Guest guest Posted February 22, 2006 Report Share Posted February 22, 2006 Jane, These autoimmune diseases are very hard to diagnose. Many people don't get a firm diagnosis for years. I got an incorrect diagnosis at first, even though my first rheumy was wonderful and very knowledgeable. Maybe she thinks that if the methotrexate helps you, it might help to distinguish just what you might have. Just be patient with her for a while longer, because it does seem as if she's trying really hard. Just try to hang in there. Sue On Wednesday, February 22, 2006, at 08:31 PM, mtbargeman30 wrote: > Ok, I might just be retarded, but here goes. I went to see the rheumy a > couple weeks ago. She gave me prednisone, but when i started to taper > down to two a day, i got a flare, So went back today, she upped the > dose, gave me another script. Sent me for anti-CCP, liver function > tests, and some other test i couldn't make out. Then said when I go > back to her in four weeks, she will start me on methotrexate.But she > still hasn't given me a concrete diagnosis. She calls it either " this " > or inflammatory arthritis, and then only if I push. So what the %^ & & > is " this " ? How can she give me all kinds of crazy pills I have to take > forever and not give a concrete diagnosis? If anyone has any idea where > this might possibly be headed, and what size paddle I need for the > RIVER of CRAP, please let me know. Thank You. > > Jane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2006 Report Share Posted February 22, 2006 Jane, I went through this as well even though I was lucky enough to get a diagnosis after 1 and a half years. I was given all kinds of medication without a true diagnosis. After speaking with my new rheumy she explained to me that she was treating me for the inflamation in my body and that even though I didn't have a true diagnosis, my blood work did show a high amount of inflamation. I have now been diagnosed with lupus as well as rheumatoid arthritis. I know it's frustrating. My only advice to you is that if you are not happy with what your rheumy is telling you, find a new one. That's what I had to do before I got my diagnosis. It seems you definately need one that will be more open and tell you what they are treating you for. Best of wishes, Holly Sue <marysue@...> wrote: Jane, These autoimmune diseases are very hard to diagnose. Many people don't get a firm diagnosis for years. I got an incorrect diagnosis at first, even though my first rheumy was wonderful and very knowledgeable. Maybe she thinks that if the methotrexate helps you, it might help to distinguish just what you might have. Just be patient with her for a while longer, because it does seem as if she's trying really hard. Just try to hang in there. Sue On Wednesday, February 22, 2006, at 08:31 PM, mtbargeman30 wrote: > Ok, I might just be retarded, but here goes. I went to see the rheumy a > couple weeks ago. She gave me prednisone, but when i started to taper > down to two a day, i got a flare, So went back today, she upped the > dose, gave me another script. Sent me for anti-CCP, liver function > tests, and some other test i couldn't make out. Then said when I go > back to her in four weeks, she will start me on methotrexate.But she > still hasn't given me a concrete diagnosis. She calls it either " this " > or inflammatory arthritis, and then only if I push. So what the %^ & & > is " this " ? How can she give me all kinds of crazy pills I have to take > forever and not give a concrete diagnosis? If anyone has any idea where > this might possibly be headed, and what size paddle I need for the > RIVER of CRAP, please let me know. Thank You. > > Jane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2006 Report Share Posted February 23, 2006 Jane, I went through it too it took a ear before I was diagnosed with Ra I was given so many meds Now I was diagnosed with Ra and Rls (restless legs Syndrome) -- Re: [ ] Rheumy confusion-HELP Jane, I went through this as well even though I was lucky enough to get a diagnosis after 1 and a half years. I was given all kinds of medication without a true diagnosis. After speaking with my new rheumy she explained to me that she was treating me for the inflamation in my body and that even though I didn't have a true diagnosis, my blood work did show a high amount of inflamation. I have now been diagnosed with lupus as well as rheumatoid arthritis. I know it's frustrating. My only advice to you is that if you are not happy with what your rheumy is telling you, find a new one. That's what I had to do before I got my diagnosis. It seems you definately need one that will be more open and tell you what they are treating you for. Best of wishes, Holly Sue <marysue@...