Rheumatoid Arthritis Support Group

Rheumatoid arthritis is a chronic, inflammatory, multisystem, autoimmune disorder. It is a disabling and painful condition which can lead to substantial loss of mobility due to pain and joint destruction. The disease is also systemic in that it often also affects many extra-articular tissues throughout the body including the skin, blood vessels, heart, lungs, and...

2,179 Members

16,355 Posts

0 Online

tvlady11 09/26/2009

Hello everyone,

I'm fairly new here and have been struggling so much with my pain and fatigue and was hoping now that I have Medicare Advantage (Humana) I would be able to get back on Orencia. I am back on Arava - was off everything for almost a year due to no insurance - but the insurance company decided I would get Remicade instead of Orencia. The next day I was informed I would have to pay 20% for each infusion up to $3700 then ins would pay it all. That's approx $600 per infusion. I am on disability with only a part-time job so there's no way I can afford the biologics at all. I was so disappointed I just cried and cried. Have an appt with the rheumy next Tuesday as she says there are "other options" but I don't know of any other than mtx and I've been on that with no success. Does anybody now what "other options" she may be referring to?

I am tapering off the prednisone, was on 10mg now on 5mg and I sure can tell the difference. She wants me down to 2.5, but I can't imagine that without the infusion. I was so looking forward to the infusion as I had such good results the year I was on Orencia. I used to have such good insurance when I worked full-time and now with Medicare - while I do appreciate having it - it's frustrating I can't get all the treatments I need.

Thanx for letting me vent.

Sandie

livinginspiteofRA 09/27/2009

The last time I looked, Centocor, the makers of Remicade had a patient assistance program. I would recommend that you ask your physician about enrollment in that. If I locate the link I will post that as well. As for your question, there are many different options now for RA. Some infusions, some injections and some oral medications. I pray that you will find one that fits all of your needs.

deleted_user 09/27/2009

I take Orencia and my 20% comes close to what you pay. I am on Orencia and in their "Promise Program." Orencia pays 100% of your cost of the drug for 6 months. I am in your boat. I am on SSDI. I plan on contacting Orencia to see if I can get further help with the cost, but am first waiting to see if it works. My rheumy told me humira is very similar to remicade. The humira didn't work for me, BUT it is covered by a minimal copay on your drug card. Possibly you should ask to try humira or enbrel first because they are much cheaper. I didn't want the Orencia, but when enbrel and humira didn't do the trick I had no choice. I am sure there is help out there you just need to find where it is. Googling on the web is a great place to start. Good luck, marcia

deleted_user 09/27/2009

I agree, check with the manufacturer to see if they have a manufacturer assistance program, or you can even have your Dr. write to the manufacturer to "plead" your need for the treatment. Good luck,

((Heather))

deleted_user 09/27/2009

i'm on a program with humira. i pay 5.00 for two shots. good luck. hugs,deby

deleted_user 09/28/2009

Excellent advice...there are indeed options out there, the best being drug companies offering financial assistance to patients needing their medications. I just saw the website for Humira financial assistance. I take Remicade, and am lucky my insurance covers it 100%. I know I am LUCKY....not many insurance plans cover 100%. Your rheumy can contact their drug company reps to get information for you. Good Luck

tvlady11 09/30/2009

Thanks everyone for the replies and good wishes. I had an appt. today with my rheumy but had to cancel becos I was in too much pain to get dressed. I will ask her about what. the drug company can do and have found an organizaton called Healthwell. org who help people who are underinsured so there may be hope after all. I'm just so anxious to get the infusions started and have waited so long for some relief of the pain. Thanks for the suggestions.

tvlady11 10/09/2009

Hello everyone.

I have seen both my primary and rheumy this week and have good news and bad news, The good news is that my RA is doing great - she didn't use the word "remission" but said there is no inflamation and the X-rays of my hands and wrists don't show any new bone deterioration. The bad news is I have Fibromyalgia and the Osteo Arthritis is pretty bad.. I was reading the symptoms last night and it explains so much of what I've been going through.
She put me on Lyrica and I also have a Vitamin D deficiency. She said I may need physical therapy and pain management and I have to slow down the Pred taper to 1mg a month so I started on 4mg today.

Thanks for the suggestion, bizemomm, but I've already been on Humira and Enbrel. Enbrel worked for 6 months but the ins co didn't see a 20% improvement so they stopped covering it. I will check with the other manufacturers and she gave me the names of two new injectables, but can't read her writing - Lol Does anybody know what they are?

I feel better even tho' I have another disease because I have some answers. I couldn't figure out why I was having so much pain, but not in my joints, my sleep problems are now explained, even tho' not solved. Anyway, thanks for letting me vent. I appreciate you all so much.

Sandie

bigiblue 10/10/2009

not to change the topic Sandie but where was your pain with the fibro. I have been having Calf and Shin pain for the longest and am wondering if that maybe fibro. They have done all kinds of tests already but seem to find nothing. I have OA in my Knee and RA in the back of the knee and the pain radiates all the way down from my Knee to my Foot. Just wondering. I just did an MRI of the knee and shoud get results Monday.
bigi

tvlady11 10/11/2009

bigiblue - my fibro pain is mostly in the muscles of my arms, hips, thighs. I can just touch my skin and it's painful. Most of my pain tho' is from OA, they say, and that's in my knees and back. The RA is mostly in my hand and wrists, shoulders and elbows.

Sorry I couldn't help with your questions and good luck with the MRI results!

Sandie

Join the Conversation