I am heart borken !!!!

[tphillips]

I went to get my new months dose of Enbrel today. The drug store told me that the cost would be about $300 all of a sudden. I have been paying $40 each month for a month supply.

They called my insurance and they said that my drug plain was changed by my company. The new rates started this month. My company did not even send out an email or etc about the change.

I called my employeer rep and she said that she was not told of it and that some others had called with the same issue today. However, this is no surprise!!! My employeer will not communicate to their employees and then get mad at an employee when they do not know of something or does not do something. It is even a small company!!

I hate to pay the increased amount. My wife and I are on a strict budget. This is a lot of money to us as it is most.

I talked to my wife and see wants to find the money some way, becuase it has helped me so very much.

I am so angry. I have had so much help with the Enbel. I have been so happy with the results.

I guess I should not complain, because some people can not get their insurance to cover it. However, it makes me angry at my company, my insurance, the drug companies and the government. We need help and they just keep giving us less coverage and costing us more.

You would think that the government try to do something to help people.

T

[tphillips]

I have calmed down now. I should be (and are) thankful for having a med that seems to help, a job and some insurance coverage to help with it. That is much better than lots of people have.

I really am thankful to God for what I have.

I am sorry for my post. I was angry and vented.

T

[chaimFL]

I would have been angry as well...as well as every other person on these boards. That's quite a big jump in cost and your company should have warned you that changes were going to happen so you could adjust your budget accordingly. Quite frankly I think it is amazing that you calmed down so fast. I hope everything works out!

[Raynard_the_Fox]

I would be Mad too. I know from your other post that it was working well for you. I am glad you seem to have calmed (dont need the extra stress) hope the best for you and your family.

-Fox

Dont apologize for venting over this. its what the board is for.

[cereal]

Hey T,

That bites, big time. I hope you send off a letter to your congressman, senator, etc. I don't know the link. MIKE where are you when we need a link? I have seen him post it many times, a place called needy meds, it's just an idea that may help.

Feel free to vent anytime you feel the need, that's what this place is for. Hang in there!

[tphillips]

My wife and I were married for 10 YRS on 3/12/04. All during this time I could never really talk to her about my P. She knew all about it, but I just could not face to talk to her about it. A couple of weeks ago I talked to my wife for about 3 hours about P and PA and how it makes me feel. I got 10 years of build up off my chest. I told her how it feels to see people look at you and wonder what it wrong with you. When on the inside you know who you are and the type of person you are.


- I have gone to get my hair cut and had people not want to cut it. My wife has cut it since I can remember. She has always told me to go get it cut, but I could not stand the looks and the way it made me feel.

- I have gone to the dentist and was ask if I had aids or what? Before they started working on me.

- I have walked through the mall and etc and had people look at me like "What is wrong with that guy". This happens on a constant basis.

- I have people on a routine go out of their way to avoid not having to shake my hand

- I was in a senior management meeting with my job one night. My boss ask me in front of everyone what was wrong with my skin. I saw him look at me, look at my hands and then look away. Like he started to say something and then changed his mind. Then he looked back and ask. It made me feel so bad! I cried on the way home. My boss(s) have treated me differently ever since. I was told I was going to get a promotion and after that meeting It was given to someone else.


- I always wear long sleave shirts. I can not bear the looks or questions that people give or ask. Wearing short pants or etc would be out of the question.

- I could not even allow my wife to see me change clothes or see a part of my body. I would always turn out the lights and get the room as dark as possible. She knew why!!! Just did not want to make me feel any worse than I already did.

Now I show my stuff to her all the time !!!! Wow !!!! I did not know what that felt like !!!! Wow !!!!

- Just the constant way this thing makes you feel.

These are things in the past months.


I got years of stuff of my chest in my discussion with her. That in itself made me feel so much better. I have been so low from the P and PA that I have felt like a freak for years. A big ugly freak!!!!!! Now I feel differently.

That is why I was so angry yesterday when I got the news that my company had changed their insurance and my Enbrel cost was going up.

My wife and I talked about it last night and she said that we would just have to find a way. If I did not continue the Enbrel, then she would buy it and make me take it. She says that it is making me a different person. A person she has not seen since we dated years ago!!!!!!! She feel that the improvement in my body is awsome, but not close to the improvement in my moods and actions

She says that the extra money is a small price to pay for the something that is changing me in so many ways. Also, that I should feel so blessed to have something that seems to be helping. At least I have insurance and etc to help. At least I have a job to pay bills and etc. She helped me to see the continued blessing from God and not the bad in this. It could be worse !!!!

That is how I calmed down. It still upsets me, but I am thankful to God first that I have something that has make me feel so much better in so many ways. I can not focus on the bad, but should focus on the blessing and the positive. Thank you God!!!!

[khorath]

A loving spouse makes all the difference. It sounds like you have a "keeper" there! I do, too. I thank God for a supporting wife.

As I read your post, thoughts of my own similar-type experiences came to mind. If we are not careful, this disease can cause us to become very lonely and very withdrawn.

I recently started a support group in our area. Our city only has about 80,000 people. I really did not know what to expect. At our last meeting (last Thursday), we had 17 people! Wow! I was blown away. Nearly everyone talked about the importance of a spouse who tries to understand, helps with meds, is patient, and is unconditionally loving.

One young married lady, in particular, was "brave" enough to show us how severely she has psoriasis. Even though mine has been "worse" (more physical coverage) in the past, my heart went out to her as she showed us the spots on her arms, legs, and hands. It nearly moved me to tears because I could relate with what she was experiencing. And, for many years I thought I was all alone. She was not "ashamed" to show us, she said, because we all experienced the same-type thing. I began to really realize the importance, too, of a support group. Online is great, don't get me wrong because I love this forum, but getting together in person provides such an added dimension.

Good luck with your Enbrel. I do not know what options are available to you, but I would try anything you can. Needy meds is www.needymeds.com. However, if you have insurance, I'm not sure how successful you will be. Other option is to try the makers of Enbrel themselves. See if there is any financial assistance there. Or, see if any of your local dermatologists are conducting a clinical trial. You may just be able to get the drug for free (at least for a limited time).

Good luck. Feel free to vent here anytime. I wasn't offended by your post at all. In fact, I related to it and found it refreshing to read myself!

[makeitgoaway]

2 things to try.

I would call the NPF and speak with the advocacy group. They might be able to at least help get the $300 down for this month claiming you didn't know about the increase.

You should also speak with your insurance company to see if they offer the drug through a mail order pharmacy. Many insurance companies do. When you get Enbrel through one of them, it is usually much cheaper for them and the co-pay to you is either less or free.

I hope you can work it out.

Keep us posted.