New to the group and looking for info about biologics

General
1

Hi all, and thank you for welcoming me to the group.

I was diagnosed about a 5 months ago with PsA and Fibro.

I am currently taking 10mg of presidone a day and have been sicne June and it has really helped keep things from being too extreme but i have gained 25lbs so that sucks. I am also on 400mg of Lyrica and have just failed to tolerate the weekly dose fo MTX, so my rheumy is now going forward with the biologics. It will all depend on what my insurance is willing to pay for but i wondered what the thoughts were amongst the group about which ones seemed to work best? was there a discernible difference between getting the infusion and the weekly shots?

I also wanted to share that i am pretty depressed. I just had to turn down a teaching job because i could not have managed all the driving.My drs cant seem to get my pain under control. I am 800mg of ibuprofen and also hydrocodone and as i write this the pain in my hands is excruciating.

I have tried acupuncture, Neurological chiropractor, i am an holistic supplements to heal my "leaky gut" and i am on a completely anti inflamatory diet . Anything fun you can think of eating, i gave it up.

I just feel like this disease is like one of those slow moving Zombies in the movies, i keep flinging things at it but it just keeps going. I am an artist and a writer , i need my hands,( we all need our hands!) in a matter of 3 months my left hand is almost useless and now the pain in my right is tears inducing. It is so hard because as you all know people look at you and think you are fine. Unless i have my hands wrapped in those blessed heat wraps from wallgreens nobody would know that i'm dealing with this. And now my feet and ankles have gotten in on the action, i think they were feeling left out!

I just cut off all my hair, it was beautiful naturally red and curly hair that fell past my shoulders and down my back. But i just couldn't style it anymore. My hands and wrist cant hold a hairdryer for that long. And after losing big clumps of it to the MTX i decided to cut but now people are asking me , "Oh why did you cut your beautiful hair" and it makes me want to cry because i didn't want to, i had to. screw this whole bloody disease.

Forgive me if my complaints seem vain or superficial but a big part of who i am is disappearing because of this disease, i look in the mirror and i don't recognize myself. My life as you all know is getting smaller. I have to rely on people in a new and irritating way- i want to be able to open the bloody jar of pickles myself!- and the outward signs of this out of control disease that nobody seems to be able to halt is all these changes to my appearance.

I guess i'm just wondering how you all cope with this. i don't want to become more depressed or angry which i can feel myself becoming i know there are folks with way worse diseases but i am just so mad at my body for attacking itself. Thank you for listening its good to vent to people who understand. I m looking forward to being part of the community.

Mccabe_75

2

If you are in the USA, chances are you won’t have too much choice in biologic if you haven’t already had one. Enbrel is a tier 1 biologic and somewhat easy to get approved. If you have a good doctor it’s possible to get a tier 2 biological approved, but it’s a headache.

3

Depends on your insurance company.

For me its a function of age. Remicade is the primary infusion drug of all of the Biologics had has the most immediate side effects. Its the big gun. There isn't any evidence that its any better than the others but it seems folks end up there when others fail.

IF you are anywhere close to Medicare you don't want to use this one. Its a great Drug BUT it for many medicare recipients is the only one they can afford/get approved. The out of pocket expense for the others will be many thousands per year (depending on your D or C coverage - but to get the better coverage can cost hundreds more a month especially if you are drawing jointly as you both have to upgrade)

People time out on bio's, the fact is we don't know why. At this point Enbrel seems to last the longest for folks. Its the only fully human bio and least likely (notice I said least) to require a MTX backer. The bad thing is its ineffective against eye stuff. If you are not eye stuff its a good place to start that way you don't use up one that is. Simponi and Enbrel are the easiest to inject and have the fewest site injection issues.

Good luck. Its a big decision to start, but I know few who regret it.

4

So I can't address the biologics, but I can address the hand stuff. I've had a lot of issues with my hands, and have found a few helpful hints. The big thing is to use tools to open stuff. If a tool isn't appropriate, such as a jar opener, I use a piece of rubber to grip things, and I have a number of these floating around.

The really sad part is when I hand things to my kids to open. They're getting a lot better at opening their own stuff. Oh, and all of the bags I used to rip open? Scissors.

I basically try to protect my hands as much as possible, and minimize the stress. I've had a bunch of damage to my hands already, so I work on protecting them.

Oh, and compression type gloves can be helpful. They won't solve it, but they can make things slightly more comfortable. I wish you the best. The small joints can be really painful.