posted
I just got out of the hospital. I was admitted with ITP- Idiopathic Thrombocytopenic Purpurea
That is VERY low platelet count, 7,000, when it should be 140,000 to 430,000.
Steroids are the treatment. I was taken off of every supplement and my lyme abx (ceftin and zithro) because drugs can cause ITP. So can tick borne diseaes.
Anyway, I'm on 60mg per day of prednisone, or I risk internal bleeding, oh how nice.
Truthfully, my llmd had just taken me off zithro days before and we were likely going to cut ceftin in a month or so, but I am terribly frightened of a relapse.
Any experience, ideas, etc?
Posts: 524 | From Hudson Valley, NY | Registered: Jul 2007
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posted
I would keep your LLMD in the loop. Typically, from what I understand, it's important to be on abx during steroid use if steriods are absolutely necessary.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
i deeply regret to have taken prednisone. thats all i can say.
Posts: 226 | From earth | Registered: Sep 2007
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Dawn in VA
Frequent Contributor (1K+ posts)
Member # 9693
posted
I have had to unfortunately take pred on several occasions for asthma.
I agree with six- make sure your LLMD knows about this and certainly consider going full-out on a good combo antibiotic treatment. Is there anything you can take aside from the two abx you've had to drop that would achieve this?
I didn't suffer the consequences of pred on abx's nearly as much as I had without being on a full armory of treatment. Still had some relapse, but not as severe.
My quick 2 pennies regarding infrared light while on prednisone: I have a Lightworks (infrared) machine that I use a lot anyway, but use a heap of a lot (set on frequency "D") while on pred.
I have noticed that my knees and ankles don't hurt as much as they do when I'm on pred and don't use the Lightworks.
-------------------- (The ole disclaimer: I'm not a doctor.) Posts: 1349 | From VA | Registered: Jul 2006
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posted
Have a call in to LLMD. Awaiting info. Truly, I'm scared to be on abx right now. And I'm scared of supplements.
I feel like I just need to "clean out".
Posts: 524 | From Hudson Valley, NY | Registered: Jul 2007
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cactus
Frequent Contributor (1K+ posts)
Member # 7347
posted
If you're at risk for internal bleeding, and this is necessary - then take the steroids and keep your LLMD in the loop, just like you said you're doing.
Will it make you feel better to know that I've been off of abx since Feb (after 4 years treatment), and have had no choice but to take steroids?
I'm not at a high dose - taking it for Addison's Disease so keeping it to a bioidentical dose - but at one point I did have to take a higher dose of prednisone (for a stress dose) and was horribly nervous about a relapse.
But... No clear cut relapse. Just the same lingering symptoms which may or may not be Lyme-related.
Hang in there, and follow your intuition about what your body needs.
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
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disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
My mother-in-law was admitted to the hospital after she had taken Ceftin and her platelets plumetted to a very dangerous (low) level.
The ceftin might have/probably caused your platelets to have gone down so low as well.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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Ocean
Frequent Contributor (1K+ posts)
Member # 3496
posted
Catskill,
I'm sorry, I understand your concern and frustration! However, obviously, the steriods are something that will save your life for the time being. 7000 is a critical number. Any idea how many days you will need to be on them?
I am so sorry that you are going through this. Thank you for posting about it! My brother is on Ceftin for Lyme right now and I am going to ask him to go to his pcp for a blood test to make sure he's ok.
posted
My llmd took blood work like clockwork every 8 weeks and my platelets were in the 230,000 range on ceftin for over 1 year. Who knows what made it change. Perhaps other supplements, environmental exposure or something else.
What is clear is that ceroxefime is one of the medications that can cause ITP.
My platelets are now at 71,000 and I've been sent home. I still don't feel quite right, but better than 3 days ago.
I am on 60 mg prednisone for 2 weeks and then they will start to taper me down. My hemotoligist says it could be weeks, if not months and for some people years. I'm hoping for the weeks to months part.
Posts: 524 | From Hudson Valley, NY | Registered: Jul 2007
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Good luck Catskillmamala. I hope that your treatment is only of short duration as well.....seems like when things are going well something else gets thrown into the mix.
Take care of yourself, Feelfit
Posts: 3975 | From usa | Registered: Aug 2007
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posted
Spoke to my LLMD today. He completely agrees with cutting all abx tx right now- no choice with life threatening condition. Too complicated to switch to other meds.
He will see me in 3 weeks, 1 week after my first hemotologist visit and beginning tapering.
I told him I hope he is discharging me as a patient at that visit. He said he hopes so too.
We will just play it by ear. So far I do not feel brain fog, joint pain or fatigue like I did with the lyme. I am a little tired, taking the rest of the week off of work and napping in the afternoons. That being said, I did cook a great dinner for my family of 8.
Ahh, it's good to be home. There's no place like home.
Posts: 524 | From Hudson Valley, NY | Registered: Jul 2007
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