Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group New Meds

Hi everyone
Hope everyone is well. I went and had methylprednisolone in an IV last week, which was pretty uneventful apart from a bit of a problem with the IV. They did a blood sugar check and BP while I was there and my blood sugar was 4.7 which I was really pleased about and my BP was 100/70, which is pretty normal. At least things are good on that side of health!
All I had to do was sit there for 3.5 hours and read which was not too bad. I kinda felt tired toward the end of the day and that was about it! The next day I woke up and I looked like I was severely sunburnt (I thought my weird rash had come back again) and had a 'funny' heartbeat, which I found out later in the day were quite normal. That has subsided which is fine. I started taking Arava straight after the infusion - and that has a few unpleasant side effects . I am starting to feel much better now (I think this is due to the methylpred mainly at the moment), AS and RA wise. I have more mobility, my pain levels are low and so are my fatigue levels! I hope this works! Not so sure about the side effects, though. They are pretty much run of the mill ones but they are still not that great. I guess its a case of waiting and seeing. I think I am willing to put up with them - I just want to feel better. The fact that I can't fall pregnant while I am on this and therefore have decided to wait for another baby has raised a few eyebrows! My friend (who happens to be my partner's sister in law) has told me that I am being selfish by delaying having another child just so I can take this medication . Trust me, if I didn't have to take it, I wouldn't be! She made me feel awful . I thought she would understand, as her father has lupus. I said to her that I want to enjoy the daughter I already have and if that means taking Arava for however long, well thats the way it has to be. I am sad that I can't have another baby right now, but I think I would rather have a chance of being well and enjoy the lovely little girl I already have at the moment. If things go well a bit later on...we can try for another baby then!
Cheers,
Jess

Hi Jess,
I hope this treatment continues to help you. As far as your friend, she really has no right to judge you. You are being very responsible delaying pregnancy until the time is right for you, if ever. Your friend obviously doesn't have a clue as to what AS or the treatments for it is about. I know that doesn't help you though in dealing with her. How close are you to her? Is the friendship/relationship worth trying to educate her? If only this disease were better known and more understood, she might not be making those judgements. Hugs, Wanda

Jess, I'll keep my fingers crossed that the new treatment plan works out well for you.

It is harsh, isn't it, when someone we count on for support is less than supportive about our decisions. Really, it's not for her to judge the decisions you make, with regard to this in particular. Jess, please do not let anyone else's opinion make you feel badly about your decision. They do not walk in your shoes. You know you made a considered, well thought out decision based on your circumstances. Trust in that and nobody can make you feel badly.

Hugs,

No one has the right to judge your decision. Keep with the Areva. Pain free will let you fully enjoy the child you have. More time for new babies later. Be well. I too have had success with Areva (along with party favors).

Hey Jess,

Sorry to hear that you are hurting, but even more sorry to hear about the attitude your "friend" is taking with you. Man, that one just about made me want to scream....who in the ^$^%& does she think she is? For starters, it's none of her &*(%&*( business when, why, or how you have a baby, illness or no illness. I mean NONE of her business. I am absolutely amazed here in the States--and I have a feeling it is like this everywhere--how people who would never think of criticizing the color shirt a friend was wearing feel they are completely within their boundaries to make comments about when someone is going to start a family, or how many kids they plan on having, etc. I can't think of a more personal topic that even exists, yet you just hear these awful comments over and over.

Then, to add in the fact that you are feeling terrible right now and have been positively diagnosed with this real craphole of a disesase--and still your friend thinks she has a say in this? As far as I'm concerned, I don't care how long ago it was that she said this to you. I would take her aside to day and say, "we need to talk!" Then, frankly, I would read her the riot act. Tell her how much that hurt you, how all you think about every day is how much you want to have another baby, and yet you hurt too much to make that a reality. And let's go above and beyond that: She DARES to say you are being selfish in this decision? Bring her here to let her read some of the heartbreaking posts from people who are making the same decision you are, or people who simply can't have kids anymore because of the damage AS has caused to their bodies. Let her see how hard these decisions were, how much every single person who had to face what you are facing put their heart and soul on the line while trying to decide the right thing to do.

Keep at her--don't even give her a second to breathe on this one. You tell her that to you, what's selfish is having another baby at a time when you know you cannot possibly handle that process physically or emotionally--it's selfish because you know you would have to count on everyone else to do everything for you. And it's selfish because the pregnancy would likely be fraught with complications, and thus you know YOUR pregnance would be a huge source of worry for everyone else in the family, which would break your heart, because you just want to be a normal mom who has kids and lives her life. And how it's selfish to bring a child into this world at a time when you don't know if you will be able to work and bring in money in the future, or if you will be able to take care of that new child in a way that meets yor own high standards. Of course you would love that child completely and be the best mother you can be, but you tell her how you're scared you won't be able to pick your children up in the future,or get down on the floor and play with them, or be there in the million ways you already know a parent has to be there for a child. And, that until you KNOW that you CAN be there in that way for a new baby, you think it is just not fair to that child to bring him or her into the world, that to purposely do that when you are at your worst would just not be the right thing to do for that child (notice I didn't say TO that child, because that could never be the case).

Man, I can't even continue on this...I don't think I have every typed a post as fast as I typed this one. I hope that the way I said this was the right way, that I didn't offend you, or god forbid, make you feel worse. I totally support the decision you have made right now, and my heart just breaks for you knowing that you made this incredibly brave, intelligent, compassionate decision, and what do you get in return? A horrible comment from someone who calls herself your friend. I'm sorry, you just don't deserve that--no one does.

I'm going to just end this now--I don't even think I can type out any more rational thoughts. Jess, you stick to your guns and you do NOT let people like her make you feel bad or intimidate you. I doubt you will take my advice and blow up at her (in fact, I'm 99 percent sure you SHOULDN'T do that, but man, I would, and it made me feel good to even think about you doing it!), but you absolutely should tell her, at the least, that she really hurt your feelings and that, in the future, she is never, ever to make any comments regarding your pregnancy. PERIOD.

Good luck Jess, and I hope mainly that you can start to feel better and put this time behind you.

Brad