Re: A bit overwhelmed

[Guest guest]

Kay: I was diagnosed within six months of my symptoms starting but by the time

I got on Enbrel, I was about where you are. If MTX does not work (most docs

start you on this because insurance companies will approve it quickly), push for

something else. Quite literally, within 24 hours after my first shot of Enbrel,

the swelling in my legs and ankles began to recede and - while the progress was

slow if measured on a day to day basis - within two to three months, I was

pretty much symptom free, though if you have osteoarthritis mixed in with the

PA, it can still be problematic.

P.S. I don't know this for sure but from what she's said, I think my rheumy

starts most of her patients on Enbrel (if the case is severe enough) and

by-passes mtx because she thinks the biologics work better.

Joanna Hoelscher

[Guest guest]

Kayt, I have the same back issues. Some of my PsA symptoms have gotten better,

but not my back. I can not stand in one place more than a few minutes before I

have excruciating pain. There are people on here who have recovered enough to

live a fairly normal life. I am not one of them, but I am much better than I

was 2 years ago. I couldn't even get out of bed then. My Dr. told me that you

take what you can get with this disease...appreciate every positive step you

make - no matter how small.  He said if you fight this disease and pretend like

you're going to be " normal " again, this disease will " kick your butt "

emotionally.  If you don't have one, get a copy of The Spoon Theory.  Just

google it, it will come up in PDF format. I always advise people to find the

new normal for their lives and learn to to enjoy that life. Don't look back or

put your hope in a full recovery, it may or may not happen...but doing so makes

you miserable. As far as getting people to understand you're disease...I quit

trying. I don't even tell people I have PSA.  If someone asks I tell them I

have a disease like Lupus. Some people get that...some don't.  Nobody gets PSA

or Rheumatoid Arthritis.  They just tell you about the arthritis they have in

their little finger!  lol  God Bless you!

[Guest guest]

Welcome to the group. In answer to your first question, yes I am living pretty

much pain free and am able to home school my five kids. I do not work outside

the home and my energy level is definitely not what it used to be. My mental

clarity is sometimes a struggle also but overall I am well. I am also on MTX. I

cannot take biologic, am allergic to sulfa and the others did not help me.

Thankfully, MTX does. I had a lot of weakness and every thing hurt including

standing, walking before the MTX kicked in. Give it some time.

Things I wish someone had told me before taking MTX. The injections are much

easier on the stomach. Folic acid does help to minimize side effects even nausea

and fatigue. (my rheumy does not believe this) I take 800mg folic acid every day

except the day of my injection on which I take none. The day before and after my

shot I take 2000mg folic acid. Without double dosing before and after the shot I

get nausea and fatigue. Hope you find relief.

One more thing. Remember that the folks who aren't struggling with their PA

don't have reason to be active in this group so on here you see mostly

concerns or problems. I don't usually post because right now I am getting along

so well but wanted to let you know that there is life after PA diagnosis. Patty

[Guest guest]

I've found that these forums can be depressing too because you hear from the

people who have the most horrible situations. And often those are the people

who are reaching out for help as someone mentioned. But, it's kinda

disappointing when you don't hear more positive stuff and ideas on how to cope

and improve your life with PA. I will say that I had a diagnosis of RA for 7

years before I developed the psoriasis last spring and my diagnosis was changed.

I was doing very well on Remicade for many years. Sometimes I felt like I

wasn't even ill. Now I'm going through a medication change from Remicade to

Enbrel so I'm having some flare up of my arthritis, fatigue etc. But, I'm

optimistic that this will work. It's only been 4 weeks for me on the new med.

Methotrexate never did anything to help me before but I've heard that it

sometimes works in combination with biologics. So I may end up trying that too.

My doctors also tend to go right to the biologics because the DMARDs are more

toxic to your body and not as effective for most people. But, I do think you

have to find what works for you. Some people get great results from MTX. You

never know until you try. I would also say make as many positive lifestyle

changes as you can. I actually found that quitting drinking coffee helped me

enormously. I'm not a heavy smoker but, I've been told quitting will help so

I'm getting myself motivated to do that. I avoid artificial additives and food

colorings etc. whenever possible and that helps too.

Anyone else found anything that helped them in addition to the medications?

[Guest guest]

For me not eating flour and sugar helps a lot. Getting off them would not cure

me but I feel better and don't have as many flares if I stay away from them.

This also keeps my weight where it should be which is beneficial. I must

exercise and it is best if I do it everyday. I have found that exercise keeps my

weight where it needs to be, gives me a more positive attitude and helps with

brain fog. A diet high in fruits and veggies is very beneficial. A good

vitamin/supplement program helps. Getting enough sleep and trying to handle

stress in a healthy way have also helped me. May all have the joy and peace of

the Lord this day. Patty