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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 6 months ago #60666

  • johnmerrick
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my doctor had me at 75mg for 10 days went to 157 from 17 then cut it down to 50mg for 7 days -123.
he said stay there for another week. question... if the number goes down again and i am still at 50mg then isn't it safe to assume that prednisone will not work for me? i mean if this tuesday(i go for blood test) it is at 95. that would mean i'm still losing and i hadn't decreased my dosage (50mg).
he would say stay at 50mg for another week. why? what are the chances that going from 50mg to 0mg i stay at or above 50 or even 40 ?
i'd say very very small.

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same dosage two weeks in row and number falling..... 1 year 6 months ago #60669

  • ytsejam02
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That's what happened to me. I was started at 70mg of Pred initially. Number jumped from 16 to about 90, then we did a quick ween down to 10mg. Platelets dropped with it. During the ween we were hoping they might level off and there was a count or 2 where we thought that was going to happen, but by the time we got to 10mg they had tanked.

We jumped back to 70 to try a slower ween. The count jumped with it, but I stayed at 70mg for 2-3 weeks this time, and the count slowly started to go down anyway. So, in my case, it would seem I get an initially boost, and then my body doesn't respond. I'm off it entirely now.

Ultimately I agree with your assessment. I wouldn't stay at 50mg for another week if you're trending down. It's not like your downward trend is a small amount either. As to the odds? You're probably right, but it's hard to know. You could spontaneously go into remission tomorrow, but would we credit the Prednisone for it? I wouldn't.
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same dosage two weeks in row and number falling..... 1 year 6 months ago #60674

  • Sandi
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John - Most of the time, Prednisone works initially but as the dose is lowered, the counts go down too. That doesn't mean that it isn't working. It is. It's just not working to cause remission. It's not a complete failure as a treatment because it's doing what you want it to do; raise counts.

I don't know what your doctor will want to do as far s keeping you on the same dose or tapering it. All doctors are different. I know it seems senseless to stay on Prednisone if counts keep dropping, but it's also possible that counts could go up. You'll know when the time is right to try another treatment but for now, try to hang in there and give it a chance. This is only the beginning of ITP for you. It can take time to get to a stable point. For now, take one day at a time.
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same dosage two weeks in row and number falling..... 1 year 6 months ago #60704

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well my count went up today 180
so that's 10 days at 75mg....157
7 days at 50mg....123
another 7 days at 50mg...180
starting at 40mg for 7 days now and we will see.
after the 123 i started taking my mutlivitamins again i'm sure i'm low on folic acid vitamin b12 cause i went through my diet and started adding up the numbers.

still looking to line up another doctor but will make a switch if prednisone doesn't work.

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same dosage two weeks in row and number falling..... 1 year 6 months ago #60708

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That's good news! See? It is working. You just don't know if your counts will hold. Again, one day at a time.
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same dosage two weeks in row and number falling..... 1 year 6 months ago #60714

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yeah one day at a time. i was so nervous today what the number would be. it's been less than a month since i started using prednisone and i want to take out my spleen and any other body part that will make this thing go away...lol last week when i was at 123 my doctor wasn't talking about maybe it would go up. he was talking about if it was done dropping. i said maybe it would go up and he seemed to brush that off. today i asked if if he was surprised it went up he said no.....sure okay...whatever.
he's not dumb though cause his taper plan makes sense to me he does 50,,,40,,,,30,,,,maybe hold at 25 for a little then 20...15.... that would be in general he said. he said 25 mark is were people run into problems.

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same dosage two weeks in row and number falling..... 1 year 6 months ago #60716

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Well now John, don't be in any hurry to start giving up any body parts unless you have spares hanging around in there. Splenectomies do not always work and can cause more problems than you have now.
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same dosage two weeks in row and number falling..... 1 year 6 months ago #60731

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i've got muscle wasting of the thighs... doctor said that starts as soon as you take it but don't notice it until 2-3 months in. i noticed it about a week ago only been on it 24 days so far but the dosage was high 75...50...now 40...he said you could exercise to prevent it but man these side effects scare the hell out of me. i'll never get use to them. i want to get off it but not relapse so i'll try to find that balance. i'm not even against just tapering down regardless of the number don't think the number will get below 20 to be honest and live there for 6 -7 months then try the steroids again this time start at 60mg for 7 days instead of 75mg for 10 days and then see how that goes...

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same dosage two weeks in row and number falling..... 1 year 6 months ago #60736

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Ok, I get it, you really don't like Prednisone. There are other treatments though.

Stay active - you'll be okay.
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same dosage two weeks in row and number falling..... 1 year 6 months ago #60742

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you know i feel kind of wimpy other people here have it a lot worse--- i should try to keep that in mind.

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same dosage two weeks in row and number falling..... 1 year 6 months ago #60744

  • ytsejam02
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johnmerrick wrote: i've got muscle wasting of the thighs... doctor said that starts as soon as you take it but don't notice it until 2-3 months in. i noticed it about a week ago only been on it 24 days so far but the dosage was high 75...50...now 40...he said you could exercise to prevent it but man these side effects scare the hell out of me. i'll never get use to them. i want to get off it but not relapse so i'll try to find that balance. i'm not even against just tapering down regardless of the number don't think the number will get below 20 to be honest and live there for 6 -7 months then try the steroids again this time start at 60mg for 7 days instead of 75mg for 10 days and then see how that goes...


