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    I want a new immune system
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    tami119 posted:
    Hi, I and am new to this site and was diagnosed with RA a month ago. I really feel sad and frustrated with this whole thing. This is the second time in the past 8 years my immune system has decided to cause problems. The first time, I had a c-section with my youngest son and had an allergic reaction to the antibiotic, I ended up with hemolytic anemia and almost died. The antibiotic attached to the red blood cells and my immune system went on the rampage destroying my red blood cells in the process. In the ICU for over a week, almost a month in the hospital, lots of blood transfusions, and 80mg of prednisone until the antibiotic was out of my system and my immune system calmed down. I had a hard time getting weaned off the prednisone. It took nearly three months to totally recover my health and I missed some very precious time with my new baby. Thank God for my mother and mother-in-law. After that little adventure I didn?t take anything stronger then ibuprofen and antibiotics I knew I wasn?t allergic to. Until now. Now I?m taking prednisone, methotrexate, folic acid, and vit D? so many pills I got a pill case. So many scary possible side effects I wish I never read the pamplets. God this RA makes a person feel old. The prednisone seems to be helping a little but I am still tired, my joints still hurt, and now the RA or the meds are causing my mouth to feel dry as cotton sometimes. I?ve just about had enough of my immune system. Is there some place a person can buy a new immune system?where you can push, pull, or drag the old system in for credit toward the purchase of a new one?
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    Byroney_WebMD_Staff responded:
    Dear tamie119,

    Welcome! Boy, have you had a rough time. I am glad you've kept your sense of humor about it, though. I think just about everyone here (myself included), would like a new immune system. Did you check out GrandmaJr's post? She's taking the same meds you are. Maybe you two can compare notes on how you're doing?

    I'm going to give you the same link as I gave her to Rheumatoid Arthritis Medication. Also take a look at Natural Treatments for RA.

    Then I'd encourage you to check out RAtv. It's is an excellent resource to learn more about Rheumatoid Arthritis. You can learn not only about getting diagnosed and working with your doctor, but about diet, exercise, and even RA in children. You can also meet real people like an exercise director, beauty queen, state representative, and even a black-belt winning grandmother?all dealing with RA and its challenges.

    From here you can find links to Tracking Your RA Pain, How Well Are You Managing Your RA, and RISE, which is our educational program that can help you understand treatment options.

    Keep us updated on how you're doing,

    Byroney
     
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    carexy responded:
    I am new to this site also. I was diagnosed with RA in Dec, 45 years old and mother of 5, youngest is 5. I have been taking 6 methotrexate, folic acid, calcium supplement, vitamin d, mobic, and 10 mg of predisone (did do a taper dose but inflamation came back on lower dosage and rhuemy put me back on pred at 15 mg and have since cut back to 10 mg) I have been hoping to get off the predisone but every time I even try to cut back the inflamation is unbearable. I too have had immune system issues after surgeries. It's all so frustrating. I wonder how long I can take the predisone without severe side effects (have been taking this dosage since Jan). How long do most people stick with this combo of meds, does the fatigue ever end, will I ever have the same quality of life I used to have and are any of my children destined to have all this trouble with their immune system. Any insight, anyone?
     
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    DIYSTER responded:
    Well, as soon as I find that magic place that offers new immune systems, I'll let you know and will see you in the line. I don't think there is an easy answer to your meds question because everyone is different. A good Rheumatologist will conduct a broad range of tests to determine a beginning course of action but he/she will need to monitor you at least monthly to see if anything needs to be adjusted or changed. If your symptoms aren't easing up or if they get worse, contact your doctor right away to see if something else should be done - that's why they get paid the big bucks, right?

    As to fatigue and quality of life....I found that if I'm having a less symptomatic day, I feel a lot better if I get into some good physical activity. Enough to work up a light sweat and be breathing deeply. But never push yourself if you are in a lot of pain, it will make the inflammation worse. When I'm really out of energy I drink a Red Bull. Does the trick for me. Quality of life will likely be different from here on out but we can make adjustments. I'll be sad to donate my tennis racket and golf clubs but I know I will never swing either one ever again to I'll force myself to give 'em away next week. But I will take up art again -- something I left behind but still love doing and it will keep my mind from focusing on the negatives. It must be hard being a mom of 5 and having to deal with all of this. See if there are any local support groups you could contact and stay in touch here. Best of luck to you!
     
