OK Here goes. My head is spinning from talking to rheumy. I kept talking about the pain and he kept talking about "treating the disease" to stop the pain. He kept pressing me on what I am doing about insurance and Humira. He talked me into starting back on mtx but stay at 10 mg. He did not want to send me to pain specialist. He kept saying "if we treat the disease, the pain will take care of itself". I kept saying I cannot wait. He would just move onto talking about how to treat the disease. FRUSTRATING AS HELL. I talked to him about the butt pain. I asked about piriformis syndrome and reflex sympathetic dystrophy. He said I do not have piriformis but I probably did have reflex sympathetic dystrophy but treating the ra will treat that.
Rheumy did not want to refer me to pain specialist. He kept saying we need to treat the disease and the pain will take care of itself. GRRRRRRRRRRR I was getting very frustrated. He is pressuring me to get the insurance stuff straightened out. I finally get really "stern" and said I cannot deal with this pain any longer. He said I should go to my primary doctor, I told him my primary doc sends me to him when it is ra related. Finally he did the referral. It will be six weeks at least before I can get in. I finally dropped the subject. I have my darvocett and the clinic last night gave me vicoden that I will ration out very carefully. I told him - I can't go back to work like this but he said I should give it a try. So I hope I am better by Sept. 1 !!!
Rheumy raised my pred. to 20 mg. three days, 15 mg three days, and back to 10 every day. He wrote me a prescription for Humira. He said you usually have to have a pre-authorization but to try and see if pharmacy can get it to go through on one of the insurances. So tomorrow I go to pharmacy with Humira script. Fingers crossed and prayers please
I gained 4 pounds. That was depressing. So back to mtx and higher dose of pred. It is really frustrating. He said the only inflammation he can see is in my wrist. I don't get a lot of obvious inflammation but my blood work was:
CCP antibodies - 297 Strong Positive is > 60
rheumatoid factor - 31 normal is < 20
C-reactive protein 4.3 normal is < 1
So there you have it. Too much information I am sure. I have a huge headache due to all the stress. I took 10 mg. more pred and two darvocett. Spent the day in bed.
I will check back in later. Thanks for your support and I hope I will have good things to report and more supportive of all of you soon.
Roxy I'm sorry you don't feel like you're getting any where.
I do think the doctors right that once the disease is under control the pain will not be nearly as bad. Duh, right?
That's not much help to you right this second...but it should give you some hope for the future.
I swear by MTX & Humira but it took me years to get to the right combination.
Hang in there Sweetie; I'm know it's not easy.
Lovie
Roxy, I hope you feel better soon. I haven't ever had much luck with the rheumy. I want an MRI but always get told no. I see him next week to see what I can do about my knee pain but so far I have never had anything but Advil for pain. We shall see. Hang in there!What is up with this dr. Does this dr. know anything about RA.I am not dx. but I know just from listening to you all that pain is always there even while being treated with prevenative meds.Gosh,I would like to slap the dr. for ya.A word on the pharmacy and Humira. My rheumy knew, and my insurance company (BC/BS) confirmed--Most insurance companies will not approve the biologics till you've tried MTX alone for awhile. Your doc should know this! And I don't know about your insurance company, but this is how it worked for me. If I go to the corner pharmacy, I pay 20%. At about ,000 per month retail, that's 0 per month out of pocket. Ridiculous! But ordering it through the insurance company's mail order pharmacy, I pay per month. A bit of a difference, ya think? Of course you have the pre-existing issues going on. Just don't want you to be devastated when the reality hits you. Hopefully, Brett's insurance will pick up where yours has let you down. Mail order pharmacies are fast--maybe a week from the time they get the prescription.
Take care of you.
Did he talk to you about how to administer Humira? My husband and I are having to go to my RD every 2 weeks to learn how to use it. He kind of has a point tho, you get the RA under control and the pain will lessen. Good luck!Murphette--Roxy is so anxious to get Humira, I'll bet she won't bother to get lessons. She'll take it out of the box and inject so fast, she won't even know there's a needle involved!
Wow Roxy, that is just sickening!!
I hate the way you are being treated
Seems alot of people are having trouble with jerky Docs at the moment. I hope things get moving in the right direction for you soon. Do you know anyone that has alot of exp dealing with med ins? That can be so aggrivating, but sounds like it's gotta be figured out quickly. Keep us posted:0)
[QUOTE=Sara G] Murphette--Roxy is so anxious to get Humira, I'll
bet she won't bother to get lessons. She'll take it out of the
box and inject so fast, she won't even know there's a needle involved! Hey Roxy, Sorry you're in so much pain, sweetie. Like Murphette above, I have also had that urge for a quick amputation to be rid of the awful pain. What saved me was a cortisone injection into my wrist performed by my RD. All my pain meds (nor RX ones) touched my pain until the injection. A systemic steroid shot will also cool the fires of pain for larger areas affected. Treating the disease does lessen the pain. But in the short-term, you need R-E-L-I-E-F (which thanks to the magic of Madison Avenue I can spell....