I feel like I had similar muscle wasting in my thighs. I started walking every morning prior to work and during lunch hour. Helped a ton. I didn't like the idea of strenuous exercise while on Prednisone (just got off about 3 weeks ago). I feel pretty good now, aside from some mild Promacta side effects, but that's a different story.

You don't want to be on Prednisone long term!
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same dosage two weeks in row and number falling..... 1 year 6 months ago #60745

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John - tapering causes muscle weakness, but that is temporary. I had total jello legs during the taper which got worse the lower the dose got. I remember having shaky legs every day walking to and from the parking garage to go to work and back. It was awful, and it might get worse for you too. It's normal and you don't have to like it, but it will get better.
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same dosage two weeks in row and number falling..... 1 year 6 months ago #60752

  • mrsb04
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John. Tapering steroids is hard work but with it. The withdrawal effects can be as horrendous as taking the wretched drugs themselves but worth it. Personal experience dictates that the gentler the taper the fewer the withdrawal symptoms. It takes longer but is easier to tolerate. Anne
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same dosage two weeks in row and number falling..... 1 year 6 months ago #60755

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johnmerrick- You can complain as much as you want- its okay! You are not being wimpy at all. Especially if you are on high doses of prednisone! omg its the worst! There are so many physical side effects the list is endless- I had forgotten about muscle wasting. Plus it can make a person anxious emotional paranoid depressed. And you don't always realize that its the drug doing it, sometimes it appears to be reality. A nurse at the cancer clinic told me she took prednisone once and thought she was okay until she yelled at one of her colleagues. Thats when she realized she had to get off of it. haha

Also very few people achieve any kind of remission from prednisone. Most people's counts drop as they taper the dose. Your doctor's tapering schedule does sound sensible. It will feel better when you get below 20mg, then better under 10mg and 5mg is almost normal again. You mentioned that your counts might level off at 20K. Just my opinion from my own experience, but if my counts were 20K I would not treat at all- I'd just watch the numbers, get regular labs and watch the symptoms. good luck!
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same dosage two weeks in row and number falling..... 1 year 6 months ago #60760

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might sound crazy but my saddles and running shoes feel looser- not as tight in them.
i brushed it off when my saddles felt looser but i just but on the running shoes and now they feel lose too.

side effect? seems crazy to even think that but.....

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same dosage two weeks in row and number falling..... 1 year 6 months ago #60765

  • Sandi
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If anything, Prednisone should cause those to feel tighter due to weight gain and water retention. My feet and lower legs swelled when I was on it.
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same dosage two weeks in row and number falling..... 1 year 6 months ago #60767

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went to my dermatologist today she said not to worry about skin thinning it takes years just like sandi and others have told me but still i needed to hear it from a dermatologist. i still want to get off this thing as fast as possible but that has relaxed me a lot.

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same dosage two weeks in row and number falling..... 1 year 6 months ago #60787

  • Sandi
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I'm glad to hear that, John. I know it's hard, but try to relax. The short term side effects will all go away. You haven't been on it long enough for long-term side effects.
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same dosage two weeks in row and number falling..... 1 year 5 months ago #60904

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well number went up again today from 180 to 214.
started at 17

so it's 10 days 75mg....157
7 days 50mg....123
7 days 50mg...180
7 days 40mg...214

starting 30mg now.

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same dosage two weeks in row and number falling..... 1 year 5 months ago #60905

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That's great! You're getting such a good response that I wish he'd taper you by 5's so you don't crash! The side effects would be easier too.....
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same dosage two weeks in row and number falling..... 1 year 5 months ago #60906

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if i remember right he may go to 5's after 30. i think it depends on your numbers and what the trend is.

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same dosage two weeks in row and number falling..... 1 year 5 months ago #60985

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well number went down today moved from 40mg at 214 went to 30mg for a week and the count is 201.
so down but not really by much. he said go to 25mg for 7 days then 20mg for 7 days then come in to check the count.
what i'm going to do is before i start the 20mg i'm going to check the count out at my family doctor. i prefer weekly blood tests.

