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1 gram (1000mg) of prednisone daily for 5 days

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Unread 05-25-2008, 07:40 PM   #11
PolarExpress
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Blech, yeck, ptooie..
Just reading about it makes me taste that prednisone taste again..
I had to count out 27 pills for three mornings in a row before I started reducing the amount. I learned that "take with food" literally means eat, take the pills, eat some more. Though for some strange reason, after filling my stomach with 27 pills, I didn't feel hungry anymore..
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Unread 05-27-2008, 11:27 AM   #12
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I can't believe they gave you such a large dose of prednisone without being in the hospital. That medicine has so many side effects that are potentially hazardous and that is why they do the IVSM in the hospital. But with that much even though you are taking orally.....I don't know. YOu be very careful and pay close attention to how you are feeling.

Yall are right about the mention of the pills! I can taste them right now!!

I would suggest that with your history of stomach surgery and this large number of pills that you call the pharmacist at the CVS that filled your meds and ask them what they would reccommend you take for your stomach. There may be certain ones of the meds we use like Pepcid, etc. that will work better with what you are taking. Also, I would want to be sure the pharmacist was aware of your gastric surg. and what effect that may or may not have on taking the prednisone. I sure would hate to take all those pills and find out they were only 30% effective due to the bypass! But thats just me! I would be very **** about that prednisone! I did not read in your post as to if the Dr knew about the surgery or not when they gave you that lethal cocktail!

My husband had to take (what I thought was a fairly large dose) prednisone in Dec and he had some pretty bad side effects from it so I guess that is why I am concerned about your post. Fortunately, I knew some about it and was aware of what was happening to him during the time.

Gosh, I hope you feel better soon and get wonderful results from this since its such a nasty tasting pill.

I will watch for your posts.
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Unread 05-28-2008, 03:17 AM   #13
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I think you are right. This is a fiasco for me. I've researched high dose oral/pills of prednisone - and most things mention 60-80mg of prednisone as high dose. Ummm, I'm on 1000mg!! It's a lot. I'm a real nut and I'm not sure it is helping my symptoms. Tomorrow morning is my last half dose of the meds...and the pharmacist called today to tell me he was concerned about me coming off of the meds. I called my neuro and left a desperate message and I'm hoping to hear from them early! I think I may need to find the oral liquid form of the steroid to try - and then follow with slow long taper of lower dose pills. I dunno. I don't think the pills are working on the sx....but the side effects are very gnarly. I know the doctor who called in the meds did not know about my surgery....tho he really wanted to put me on the liquid form but we couldn't find it on a Friday night holiday eve. Thanks to my regular neuro who did not call me from Wednesday until Friday even though I was leaving frantic messages. So upsetting...but I'm just in pain in every way shape and form - and I've never had this before. I do not recommend a dose of prednisone like this to anyone. It isn't anywhere near the level of meds given for the usual oral taper from IVSM.

Nine hours after taking my last dose today - I can still taste the pills. I've tried everything to mask it. To top it off - I am not hungry, nothing tastes right - or tastes at all (except for the freakin' pills!). Then when I am hungry - I just can't get much in (and trust me - I can get food in at any time, any place, anything! LOL). My biggest struggle is with protein right now - just can't get it in. Uggg.

This is pure torture. I'm at a loss. One minute I'm nearly high as a kite, then two minutes later, literally, I'm like a lump of dead wood and can barely move. I just want someone or something to put out of my misery! (heck, last night I even baked myself a batch of my favorite extremely yummy brownies - but of course, when I went to take it out of the hot hot oven - I grabbed the oven rack - before I realized I didn't have a dish towel or oven mitt on my hand. Can you say ouch?!?!?! I can't hold anything in that hand today. And top it off - the brownies don't taste good either).