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    MsDanna responded:
    Hi, this is my first post and I want to be in that replacement line too! LOL. Tami, I'm sorry for your frustration I do understand it. Be prepared to realize it may take time for you and your Dr to find the right combination to help your pain. I went to the er in may 2006 as I couldn't lift/move/breath my arms hurt so bad. (I also have chronic back pain since1993 due to both SI joint injury car wreck) I was admitted for 3 days and at that time diagnosed with RA. I've been through all the normal pills, orencia, rimacade, and now on rituxan which I hear is one of the ?bad boys?. In the beginning I had trouble with almost everything I cant take the methotraxte due to high liver readings which in itself resulted in more testing. I now due weekly injections. I also have lipoderm patches for pain and take several pills including morphine. I also slept almost around the clock for the first 2 1/2 years. It's only been since the rituxan that things seem to have settled down. I too am still extremely tired and seem to sleep at least 12 hours a day. If I'm up longer then I sleep longer. And I'm at home not doing much. I?ve also learned between my chronic back pain and the RA to watch you prescriptions as the pharmacy will change brands each brand may have it's own set of side effects. For me this is the hard part not to mention all the things I need help with and over time my house has just piled up. In some way I'm sure that doesn't help. I'm sharing this with you so you can know that it may take awhile to find the right balance so keep your spirits up and try to not dwell on the bad think of the good things life has. It's very hard some days but you don't want to get depressed and then have to deal with that too. Also, don?t forget to be proactive and ask about changes with your Dr. I hope we can chat again.
     
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    MsDaphne16214 responded:
    Many people with RA have a secondary autoimmune disease called Sjorgen's Syndrome. It causes dry mouth and dry eyes. Next time you see your rheumy, you should mention it to him/her. daphne
     
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    DIYSTER responded:
    Yep, that's my "double feature"! And with the Sjogren's I had dry everything. But the Evoxac is working wonders! Even my skin is improving. And no side effects thus far.

    BTW, I just started on Humira yesterday and I'm seeing some further decrease in my joint pain. I'll give it a few more days and will do a separate Humira post at the end of the week.
     
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    RAWarrior responded:
    Dear Tami, i want to praise you for you sense of humor. this will get you far. you have my sympathy and respect. I agree with you about meds. hate pills. the methotrexate is worth it because it can change the disease course. the pred, tho, is a bridge drug mostly until the disease modifying drugs kick in and yu can feel a little better- most days. warning : methotrexate alone is rarely enuff. usually at least 2 disease modifying drugs are needed to actually "modify" the ra. my advice:read and learn a little every day. Glad you have such a supportive family.Awesome! ~Kelly
     
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    MB38 responded:
    I was on prednisone, first high dose then tapered down to 7mg daily for 10 years without any noticeable side effects. Then started on enbrel, and totally weaned of the prednisone, took 3 months to do. Enbrel is a miracle for me
     
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    mbowe responded:
    Have you heard about QINA? Pro Global Nutrition has it. It has helped me for the past 2 years and I am still going strong.
     
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    thk0055 responded:
    Hi, I'm new to this post but unfortunately not new to RA. I've had it for 35 years now and have tried most everything out there. I took prednisone everyday for 20 years and was only able to stop taking it in '03 when I started taking Humira. It's the only drug I've ever taken that actually helped. I'm currently taking 1 injection a week, but after the very first injection I noticed a huge difference. I 'm still tired alot but the swelling and pain level are not near as bad. Of course that may be because I've had 10 joints replaced too. But anyway life goes on you just learn to do things in a different way and deal with pain on an everyday basis. I do what I can to eat healthy, watch my weight, take my meds, get some exercise, and know my limits. Most of all don't give up and don't give in to it.
     
