Guest guest Posted October 10, 2004 Report Share Posted October 10, 2004 Dear All, I was diagnosed with RA last week, although I have been complaining about some related concerns for almost 4 years. (NOW they decide that " it would be malpractice NOT to send me to a rheumatologist " ) I have read some of your messages and I wanted to ask you how many of you have problems principally with your hands and feet ? My chief areas of concern are primarily my hands, my toes, the bones in my feet, and to a lesser degree right now, my shoulders. It is amazing to me that the onset of this illness can be so slow and so insidious. I am a relatively young person and am shocked at how slowly but how steadily my ability to do certain things has become impaired. Thanks for being here, J Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2004 Report Share Posted October 15, 2004 , I understand how you feel and it's alright to have those lousy days when you just don't want to give in, and I think that's a good thing! I have days when I'm ready to flip out too and this group is the only thing that holds me together! ~john no_way <kentuckycowboy1@...> wrote: Marcia Stoyle <marciastoyle@...> wrote: Hello all, Well thought this was interresting as i seem to have become withdrown and an a$$hole as everone thinks , yes i can see its brought out the angery and the temper is much worse dealing with pain all the time ( mine hasnt been gotten under any kind of controll yet ) so i still dont know or cannot deal with mine the dx didnt seem to bother me i was glad to put a name on the pain but i still so disapointed that nothings eased , withdrown and wanttalk LOL how do you all handle this ?? later johnhey, ! sooner or later you learn acceptance....you have RA and that's the way it is going to be from now on ....OK, you try to move forward inch by inch. it hurts all the time, yep, it sure does; but if I can just get a couple hours sleep, I can function. I still work full time...I am a newly-wed and have a hubby to take care of day by day. he is a great guy to stand by me, having 4 surgeries in 5 years; he talks of our retirement, and moving south to a warmer climate, and all the time (in the background) my RA lurks, but SO WHAT! live well and enjoy all you can - gentle hugs, Marcia Thanks Marcia, I to still work full time but as today i can home hobbling hardly able to go just so hard to keep on keeping on in such a demanding job ! later john Do you ?vote. - Register online to vote today! Do you ?vote. - Register online to vote today! __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2005 Report Share Posted April 18, 2005 Hi , It is VERY important to start treatment ASAP because studies have shown that damage to joints can happen quickly in RA patients. Medicine can significantly slow or completely halt that. Meds of this type are called disease modifying anti-rheumatic drugs, or DMARDs. Often, individuals with mild RA are started on Plaquenil, the mildest drug in this class. Methotrexate is considered the gold standard for treatment of RA; it is effective, but can be toxic, so regular blood monitoring is needed to be sure it is not having a toxic affect. The biologics such as Enbrel, Remicade, and Humira are usually reserved for folks who have not responded well to other DMARDs. Steroid drugs are used more conservatively these days because of the side effects, but they can be very helpful,especially in the short- term. Sierra If you haven't seen a rheumatologist, I would highly recommend you do so. > > Hi All, > I'm newly diagnosed, as I mentioned in an earlier posting. I am > looking for a rheumy doc in my plan and in my area. But until then, I > have some questions. > Can you tell me about the drugs (Humeria, Enbrel, MTX, Remicade)? > What are the side effects? > How often are the drugs taken? Daily? Weekly? > What combination, if any are they taken in? > My RA is not horrible (I say that now that the flare up has subsided!). > What I mean is most of the time I can tolerate the pain. I'm afraid, > though, that if I don't start some kind of treatment, it will > progress. I already have trouble sleeping at night due to pain in the > hips, and I can barely open jars. Some days holding my hairbrush hurts > my hands so much. Would it be beneficial to start treatment now before > damage to the joints get much worse? Or am I just whining too much? > > Thanks for your help, > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2005 Report Share Posted April 18, 2005 I think anyone newly diagnosed should be put on something like MTX to prevent further damage. I can't speak for everyone but in my case MTX was a wonder drug. I was on plaquenil and it wasn't helping so my rheumatologist at the time stopped that and put me on MTX. Right away my left pinky that was purple was finally movable again and the purple color was gone shortly afterwards. My RA is agressive, and at times has hurt in almost every joint from shoulder to toes, but now the pain is not as bad and has not returned to a lot of those places that used to bother me. Everyone is different, so best you see what your doctor recommends. I take MTX every Friday. Naproxen morning and night 500mgs prednisone (weaning off) 5 mgs one day 7.5 the next Folic Acid Good luck! ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~Maggiehttp://www.4HockeyFans.comhttp://www.4FloridaHockey.comMSN: Maggies1429AOL: Maggies85-----Original Message-----From: Rheumatoid Arthritis [mailto:Rheumatoid Arthritis ]On Behalf Of Sent: Sunday, April 17, 2005 9:24 PMRheumatoid Arthritis Subject: QuestionsHi All,I'm newly diagnosed, as I mentioned in an earlier posting. I amlooking for a rheumy doc in my plan and in my area. But until then, Ihave some questions.Can you tell me about the drugs (Humeria, Enbrel, MTX, Remicade)?What are the side effects?How often are the drugs taken? Daily? Weekly?What combination, if any are they taken in?My RA is not horrible (I say that now that the flare up has subsided!).What I mean is most of the time I can tolerate the pain. I'm afraid,though, that if I don't start some kind of treatment, it willprogress. I already have trouble sleeping at night due to pain in thehips, and I can barely open jars. Some days holding my hairbrush hurtsmy hands so much. Would it be beneficial to start treatment now beforedamage to the joints get much worse? Or am I just whining too much?Thanks for your help, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2005 Report Share Posted April 18, 2005 Most medications have side effects but few of them are truly serious. Also with proper lab work most serious side effects are detected early and are reversible by stopping the medications. On the other hand, untreated RA or related diseases are likely to cause permanent joint damage so it is important to start a DMARD (Disease Modifying Anti-Rheumatic Drug) at once. They often take several weeks to several months to become effective and there is no assurance that any particular medication or combination of medications will be effective. The sooner you start the sooner you will stop or slow permanent joint damage. Here's a link to a site that tells something about a lot of the medications. http://arthritisinsight.com/medical/meds/ Sulfasalazine, Plaquenil and Methotrexate are the most common of the older drugs and they are least expensive (but not cheap). Arava is like Methotrexate but more expensive and newer. The biologics are Humira, Enbrel, Remicade and Kineret. These are often the most effective drugs but also the most expensive. I'm on Remicade and the full cost of that for me is about $51,000 a year. Thank God for insurance so I pay only a small fraction of that. There is no concensus of what is the best medication or combination. I think Methotrexate is the most common drug for RA except it is not good for women of child-bearing age. Of course, a lot of drugs are either known to be harmful or not tested for use during pregnancy and nursing. If finances and insurance permit, a biologic is the best bet and often people do better on two or more DMARDs instead of on a single one. It often takes several months to get the first appointment with a rheumatologist and many only accept patients on referral from a primary care doctor. Please continue to look for a rheumatologist and set up an appointment as soon as possible. By the way, welcome to the group and don't hesitate to pitch in to ask questions, vent, share stories, or give advice. God bless. ----- Original Message ----- From: Rheumatoid Arthritis Sent: Sunday, April 17, 2005 6:24 PM Subject: Questions Hi All,I'm newly diagnosed, as I mentioned in an earlier posting. I am looking for a rheumy doc in my plan and in my area. But until then, I have some questions.Can you tell me about the drugs (Humeria, Enbrel, MTX, Remicade)? What are the side effects?How often are the drugs taken? Daily? Weekly? What combination, if any are they taken in?My RA is not horrible (I say that now that the flare up has subsided!). What I mean is most of the time I can tolerate the pain. I'm afraid, though, that if I don't start some kind of treatment, it will progress. I already have trouble sleeping at night due to pain in the hips, and I can barely open jars. Some days holding my hairbrush hurts my hands so much. Would it be beneficial to start treatment now before damage to the joints get much worse? Or am I just whining too much? Thanks for your help, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2005 Report Share Posted April 18, 2005 You aren't whining............you have pain. I asked the doctor once about that. I had met people who lived for years without complaining of pain and here I was whining all the time. He explained how some people, although they have RA don't suffer much pain while others have a much more aggressive form and they suffer from the start. Like everyone here suggests, it's important to start treating the RA as soon as possible so it doesn't progress. My advise to you is to be very proactive towards your own health. Good luck. Dorey www.LivingWithRheumatoidArthritis.com ----- Original Message ----- From: " " <runyonc2001@...