The steroid junkies' perfectly unscientific medical trial

[petitpas]

My doc has two treatment levels dependant on how high your levels are. Mine he considered high so I am on steroids. Had my levels been very high I would have been offered ivig or intralipids, too. So over here steroids-only are considered the less risky treatment. And it's cheaper.
By the sounds of it, you really need consultation with a specialist to answer your questions and arrange your treatment. None of these treatments are without risks so should only be taken under medical supervision.

Wishing you good luck xxx

 

[Carmina29]

My blood draw was peripheral as well. Most of the ranges you see online are peripheral blood. I don't think 11% is really high based on what I have read. Heck, as far as I know they are considered normal, even if in the high range. What part of the country do you live in? I'll see if I can find an RE for you that does intralipids.

Fair warning, it's not covered by insurance and each treatment costs me $750 so it's a bit pricey.

Many many many thanks. You made me feel so much better. You took a stone out of my heart!

 

[Mon_n_john]

My blood draw was peripheral as well. Most of the ranges you see online are peripheral blood. I don't think 11% is really high based on what I have read. Heck, as far as I know they are considered normal, even if in the high range. What part of the country do you live in? I'll see if I can find an RE for you that does intralipids.

Fair warning, it's not covered by insurance and each treatment costs me $750 so it's a bit pricey.

Many many many thanks. You made me feel so much better. You took a stone out of my heart!

Aww, no problem. Maybe you should get a second professional opinion to see if you even need the intralipid. Best of luck to you!

 

[LeeC]

Hi Pip.

Yep, I had all those sides on my last cycle of steroids, was really bad first few days taking 20mg, felt very manic and irritable. This month, I was VERY hyper first day, had 3 hours sleep and was extremely irritable with dh too, I think it calmed down slightly after a week last time so hoping it settles this time too.
I'm testing Sun/Mon with an EPT so I can get the hell off them, I'm sort of worried about doubling the dose and thinking if I get BFP I will stagger it for a few days to build up in my system.
The joys.

Keep me posted on how you're feeling and we can compare notes.

And yeah it's not s bad if you have pre-warned people. Quenby said I had to make people close to me aware so thet could recognise any dramatic manic or depressive episodes. I've only told dh this time though.

Catch up soon x.

 

[LeeC]

Hello to everyone else. Mon n Jon, Carmina and Beachlover.

I'm looking forward to sharing all of our experiences, is everyone on prednisolone?

Good luck to all xxx.

 

[beachlover1]

Girls, my big problem so far with this prednisolone is heaving on the taste!!!!! I am started on 40mg, thats 8 tablets! luckily im only on 40 for a week, then 30 for 2 weeks and slowly down off it!

No matter how bad the side effects get....DONT just stop them!!!! its dangerous, you must slowly taper down off them.

I know im not in this thread yet for steriod in pregnancy, but i have a suspicion i will be after i see Prof Quenby in a few weeks. The whole reason im on them is because i have to have eye surgery in 2 weeks due to an autoimmune prob

i wonder if they will beat any killer cells up anyway? if they did do they come back? im guessing they do.

wells heres to being a mad woman with hot flushes.......nothing new there then ;-)

 

[beachlover1]

Mon.....did you have the womb biopsy? or did they do a blood test for the NKc?

 

[Carmina29]

OMG LeeC you really have some reactions going on there. I wish you good luck with the treatment & have the pregnancy test positive soon!!!

The sides effects to the medicine scares me the most but I see some of you take it for a while. I guess this side effects last until the body gets used with the medication but I wonder how a pregnant lady may feel on Prednisolone, since you have to deal with raging pregnancy hormones. I guess will be hard to taper down during pregnancy. I have so many questions in my head but I guess sometimes is better not to think so much and just try the treatment.

 

[Mon_n_john]

Beachlover, I only had the NK blood test, no biopsy.

And I'm pretty sure I'm the only one here not taking steroids. Doc says I don't need them.

 

[petitpas]

Lee, same here: I am planning on testing Monday, I think.
Today has been much better. Maybe because I have just been for the most amazing massage ever and now I am totally chilled
I booked it through groupon. Obviously I had to tell the lady I'm on steroids and why. She was very understanding as she lost her first three pregnancies before going on to have three children.

I think that in terms of pills I'm lucky as I only need to take 1x 25mg/day. I don't even need to up the dose when I'm pregnant! At least I don't think so? Hm, I'm going to dig out my instructions when I get home
I hope I'm right as I am busy enough remembering my five pills every night (pregnacare, extra folic acid, extra vitamin D, extra omega 3, baby aspirin) as well as my progesterone suppository.

I am quite proud to be able to swallow all 5 evening pills in one gulp. Hands up who else has become a druggie pro!

 

[beachlover1]

defor a druggie pro ;-) I have those little section pots with week days on and each week i count out my pills.....I had 12 for brekkie, inc my aspirin and high dose folic acid

Im bloody rattling!!!

 

[mandy1971]

good luck everyone.. x

 

[padbrat]

hey all... found you at last!!

Intro: 6 losses - usually 11ish weeks. Believed to be down to a genetic issues that kills male babies... tests on my last 2 showed I was having boys and they died because they inherited my translocation.

My Obs is awesome and has now agreed that I will have 25 mg predisdone (or however you spell it) lol to add to the aspirin, high dose folic acid, cyclogest and fragmin.... I haven't been tested for NK cells, but think my lovley Obs is just throwing everything at me to try and get a baby to stay! lol

Am off for treatment in Cyprus end of Oct... I will take the steriods 2 weeks before the treatment starts and then the day of the treatment I will start all of the other stuff (Cyclogest etc). Am currently on the thyroid meds, aspirin, high folic acid.

 

[petitpas]

Hi padbrat!
I'm so excited about your treatment and love that your doctor is throwing everything at you just in case. It is going to work this time! xxx

PS: Time to change your status, maybe?

 

[LeeC]

I can't wait to hear the first success story on this thread and keeping my Fx'd for all us steroid junkies that there will be many more to follow.
Right, that's my midnight hour ramblings over, off for a 5 mile run to burn off this new found (if not inconvenient) energy :/
Lol...
x

 

[padbrat]

hehehe HUbby is also makingme go for a run today... he is a triathlete and phys mad... and has now decided that I shoukd be in peak physical shape for the treatment... urrghhhhhh. I would much rather slob on the sofa and eat cheesy puffs.

Not quite time for status change Pip.....

 

[petitpas]

Fair enough, pad

My DH thinks the steroids are going to give me muscles. I've pointed out that they are corticosteroids, not anabolic ones

Oh well, I might not be a runner but I am getting regular exercise now, too. Mr S said that I can continue with gentle exercise in my next pregnancy, which I am excessively pleased about. I've noticed that it really calms my mind down.

 

[Lamburai1703]

For what its worth, I have NEVER had any side effects from the prednisolone other than after coming off them I feel a bit poorly! Sort of like a cold is coming but it never develops into anything more than the snuffles. You manic people must be much more sensitive than me!

 

[padbrat]

Heavens ladies... he took me hill mountain biking for an hour and then weights... nothing like being thrown in the deep end...am knackered!

 

[LeeC]

Lambs.

Very true. I suffer from bouts of mania although infrequent they stem from my anxiety and stress.
This is why my psych needs to monitor me.
It does generally calm down after first week but I am a bit anxious for when I need to double up the dose but tbh if it means I get my 4eva baby it's worth it.

How is everyone doing?

X