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same dosage two weeks in row and number falling..... 1 year 5 months ago #60986

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John, your numbers are really great! Awesome numbers for 30mg prednisone. 214 and 201 are nearly the same count because of the constant destruction and production of platelets. I've gotten variation in numbers even from the same blood draw. Anyway, I agree with slowing down the taper, the immune system might not react to the change if its gradual. When I tapered, I sometimes would weave in the new dose, such as alternating days of 30, 25,30 25. Then stay on the 25 for 5days or so. It helped with withdrawal symptoms. good luck!
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same dosage two weeks in row and number falling..... 1 year 5 months ago #60990

  • mrsb04
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John,
I wouldn't get too hung up on the counts. Initial treatment isn't recommended for a count above 30 unless the patient is symptomatic.
I would concentrate on getting off the steroids as both the short & long term side effects are horrendous. If your count drops below 30 then a second line therapy will be required to maintain a safe count of around 50.
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same dosage two weeks in row and number falling..... 1 year 5 months ago #60993

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mrsb04 trust me i am focused on getting off prednisone. my number is good the doctor's taper schedule i agree with. i honestly think if he would go faster it would mess things up. so if the number stays up i think it's 25...20...15...10..5...0 change every 7 days- not 100% sure past 20 though. if my number wasn't good the doctor and i would have a problem he would want me to stay on the drug a lot longer and at a higher dose than i would be willing to go along with. i believe you have to look at everything when making a decision as to whether to stay on the drug. my doctor i feel doesn't care about the side effects really. i am close to getting another doctor but most likely will not switch until the doctor and i disagree on how to proceed.

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same dosage two weeks in row and number falling..... 1 year 5 months ago #60997

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That is a fast taper. You have been on high dose steroids for more than a couple of weeks and need to be aware of adrenal insufficiency.
Rob16 has a page that explains it well pdsa.org/forum-sp-534/7-treatment-general/29130-steroid-tapering-secondary-adrenal-insufficiency.html#54152
These are UK guidelines for tapering Pred.
Gradual withdrawal for people who received more than 40 mg prednisolone daily for more than 1 week.
•The problem has resolved and treatment has been given for only a few weeks:- Reduce by 2.5 mg every 3–4 days, down to 7.5 mg per day, then reduce more slowly, for example by 2.5 mg every week, fortnight, or month.[/left]
•There is uncertainty about disease resolution and/or therapy has been given for many weeks:- Reduce by 2.5 mg every fortnight or month down to 7.5 mg per day, then reduce by 1 mg every month.
•Symptoms of the disease are likely to recur on withdrawal:- Reduce by 1 mg every month.
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same dosage two weeks in row and number falling..... 1 year 5 months ago #61014

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mrsb04 not sure past 20mg how fast he is going to reduce - i just assumed it would be by 5mg every 7 days.
... i'm sure he knows about secondary adrenal insufficiency... i'll ask him about it during my next visit - certainly can't hurt.

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same dosage two weeks in row and number falling..... 1 year 5 months ago #61015

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Don't assume that doctors know about the harm to adrenals. Most of them taper too fast. My Rheumatologist expected me to be totally off of Prednisone in less than a year after being on it for 12 years. I will never get off of it and to think that I could be or should be is insane. My Hemo tapered me off by 5's too like yours is and it was brutal. Unless they have been on Prednisone, they just don't get it. That taper probably won't kill you, but withdrawal is pretty bad for some people and it lasts weeks or months. It can feel worse than the high doses.

Not only that but if you go too fast, your counts might tank. You worked too hard for that to happen. At that point, some doctors will raise the dose and you start all over again, or you go to another treatment. Makes you wonder what the point of it all was in the first place.
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same dosage two weeks in row and number falling..... 1 year 5 months ago #61016

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John,
Sandi is correct, doctors do not always know best.
My initial taper designed by haemo was fine down to 15mg but after the drop to 12.5 mg I was an absolute wreck. I went to to see my GP who was marvellous, telling me the struggle starts from 15mg downwards and each patient copes differently. She put me back up to 15mg and brought dose down very gradually to 5mg where I stayed for 6 months whist undertaking the Fostamatinib trail. Once off the trial I restarted tapering gradually and got down to 3mg a day. Unfortunately I had a relapse and ended back up on 20mg a day just before last Christmas. By the time I started Eltrombopag in February I was down to 10mg. It took me to the beginning of September to get to 3mg by following GP's gentle regime without any problems at all. Am now holding at that until the new year as not wanting to rock the boat of feeling human again before my jaunt to Australia. I will recommence taper when I get back.

Poseymint will also agree. This is her post, from 6 months ago, on my topic pdsa.org/discussion-group/7-treatment-general/29570-started-promacta-february-2017.html
I tapered even slower than 0.5mg per week because I alternated days to weave the new dose in. Example: 3mg for a week, then alternating days with 2.5mg for a week. Then 2.5mg for a week. Sometimes I even stayed on a dose for longer than a week if I felt too tired to lower it.
After I got completely off pred I was sensitive to stress for quite a while, 3-6mos. Just as in the article that Rob posted about adrenal insufficiency. If I stayed up too late or worked long hours I would really feel it! It would be hard to recover. Also emotional stress made me tired. BUT overall I felt so much better! Just so much calmer, relaxed and easy-going. that was nice. Plus so great to lose the weight that I had gained and lose the moon face, double chin. I had so much fat around my neck I think it was giving me sleep apnea- ugh. I am sleeping and breathing much better since off pred.
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same dosage two weeks in row and number falling..... 1 year 5 months ago #61019

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mrsb04-- well i've got an appointment with another hemo who for sure knows all about ITP and the latest drugs, tapering....
i'll see what he has to say. i will be switching to him for sure when will depend on what he tells me.
passing stools is starting to get harder now. increasing water and fiber in hopes that solves the problem.

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