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

  • Sandi
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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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8 years 5 days ago #61023 by Sandi
Take Vitamin C and Magnesium. They are both good for you and will help with constipation.
The following user(s) said Thank You: johnmerrick
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7 years 11 months ago - 7 years 11 months ago #61117 by johnmerrick
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?
  • EmilyK
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  • Diagnosed jan 2015 at age 50 with 13,000 platelets.
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7 years 11 months ago #61120 by EmilyK
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.
The following user(s) said Thank You: johnmerrick
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7 years 11 months ago #61136 by johnmerrick
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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7 years 11 months ago #61169 by johnmerrick
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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7 years 11 months ago #61182 by johnmerrick
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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7 years 11 months ago - 7 years 11 months ago #61217 by johnmerrick
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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7 years 11 months ago #61233 by johnmerrick
temperature 38C almost hospital time.
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7 years 11 months ago - 7 years 11 months ago #61237 by poseymint
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
The following user(s) said Thank You: johnmerrick
  • Sandi
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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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7 years 11 months ago #61240 by Sandi
Posey - I have the same symptoms. It's frustrating because I can't tell the difference between being sick and a Lupus flare.
The following user(s) said Thank You: johnmerrick
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7 years 11 months ago #61435 by johnmerrick
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.
  • Sandi
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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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7 years 11 months ago #61438 by Sandi
Looking good, John! Maybe you'll hit remission.
The following user(s) said Thank You: johnmerrick
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7 years 11 months ago #61439 by johnmerrick
fingers crossed.
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7 years 11 months ago #61489 by johnmerrick
count now 249 at 15mg doctor moving me down to 10mg for 2 weeks.
  • Sandi
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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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7 years 11 months ago #61505 by Sandi
Great news! Looking better and better for remission all the time!
The following user(s) said Thank You: johnmerrick
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7 years 11 months ago #61584 by johnmerrick
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?
  • Sandi
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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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7 years 11 months ago #61585 by Sandi
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.
The following user(s) said Thank You: johnmerrick
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7 years 11 months ago #61588 by johnmerrick
no really problem just skin feels painful(left side of chest and left side of upper back)
  • Sandi
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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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7 years 11 months ago #61591 by Sandi
I'll bet it does! They run along the nerves.
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7 years 11 months ago #61614 by johnmerrick
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.
  • mrsb04
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  • ITP since 2014. Retired nurse. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use.
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7 years 11 months ago #61616 by mrsb04
Abdominal pain can be attributed to Prednisolone dose reduction so maybe that is the cause
The following user(s) said Thank You: johnmerrick
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7 years 11 months ago #61632 by johnmerrick
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.
  • Sandi
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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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7 years 11 months ago #61634 by Sandi
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.
The following user(s) said Thank You: johnmerrick
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7 years 10 months ago #61751 by johnmerrick
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.
  • mrsb04
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  • ITP since 2014. Retired nurse. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use.
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7 years 10 months ago #61753 by mrsb04
Dropping from 10mg to 5mg in one go is pretty drastic. I hope your adrenals kick straight back in.
The following user(s) said Thank You: johnmerrick
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7 years 10 months ago #61812 by johnmerrick
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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7 years 10 months ago - 7 years 10 months ago #61844 by johnmerrick
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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7 years 10 months ago #61845 by poseymint
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.
The following user(s) said Thank You: johnmerrick
  • Sandi
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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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7 years 10 months ago #61848 by Sandi
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.
The following user(s) said Thank You: johnmerrick
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7 years 10 months ago #61849 by johnmerrick
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?