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mrsanonymous
LIF Adolescent
Member since 6/12 828 total posts
Name:
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Long Term Prednisone Ladies (Autoimmune)
Hi Ladies - wondering if anyone was on a higher/longer dose of prednisone/other steriods during IVF for autoimmune issues. Not just the usual one week dose of steriods you get for most IVF cycles.
I'm on 10mg a day to try to supress the autoimmune concerns (positive ANA, APA, ATA). Now that I have a positive beta, my doc wants to taper off. I'm nervous to go off in case this is part of what helped the cycle work. At the same time, with the risks of being on it (cleft palate) I want to get off.
No idea what to do here....any help would be greatly appreciated!
Message edited 7/24/2013 2:15:36 PM.
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Posted 7/24/13 2:14 PM  |
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AngnShaun
Sisters
Member since 1/10 21015 total posts
Name:
Ang
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Long Term Prednisone Ladies (Autoimmune)
I was on 10mg also... then down to 5mg then nothing... i just checked my emails and saw that i stopped prednisone on 6/30/12 i was between 6 &7w then. I got retested after that and everything was ok.
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| Posted 7/24/13 3:00 PM |
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TyReseGreen
Lil Prince is here
Member since 8/11 6338 total posts
Name:
Theresa
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Long Term Prednisone Ladies (Autoimmune)
I forgot my dosage it may have been 5mg once a day. I was in it until I was released.
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| Posted 7/24/13 4:31 PM |
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mrsanonymous
LIF Adolescent
Member since 6/12 828 total posts
Name:
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Re: Long Term Prednisone Ladies (Autoimmune)
Thank you both for your responses! Sounds like you both were on 5mg for the longer portion of time.
I'm going to see whether he thinks I should go down as well, but not off completely. I think that settles my mind the most. This particular doc does not specialize in autoimmune issues so I'm not sure he knows the best way to handle it.
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| Posted 7/24/13 4:41 PM |
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PennyCat
Just call me mommy :)
Member since 7/08 19084 total posts
Name:
Jib
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Re: Long Term Prednisone Ladies (Autoimmune)
Posted by mrsanonymous
I'm going to see whether he thinks I should go down as well, but not off completely. I think that settles my mind the most. This particular doc does not specialize in autoimmune issues so I'm not sure he knows the best way to handle it.
I really think you need to trust your doctor. That's what they're there for. If patients could make their own protocols, the docs wouldn't be making the big bucks! 
I was on 10mg of prednisone for my most recent IVF cycle and started to wean down as soon as I got a doubling beta. By 6wks, I was done. There's a reason everyone's protocol is different though, so you really need to speak to your dr on this one and let him decide what's best! Good luck!
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| Posted 7/24/13 7:29 PM |
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mrsanonymous
LIF Adolescent
Member since 6/12 828 total posts
Name:
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Re: Long Term Prednisone Ladies (Autoimmune)
Thanks for sharing your protocol Pennycat! Its helpful to hear others stayed on longer and have had/are having healthy pregnancies.
I only wish it were true that trusting the doctor would work. I have had multiple docs at multiple clinics and multiple protocols ... and I ended up with three failed IVF cycles. Through all of it I learned a lot about my cycles, my body, my medical issues and I did a ton of research and learned a lot from readin posts on these boards.
So...this time, I took a lot of matters into my own hands. I told the doc what meds I wanted to be on and pushed until he agreed, I took the meds when I knew I needed to ignoring his instructions at times and I even had to lie about my cycle day when I started the FET cycle. Medical degrees are great but I know me best!
I am not saying I recommend others do this...I took some chances. But I do recommend being your own advocate. No matter what ends up happening here, I have no regrets!
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| Posted 7/24/13 9:08 PM |
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PennyCat
Just call me mommy :)
Member since 7/08 19084 total posts
Name:
Jib
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Re: Long Term Prednisone Ladies (Autoimmune)
Posted by mrsanonymous
But I do recommend being your own advocate. No matter what ends up happening here, I have no regrets!
Ok well ya got me there ... I absolutely agree with being your own advocate.
I guess I was mainly just referring to my own experience where I second guessed my protocol a lot of the times .. asked to change things based on my own 'research'.. went in probably asking way too many questions ......
Then I went to my next RE and at that point, I was sort of at the end of my rope. I decided to throw my hands up and not ask a darn thing  I figured what will be will be and all my prodding in the world left me 3yrs into the journey and one surrogate down. I was just really done. I did another IVF and called it my 'stress less' cycle. You know how many questions I asked from appointment to appointment? .. .NONE  VERY much not like me!
However .. I definitely agree with being your own advocate. I guess I'm saying to do both things - which is confusing - but I suppose it's all case by case.
Good luck! 
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| Posted 7/24/13 10:17 PM |
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mrsanonymous
LIF Adolescent
Member since 6/12 828 total posts
Name:
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Re: Long Term Prednisone Ladies (Autoimmune)
Posted by PennyCat
However .. I definitely agree with being your own advocate. I guess I'm saying to do both things - which is confusing - but I suppose it's all case by case.
Good luck!
I actually get exactly what you're trying to say here...and completely agree. I think I took self advocacy to and extreme this cycle but I don't mean to say I've entirely disregarded the dr. After all...I couldn't have done the transfer without him! Haha jk He is a smart man and I do respect him.
Message edited 7/25/2013 12:15:02 AM.
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| Posted 7/25/13 12:14 AM |
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AllyMally
LIF Adolescent
Member since 1/13 881 total posts
Name:
Alyson
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Long Term Prednisone Ladies (Autoimmune)
I have been on prednisone for 4 years at 10mg. My maternal fetal doc said anything higher then 10mg increased the risk for cleft, but at 10 and lower the risk was the same as any normal pregnancy. I had to take it as the inflammation had to be under control.
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| Posted 8/9/13 3:45 AM |
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mrsanonymous
LIF Adolescent
Member since 6/12 828 total posts
Name:
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Re: Long Term Prednisone Ladies (Autoimmune)
Thanks so much for the information! Were you on for the whole pregnancy?
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| Posted 8/9/13 10:28 AM |
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