Finally feeling better

[chelsmom]

finally feeling better

Some of you might remember my introduction a couple weeks ago, my daughter is 16 and was dx'd with crohn's Feb 10th.. she also has rett syndrome and is non verbal. I'm so happy to report that she's had a good 4 days, seems to really be feeling better on prednisone and pentasa. She has gone to sleep on her own without medication for the last 4 nights, that hasn't happened in months.
She's down from 20 mg of prednisone 2 times a day to just once a day and is also on pentasa. Other than some manic times she hasn't shown side effects, but I understand that can come during the weaning?
I've read alot of tips from you all and I sure appreciate it!
Thanks,
Tammy

 

[Crohn's 35]

Great Tammy! You must be so relieved to get her calmed down in being ill. I am on Pred now (again) 40mg for two weeks and then 5mg every week. Short treatment. Usually the longer the time on Prednisone and amounts are harder on the body as you taper, and most people taper slow. Pentasa is mild too so that helps the inflammation. Good to hear she is ok. Keep us posted ok. Glad you let us know!

 

[My Butt Hurts]

Hi Tammy-
I think I must have missed your intro thread. Glad you found us, and that we can be of some help to you. Everyone reacts differently to meds. I know that some people have complained of joint pain when weaning off of pred, but I had no side effects when weaning. Hopefully your little won't either.
Welcome to the forum!
MBH

 

[soupdragon69]

Hi Tammy,

I did read your intro thread but never got a chance to reply so here I am now!

Very glad your daughter is improving and that you are all able to get some much needed rest.

This forum is a wealth of info and thats what is so great about it - every single person here has something to contribute no matter how small they think it may be it could mean the world and quality of life difference to another.

Keep posting and keep us updated on how you all are doing.

Well done for coping and keeping going too! ((hugs))

 

[imisspopcorn]

Good news Tammy...I am so happy to hear she is able to sleep.

 

[Astra]

hey that's great news Tammy!
been thinking of you both all week, and hoping you get some rest, I'm tapering now too, but it has been a great med and well worth the side effects that came with it! It's a small price to pay.
take care
Joan x

 

[chelsmom]

Thanks so much everyone for your kind words, you all are a great group of people and it's wonderful to have you here. I'll be back
Tammy

 

[chelsmom]

Well, I'm back, not sure if I should have started a new thread or not but I thought if I continued from this one, some of you would remember me easier . Astra101 I'm hoping you'll see this for sure, you've been on Prednisone about the same time as my daughter. This weekend she started feeling miserable after 2 weeks of pure bliss. She's on 15 mg of pred. once a day tapering by 5 mg over the next few weeks. She's not sleeping good and kind of agitated, doing alot of moaning/whimpering. I don't think she's in all out pain like before but things aren't right. Any idea's out there?
Thanks,
Tammy

 

[Astra]

Hi Tammy
Hope you are both ok?
As this is my first time on Pred and all new to me, I'm not really sure what to expect to be honest. I am on 20mg now this week and the only symptom is extreme fatigue, and my eyes are sore, I've had them checked with a pharmasist and got eye drops, but I believe this is a side effect of Pred. When I first started Pred, I was euphoric, manic, wired and an insomniac!
I was warned about feeling down and depressed whilst tapering, so it could be that? But because Susan is non verbal, how about a visual to ask her, draw a happy face and a sad face? Ask her which one, and say 'Susan feels happy or sad' and let her point to the one. (I teach children with ASD)
Also my pharmasist gave me Nytol (active ingredient diphenhydramine) which is great, it helps me to sleep.
I still have no pain so I'm sure Susan won't have neither, sorry if I've not helped, wishing you both well
love
Joan xx

 

[chelsmom]

Thank you Joan! I think she is in the manic, euphoric, wired stage, though, she was like that at first, for the first 1 1/2 weeks on pred, the for the next almost 2 weeks, she was spectacular, made school every day and had the best reports she's had in about a year or more. It was heavenly, then Sat. things fell apart and she started in with the manic, insomniac part again. I'm glad to hear you're in no pain because I truely think she is pain free that way, which is great....I'd take manic over those days of pain . Thanks for your tips, I sure appreciate the advice.
Take care,
Tammy