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Steroid question

  • midwest6708
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  • ~ Janet ~ Diagnosed Sept. 2008
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11 years 4 months ago #44003 by midwest6708
Steroid question was created by midwest6708
Are the side effects of steroids cumulative?
That is... Is a long period of treatment at a moderate dose just as damaging as a high dose for a shorter duration?

I've been taking an average of 15-20 mgs for 1 year straight. It was raised to 30 mgs last Wednesday. I've had two episodes of what I believe to be atrial fibrillation in the past two days and can't help but think it's related to that increase.
I will be seeing a cardiologist tomorrow.

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  • 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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11 years 4 months ago - 11 years 4 months ago #44004 by Sandi
Replied by Sandi on topic Steroid question
Janet:

Yes, that could do it. I had the same thing going on at that dose. Oddly, it seemed to happen right around the time it was time to take the pills. It's probably not a permanent thing (at least I hope not). Many people have heart flutters on Prednisone and it goes away.
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  • midwest6708
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  • ~ Janet ~ Diagnosed Sept. 2008
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11 years 4 months ago #44005 by midwest6708
Replied by midwest6708 on topic Steroid question
Thanks so much, Sandi.
I agreed to NPlate last Wednesday with the aim of getting off prednisone ASAP. But I haven't heard anything about insurance approval yet.
I'm hoping maybe an interim beta blocker might help the arrhythmia until I can stop the pred.

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  • 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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11 years 4 months ago #44007 by Sandi
Replied by Sandi on topic Steroid question
I don't know if they would prescribe that without further testing. Let me know what you find out! Good luck.

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11 years 4 months ago #44012 by CindyL
Replied by CindyL on topic Steroid question
When I was on the high dose of pred, I had the same thing. Even saw a cardiologist too just to have it checked. When I dropped the dose, it went away. Good luck, Janet, hope everything is ok.

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  • midwest6708
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  • ~ Janet ~ Diagnosed Sept. 2008
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11 years 4 months ago #44037 by midwest6708
Replied by midwest6708 on topic Steroid question
The cardiologist couldn't say exactly what the 'episode' was without it being recorded on a monitor, so I have to wear one for 30 days (maybe less). Covering his bases. He also prescribed a beta blocker to help with the palpitations and BP increase. He wouldn't say if it's definitely from the pred or the increased dose, but I'm pretty convinced it's all related. I lowered the dose on my own to 25 mgs.

It's been 6 business days since I agreed to NPlate. Called the MD's office this morning, because I'd heard nothing from them. There's still no insurance approval. Worried about that, because I have no Plan B.

The cardio is Dr. #6 who thinks I should remove my spleen.
This is so discouraging. I am NOT a good sick person.

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  • 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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11 years 4 months ago #44049 by Sandi
Replied by Sandi on topic Steroid question

midwest6708 wrote: This is so discouraging. I am NOT a good sick person.


Very few people are! It can take a while to get approval, I've been there so many times. Try not to worry in the meantime. If it doesn't go through (and I'm sure it will), you'll find another plan. You have time for now.

I'm glad the cardiologist is monitoring you well. As you taper the Prednisone, your BP may get too low. How high was your BP?

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  • midwest6708
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  • ~ Janet ~ Diagnosed Sept. 2008
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11 years 4 months ago - 11 years 4 months ago #44053 by midwest6708
Replied by midwest6708 on topic Steroid question
BP has risen within the past 5 months or so. From my normal of 125-ish/72-ish to high 150s/90. At the doctor's office it's been running near 180 systolic. It's my pulse that's been the main issue for me. It runs 110 resting, causing anxiety off the chart. Even if the beta blocker adds extra pounds to my prednisone belly, it will be worth it to feel more calm.

The beta blocker is a low dose of 50 mg/day. Typical starting dose is 100, I think.

Thanks for letting me know the NPlate process can often take as much time as it is. Your willingness to help is very much appreciated.

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  • 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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11 years 4 months ago #44060 by Sandi
Replied by Sandi on topic Steroid question
It could just be that it's time for blood pressure meds. That happens to just about everyone. When I was diagnosed, my BP was about the same as yours was. I'd already been on the same dose of Prednisone for about 5 years, so it wasn't that although it may have contributed. BP meds sometimes have to be adjusted to get it right and sometimes it takes more than one.

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  • midwest6708
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  • ~ Janet ~ Diagnosed Sept. 2008
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11 years 3 months ago #44173 by midwest6708
Replied by midwest6708 on topic Steroid question
Of course, it might just be time for BP meds; but it just seems too coincidental that it got so high within the year of continuous steroid use. And to have two terrible "attacks" of arrhythmia following a 50% dose increase can't be random chance.
At any rate, I haven't had a tachycardia episode since the first dose of beta blocker.

I finally got word today that my insurance approved NPlate. I should be having my first dose tomorrow, if feeling well enough. Hubby brought home a nasty cold from a fishing trip last week. Despite keeping a room-span away from him at all times, I got it anyway. Thinking about any chemo patients that might be in the office, I asked the nurse if I should stay home till I'm less contagious. She said tomorrow won't be busy, and I can still come if I want.
Please wish me luck. :unsure:

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11 years 3 months ago - 11 years 3 months ago #44201 by poseymint
Replied by poseymint on topic Steroid question
In my experience with prednisone- yes, for certain my high blood pressure was due to the drug. Blood pressure increase is a common side effect, mine was through the roof when I was on a high dose. Blood pressure went down as I tapered.

