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TOPIC: same dosage two weeks in row and number falling.....

same dosage two weeks in row and number falling..... 1 year 5 months ago #61023

  • Sandi
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Take Vitamin C and Magnesium. They are both good for you and will help with constipation.
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same dosage two weeks in row and number falling..... 1 year 5 months ago #61117

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i hurt my big toe -a oxygen tank fell on it. it's not broken hurts though. i was wondering if that injury could effect my platelet count?

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same dosage two weeks in row and number falling..... 1 year 5 months ago #61120

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I used to worry that i was 'using up' platelets if i bled or hurt myself, but i do not think it works that way. You have a certain number ciculating around doing various jobs. I could be wrong, but that is my view.
Diagnosed Jan 2015 at age 50 with 13,000.
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same dosage two weeks in row and number falling..... 1 year 5 months ago #61136

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well my count was 206 oct 10th went up from 201 (a week at 30mg).
so a week at 25mg and count 206. the lab is different though i would have liked to use the same lab for every test
started 20mg oct 10th doing that for a week.

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same dosage two weeks in row and number falling..... 1 year 5 months ago #61169

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seem to have developed skin sensitivity not all over though. i think it is the prednisone but i'm not sure.

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same dosage two weeks in row and number falling..... 1 year 5 months ago #61182

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one week at 20mg ....201. so number hasn't changed much....... 40mg 214 30mg 201 25mg 206 20mg 201
2 weeks at 15mg starting today.

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same dosage two weeks in row and number falling..... 1 year 5 months ago #61217

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i feel pretty sick right now something i get from time to time won't go into detail about it. it's not a virus or bacteria more like a posture problem that ends up making you feel like you have the flu but you don't. you won't understand it just comes and goes from time to time. it could take weeks to correct itself. i have to assume my platelet count will do down as my body is under all this stress. most likely i have messed up all this hard work and might have to start all over. can't tell you how sad and mad i am but there is nothing i can do about it . i can only hope that the count stays up.


:(

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same dosage two weeks in row and number falling..... 1 year 5 months ago #61233

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temperature 38C almost hospital time.

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same dosage two weeks in row and number falling..... 1 year 5 months ago #61237

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John, try not to be too disappointed if your counts fall. Prednisone really does not usually work to keep counts up. I hope they do stay up for you and its a real remission, but if they don't I really think its just that prednisone doesn't work well for the long term.
Also I'll mention-- Your symptoms sounds a bit like mine this year- fluish, feverish but not a virus. I also had body aches and nerve pain, chills, joint pain. I was diagnosed with rheumatoid arthritis, with overlapping Lupus/Sjogrens syndrome. Sounds like a lot but most importantly is not the flu, but an auto-immune flare up. Also called connective tissue disorder. Just wanted to mention it. Anyway hope you feel better soon. And if your counts do fall, remember there are other treatments that don't have the bad side effects of prednisone. take care
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same dosage two weeks in row and number falling..... 1 year 5 months ago #61240

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Posey - I have the same symptoms. It's frustrating because I can't tell the difference between being sick and a Lupus flare.
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same dosage two weeks in row and number falling..... 1 year 4 months ago #61435

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well 8 days of 15mg and 2 of those days i was as sick as hell checked my number today and it went up from 201 to 244.
i was very surprised. so it was 20mg 201 then i did 8 days of 15mg and it went up to 244..
i will say i added starting those 8 days taking 100% egg protein 30-45g a day.
i didn't think i was getting enough protein when i looked at my diet and calculated also not enough quality protein.

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same dosage two weeks in row and number falling..... 1 year 4 months ago #61438

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Looking good, John! Maybe you'll hit remission.
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same dosage two weeks in row and number falling..... 1 year 4 months ago #61439

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fingers crossed.

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same dosage two weeks in row and number falling..... 1 year 4 months ago #61489

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count now 249 at 15mg doctor moving me down to 10mg for 2 weeks.

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same dosage two weeks in row and number falling..... 1 year 4 months ago #61505

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Great news! Looking better and better for remission all the time!
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same dosage two weeks in row and number falling..... 1 year 4 months ago #61584

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well what i thought was acne on the chest and upper back turns out i had had shingles doctor said it is going away now.

was that the result of prednisone?

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same dosage two weeks in row and number falling..... 1 year 4 months ago #61585

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Probably. A person is very susceptible to shingles while on steroids. All it takes is an exposure to someone with chicken pox or someone who has just been vaccinated against chicken pox or shingles.

"People who get chickenpox vaccines can spread the vaccine-strain varicella-zoster-virus to others. However, this happens very rarely."
www.cdc.gov/vaccinesafety/vaccines/varicella-vaccine.html

You're lucky if you didn't have serious symptoms. I lost the use of my left hand for six months when I had shingles. It hit the nerve and then it affected the muscle.
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same dosage two weeks in row and number falling..... 1 year 4 months ago #61588

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no really problem just skin feels painful(left side of chest and left side of upper back)

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same dosage two weeks in row and number falling..... 1 year 4 months ago #61591

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I'll bet it does! They run along the nerves.