Sorry to whine - I'm just struggling big time here. The IVSM did not do anything of this to me in the past - and both times I had it - it really went to work quickly. Not this, not so much. Only "decent" thing about having to go through this is - it's only costing me like $35 instead of $750! Of course, how much is little sense of sanity worth these days? LOL




~Keri
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Unread 05-28-2008, 06:42 AM   #14
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I'm tapering off now but last weekend I was 1gm a day IV for three days but the oral dropped to 60mg/day for a week, then 40 for two, 30 for two, etc. I wouldn't be able to sleep but for the xanax. About an hour after I take the pills I'm flyin'. I can't imagine taking that many orally, doesn't it wreak havoc on your stomach?

And yes, they taste NASTY (matter of fact I've not taken mine yet today but I can taste 'em just thinking about it). I hope this gets resolved for your today.
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Unread 05-28-2008, 08:03 AM   #15
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Kerri

The neuro didn't taper your dosage

I have done oral prednisone (twice) but it was always tapered. I have never had it in the amount you have but I know it's prescribed in much higher doses nowadays than when I took it. I was dx'd in the dark ages ya know

I have never used IVSM so I can't compare the two. It's possible the oral didn't work as well for you as the IVSM would have.

It's also possible the IVSM wouldn't have done any better - it's hard to know.

Unfortunately, sometimes the more steroids are used the less affective they become.
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Unread 06-03-2008, 05:27 PM   #16
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I'm not sure if this will post right as I've never done this before but while searching for high dose prednisone in MS I came across your entry. I am a physician and have taken 1000 mg prednisone a day for 3 days ever 3 months for the past year and just found out that my MS lesions have regressed or disappeared?!?!? My neurologist always had me take my prednisone starting very early in the morning so I never was up all night until maybe the last day and then I was just up late, but very happy and productive! Talk to your doctor about the timing and also about giving you something to help you sleep during the times you're on Prednisone. Do you know of any literature supporting this high dose therapy? I stopped a few months ago because I was worried about steroid related complications such as avascular hip necrosis and also because I just had an early melanoma removed. Now with my new MRI findings, I'm rethinking. My understanding was that this high dose Pred was experimental and I was using it off label.


Quote:
Originally Posted by RedPenguins View Post
OMG - i think i may never fall asleep again. im in agony not being able to sleep. and trust me - i am a lifer in the insomnia category - so that part isnt new - except - my body and my brain - REALLY want to sleep, to shut down...and it isn't happening.

because my neuro did not see fit to return my call Wed. night or all day thurs or all day fri - despite my numerous messages - i am now in the throes of a bad bad exacerbation. neuro finally called at 5something this evening - fri eve before a holiday weekend! he said his people would start working on getting the IVSM set up for me. Well, then a few hours passed, and ive heard nothing. double vision and vertigo increasing majorly.

Called doc on-call from his office. He returned my call - and he was familiar with the sitch - b/c when i called office at 4:45, the lines were being directed to emergency on call doc - and i told him what was happening. well 10 mins later my neuro called. i assumed he had spoken with my neuro, but no, my neuro started the process for the ivsm. i asked, what happens in i cant g it over the weekend? do i just suffer? no answer.

so, at 8:30 i paged the on-call doctor and he called me back. he felt genuinely bad that this was happening and no relief in sight. he wanted to do have oral solu-medrol - that thought freaked me out - he said there is a liquid form that i can drink (but to mix in smoothie or something). He said he'd look for a pharm that had it.

CVS, my pharm called a little bit later and said they had the rx filled for me. it is pill form prednisone - 20 pills a day to total 1000mg (1gram) of prednisode a day. the pharm kept telling me how unusual and what a high dose it is but that he kept asking doc and doc was fine and explained it to him. lol. the pharm only had 79 of the 100 pills i need. the rest will be in on tues. i hope this oral form works. the ivsm was great, no real major side effects.

i took my first dose - 10 nasty tasting pills - at 9:20pm. then at 10, i took my night time meds (ambien and ativan). Got into bed - can barely hold my head up - im feeling so lousy from the sx of the exacerbation. was in bed for 20 mins, then i could deal or sit still. so now im sitting back in living room. im in agony because my body and brain just want to sleep.

