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aw410 posted:
Just would like some support. Have had RA for about 15 years and getting worse. No one understands because on the outside I look healthly. Have no health insurance so can't take the biologic drugs, and regular visits to the rheumatologist is expensive. I have currently on plaqunil, prednisone, folic acid...Took methotraxate, but had to stop, couldn't bear the stomach issues...Feel alone because I'm so tired, don't want to go anywhere, its just hard to do the things I used to do...I'm 59...
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macosmom responded:
HI aw,
I was just diag in March with agressive RA, on methotrexate, folic acid, have high blood pressure and colitis. nothing is working so rumey is telling me I have to go on embrel or planquil and another drug (can't remember name) I am 43 and work full time along with husband and 2 kids - very hard to do. I agree - no one understands and I get sick of having to tell people I and tired and sore and stiff. people think that if they can't see it-it must not be there. I haven't come up with a solution yet, other than being strong on the inside and doing only what I can on the outside, I sit or sleep when I'm tired and move when I can, I do need to lose weight-I think that will help me - but hang in there - we are young - to young to let this diease take our lives from us.
 
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nancymillerellis responded:
Have you looked into any of the patient assistance programs for the biologics? I was recently approved for the patient assistance program through Remicade - they sent the meds to my doctor - all I had to pay for was the administration fee. Unfortunately, I had a nasty allergic reaction to the Remicade so now we're having to try something else. But I've been doing some research and most of the biologic companies have those programs. We're trying Enebrel now (the doctor gave me samples) because if it works I will apply for the patient assistance program and there will not even be an administration fee because they're self injected.
 
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aw410 replied to nancymillerellis's response:
No, I haven't looked into that, but I will thanks...I guess you have to try different ones to see what works...It's so frustrating..
 
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aw410 replied to macosmom's response:
It is frustrating that no one understands...used to be so active, and people just think I'm being lazy. methotrexate gave me terrible side effects...am on prednisone everyday, plaquinil and folic acid...don't have insurance so someone suggested I check out the biologic drug companies for assistance. I am going to do that...its good to be able to talk to someone who understands...thanks,
 
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Msspolly responded:
Dear aw410, Sorry to hear of your plight in life. Yes, I understand when you try to tell people about RA they usually tell me to take this or that over the counter med. (They mean well) yet really don't know the difference between Osteo and RA. And when you look normal on the outside, it's twice as hard. We get tired faster, ache more and don't bend joints as well, especially getting change out of my purse. I've only had severe symptoms for 3 yrs. All out of the blue. I'm less than half as active in life. Having to slow down and be someone new. So hard to understand what and why this RA got us! I'm hoping for a cure, not just maintaining myself. This diease sucks when it's in full gear. Hope and pray your symptoms let go of you for a breather. Maybe picking up something new to do will help. I was a busy artist-crafter. My projects are on hold or part way done. So then I learned to read, watch tv or things less stressfull on the joints and also hope to get back to work on them. Hang in there, hope for a cure!
 
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aw410 replied to macosmom's response:
Thanks for responding...I need to lose a little weight too, but the meds seem to pack on the pounds...I've been on prednisone for about 2 years now...and I just blow up...and then being so tired, its hard to move....I can't do my job anymore, real estate, hard to walk, drive, lift and even putting keys in door locks hurt...I try to do things but just get so tired...i'm glad I found this site, it helps to know I'm not alone, and I'm not lazy....
 
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baytan2 responded:
Hi aw410
I was just sitting here thinking of how this disease has taken SO much from me. I am tired all the time, I no longer work and I can't even do things with my grandchildren any more. I'm so sick of it and I've only been sick for about a year and a half. I just don't know what to do. I was a very avtive person - a nurse who worked 48 hours every week in an emergency department. Now all I feel like doing is lying in bed with the covers over my head. Noone understands the fatigue. My daughters try but they don't know what it's like. I'm just sick of it all. I'm 55 years old and I had just begun travel nursing when my symptoms started. I raised my 3 children alone (no child support and no help). I traveled for about a year and came home for what was supposed to be a few months when my granddaughter was born and was unable to go back to work because of this RA. I feel like I've been cheated out of MY time. I'm just angry at the whole world today. I try telling myself that I have lots to be thankful for and I truly am but I just have days when I feel really down and all I want to do is sit and cry and I guess today is one of those days. I tell myself that tomorrow will be better. All I can advise anyone to do is hang in there and fight the good fight. We're all in this together and we will perservere. Sending good thoughts yoiur way.........Baytan2
 
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Pollysue22 responded:

aw,

Have you tried contacting the drug compnies, the arthtisis foundation etc. The drug companies have programs that help with biologics - and Mtx also comes in an injectable form, it works well, its cheap and it does not upset your stomach. I am 53 and this disease is awful, hang in there and post often!

Susan
 
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aw410 replied to baytan2's response:
Hi, I know exactly how you feel...I am in the process of applying for disability...I have been a realtor for 20 plus years and have done very well, now I am having so much trouble doing my job, The fatigue is terrible, some days I have to drag myself to just get up, but I do, and I do as much as I can and then rest...I've also been very active, don't have grandkids yet, but wonder what will happen when I do...some days you should sit and cry and get it out, everyday is different, and never know how you will be feeling...but gotta just have to keep going, and thank goodness for this site, its got good information and I'm making friends who can relate to me....I know after being on this site, I'm not lazy or crazy.....good thoughts to you too

Anna


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