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same dosage two weeks in row and number falling..... 1 year 4 months ago #61614

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now my stomach is hurting and i'm not sure if it is because i'm not taking the prednisone with as much food as i use to or this a withdrawal problem. i'm only taking 10mg so i would think i don't need a a lot of food.

i'm going to start taking the zantac again.

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same dosage two weeks in row and number falling..... 1 year 4 months ago #61616

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Abdominal pain can be attributed to Prednisolone dose reduction so maybe that is the cause
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same dosage two weeks in row and number falling..... 1 year 4 months ago #61632

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well my stomach still feels sore. i believe the pain is due to not eating enough when i was taking the prednisone. even though i was only taking 10mg i think it slowly was hurting my stomach . i'm taking the zantac but i have a prescription for a ppi i was wondering though if i take the ppi then i won't absorb certain vitamins and minerals and my count will go down because the lack of acid.

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same dosage two weeks in row and number falling..... 1 year 4 months ago #61634

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John, I don't think your counts will go down because of lack of acid or lack or vitamin absorption. It might affect your vitamin absorption short term (or it may not), but it shouldn't affect counts unless the medication itself does. You have to look at benefit vs risk here.

I have problems with absorption and don't really know the cause. I know that because I have chronically low vitamin and mineral levels....have for years. I take many vitamins on a daily basis to keep levels in normal range. I suspect that I have leaky gut. Just ask to have your levels tested occasionally, but low levels of anything shouldn't cause counts to go down.

I have had reflux for about 20 years. It predates ITP and steroids. I've tried all of the meds out there and the very best thing I've found to control it is diet, and I've been on steroids non-stop since 2006.
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same dosage two weeks in row and number falling..... 1 year 4 months ago #61751

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latest count 206 on 10mg for 2 weeks down from 249. he said go to 5mg for 2 weeks anyway.
could be the PPI that caused the loss . i'll going to stop taking the ppi since i'm only taking 5mg's now and see how my stomach feels.

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same dosage two weeks in row and number falling..... 1 year 4 months ago #61753

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Dropping from 10mg to 5mg in one go is pretty drastic. I hope your adrenals kick straight back in.
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same dosage two weeks in row and number falling..... 1 year 4 months ago #61812

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well guess what just happened to me. i was taking my 5mg tablet with a glass of water and i was drinking it fast and some water ended up running down my chin which was no big deal... i thought; then i looked down and the open bottle with the rest of my tablets was directly underneath. did some water go in the bottle ? hell if i know hard to tell really. i called the nurse left a message asking for another prescription just to be on the safe side. this is the second time i'm messed up with the tablets. couple weeks ago my tablets ended up in the toilet and on the floor and the doctor gave me another prescription and now i'm asking again for another prescription. i think they are going to think i'm addicted or selling this stuff.

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same dosage two weeks in row and number falling..... 1 year 3 months ago #61844

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well saw the other hemo today count back up to 246 was 201 looks like the ppi caused the drop.
so tuesday i will be off the prednisone just have to go back to the other hemo on tuesday and make it official.
i will be switching doctors after tuesday. this doctor is much better. he said i tested positive for ANA and may have lupus. he is sending me to a kidney specialist . he said that having a count of 17 and blood in the urine is unusual that coupled with the positive ANA he thinks lupus.

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same dosage two weeks in row and number falling..... 1 year 3 months ago #61845

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Sounds like a good doctor who thought to do an ANA. Yes, if you have kidney involvement- lupus nephritis, you must take care of it right away. From what I know it can cause kidney damage. Its good you are switching doctors. I am on my third hematologist and he is the best. I am learning all about lupus myself! I was diagnosed in June- Lupus/ Sjogrens. I have had ITP for 9 years (probably longer without knowing). Then in 2015 started having some odd symptoms- angioedema, swelling of the lip and tongue. Kind of like an allergic reaction but couldn't find any allergies. That led into body aches, chills, fatigue episodes, also malar rash. I was tested by a rheumatologist and had a positive ANA with speckled pattern. And positive RA rheumatoid factors. I look bad on paper but actually feel fine most of the time.
haha Funny about your pills. maybe they think you are selling prednisone on the Dark Web. When I was tapering prednisone my hemo wanted me to have all the dosages, so I wouldn't be cutting pills and the tapering could be very accurate. So he gave me prescriptions for 5mg, 2.5mg and 1mg. That seems reasonable but not to the pharmacist, to them I was getting 3 prescriptions for the same drug and they refused to refill. good luck and hope you feel okay after getting off pred.
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same dosage two weeks in row and number falling..... 1 year 3 months ago #61848

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John:

You should really see a Rheumatologist for a definitive Lupus diagnosis. I've seen many people diagnosed with Lupus by other specialists based on an ANA and they were wrong. There are other criteria that need to be met for a Lupus diagnosis. There are many reasons for blood in the urine.
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same dosage two weeks in row and number falling..... 1 year 3 months ago #61849

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sandi : i will get my family doctor to send me to a Rheumatologist. also when my count was 17 i had blood in the urine and protein. is protein in the urine normal for ITP? do you know of a case of blood and protein in the urine at a count of 17?

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