Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Finally some answers

Thank you so much Renee. I have only been married for just about 3 years and it hasn't been the easiest 3 years that is for sure. With both of my pregnancies I suffered from sever sciatica which I now think had something to do with the AS. I am sort of glad that I didn't find out about this until after having my girls because I can't imagine my life without them. Personally I think that even if I hadn't had them yet I would still proceed to have kids. The benefits far out weigh the risks. Don't let your dream of having kids change because of this disease, because at least we are now armed with the tools and knowledge that we can pass on to them if they do get it.

Thanks again, take care
Jill

How right you are Steve. Everyday I look at my children and thank God I have them. I think that the laughs and smiles and unconditional love they give makes this condition more bearable. You have no choice but to be strong and as healthy as you can for them.

I guess I should consider myself lucky that my husband has been fairly understanding in all of this. He has his moments but then we all do.
Thanks for the wake up from the self pity.
Jill

Thanks Nancy. I think I am having a better outlook on all of this now that I have had such encouragement from everyone here. I am thankful that I have my 2 beautiful girls who make me laugh and smile everyday. I am here in this world because and for them.
Jill

Hi Jill
I inherited AS from my grandad, I know my mum felt ever so guilty when I was diagnosed as she saw what her dad went through in his later years, I told her who could know she would carry it as my older sister is fine and my mums siblings are ok to.
So I see it as a slim chance of it being passed down.

THanks Sam I am feeling much better today. I think yesterday I had a moment where I felt like I had been hit with a ton of bricks. The support and understanding here has been such a blessing.
Thanks again
Jill

Hi Jill,

It might turn out that your children do not have the gene or that they will not get AS.

My parents were fine (but my dad did have back problems) and my sons are not showing any signs of having AS.

I have only recently been diagnosed by my GP after he had yet another look at my bone scan and the latest x-rays. When I had my children though, I was still in the process of getting over the fractured coccyx. I must say that I might have had a few symptoms during those pregnancies but had not ever made the connection until now.

The most positive thing about the dx is that you can stop wondering and get onto the exercising that you need to do so that you do not fuse.

Maggie

That is exactly it Maggie. I have been working with a sports therapist for the last few weeks and he is giving me a core strengthening program to do 7 days aweek at home. It started out just taking about 15 minustes but is now at 1/2 an hour. I think once I have a little more stability it'll be a little easier. My right shoulder likes to cause me problems so hopefully we'll be able to get that under control too.
Today was the first day of the Prednisone and I am feeling a little dizzy. I don't know if that is normal or not, but hopefully it'll go a way soon. I only have to take it for 6 days though so even if it is the whole time it's not too long.

Thanks again,
Jill

Hi again Jill, Oh no.. I won't give up on my dream of kids.. never! I want them too much and so does my husband. But, more now, his focus is on me to get into remission and I have to focus my energy on that too. Renee

Hi Megan, I just wanted to ask you a few questions on your prednisone usage...How long did it take for it to start working? I have been on it now for 2 days and I am not feeling any different stiffness wise. In fact yesterday I had that charliehorse feeling again but in both legs from hips to toes. Was really moodswingy, and today same with the moods but also have had a dull headache. And I feel really kind of stupid. Like my brain has gone on a holiday and the rest of my body is here. I can't type today. I have been kind of lightheaded. I don't know if these are side effects from the wellbutrin or the prednisone, but I am hoping they go away quickly.

My next question is what was your dosage? Did you take it straight through, or pulse dosing? (i think that is what my dr. called it)

The jury sure seems to be out on the effectiveness of the prednisone. From what I have read on other posts it is either a great shortterm wonder drug and other people didn't do a thing for them.

Thanks again.
Jill

Hi Jill,

I am quite familiar with Prednisone so thought I'd mention a few things about my experience with it.

I can't take any of the usual anti-inflammatories since I have ulcerative colitis, so for that reason I am not on a regular medication. I have prednisone for when I have extreme flare-ups. I try not to use it very often and am lucky enough to not have extreme flare-ups too often. By extreme, I mean not being able to walk if my sacroileac joint is flared up.

I respond well to prednisone in that a small dosage (15mg) for 2-3 days is usually enough to stop the inflammation. I respond quickly (usually within a couple of hours).

But it is just as well that a small dosage works since prednisone really affects me. After 3 days I am usually raging, very angry and irritated. I can't sleep and usually end up crying and feeling very depressed.

I have been on much higher doses of prednisone in the past for U.C. and I had auditory hallucinations (heard voices).

Prednisone has very serious side effects and to be honest with you I feel that the high doses I was on in the past changed my hormonal and adrenal system. But the changes I feel could also be to do with my age (I am 37 (female) and was 23 when I had the high doses)since a woman's hormonal system does change over the years.

My favourite side effect of prednisone is the increased energy and the feeling that I could physically do anything

I hope that it helps you to feel better, but don't be surprised if you don't feel quite like yourself, this is normal for prednisone.

All the best,
Ruby7