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Hip replacement and ITP and prednisone taper

  • karenr
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  • Diagnosed in 2000, at 59, after being on moderately high doses of NSAIDs for arthritis. Splenectomy and rituxan both failed (2004). Did well on prednisone till summer 2018--then terrible reactions. Promacta since 11-19.
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6 years 2 weeks ago #67571 by karenr
I've not been on the forum much lately because I'm 20 days out of hip replacement. Now that I'm finally feeling almost human again, I'll describe the ITP component in this surgery in case it's useful to anyone contemplating surgery or in case anyone has comments or suggestions. In 2002 and 2012 I had knee replacements without any ITP complications. I was diagnosed in 2000 at age 59 and have treated mostly with prednisone all these years--without real difficulty until the summer of 2018, when my body turned against the pred. (I posted about this and got helpful feedback.) Since then, I've been on a difficult taper. I began Promacta, which upped my platelets to 615K, at the highest. Hema experimented--went from 50 mg Promacta every other day to 25 every other day, meanwhile dropping slowly the prednisone. When platelets dropped to 16K in March, hema raised promacta dose to 50 mg/day. Platelets ranged from low 100s to 200K. Hema hated to drop promacta further while I was dropping pred dose.

Before the surgery, I had, with difficulty got down to 5.5 mg pred/day. I have had the constant dosing advice of my endocrinologist during all this. Just before the surgery, I was given, like other patients, 100 mg hydrocortisone. A few hours after surgery, I took 20 mg of pred, 10 mg next day, 7.5, the next, back to 5.5 the following--but I felt really terrible on the low dose. I didn't want to lose all the effort of getting to 5.5, so I've maintained that, but having both the post-surgery pain and the pred-withdrawal symptoms have made my recovery really grim. I'm having fewer pred-withdrawal symptoms now, so I think I'll be able to eventually drop even lower, but not for at least couple more weeks and then very slowly. Endocrinologist will run adrenal tests once I get to 5.25 or 5. It's pretty clear that my adrenals aren't working right, however.
Surgery has always raised my platelets for 4-8 weeks. For 2 weeks I was on Lovenox, a blood thinner, so I didn't worry much. Expressed my concern to hema when platelets reached 516K two days ago. Hema is worried about lowering Promacta dose too quickly, so I'm now on 25/50/50 mg. I think he'll be agreeable to my lowering the Promacta dose more if my numbers stay high. Weird to have to worry about too-high platelets!
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6 years 2 weeks ago #67572 by MelA
You have had quite a time of it Karen - hope that you can continue to decrease and eventually get off prednisone! I know nothing about Promacta so can't comment or help you there. I'm glad your hip surgery was successful, hope your pain has decreased if not gone completely and the rest of your recovery goes smoothly!!

Just before the surgery, I was given, like other patients, 100 mg hydrocortisone.

Karen what do you mean by you were given 100mg hydrocortisone "like other patients"?

"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
  • karenr
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  • Diagnosed in 2000, at 59, after being on moderately high doses of NSAIDs for arthritis. Splenectomy and rituxan both failed (2004). Did well on prednisone till summer 2018--then terrible reactions. Promacta since 11-19.
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6 years 2 weeks ago #67573 by karenr
I was told all hip replacement patients were given a dose of hydrocortisone before surgery. I don't know if they all get 100 mg, or if it is determined by weight. I've been told I'd receive hydrocortisone before other surgeries too, so I think it's pretty standard practice.
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6 years 2 weeks ago #67574 by MelA
That is interesting - I had knee replacement this year and I don't believe I had it.

Take care now!

"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
  • Hal9000
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  • Give me all your platelets and nobody gets hurt
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6 years 2 weeks ago #67576 by Hal9000
Replied by Hal9000 on topic Hip replacement and ITP and prednisone taper
Oh my, hip replacement. Glad 20 days has put you into feeling more normal. My mother broke her hip this past Sunday. Has a plate to rejoin it. Was moved to 'rehab' today. I know from reading on the subject that replacement is a much bigger deal than a break. Hope recovery continues to go well for you.
On the 516 count. Are you thinking it went that high because of the Pred pulse? Or, that an operation on bone has contributed most - like with knee replacement?
Is that hydrocortisone or hydrocodone? AFAIK my mother got hydrocodone (for pain), but don't know for sure.
  • karenr
  • Topic Author
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  • Diagnosed in 2000, at 59, after being on moderately high doses of NSAIDs for arthritis. Splenectomy and rituxan both failed (2004). Did well on prednisone till summer 2018--then terrible reactions. Promacta since 11-19.
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6 years 2 weeks ago #67578 by karenr
Hal, it was hydrocortisone, the steroid. I think my endocrinologist said 100 mg of hydrocortisone injected equals about 20 mg of prednisone taken orally.
  • 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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6 years 2 weeks ago #67580 by mrsb04
Any patient on long term steroids will generally be given hydrocortisone pre major surgery
  • karenr
  • Topic Author
  • Offline
  • Diagnosed in 2000, at 59, after being on moderately high doses of NSAIDs for arthritis. Splenectomy and rituxan both failed (2004). Did well on prednisone till summer 2018--then terrible reactions. Promacta since 11-19.
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5 years 11 months ago #67660 by karenr
Just wanted to report that there IS life after hip replacement! Now that I'm 5 week out of surgery, I feel almost normal. I don't dare decrease my 5.5 mg/day of pred yet though. My Promacta dose is alternting 25 and 50 mg/day. (In my case, night!)
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5 years 11 months ago #67662 by MelA
Of course there is! And I'm glad you found out! My son's mother in law has had both of her hips replaced - they say a hip is easier than a knee [speaking of which, my left knee will be totally replaced next month, right knee was done this past Feb]
Glad to hear all went well and you are doing well!

"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
The following user(s) said Thank You: karenr