New to PA

[TigerGem33]

My name is Cindy and I am 34 years old. I live in Florida with my husband and 2 children. I posted awhile back in the General Discussion forum. However, due to worsening back/hip/wrist pain my time online has decreased greatly
I was dx with P in May '03 and since then I have been having horrible hip pain. And tendon/soft tissue pain as well in my wrists,hands fingers, and feet.
I finally saw the Rheumy on Aug 15h he dx me with PA. Apparently I have alot of the classic symptoms. He injected my hip and it helped relieved the pain...for a week. He also took an xray of my spine.
We discusssed treatment options and because of my history of Type 2 diabetes, high tryglycerides, high blood pressure and fatty liver..my options are limited. We decided on Enbrel.
After some miscommunications with his office and the insurance company, we finally got prior authorization
I saw him again this morning and in addition to the PA. I also have lumbar spondolysis(narrowing of the disks) and osteoarthritis in my lower back
He put me on Bextra for the osteoarthritis and Enbrel for the PA. I got my Darvocet refilled...he said it doesn't help the inflammation and I agreed. But I said it kills the pain so I can sleep! Hopefull between the 2 meds I will finally get some relief.
I am scared to death about Enbrel. You read about it and how people have died and there are class action lawsuits, etc. I told my husband that I would have my will redone and filed with the attorney..just in case something were to happen. I don't normally get infections, but I do have diabetes.
I also read that you can not take the flu shot while on the Enbrel...or any other live vaccine. Do I have to be extra careful around people so I don't get any sicker then I already do?
Any advice, words of encouragement, etc would be greatly appreciated.
And I apologize if I am not on here much...it's just too painful to sit, stand, drive, lay down, etc. Gotta go pick up my kitten..he's being neutered today<sigh>
Thanks!

[Zwijndrecht]

... do not second guess yourself.

Nothing in this world is without risk. Probably driving in the car is far more risky than any of these drugs.

The FDA approves nothing without tons of tests and reports whatever comes out as related to the drug...regardless of the cause.

Enbrel has some risks, but nothing that you need to lose sleep over. In most cases, halting the drug can halt any problems.

I can tell you....the pain you are in is making that decision for you as it did for me to go to remicade and all of us here are making decision because we have to....not just to feel a little bit better.

Good luck. I believe you will be OK and hopefully it will work well to boot.

[FlakeyMatt]

I completely understand your reservations about taking Enbrel. The drug is "fairly" new and of course that can be a concern.

HOWEVER, I have used Enbrel for 2 months and CANNOT begin to tell you the differnce it has made in my life. For more info read my thread entitled "Enbrel. P and me!" You will get alot more details about my expereince thus far and also see commentary from others.

Good Luck and Keep us posted. FlakeyMatt

[TigerGem33]

Zwijndrecht and FlakeyMatt...

When I signed on and read your responses, I had to shed a tear or two. Only in this forum do I feel accepted for who I am, plus people here can relate to what I am going through.
Your words of encouragment really helped me realize that I have made the right choice, whether it's Enbrel or something else.
I don't like having to take medications...period! My decision to start on Enbrel wasn't because I wanted to...but because I needed to. PA is a disease and without treatment it will only get worse. I hope to keep it from progressing, relieve the pain I am in and hopefully clear up my P as well.
I'm only 34 with 2 children, ages 13 and 11. I love being a mom and being active with my kids. It's hard for them to see their mom in pain. I tend to push myself, and pretend I am fine. Only to regret it later. I need to learn to listen to my body and know my limits. I no longer clean my house in one day...it takes 3-4 to get it completely done. At first it would drive me insane, but I'm getting better. Plus, I was the type of person who refused to ask for help....well NOT anymore=)
I am taking Glucosamine for the joints.....maybe it will help or maybe it won't. At least I can say I've tried.
I am very apprehensive about taking the Bextra. My ankles and fingers swelled up real bad last night. I was reading side effects, etc. And it says not to take if you have high blood pressure and/or take an ACE inhibitor....well I have HBP and take and ACE inhibitor. It says it can cause the ACE inhibitor to not work as well and some people with HBP it can cause fluid retention. Grrrrrrr why don't Dr's read your chart? I am not going to take anymore and then see my GP on Sept 9th. I want to review everything with her to make sure it will be ok.
Thanks again for the wonderful words of support. I hope to have the Enbrel in tomorrow or Monday. I'll be sure to keep everyone posted.
Thanks for caring!

[Zwijndrecht]

CindyLou,

PA will help make the decisions for you, we will be here to help you with the other questions.

Someday, despite Embrel or whatever, PA may decide to worsen...you just have to keep on fighting and live with what it gives you.

Welcome to our place.

Z

[PJ Leary]

Hi CindyLou,

These guys are right, it gets to a point where the diseases forces us to make hard choices. However, I agree with Matt about the enbrel. I cannot believe how good I feel. What I am just now understanding is how bad I did feel until I got some relief from the pa.

It crept up on me. I too am a Mom ( of 4 ), and like to enjoy an active lifestyle. I hope you see the kind of relief that many of us have with this medication.

Keep us posted. Oh, and welcome to the board.

[mcbeckysue]

Hi guys,

I've been hanging out in general discussion for a month now. I'm writing here cuz' i now have things to share with you.

my cousin is in his 40's and enbrel has changed his life. he had 85% p and was unable to work with the a. jake was on the verge of suicide. his father had pa and chose to check out. we're all so glad this drug worked, for jake is a wonderful guy. he only has a few specks and no a now. he received enbrel through a study. i'm glad he got relief.

i think i'm getting the 'a'. i'm 28. i did not have it 'severe enough' to get in the above study. i was quite bummed. currently i'm a horticulturist, and the onset of pa is affecting my productivity at the nursery. i know the owner will be breathing down my neck about production anytime, and i'm stressing. my hands and elbows are the only joints affected right now. I'm fortunate it's not other ones, but this is seriously affecting my livelihood, as i'm not married and don't want to change fields.

just looking for a place to vent. i'm fit and active, and the pa is beginning to drag me down emotionally. i exercise to ward off the blues, but some days are better than others.

thanks, beck

[LottieBay]

Becky,
Just a sugestion........ It has taken me a long time to get hooked up with a rheumy....My first appt is the 11th, so
In the mean time, for the past six weeks I've been taking Glucosamine/Condroiten. (My Onc said the Condrioton does nothing but won't hurt). The Glucosamine is working. I've noticed a marked improvement in my hands, feet, knees and hips in the past couple of weeks. It's not too expensive and available everywhere. You might try it and see what happens.
Margaret

[Cpalucci]

Cindy,


I'm a new member. I read your post and shed a tear or two. I'm a mother of one (11). And I know what you mean about keep moving even though it hurts. No mother wants to worry her children.
Good luck at the Dr.s and keep your chin up. I know some days are harder than others.

If we help each other maybe we can all get through this!

Crystal