> <Rheumatoid Arthritis > Sent: Sunday, April 17, 2005 6:24 PM Subject: Questions > > > Hi All, > I'm newly diagnosed, as I mentioned in an earlier posting. I am > looking for a rheumy doc in my plan and in my area. But until then, I > have some questions. > Can you tell me about the drugs (Humeria, Enbrel, MTX, Remicade)? > What are the side effects? > How often are the drugs taken? Daily? Weekly? > What combination, if any are they taken in? > My RA is not horrible (I say that now that the flare up has subsided!). > What I mean is most of the time I can tolerate the pain. I'm afraid, > though, that if I don't start some kind of treatment, it will > progress. I already have trouble sleeping at night due to pain in the > hips, and I can barely open jars. Some days holding my hairbrush hurts > my hands so much. Would it be beneficial to start treatment now before > damage to the joints get much worse? Or am I just whining too much? > > Thanks for your help, > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2005 Report Share Posted April 18, 2005 ----- Original Message ----- From: > Can you tell me about the drugs (Humeria, Enbrel, MTX, Remicade)? What are the side effects?How often are the drugs taken? Daily? Weekly? What combination, if any are they taken in? , you can go to http://www.google.com and type in Humira, Enbrel, Remicade and/or Methotrexate and find lots of info on all these drugs, including side effects. Nina Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2005 Report Share Posted April 18, 2005 Hi lucinda- I have never used Enbrel. Remicade on the scene first and I waited until I had kidney damage from cyclosporine and Ibuprofen until I decided to try it. Because I have a morbid fear of needles, I forego IM injections if possible. I have been taking the infusion of remicade since 2000. I was in severe active disease and then within three days I had no pain and no swelling. It got so I could walk a mile then two then three and started using the gym too. This past year, my body has gotten smart to Remicade and is rejecting it. I am on MTX to help my body better tolerate the infusion, but it also lowers my immune system so much that I wind up with an infection and so have to discontinue MTX and not get my remicade. My doctor mentioned arava in small doeses. The mtx makes me feel awful, very tired and I tend to bleed more. My body is smart to all TNF factor biologic drugs and I do hope they will come out with something new soon. I heartily endorse remicade because the infusion is only once in 6-8 weeks and I saw immediate results. Its alot more convenient than sharps all week. Anyway thats just my two cents worth. Yours, Deborah Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2005 Report Share Posted April 18, 2005 Hi , This is Steph in VA. No, you are not whining. All of us understand the pain you are in. I was there too. When my symptoms forced me to go to the local ER (before I was diagnosed) I yanked the ER doc by his tie and demanded anything to make the pain go away. At one point, where I had symptoms for 2 months and had seen 12 doctors without a diagnosis, I seriously considered suicide because I couldn't bear the pain. You did not mention where you live (at least I don't recall seeing it). As far as meds, I take Remicade, 400 mg every 6 weeks. I have been on it for 5 years this month and, thankfully, have not had any side effects. My current plan allows me to have my treatment through home health care and I don't pay anything, which is wonderful. Take care, Steph in VA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2005 Report Share Posted April 19, 2005 I have been on Enbrel for about two months now after receiving a diagnosis of psoriatic or rheumatoid arthritis. My doc's philosophy is they do the same thing, and we treat with the same drugs, so it really doesn't matter which one it is. My question is how much relief should I expect from Enbrel? I am better than I was, especially in my feet and knees, but I have a swollen ankle and nearly constant pain in my hands still. I am also on some ibuprofen, but MTX is not a good choice for me because of previous liver damage. I am exercising and beginning to modify my diet (less processed & refined foods). Will I be able to get my hands to stop hurting or is that expecting too much? Lucinda Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2005 Report Share Posted April 19, 2005 Hi Lucinda, I don't think anyone can answer your question because this disease is so individual, but when I was hurting so bad I had one thing on my mind, and that was total determination to be better despite what anyone said, and I think that helped me. At least that determination kept me driven to test so many things that finally I found what worked for me. I hope you have the same success. Dorey www.LivingWithRheumatoidArthritis.com ----- Original Message ----- From: " Lucinda Burris " <lucinda.burris@...> <Rheumatoid Arthritis > Sent: Monday, April 18, 2005 4:36 PM Subject: Re: Questions > > I have been on Enbrel for about two months now after receiving a > diagnosis of psoriatic or rheumatoid arthritis. My doc's philosophy is > they do the same thing, and we treat with the same drugs, so it really > doesn't matter which one it is. My question is how much relief should I > expect from Enbrel? I am better than I was, especially in my feet and > knees, but I have a swollen ankle and nearly constant pain in my hands > still. I am also on some ibuprofen, but MTX is not a good choice for me > because of previous liver damage. I am exercising and beginning to > modify my diet (less processed & refined foods). Will I be able to get > my hands to stop hurting or is that expecting too much? > > Lucinda > > > > > Quote Link to comment Share on other sites More sharing options...
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