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07/12/2011 04:44 AM
gettingoldsucks
gettingoldsucks
 
Posts: 3234
Senior Member

I haven't been feeling great since early April. Then the shingles hit. Now the joint, muscle, and aching body has been pretty bad the last few weeks. You all know the drill. Waking with it all for unknown reasons or getting even worse by doing s little, it just breaks your heart each time. My whole body ached and throbbed so bad for hours the other night, I just sat, unable to move, and sobbed myself to sleep.

Saw doc yesterday. My WBC is really low again and the RNP is 432. RNP is one of the tests to DX and watch activity for Lupus and MCTD. Normal is 1 or lower. I was dx'd at just 4.95. He's shocked my symptons are just sporadic and not constant. It's enough, believe me. I can be fine one minute, and down for hours and days the next. I am also on day 5 of a lagging headache. Thanful it hasn't blown into a migraine but it's miserable just the same. The Arava is not working. He added Plaq back in and I need to contact medicare and start pricing the biologics. I already know I can't afford any. Remicade and Cylesta are about 350 a month even with part D. What to do........

Donna
I am not a medical professional. All advice I give is from my own research and personal experience. Please seek medical advice before applying any advice I give.
Reply

07/12/2011 06:03 AM  Top
bits
bits
 
Posts: 10308
VIP Member

Well, you go ahead and contact Medicare, then you contact some of the companies that help pay the deductible. Then you brace yourself and with knees knocking, you go for it.

Biologicals are big guns. RA needs big guns...eventually.

Remember donna, RA is progressive. Just as many diabetics have to go up the ladder for continous control so do RAers. We are chronic, our disease progresses, and our hope is keeping it in check grasping hold of one day remission will come.

I would give almost anything to try Enbrel again. Yes, it turned my RA around back to pre-RA days. Orencia is on the agenda IF this stupid wound will stay closed. I look forward to that day.

Four years ago I was terrified out of my wits everytime a new med was introduced to fight RA. Terrified. I cried, I kicked, I worried, I stressed, I fought it tooth and nail to get better on my own. Things only got worse.

Finally, I gave in and tried everything available to me. Some things didn't work...some things did. Like Mobic and Nambumetone and Enbrel. Worked so well. But...my body rejected them all and I was left without med options because of this wound.

As scared as I was to try the meds it was nothing compared to how scared I was when I was told the med door is closed to me. I cried even harder. And felt utterly hopeless.

For by this time I was sharply aware I had a battle waging inside my body and knew with all my heart I had to fight with everything available.

Funny how I once fought against it and now...I fight for it. When I could have it I didn't want it. Now, I want it and can't have it.

I bet when you start the bios you will feel so much better. Keep in mind we can stop anytime we want.

I am praying you find easement soon and eventually find your quality of life is grand.

Gentle hugs friend

When I stand before God at the end of my life, I would hope that I would not have a single bit of talent left, and I could say, "I used everything you gave me." ~ Erma Bombeck
bits

Previous discussions I participated in:
need help
Inflammation
depression sucks!

07/12/2011 11:23 AM  Top
Cata
Cata
 
Posts: 1898
Group Leader

I hope hope hope you can find a way to cover a new med Donna. Hang in there
Cata
-----
The information you find in this website should not replace medical advise. I am happy to share my experience but remember I am just a patient like you.

Previous discussions I participated in:
need help
Inflammation
prednisone

07/12/2011 11:44 AM  Top
tonyaraz
tonyaraz
 
Posts: 735
Member

I hope that the medical companies will be willing to help cover the cost. That seems so high to me. But I have been told by others that they had to pay about $2k a month- now that is a house payment an no way could anyone afford that. I really hope things work out and you start feeling better soon. GOOD LUCK!
Tonya

Previous discussions I participated in:
SEVEN DAYS......
RA, SMOKING, AND ALCOHOL
PInched nerve

07/13/2011 06:07 AM  Top
gettingoldsucks
gettingoldsucks
 
Posts: 3234
Senior Member

Thanks guys. Benlysta is out due to med co. doesn't allow anyone on gov't insurance on their copay help plan. Doesn't make sense to me and this is the med my doc really wants to try. All the rest of the biologics are between 350 and 550 a month and then I would hit the donut hole after just 3 months and then they would jump to 700 to 900 a month for 4 months. Then back to the 350 to 550 for 5 months. No way can I pay this. Medicare is not what people think.

Post edited by: gettingoldsucks, at: 07/14/2011 09:25 AM

Donna
I am not a medical professional. All advice I give is from my own research and personal experience. Please seek medical advice before applying any advice I give.

07/14/2011 04:55 PM  Top
Cata
Cata
 
Posts: 1898
Group Leader

No Benlysta? D**n... No way around that? I never thought medicare would put you in this position, i thought most your issues would be solved. I can't understand the system
Cata
-----
The information you find in this website should not replace medical advise. I am happy to share my experience but remember I am just a patient like you.

Previous discussions I participated in:
need help
Inflammation
prednisone
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