> wrote: Jane, These autoimmune diseases are very hard to diagnose. Many people don't get a firm diagnosis for years. I got an incorrect diagnosis at first, even though my first rheumy was wonderful and very knowledgeable. Maybe she thinks that if the methotrexate helps you, it might help to distinguish just what you might have. Just be patient with her for a while longer, because it does seem as if she's trying really hard. Just try to hang in there. Sue On Wednesday, February 22, 2006, at 08:31 PM, mtbargeman30 wrote: > Ok, I might just be retarded, but here goes. I went to see the rheumy a > couple weeks ago. She gave me prednisone, but when i started to taper > down to two a day, i got a flare, So went back today, she upped the > dose, gave me another script. Sent me for anti-CCP, liver function > tests, and some other test i couldn't make out. Then said when I go > back to her in four weeks, she will start me on methotrexate.But she > still hasn't given me a concrete diagnosis. She calls it either " this " > or inflammatory arthritis, and then only if I push. So what the %^ & & > is " this " ? How can she give me all kinds of crazy pills I have to take > forever and not give a concrete diagnosis? If anyone has any idea where > this might possibly be headed, and what size paddle I need for the > RIVER of CRAP, please let me know. Thank You. > > Jane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2006 Report Share Posted February 23, 2006 In a message dated 2/23/2006 2:45:33 PM Central Standard Time, mtbargeman30@... writes: Is mtx that bad? Because if its that nasty, I wont take it. I dont have time for a pill to make me sicker than I am already. Either it works without making me sick, or I dont need it. Is there some other drug besides mtx? Mtx isnt that bad. Some people have nausea after they take it. I personally havent had any side effects from it other than a headache the next day. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2006 Report Share Posted February 23, 2006 Jane, Welcome to the fun world of autoimmune disorders! I'm on prednisone, plaquinil, and methotrexate, but my rheumy has never given me a diagnosis either. She has often said, " It doesn't look like anything I know of. " I snagged a peek at a billing sheet and saw she coded lupus for the insurance company (that's what my PCP had already diagnosed me with), but because my labs are odd and some of my symptoms are rare, my rheumy tends to be pretty cagey. For me, I've decided that the bottom line is that she's (finally) treating me in a way that's helping. Yes, it would be validating to have her tell me she finally believes I have lupus, but I don't see it happening. By the way, good luck on the methotrexate. I've been on it about 1-1/2 months and it's harsh, but it helps. If you start getting sick, ask about upping the folic acid they have you take with it; I had to take 5 mg/day to make the nausea quit. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2006 Report Share Posted February 23, 2006 Is mtx that bad? Because if its that nasty, I wont take it. I dont have time for a pill to make me sicker than I am already. Either it works without making me sick, or I dont need it. Is there some other drug besides mtx? julie gellertligon <drjuliegl@...> wrote: Jane, Welcome to the fun world of autoimmune disorders! I'm on prednisone, plaquinil, and methotrexate, but my rheumy has never given me a diagnosis either. She has often said, " It doesn't look like anything I know of. " I snagged a peek at a billing sheet and saw she coded lupus for the insurance company (that's what my PCP had already diagnosed me with), but because my labs are odd and some of my symptoms are rare, my rheumy tends to be pretty cagey. For me, I've decided that the bottom line is that she's (finally) treating me in a way that's helping. Yes, it would be validating to have her tell me she finally believes I have lupus, but I don't see it happening. By the way, good luck on the methotrexate. I've been on it about 1-1/2 months and it's harsh, but it helps. If you start getting sick, ask about upping the folic acid they have you take with it; I had to take 5 mg/day to make the nausea quit. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2006 Report Share Posted February 23, 2006 Hi : No, Mtx is not that bad. It is one of the DMARDs that has the longest track record of treating RA. There are other DMARDs that you could try, but they all come with side effects, unfortunately. I take Mtx, and have for 4 years now, have taken oral, injectible, then back to oral because the injectible was hard to get a hold of. I don't have any stomach problems either way, it just seemed to work better injected. I take it on Friday night, after dinner, and then go to sleep - that way, any nausea is slept through. I do have more fatigue on Saturday, but that is about it. It is your choice whether you take a certain med or not, but Mtx has long been a RA treatment with good results. Best of luck, Kathe in CA --- Bargeman <mtbargeman30@...