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sabine69
5.25.07, 10:31 PM
Anyone else have RA?

Annie
5.26.07, 12:09 AM
Hi Sabine. I don't have RA, I have Lupus, but my mom had RA from age 18, so I'm pretty familiar with it and other autoimmune diseases.

How long have you had it? Are you able to control it with meds? Do you have any of the extras that can pile on (I was diagnosed with Sjogren's last year)?

sabine69
5.26.07, 8:21 AM
Hi Annie - I like your avatar. Anyway, I have had RA for four years. It turned up around St. Patrick's Day 2003 so that's kind of my "anniversary" even though of course it took the doctors many months to figure it out. I was only 33 and no one in my family ever had an autoimmune disorder ... so even though my panel came back positive for ANA's they said it must be a false positive and told me to join a gym to get rid of my aches & pains.

Anyway, it is pretty well under control with the meds (Enbrel & methotrexate). But the methotrexate is very hard on my liver, which is already showing signs of damage. I'm not sure how much longer I'll be able to stay on it. And I know once I go off the mtx, the Enbrel can't take care of it alone. I had to go off the mtx last November b/c I thought I was pregnant (totally by accident) and in those four weeks I could see how much the mtx helps the Enbrel.

I might have pernicious anemia. I have a blood order from a month ago and I'm too chicken to go have the blood drawn. Every time I do it's more bad news. Right now I'm living in a little bubble. :-)

Thanks for replying! Any thoughts you have are welcome!

sabine69
5.30.07, 11:32 PM
By the way, I got my nerve up and went to the lab for my blood test yesterday. If I hadn't posted here I probably wouldn't have but reading it in black and white made me realize that putting it off woudn't help anything!

Annie
5.31.07, 8:51 AM
Bravo! I'm glad you had your blood done. I know exactly how you feel about it, dreading the next trick your own body may decide to pull on you. I'll have my fingers and toes crossed that it comes back with great results. I'm not familiar with pernicious anemia, is it one of the things that go hand-in-hand with RA?

I've avoided methotrexate and imuran so far. My doc added neurontin last month for CNS issues and I'm not loving it... does what it's supposed to do but it leaves me feeling kind of stupid, like I can't find words and am a little dyslexic when I read. So we're playing with dosage.

Let me know when you get your results!

sabine69
6.1.07, 11:29 AM
Pernicious anemia has more to do with my digestive problems (gastroperisis - sp? - my stomach does not empty w/o drugs), which may or may not be linked to autoimmune stuff. It's alll pretty confusing! But I'll let you know what the results say. How long have you had lupus? Just curious, not nosy!

sabine69
6.14.07, 8:06 PM
Well, I was right. Every time I get testing done I get bad news. This time the results came back showing anemia and now they are trying to find the cause. I think that pernicious anemia is somewhat a diagnosis of exclusion (make sure it's not caused by anything else and if not it might be PA). They put me on an iron supplement, sent me for stool tests (icky!) for which I have to stop taking the iron supplement for three days prior (I love doctors) and scheduled me for a colonoscopy in mid-July. Sorry to be so gross with the details. But they have to rule out internal bleeding as the cause of the anemia and the most likely culprit is bleeding somewhere in the nether-regions (ulcers, polpys, etc. in my lower digestive system). So gross! Anyway, I am having problems with my liver, due likely to the methotrexate - which I've been on for only four years and take a relatively low dose of (15/mg week). I might have to go off the mtx within the next year and that will spell trouble. I was off it for several weeks at the end of 2006 (pregnancy scare - just what every woman on mtx wants) and I found out that Enbrel alone will not control my RA - I also need the mtx. It would be just a matter of time until I would have to stop working the few hours a week I currently manage. It's so weird because when I was first diagnosed I was told that 50% of RA patients are on disability within ten years of their diagnosis. And I thought "that won't be me." But it might be. Who knows ...

Annie
6.17.07, 5:58 PM
I'm pretty impressed that you're still able to work much at all. Don't let it get you down too much if you have to let that go. I know, easy to say. One more piece of real life chopped off (gee, can you tell I'm having a bad day ;) ?)

I hope you don't have to change your meds. I've been through that a few times and it is always such a pain. Is there a protocol for the pernicious anemia?

You asked earlier how long I've had Lupus... I was officially dx'd 7 years ago after being treated aggressively for Lyme disease for 3 years. I definitely had Lyme, but maybe not the chronic Lyme that I ad been tagged with. So many of the symptoms are the same or similar. My Lyme doc after round 3 of IV antibiotics. He had done loads of blood work to check on what the abx had done (the good and the bad) and saw signs then. It always kind of shocks me to think about how long it's been.