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    queenmocha responded:
    Hi, tami119, and all who were diagnosed with RA .I am new to this sight as well. I registered today. where do I begin? JESUS and ALMIGHTY GOD, I believe I wouldn't be here today.I was a healthy and energetic woman and about 10yrs. ago I had several traumatic accidents ,then a few months later , I was feeling very fatigue, swelling and dry flu like symptoms . I didn't think anything of it, so I continued to work .Yes, I went to the doctor and was diagnosed with Lupus and I felt this was the worst day of my life. I was immediately given plaquenil 2 pills a day, prednisone and pain medication. I suffered with severe pain and swelling. I was already suffering from neck and back pain as a result of the prior accidents that left an eternal scare on my memory. Then a few more months went by and one day, I woke up and couldn't move my body. When I forced it I felt like a million tingling, pins and needles extremely painful sensation all over . It hurt to move with force and then I fell out of the bed onto the floor. I had to have a friend take me to the doctor and positive blood results for RA. I remember my fingers were bent, stiff and painful and I could'nt move legs or walk and my mouth and skin was always dry. I said "LORD what has happen to me". Now I had to deal with two Autoimmune diseases and was given methotrexate now I take 10 pills a day. Oh but its not over, I developed fibromyalgia. My body hurt all the time esp.when the doctor touches trigger points I tear and cry uncontrollably. One day I woke up and my hair fell out I couldn't put it in a ponytail and I had crust and dry eyes. My skin is extremely dry I tried so many things and I do not know what to do about it. Yes, I had no tears when I began to cry that freaked me out. The doctor told me I had sjogrens syndrome which is a side affect of RA and another Autoimmune illness. So he gave me salagen I take 5 pills a day and Restasis for my eyes. My moisture gland was damaged I was told by my Rheumatologist. Simple x-ray showed I have ankygalos aspondilytis in my spine and herniated disc in my neck and lower back. Im continued to get worse to the point I could'nt work , so my employer terminated me. As a result, I almost lost my mind and suffered with intermittent depression over the years. The illnesses have always been a struggle with new unwanting developments. I was placed on Enbrel a few years ago inaddition to taking my other medicines and yes Enbrel is like a miracle drug. I noticed a change in only 3 weeks of my mobility but it didn't relieve my severe pain. But I've been prone to bacterial infections repeatedly and it keeps returning. Only recently I went to a different doctor and I must have found the right medicine because I have not had an infection in two months. If you cough I would get sick and need two antibiotic treatments inorder to get well. I caught a fungal infection from my granddaughter and she got it from a child at school. I saw a dermatologist who said I may need to take anti-fungal/bacterial medicine ongoing as treatment. Over the years I have lost so much hair and I recently lost more hair which thinned out alot. Immune system has now attacked my hair follicles in the worst way imaginable. Thank GOD for wigs. I was told that RA has eaten away my bone cartilage in my ankles, I stay with pain and swelling there. Autoimmune disease is soooooo..... UNPREDICTABLE in that it interrupts your life in the worst way possible. During the winter time I have deep swelling in my knees,ankles and hands from the cold weather. In the summer, I suffer the same thing because of the humidity. Also, I suffer from Diabetes,hypertension and osteoarthritis. I have been hospitalized several times for TIA and autoimmune complications.I'm not sure how long I will be on Enbrel . I battle this disease who never ceases to rest. I continue to combat stiffness,pain, immobility, fatigue, swelling, dryness and hair loss.Yes, I often wished I could get a new immune system .Queen.
     
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    tami119 responded:
    Hi Queen, I am sorry you have had such a bad time with your immune system. I know what you mean about being healthy and active, less than six months ago I was fine. Although for a few years before that I did have some unexplainable joint pain occasionally. If there ever is a line for new immune systems I think we?ll sneak you to the front and I?ll even help you drag your old one in. . I am also taking an antifungal medicine for thrush. Yuk. It did not go away so my doctor gave me another prescription with two refills. I certainly hope this does not become an ongoing thing. She also had some blood work done to check my sugar. I should find out the lab results early next week. Evidently the prednisone can raise your sugar level and cause some people to develop diabetes and since I still have thrush and have been losing weight she decided to run the test. Actually the weight loss has been the only good thing to come out of this disaster of an immune system. I figure if I keep losing at this rate I?ll fit into my pre-kids clothes sometime this summer. . Daphne and DIYSTER, thanks for the info on sjogren?s syndrome. My regular doctor also mentioned the possibility of an overlapping autoimmune disease. I hope not. If my sugar test comes back ok I will ask the rheumatologist about my dry mouth when I see her in a few weeks. My dose of methotrexate increased to six pills today and for some reason taking two more pills really upset me. The prednisone is working pretty well for me right now, my hands and feet still hurt at times and I still get tired, but my knees and shoulders are no longer hurting. I know my rheumatologist plans to start lowering my dose of prednisone once the methotrexate has a chance to kick in. The thought of the pain coming back is pretty scary. I worry about adding new meds and getting sick. I have always had problems with my sinuses and I have had a few colds in the past turn into bronchitis. I can?t imagine my constant hand washing will keep me virus free indefinitely. Thanks everyone for all the info, it does help to know there are others out there experiencing the same thing. I hope you all have a pain free day.
     
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    thk0055 responded:
    As I was reading back through the posts I could relate to everything that I saw. I was diagnosted at 18 and I'm now 53. So that's 35 long years of dealing with RA. From the pain, dry eyes and mouth, sinus problems,swollen joints, meds, surgeries, trying to find the right doctor,fatigue,depression, heart problems not to mention worrying about how to pay for it all, I've dealt with it all. My level of activeness has ranged from bad to debilitating but has never been in a complete remission. That's 35 yrs of constant pain. Finding a good Rheumatologist was key to getting mine under control to where I could have some kind of a life. If you are just now being diagnosted with RA your chances of leading a more normal life are alot better now than when I was 18. My first treatment was 20 aspirin a day. There are alot more drugs and alot more info now. If you find the right combination of drugs for you, you are less likely to suffer the deformities that I have. I can't stress to you how important it is to find the right doctor. My medicines today costs right at $3000.00 a month. If it were not for my husbands insurance I don't know how I would pay for it. These new drug are a Godsend but the cost is astronomical. Good luck to all of you just beginning in your long journey with this hellish disease.


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