Am I expecting too much too soon?

[Guest guest]

Basic story ­ 2 years of feeling horrible and a dx of MCTD and probably

fibro, as rheumy didn¹t want to commit to RA with my positive but low RA

factor. Spent 2 years off and on plaquenil (did nothing but make me sick),

prednisone (did nothing but make me have panic attacks and feel like

squirrels were running around my brain), mobic, antidepressants and darvocet

for the pain. And tests, lots of tests. Finally in May of Œ06, I noticed

my newly pitted nails, showed them to rheumy, and presto! A dx of PA (I¹ve

had minor P on my elbows all of my life, but that¹s it) and he still wants

to throw fibro in there ­ I¹m not so sure about that part. In May I started

on MTX and worked up to 15 mg/week + lots of folic as it was causing mouth

sores. It also pretty much knocked me on my butt for the whole day

afterward (and still does, though not as badly now). The MTX did not do

anything positive for me that I could tell. Finally in October, I basically

told rheumy I couldn¹t take it anymore. I was better than 2 years ago with

no meds, but not measurably so, and I¹m too young (37 now) to not even be

able to take my kids to the mall. I also have to work full-time, no choices

there ­ 2 kids, 16 and 11, and hubby and I make about the same money, and

couldn¹t live on 1 salary ­ plus, my insurance is good and cheap through my

work, and I need the income to pay for meds!

He started me on Enbrel (and kept me on the MTX and mobic). A little scary,

but also very promising, as I know a few people who have said it was life

changing, so it was worth the hassle, and fortunately I have great

insurance, that (once it was FINALLY approved) would give me a monthly copay

of $20. I jumped on it. At my 6 weeks later appointment, he asked was I

feeling a big difference, and truthfully I told him no. He seemed a little

dismayed at this, and I actually felt bad for saying that, but certainly

wasn¹t going to lie! He told me to give it some more time. It¹s been almost

6 weeks since that appointment, and I¹ve been on Enbrel for 11 weeks now.

Over Christmas break (2 weeks, as I work at a school), Ii felt great, felt

rested, had no major pain and took no pain pills for the entire break. I

was sure we had a huge breakthrough. Then I went back to work ­ and after 2

days felt just like I had before Christmas. So now I¹m back in the same

boat.

I will say that I feel somewhat better than I did back in the fall. I have

more specific pain (I had told him the MTX did this ­ less general ³I hurt

everywhere² and more specific ³this joint hurts² pain ­ but still pain).

I¹m getting more sleep (Ambien CR is a dream!), and definitely taking less

pain pills than I was before, but I do still take some ­ the pain is less

and more tolerable, so I don¹t always feel the need to medicate. I¹m still

tired all of the time, and 8 hours a night is never enough. I can¹t walk

long distances (or up hills), and just vacuuming the living room wears me

out. I wake up with pain and stiffness, and though the stiffness eases, the

pain does not always. After all the wonderful things I¹ve heard about

Enbrel, I was sure that I would feel much more like my former self by now,

though I¹m starting to forget how I felt ³before². I also know that

depression plays a part in this, and I¹m still taking ADs, and trying to do

yoga for some exercise and endorphins. Hubby can see some days that I¹m

getting ³depressive again², and tries to help, but our girls are a teen and

a pre-teen, and they don¹t get how hard it is for me.

So ­ am I expecting too much too soon? Are there people out there for whom

Enbrel just didn¹t do it? And how long does it take to decide that? I¹m

going back to rheumy on Friday, and I want to be honest, and I¹m sure he¹ll

want to give it more time. So how much of my real life could I

realistically expect to regain? I was never a very active person, but going

to Target with my kids shouldn¹t be a major ordeal. I want to be

reasonable, but I also want to know if this is as far as I can expect to

get.

Niki in NC

http://www.knitnik.com