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A wee update.

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14 years 6 months ago #13368 by shen08
A wee update. was created by shen08
Hey am back with a quick update. My bone marrow came back okay, Sandi the doc is of the impression that healthy bone marrow will mean if my platelets dont pick up in 6 months or so that I should consider splenectomy. However I disagree, as I have become quite attached to my spleen am pretty sure it serves a purpose.

She has put me on 200 mg of danazol, am praying this works otherwise ill be back on immuno suppresants. PC was 22 today, so hopefully it stays there or increases. As far as I know danazol is a hormone type treatment for endimetriosis (sorry for bad spelling).

Dont have to go back for another three weeks thankfully.

Hope you are all well.
  • 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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14 years 6 months ago #13370 by Sandi
Replied by Sandi on topic Re: A wee update.
Glad to hear the good news! I knew it would be fine. Healthy bone marrow shouldn't = splenectomy. If your counts and controlling them get to the point that your quality of life is affected, then you consider it. If that never happens, you don't have to.

Good luck with Danazol. It can take a long time to work, if it does at all. It's not one of the best known for platelet response. I tried it and broke out in hives. The main side effects that people complain of are acne and mood swings.
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14 years 6 months ago #13397 by shen08
Replied by shen08 on topic Re: A wee update.
Yea from what I have read there isnt an extremely high success rate with splenectomy anyway, so mine isnt going anywhere lol. Was a bit suprised that she even mentioned it so sosoon, im wondering if it is because each drop has takin me under 10.

Dont think the doc was too optimistic but my platelets havnt dropped as quick this time as they did from the last ivig. so may as well give it a go. I already have acne from the pred, as long as that and mood swings are only side effects it beats pred hands down. I would be a bit worried as she said the side effects from other treatments can be a bit worse, and I have said that I wont be taking any treatments that might hinder the completion of my degree and being a mother. Only got 8 weeks untill Im finished uni, so I have had low platelets for that long before. Does that seem reasonable and rational?
  • 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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14 years 6 months ago #13432 by Sandi
Replied by Sandi on topic Re: A wee update.
Whatever works best for you seems reasonable and rational. I always made the treatment fit my life (if at all possible) and went for the least invasive and time consuming ones.
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The Platelet Disorder Support Association does not provide medical advice or endorse any medication, vitamins or herbs. The information contained herein is not intended nor implied to be a substitute for professional medical advice and is provided for educational purposes only. Always seek the advice of your physician or other qualified healthcare provider before starting any new treatment, discontinuing an existing treatment and to discuss any questions you may have regarding your unique medical condition.


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