Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Feeling miserable

Well hello there stranger. I was wondering if/when you were gonna pop your head in here.

Eric is doing wonderful. The Remicade keeps both the AS and the Crohns under control.

Every now and again, he will complain that his belly is rolling, or he may mention that he is stiff from sitting too long, but that is the extent of it. Big, big difference from last year. We were just getting out of the hospital from our two week stay this time last year. I hope that Glenn can get on the "Cade."

Go to the NSD forum and poke around. They seem like a pretty friendly bunch in there. I would be will ing to bet that they will answer all your questions. Just be wary of that Dotyisle guy....gotta keep your eye on that one.

I am glad that Glenn has a "pit bull" in his corner. It can be hard work, and wear you down, but the end results are well worth it.

Get in touch with me if you need some proping up. I will be more than happy to help.

Hugs
Lori

Hey Glen,

I am sorry about everything you are going thru.

Have you ever tried a patch (fentanyl) it at times has saved my life.

Alot of times they prescribe them for people who are terminal or who are in constant pain.

The only thing you need to remember is you may not have the pain, but your back is still sick, so don't think just because you feel ok that you can go out and rake all the leaves or work under the car.

Continue to treat yourself very gently.

Good luck!

Lisa

HI Glenn,

I'm sorry to hear that you are having problems getting the Enbrel.

Just a thought it cut the expenses.......cut the doss in half. I believe Eric and others have done this. Couple this method with one of the other suggestions listed on the board and pray that the pain goes away.

Keep us posted.

Betty

Hey Betty

Yup, you are right, Eric did cut his shots in half when he was on Enbrel.

His reason though was he was about 60 lbs and was taking the same dose as an adult. He was getting lots of colds and ear infections.

When his dose was cut down his AS still remained under control, and the infections went away.

Its kinda hard to understand that every paitent gets the same dosage, reguardless of their weight. At least he has a Rhuemy that is willing to experiment with the dose to find the best thing for Eric. He has been very fortunate with his doctors.

Have a great day

Lori

hi there buddy!!
so good to see you post. sorry not under better circumstances. i too cannot cough up the moola for the enbrel. have not been able to have it since august. praying that art's new insurance humana ppo covers it. it kicks in next month. i hope they dont give me any grief over it. if not i guess i'll have to work around it. i just wish it were more affordable. i've bombed on all the other meds.

i tried the encourage. they denied me after i had sent all the paperwork. they said they needed more info. i'll just wait it out till february. it's close enough. fingers crossed!!

wish i had an answer to offer for stopping the pain. geez. it drives me nuts. i stay up. walk around. clean up. sit down. stretch. clean up more. try to get myself exhausted so i wont feel the pain as much when i sleep. if not it's still the same. tossing and turning. the busier i keep myself the better. during the day. drag myself out. that's an event within itself in the mornings. i wish my kids could pull me in those red wagons to the expedition. but i have to move all day nonstop, till i'm dragging from pain in the evening and slow down. those are long hours you are working and i pray that the remicade approval pulls through for you and reasonable budget wise.

please keep us posted and dont be a stranger. hows the family? remember, you are not pestering. you are not just a member here. you are a friend. and we are here to listen and support our good and not so good days.

hugs]]]


Adios!
Buggie

Hey there young lady!!

Its really nice to hear from you too. Sorry I've been away for so long. I'm really going to try to be a more active member now. I've missed this place and was feeling kinda like an outsider looking in. I really felt like I didn't have anything positive to input. Guess I was wrong. There are too many good friends in here to just stay away.

I think its absolutely awful how the Encouage foundation puts each person iside this "box". You have to qualify strictly by your income. Well yeah, I probably made too much money last year. But when you look at it from the perspective that my income had to support my entire family and that we don't have a lot extra, then its not so much. Not nearly enough to pay for Enbrel out of pocket. That stuff is more than a house payment for crying out loud! So me, a married man supporting my family on what I make per year can't get it. But someone who may be single, living with someone who may be filthy rich would qualify. Where's the justice in that!!??

Anyway, we are all doing fine except for the obvious pain in the back. Been a strange winter here. Cold, lots of snow, then warm. All the snow melts and then we start over again. Wierd! Hope all is well with you and yours. By the way, I like the picture with you and that handsome guy next to you.

Take care,
Glenn