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Prednisone taper - MrsB, et al

  • 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 3 months ago #63654 by Sandi
Prednisone taper - MrsB, et al was created by Sandi
So I saw my Rheumatologist today and it was the first time since our online taper fight. The online taper fight resulted in the two of us agreeing to go down 1 mg. every month until I hit 7.5. I still thought that was too fast but Cranky Nurse was in the middle and told me that I was not a compliant patient. They were not going to budge.

So my first script at the pharmacy was 9 mg's, all in 1 mg. pills. I thought, seriously? I have to count these out everyday? Whatever, I did it. The second script was for 7.5.....all 5 mg. pills. I was floored and went back to 10 mg's knowing I'd see her soon.

I brought it up today and told her what happened. She said that should not have been the way I was dosed and said that from now on I will go down 1 mg. every two to three weeks until I get to 6 mg's. I told her that was too fast. Her response and I quote, "There are no diseases that require a slow taper". I think my eyes popped out of my head. I said, "That is not the point. The point is that I've been on steroids for 13 years". She went on about how the adrenals will start back up with no problem. I just sat there and shook my head. I pushed for a month and she agreed. We'll see how this goes, but what is it about these doctors? What is the big damn hurry after all this time?

Cranky nurse had to draw my blood. She put the tourniquet on real tight and took her good old time drawing my blood. Grrrr.
  • 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 3 months ago - 7 years 3 months ago #63655 by mrsb04
Replied by mrsb04 on topic Prednisone taper - MrsB, et al
I'm rendered speechless by her ignorance, and would love to know her evidence base for making such a stupid statement.
I don't allow the use of tourniquets, I use my hand as one instead. No risk of cross infection.
  • 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 3 months ago #63658 by Sandi
Replied by Sandi on topic Prednisone taper - MrsB, et al
I'm really tempted to see an Endo for the taper, but the only two in my area are dolts. I know this because both my daughter and a friend of mine saw them for thyroid issues. I've heard others complain about them too. Plus, I cannot stand the thought of adding another specialist.

I was pretty speechless too. I should have argued more about withdrawal symptoms. She just doesn't care. I went to my GP months ago to see if they would oversee the taper. Although the PA agreed with me, she would not do it. I'm so fed up with the medical system here.
  • dru
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  • I developed hemolytic anemia in 1999 and ITP in 2005. Treatments have been splenectomy, prednisone, IVIG, and Rituxan.
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7 years 3 months ago #63660 by dru
Replied by dru on topic Prednisone taper - MrsB, et al
That is just too frustrating.
They have no idea what it is like to taper off this steroid. Mrsb posted the UK guidelines for tapering steroids. Those guidelines are reasonable and seem to take in to account the strain on a persons adrenals. Here in the US every doctor has their own idea. I think the only doctor who understands would be one who has been on prednisone.
  • 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 3 months ago #63662 by mrsb04
Replied by mrsb04 on topic Prednisone taper - MrsB, et al
Maybe it is time to add a module to medical training courses. Put them all on 60mg a day for a few weeks then make them taper fast. They would soon learn then!!