> wrote: > Is mtx that bad? Because if its that nasty, I wont > take it. I dont have time for a pill to make me > sicker than I am already. Either it works without > making me sick, or I dont need it. Is there some > other drug besides mtx? > > julie gellertligon <drjuliegl@...> wrote: > Jane, > > Welcome to the fun world of autoimmune disorders! > I'm > on prednisone, plaquinil, and methotrexate, but my > rheumy has never given me a diagnosis either. She > has > often said, " It doesn't look like anything I know > of. " > I snagged a peek at a billing sheet and saw she > coded > lupus for the insurance company (that's what my PCP > had already diagnosed me with), but because my labs > are odd and some of my symptoms are rare, my rheumy > tends to be pretty cagey. For me, I've decided that > the bottom line is that she's (finally) treating me > in > a way that's helping. Yes, it would be validating > to > have her tell me she finally believes I have lupus, > but I don't see it happening. > > By the way, good luck on the methotrexate. I've > been > on it about 1-1/2 months and it's harsh, but it > helps. > If you start getting sick, ask about upping the > folic > acid they have you take with it; I had to take 5 > mg/day to make the nausea quit. > > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2006 Report Share Posted February 23, 2006 Here are my 2 cents, for what it's worth. I have been om MTX for almost one year and had no problem with it. I suppose some people are sensitive to one drug and some to others. Then again, some of the nasty side effect are probably be dose related. Take care. Bargeman <mtbargeman30@...> wrote: Is mtx that bad? Because if its that nasty, I wont take it. I dont have time for a pill to make me sicker than I am already. Either it works without making me sick, or I dont need it. Is there some other drug besides mtx? julie gellertligon <drjuliegl@...> wrote: Jane, Welcome to the fun world of autoimmune disorders! I'm on prednisone, plaquinil, and methotrexate, but my rheumy has never given me a diagnosis either. She has often said, " It doesn't look like anything I know of. " I snagged a peek at a billing sheet and saw she coded lupus for the insurance company (that's what my PCP had already diagnosed me with), but because my labs are odd and some of my symptoms are rare, my rheumy tends to be pretty cagey. For me, I've decided that the bottom line is that she's (finally) treating me in a way that's helping. Yes, it would be validating to have her tell me she finally believes I have lupus, but I don't see it happening. By the way, good luck on the methotrexate. I've been on it about 1-1/2 months and it's harsh, but it helps. If you start getting sick, ask about upping the folic acid they have you take with it; I had to take 5 mg/day to make the nausea quit. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2006 Report Share Posted February 23, 2006 , Each person is different with MTX. There are many of other drugs you can use. But MTX is usually one of the first ones. Plaquinil is another drug that comes to mind. For me it was horrible. I had every side effect I could get. I was so sick I just laid on the bathroom floor most of the time...it was closiest to the toilet. I had constant vomiting, diarrhea, nausea, dizziness, eye sores, mouth sores, throat sores, severe fatigue and then I got drug induce pneumonitis. Not amount of folic acid or leukovorin seemed to help with side effects. This is a chemo drug and though its used is much smaller doses for RA it has the potential to have the many of the same side effects. I happen to be one of those people who's body sensitive to drugs. I was working full-time when I started on MTX...it ended my career and caused me the lose of my job. I am now out on long term disability. Everyone is different.. Toni Jane, > > Welcome to the fun world of autoimmune disorders! I'm > on prednisone, plaquinil, and methotrexate, but my > rheumy has never given me a diagnosis either. She has > often said, " It doesn't look like anything I know of. " > I snagged a peek at a billing sheet and saw she coded > lupus for the insurance company (that's what my PCP > had already diagnosed me with), but because my labs > are odd and some of my symptoms are rare, my rheumy > tends to be pretty cagey. For me, I've decided that > the bottom line is that she's (finally) treating me in > a way that's helping. Yes, it would be validating to > have her tell me she finally believes I have lupus, > but I don't see it happening. > > By the way, good luck on the methotrexate. I've been > on it about 1-1/2 months and it's harsh, but it helps. > If you start getting sick, ask about upping the folic > acid they have you take with it; I had to take 5 > mg/day to make the nausea