And back to your original question: a moderate dose for a long time is WORSE than a high dose for a short time. I have been on a low dose for a several years. I'm so sensitive now that when I increased the dose from 7.5mgs up to 10mg (because my count was 2K) my blood pressure went up over 150, I gained weight, had anxiety, hair loss, bad heart burn- just miserable. In fact when I was on 40-80mg in the beginning I felt better than 10mg now.

That said, I'm not sure that everyone experiences the increase in side effects over time. I don't hear it talked about much. Have you gotten a bone density test? I lost bone from prednisone- not happy about that. But I am happy that I have tapered down to 1.25mg. yay! I have to taper slow or I get fatigued, depressed.

NPlate has had the opposite effect. The side effects were kind of bothersome at first then they went away over a period of 3-4 weeks. That was nice! but everyone of course has a different experience, many people have no side effects at all. So far I think NPlate is just great. good luck

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  • midwest6708
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  • ~ Janet ~ Diagnosed Sept. 2008
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11 years 3 months ago #44204 by midwest6708
Replied by midwest6708 on topic Steroid question
Many thanks for the rah-rah, Posey.

I had had a DEXA scan in Dec. '12. My hemo ordered another in Mar. '14 to check for steroid damage. Bone status was actually improved a bit over the 12/12 one. But March was a long time ago, and it could be worse by now.

I take it you're an NPlate newbie? I looked up your archived posts and found the one where you detailed the side effects you get after an injection ... short term insomnia and headache.
I decided to go in for my shot yesterday, because I've been so anxious to get started. The nurse said the patients treated in their practice all got improvement from it had no side effects; but when I asked how many people that is, she said "about 3". But she implied , and at least one of them has been holding even after discontinuing it. Which is what the newest studies seem to bear out. Anyway, I digress.
I've had no obvious side effects, but it's hard to tell. The cold symptoms are pretty much the same as them. I'll have a better idea what it might do to me after next week's shot, as long as the cold is gone.

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  • 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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11 years 3 months ago - 11 years 3 months ago #44243 by Sandi
Replied by Sandi on topic Steroid question
I've been on 10 - 15 mg's of Prednisone for about 9 years straight and have not noticed an increased sensitivity to it or an increase in short-term side effects. I am having problems with the long-term side effects though. My blood pressure went up pretty high about five years ago, but I figured I just hit the point in my life where I needed BP meds. My husband got to that point about two years before I did and he is not on Prednisone.

I'd worry about the fact that as you taper Prednisone, your BP might drop if the rise is indeed due to Prednisone. If you start feeling dizzy, take your BP and call your doctor.
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  • midwest6708
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  • ~ Janet ~ Diagnosed Sept. 2008
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11 years 3 months ago #44296 by midwest6708
Replied by midwest6708 on topic Steroid question
Reporting in...

Last Friday, on the day of my first NPlate dose, count was 15.
Today it's 60!
I certainly didn't expect so much so soon, especially not during a week when I've had a viral illness.

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  • 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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11 years 3 months ago #44297 by Sandi
Replied by Sandi on topic Steroid question
That's perfect! Hopefully you can maintain that on a low dose.

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11 years 3 months ago #44298 by poseymint
Replied by poseymint on topic Steroid question
Midwest- that is great! And still no side effects? good for you. What dose did you start out with?

I started on a very low dose- less than 1mcg. I also had a fast response, in just a few days all my bruises were gone. Began with platelets at 2K, next week 12K. My dose now is 3mcg and counts hover around 50K.

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  • midwest6708
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  • ~ Janet ~ Diagnosed Sept. 2008
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11 years 3 months ago #44299 by midwest6708
Replied by midwest6708 on topic Steroid question

poseymint wrote: Midwest- that is great! And still no side effects? good for you. What dose did you start out with?


It's the standard 1 mcg/kg ... 80 mcg for my weight.
Interesting that your bruises were gone in a few days. In the past 3 days, I've actually had as many spots/bruises/blisters/wet bleeding as I've ever had at any count. I was sure I must have hit rock bottom, the way my body looks. I was even going to ask the forum whether NPlate is known to trigger this kind of bleeding or a crash before it starts working, but decided to wait and see what the number was before sounding an alarm. I never would've dreamed this.
Doing my happy dance with fingers crossed here. :silly:

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  • midwest6708
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  • ~ Janet ~ Diagnosed Sept. 2008
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11 years 3 months ago #44458 by midwest6708
Replied by midwest6708 on topic Steroid question
Count at 1st 80 mg injection - 17.
Count at 2nd 80 mg injection - 60.
Count today - 345 ! (Unsure whether to be worried, thrilled, or a bit of both.)
Today's dose was reduced by half to 40 mg. Pred dose reduced from 25 to 10.
Consult doc a week from today.

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  • 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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11 years 3 months ago #44461 by Sandi
Replied by Sandi on topic Steroid question
As long as your med doses were reduced, you should be okay. I'm glad he's not trying to keep you up there! Happy for you!
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11 years 3 months ago #44466 by poseymint
Replied by poseymint on topic Steroid question
good for you! you are really responding and on such a small amount! will be interesting to see where it goes from here!

Since you are tapering pred (yay!) I'll just tell you the symptoms of low adrenals that I've experienced- fatigue, hard to get up in the morning, body aches like the flu, joint aches, and feeling like you can't handle anything- I can't take it anymore! haha Those are my signs that I'm perhaps tapering a bit too fast. Hopefully you won't have all that.

When my adrenals start to work again I get a sense of well-being, like ahhh.. all is right with the world. love that feeling.
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