Sorry you are hurting....this disease is not for the faint of heart...just dealing with it day-to-day takes a lot of courage and strength. Hang in, Roxy. You are NOT alone. (((( ))))) Molly Bee Hi Guys, Well I finally am feeling better and I am seeing the positives of today. I am looking forward to tomorrow because I think I will be much better. I took 20 mg. pred but 10 in am and 10 in pm. Tomorrow taking 20 at once usually always makes a difference. Sara, you are probably right about the weaning thing but it has been my fault, determined to get under ten, that may have messed things up. I might stretch it to four or five days to lower dose. I promise when I get to ten, I will stay there until I get the humira going. I don't want to start the mtx until tomorrow. I want a better chance at a good day tomorrow. RD talked me into mtx because I did not have a reaction until I got to 15 mg. It does kind of scare me to start off at 10. He started me at 2.5 before but he said start and stay at 10. I hope I don't have a reaction. So many of you have had success with mtx, I want to give it a try again. He didn't even argue with me over not wanting to take Arava.. He even said that Arava has a higher likelihood of side effects. I am going to attempt the insurance jungle tomorrow.
I hope the pharmacy will do a lot of the work. Do you want to hear the good news. They paid my doctor bills. They did not call it a pre-existing condition I am so relieved - I would probably get up and do a dance for you if my butt wasn't so damn sore.
I slept all day. What ever they gave me last night REALLY knocked me out. My sweetie read to me about an hour he said. He said he thought I was awake because I kept moaning and groaning.
I had to have him tell me how the story ended this morning.
WELL I LOVE YOU GUYS Believe it or not, still tired. I am going to go lay down. But the pain is down to tired and achey. Thank God. Sweet Dreams.
get a really good nights sleep....tomorrow will be better!! Seems some dont know right from left!!! hOPE THINGS WORK OUT FOR YOU rOXY AND you feel better soon!!!!!(sorry for the caps!)I had one RD whenever I went in with pain she would give me an 80mg shot of steriods...boy did I ever blow up
It was so often that I had to think she didn't like skinny women and
wanted to make them fat LOL...Some you really have to wonder
about...but I can't complain about my new RD ...he's been great.
Roxy, try not to worry about the pred. If it makes you feel better you will probably be able to do some exercising to help keep off the weight. That is what I tell myself because I'm sure I'll be on it again next week after I see him. He loves that med. HiYa Roxy!!! Sorry I was not able to get online yesterday. I spent most of my day, yesterday, spending time with my mommy & older sister. BUT Back to you! Glad to hear they paid your medical bills!! That is a BIG +. Pred will make ya feel better. If I were you I would not worry about the pred issuses right now. I would wait to worry about getting off of pred until I get on some good meds like your Humira. Once that takes effect then I would worry about starting to wean off of pred. Right now pred is what is going to keep you feeling "active" and not in so much pain. I know you are worried about the weight gain, but as long as you are active and doing something other then laying around you will not gain much weight. I promise. Especially at the low does you are at you won't gain much. What I am trying to say just stay on the pred, until you get Humira approved and working for you. AND DO NOT WORRY ABOUT THE WEIGHT GAIN!! Stress also causes you to gain weigh as well! So how are you going to know if gained weight from pred or all the stress you are putting yourself though worrying about gaining weight? I wish the best for ya Roxy! Good morning all, I just wanted to share with you an interesting email I received from the arthritis foundation. My mom got me a subscription to "arthritis today". I have not received the magazine yet, but they emailed me a portion of an article in this months issue. Zipped lips: Six things your doctor isn't telling you I guess that's not any big news to us though, is it?? We could have written this one
Hope today is a good one for all of my friends
Just read up on whats going on w/ya. Sorry u hafta deal w/ unsympathetic docs, I know what thats like cuz Ive been there. But I am glad you got your med bills paid. Thats a lot of weight off of u financially. I also wish the best for ya while your on MTX, no side effects and less pain. I know u hate predisone hon. Believe me I do too. But if it will take your pain away until your other meds kick in do what u hafta do. Lets hope u can also get the Humaria soon as well. I wish you success in getting excatly the meds and relief you need. Looks like your on the right track. Keep your head up and stay positive. Ill be thinking about you.
Shawnie
I've been to that point with pain, but am skeered of needles
We were all scared at first. Lots of posts here from those of us terrified at first. And lessons from those who replied. You should do a search unter needle, or injection or something similar. I give myself two shots every day. I was more than terrified the first time. I promise, the first time you stick yourself is the scariest. Once you realize it didn't really hurt but for a second, you'll be fine.I guess in time I could give myself a shot...but for now I'll trust my
study nurse and my husband to help me. My friends who take insulin say
it's not too bad...so we'll see.
When I was in the er with horrible pain, I remember yelling to them to
just cut my arm off...so I know that when you are in so much pain,
you'd do almost anything to get relief.
I hope that you can get humira roxy and get better...I've heard it can
take 2 -3 weeks to work but I think it works sooner than that on some
people.
Sorry to hear you had such a hard time with your RD. I truely do hope you get approved for Humira. You need it. If I had some I would give you all I had. But all I have is the dreaded PRED...lol.
A new study shows that doctors may forget, decide to forgo or just don't know to do much of what patients need in a typical visit. The study, published last fall in the New England Journal of Medicine, found that doctors in the United States take only half the recommended steps in treating patients with arthritis and other common conditions, including diabetes and lower back pain. In some cases, especially when it comes to conditions involving chronic pain, doctors take barely 10 percent of the recommended steps. Here's what you may not hear -- and why it matters.
Copyright ArthritisInsight.com