it's 2:05am. i took another half of sleep pill in hope that it works. i need to be up at 9am because i have a 2hr session with a client at 10. then i have a 2 hr consultation group with my colleagues. unfortunately,t hat drive is further away, so i dont know how i will get there. i can drive shorter distances - i will wear an eye patch to help eliminate the double vision. ugg.

sorry, im just whiny right now. im miserable. someone come hit me on the head with a big rubber mallet.
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Unread 06-03-2008, 10:49 PM   #17
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Quote:
Originally Posted by docwithms View Post
I'm not sure if this will post right as I've never done this before but while searching for high dose prednisone in MS I came across your entry. I am a physician and have taken 1000 mg prednisone a day for 3 days ever 3 months for the past year and just found out that my MS lesions have regressed or disappeared?!?!? My neurologist always had me take my prednisone starting very early in the morning so I never was up all night until maybe the last day and then I was just up late, but very happy and productive! Talk to your doctor about the timing and also about giving you something to help you sleep during the times you're on Prednisone. Do you know of any literature supporting this high dose therapy? I stopped a few months ago because I was worried about steroid related complications such as avascular hip necrosis and also because I just had an early melanoma removed. Now with my new MRI findings, I'm rethinking. My understanding was that this high dose Pred was experimental and I was using it off label.
I was part of a trial for high dose prednisone. I did have to take an equivalent of 1 gram a day for 5 days orally every 4 months. Yup, it's a lot of pills. As advised by the clinical coordinator, I took 1/2 of them at breakfast time and the other 1/2 at lunch. I didn't have too much stomach issues with them nor did I have any major side effects other than puffing up like a puffer fish. lol.

I tolerated the oral 'roids far better than the IV. The IVSM, even at a slower drip rate of 1 gram over 4 hours, still make me sick.

Red - I hope you are doing much better now. You are almost 1/2 way through your 1st year and, as many will agree, the 1st year can be the toughest.
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Unread 06-03-2008, 11:59 PM   #18
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I finished the steroids on Saturday (5 days at 1000/day, 2 days at 500, then 2 at 250). I'm SO glad to be done with them.

However, I'm not sure they had much effect on the actual exacerbation. When I've had the IVSM it helped relatively quickly. I am debating calling my doctor tomorrow to see about doing the IV. Part of my problem is that I had gastric bypass surgery a few years ago....and as such, I don't always absorb pills fully.

As for being half way through my first year....sigh. Tomorrow will actually by 5 months.

If you haven't seen my HiCy post - I just returned from visiting the doctors at Johns Hopkins. I will be undergoing HiCy/Revimmune treatment as soon as possible (end of the month). I am declining too quickly to just sit still.

In the meantime, I'd really wish this double vision and numbness would quit it!

~Keri

ps/I will never touch those oral steroids again!!
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Unread 06-04-2008, 07:25 AM   #19
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I thus far have refused ALL attempts at IVIG and oral steroids for this stupid disease. I am just not willing to put up with all of the added side effects that go with it.

I hope you feel better. Lemon drops for the mouth nasty taste, and I would really see someone about a taper. Dropping off steroids with no taper can make your adrenals go bananas! The sleeping part is tough. THey should have found a sleeping pill for you. Valarian root is a valium type substance that can be bought in most herb sections of the vitamin isle. That should help you sleep.

feel better quick.
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Unread 06-04-2008, 10:43 AM   #20
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I'm glad you're feeling better redpenguins. Coincidentally, I was a gastric bypass surgeon before I had to retire due to MS. Be very careful with the oral steroids, it can wreak havoc on your pouch/anastomosis. Be sure to tell you're bariatric surgeon about the oral steroids and ask her/him about being on a gastric mucosal protective agent (like a PPI - prilosec/prevacid/omeprazole/etc or H2blocker-zantac/pepcid/etc. I see you're in southern california, I'm in a great support group in Newport Beach, interested??? Between the high dose steroids, MS, and gastric bypass, we need to talk!
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