My hands have been a mess this week, so haven't been posting as much as usual. Hopefully, this week will be better. I'd say cross your fingers for me but... I'm sure yours are worse than mine :o

sabine69
6.18.07, 10:35 AM
You & my shrink are both impressed! For a few months this year, I was working 15 hours a week, driving to my son's school to implement a listening therapy that goes with his occupational therapy, and keeping the house (although not well!).

The one problem is my husband. He is constantly disappointed that I'm not making more money and that the house & laundry are always behind and that home-cooked meals aren't always on the table. I'm overweight, and his automatic reaction is that all of my health problems are due to that. It's a constant struggle. I'd gladly give up working in order to devote more time to our son, who has a few issues, and to our house. But right now, it's not meant to be.

I have at least six hours of typing work to do in the next three days. Wish me luck! I can tell that a front is coming through ... anyone who says that weather doesn't affect our conditions doesn't have them.

I hope your hands feel better soon. I'll be thinking of you as I pound the keyboards!

debbieo
6.19.07, 6:27 PM
My husband has acute Psoraisis with psoriatic arthritis and takes Soriatane which is also hard on his liver. A 30 days supply is $608. at Costco and this insurance company only pays 50% ($304) as the drug is not on its formulary. I have found a great drug price search tool- www.DrugPriceSeeker.com where he has been able to order the same drug from the same manufacturerfor $118! I hope someone else can same save some money like we have.

corker
9.6.10, 10:05 PM
I know these posts are all kinda old, but I thought I'd jump in anyway. I am no doctor, I do not suffer from Rheumatoid, but my mother does. At least that is her diagnosis. She was first diagnosed a little over two years ago. I'll try to make a long storey short. She always had problems with her hands, but two years ago last October she broke her foot, and was put in a walking cast. Things went down hill quickly. Her other leg couldn't take the compensated weight. And started swelling. Somewhere around here the RA started showing up in her blood work and they put her on prednisone, which didn't seem to help much. She developed a cyst on the back of her knee... it eventually burst, and her whole leg swelled up. Within a few days we had to have an ambulance come take her to the hospital, cause she couldn't get out of bed.
She was in the hospital a couple weeks, got only marginally better. They upped her dose of prednisone. She came home from the hospital with a prescription for Oxycontin (NEVER let anybody you love take this!). She started feeling better within a couple days... she is a stubborn old woman and decided she was better and without thinking about it, went off the oxycontin cold turkey. Within 24hrs she thought she was dying. She'd been through a lot of pain over the previous 6 months, but I'd never seen her like this. I realized it was withdrawal from the drug... that she had only been taking an extremely small dose of it, for only 2 or 3 days. It took almost 2 weeks to get over the withdrawal. I can't imagine how anybody who has been on large doses of that drug for long periods of time ever get off it... but I digress.
After the drug was out of her system, the Rheumatoid gradually got worse again. The doctors tried her on several drugs, including methotrexate, but none helped, some made her worse. The prednisone was starting to make her skin like wet paper that would peel off at the slightest bump. It got to the point she couldn't work and by Christmas of last year, she was completely bed ridden. We had to raise the couch up so she could lean her way off it, or else she couldn't get up at all during the day when no one was home. I had to help her with her meals, taking her to bed, dressing her. She had to stand over the toilette... (don't tell her i am telling you these things she'd kick my ass). She was getting more and more depressed... it was a really bad situation. Out of desperation I went online seeking anything that might be of use. I came across some information linking dairy to Rheumatoid, something about the proteins in dairy causing a reaction. So I told my mom . She ate a lot of dairy. Ironically, the drugs for the RA made her stomach so upset, she ate mostly yogurt. She also ate ALOT of pasta with cheese melted over it, cause it was just about all she could manage by herself during the day when I was at work. We knew it was a long shot, but she immidiately stopped eating dairy. Milk, cheese, butter, yogurt... Within a couple days we saw a change. Her pain level was way down, she was able to get up herself, dress herself. Within a couple weeks she was able to go off all the harshest medications the doctors were prescribing. I think all she takes now is Tylenol Arthritis and Celebrex.
That was about 8 months ago. It took a while to build up her strength again after being pretty much immobile for over a year, but she is living a much more normal life.
This was not a cure. She still has symptoms, still has pain, she still has attacks where it gets worse for a few days to a week, but the doctor said the RF levels in her blood are way down, she is back at work, this summer she was able to work in her garden. Next year she is hoping for Softball... She is doing better than she ever did on all the harsh RA drugs.

I don't know why giving up dairy helped my mom, who knows, maybe it was a freakish coincidence. When I first told my mom about it, I didn't really believe it would make a difference, I was just trying to give her some hope at a time when she had given up on living. But to anybody out there suffering from Rheumatoid Arthritis, or similar painful disorders, I recommend giving it a shot. It can't hurt to try.