quit. > > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2006 Report Share Posted February 24, 2006 Yes, there are some that are lucky and get little to no side effects. I got them all and they were VERY severe. What was even worst was a doc that keep ignorring my complaints. I had a horrible rheummy then. I was just a set of lab tests and not a real person. This was the worst and longiest 9 months of my life. Now I am trying to ride out this Humira thing...its NOT going well. Toni Jane, > > > > Welcome to the fun world of autoimmune disorders! I'm > > on prednisone, plaquinil, and methotrexate, but my > > rheumy has never given me a diagnosis either. She has > > often said, " It doesn't look like anything I know of. " > > I snagged a peek at a billing sheet and saw she coded > > lupus for the insurance company (that's what my PCP > > had already diagnosed me with), but because my labs > > are odd and some of my symptoms are rare, my rheumy > > tends to be pretty cagey. For me, I've decided that > > the bottom line is that she's (finally) treating me in > > a way that's helping. Yes, it would be validating to > > have her tell me she finally believes I have lupus, > > but I don't see it happening. > > > > By the way, good luck on the methotrexate. I've been > > on it about 1-1/2 months and it's harsh, but it helps. > > If you start getting sick, ask about upping the folic > > acid they have you take with it; I had to take 5 > > mg/day to make the nausea quit. > > > > > > > > > > __________________________________________________ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2006 Report Share Posted February 25, 2006 I have a new rheummy now. He works with me and not against me. He also understands my feelings about all the drugs. So we go VERY slow one med at a time. He also agrees that it makes NO sense to add another drug to counter act the side effects of another drug. I have been to the point where I was taking as many as 14 different things. Most of which was to counter act side effects from the prvious meds...it was truly a snowball type of effect. I am very greatful to have found a good rheummy. Now if I can find a decent family doc I will be happy. Toni Jane, > > > > > > Welcome to the fun world of autoimmune disorders! I'm > > > on prednisone, plaquinil, and methotrexate, but my > > > rheumy has never given me a diagnosis either. She has > > > often said, " It doesn't look like anything I know of. " > > > I snagged a peek at a billing sheet and saw she coded > > > lupus for the insurance company (that's what my PCP > > > had already diagnosed me with), but because my labs > > > are odd and some of my symptoms are rare, my rheumy > > > tends to be pretty cagey. For me, I've decided that > > > the bottom line is that she's (finally) treating me in > > > a way that's helping. Yes, it would be validating to > > > have her tell me she finally believes I have lupus, > > > but I don't see it happening. > > > > > > By the way, good luck on the methotrexate. I've been > > > on it about 1-1/2 months and it's harsh, but it helps. > > > If you start getting sick, ask about upping the folic > > > acid they have you take with it; I had to take 5 > > > mg/day to make the nausea quit. > > > > > > > > > > > > > > > __________________________________________________ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2006 Report Share Posted February 26, 2006 Ihave tried so many PCPs and I have yet to find one that I like. They all seem to want to do GYN exams on me and not really listen to anything else...which I find quite strange!! Toni Jane, > > > > > > > > Welcome to the fun world of autoimmune disorders! I'm > > > > on prednisone, plaquinil, and methotrexate, but my > > > > rheumy has never given me a diagnosis either. She has > > > > often said, " It doesn't look like anything I know of. " > > > > I snagged a peek at a billing sheet and saw she coded > > > > lupus for the insurance company (that's what my PCP > > > > had already diagnosed me with), but because my labs > > > > are odd and some of my symptoms are rare, my rheumy > > > > tends to be pretty cagey. For me, I've decided that > > > > the bottom line is that she's (finally) treating me in > > > > a way that's helping. Yes, it would be validating to > > > > have her tell me she finally believes I have lupus, > > > > but I don't see it happening. > > > > > > > > By the way, good luck on the methotrexate. I've been > > > > on it about 1-1/2 months and it's harsh, but it helps. > > > > If you start getting sick, ask about upping the folic > > > > acid they have you take with it; I had to take 5 > > > > mg/day to make the nausea quit. > > > > > > > > > > > > > > > > > > > > __________________________________________________ > > > > Quote Link to comment Share on other sites More sharing options...
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