count is up to 42! Not feeling any better though.
My flesh and my heart may fail, but God is the strength of my heart and my portion forever.
Psalm 73:26
Blessings,
gretchen
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