Living RA Style

By mkmac4 Thursday, September 11, 2008

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I have had RA since my late 20's. I received prednisone but had to many side effects so they took me off the drug. My RA sort of went into remission for awhile and I was lucky with that. Then back about 10 years ago, it decided to rear it's ugly head again and with a vengence. Now, I had no medical insurance and I was stuck. Some people from our church got together and got me some medical help with some pain killers and they paid a hospital bill when I had to go because the pain was just to bad to deal with. Now, I am again stuck with no way out. No pain killers, no drugs of any sort except what I can find OTC. Does anyone else have this problem? I don't qualify for any assistance of any sort. My dh is retired and on Medicare himself. The RA is really taking it's tole on my. It's getting harder and harder to do much. They want to do some surgery on my neck because it's so bad but I can't afford that. The RA is affecting my kidneys and heart. I keep going on though. I do what I can and surprisingly, I manage to get alot done myself as my husband isn't much help to me. Life is difficult but you've got to keep going. All I can do now is pray that something good will happen and happen soon before it's to late for me. The pain is unbearable most days and I rarely have a "good" day anymore. I have almost constant flareups now. When will it end. I've tried alternatives as I really believe in them but they just don't help. God give me strength.

Comments (12) | Add comment

ScrapHappy

9/21/08 10:55pm

My heart goes out to you as I cannot imagine what I would be like at this moment without my medication. Have you tried www.FreeMedicineFoundation.com, the program that Montell Williams was a spokesperson for? I've also seen notations on other RA medication flyers saying to call a certain number if you can't afford your medications. From what I've learned about RA this is a progressive disabling disease and you need to get medications now to stop it before it gets worse. I hope you can find some help so that you can control your RA or that God hears you and grants you a miracle. I'll keep you in my thoughts and prayers.

ScrapHappy

9/25/08 11:48pm

I was just reading the post from Lea which included an entire list of companies which provide assistance. Perhaps you can contact some of these organizations and explain your situation (not being able to afford the doctor's visit to get the scrips). I believe in never saying never. It can't hurt! I'm cheering for you to find a solution!

http://www.rheumatology.org/public/acrast.asp

mkmac4

1/29/10 6:20pm

We've tried! No help available. No insurance-no doctor-no meds.

ginlyn

9/22/08 1:17am

Dear mkmac4

Have you tried www.pparx.org It is the one that Montel Williams has to do with you can call this number or look up the web site it should say what needs to goet done.

1-888-4PPA-NOW (1-888-477-2669).

God speed and good luck I hope it helps you with your meds or puts you in touch with someone who can I am thinking of you.

Good Luck

Ginlyn

mkmac4

9/22/08 9:24am

Thank you both for your information but the thing is, you need a prescription from a doctor to qualify for this. I can't afford the doctor. No doctor-no prescription.

I know that this is a highly progressive disease without medication but at the current time, there is nothing I can do. We have checked into every avenue and without a doctor, I can't do anything. Let's hope, whomever becomes president, will do something about us who have no insurance and can't afford it or doctor visits.

ginlyn

9/22/08 9:39pm

I hope you are right and who ever wins in the White House will help to get something done about people who don't have insurance. I am so sorry you are having such a hard and difficult time. I will keep you in my thoughts and prayers.

Ginlyn

mkmac4

9/22/08 10:10pm

Thank you!

mkmac4

1/29/10 6:21pm

I have to be able to get a prescription in order to participate in their program. I can't do that cause doctors won't take patients without insurance and insurance won't take me because of previous conditions. It's a mess.

Ellen Galo

1/29/10 4:22pm

Hi Marie,

I just happened to come across your profile and thought I would mention something that helps me that's OTC. I do take one of the biologics, but (ironically) I can't take any NSAIDS or Tylenol any more (as of this year - I'm 59).

What I take is Nature's Way Yucca AR (arthritis relief). It has a whole bunch of herbs including yucca root, which native americans used for arthritis, burdock, hydrangea, and other stuff. It helps with the residual stiffness and pain. I knew about it from a friend of mine who was on disability for 12 years with RA, and then was able to get off it with Yucca. She couldn't take any regular drugs because her stomach was wrecked from chemo (she'd been through 4 kinds of cancer, can you believe?). An ER doctor suggested it to her when she went there for a pain shot.

I would be interested to know if it would work for you as well. They suggest 2 capsules twice a day - but I take one twice a day (touchy stomach). When my friend was taking it, the suggested dose was 2 capsules 3x/day. But whatever ...

There is also something called Zyflamend, OTC in natural food stores, which is supposedly doctor tested and approved. I only tried it once, not long enough to see if it would work for me ...because the Yucca was working, and helping after only a couple of days.

It's too bad you are not able to get medical treatment through Medicaid - one would think that if you are having kidney damage, it would be more cost-effective for you to prevent something that could make you much sicker!

mkmac4

1/29/10 6:18pm

The supplement you are talking about was one of the first I tried. I've been studying alternative medicine for 40+ years. It doesn't work for me. I've also tried Black cherry and many other things. Nothing seems to work for me.

I just seem to fall thru the cracks when it comes to getting any sort of help. We've even got part of our small town trying to find something so I can get help. NOTHING! I am going blind now because of the RA and it's scary. There is nothing I can do and no medical people will help. Thanks for your suggestions.

Ellen Galo

1/30/10 11:00am

Do you know about the antiobiotic treatment? minocycline etc... sometimes that seems to work for seronegative RA that doesn't respond to anything else. "The Road Back" book/website, and also there's a related site www.cpnhelp.com about cell-wall-deficient bacteria living in the immune cells and screwing everything up...I've talked with a couple of people who have been helped by that.

Does any kind of food make your arthritis worse? Yeah, you probably have done all this! But can't hurt to ask.

I got reading Prevention magazine a long time ago (a long time before RA) and that has helped me a lot over the years - I actually don't like how they've glossed up the magazine and concentrating on good looks and weight loss! Grrrrr, there is so much MORE!

mkmac4

1/30/10 1:19pm

I have heard about the antibiotic thing. I'm aware of all the stuff and research out there. I just can't afford to see a doctor to try anything. No insurance-no doctor! I keep up on all this kind of stuff. Thx.

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