Guest guest Posted March 9, 2008 Report Share Posted March 9, 2008 I’m sorry that you are having so much trouble and so little comfort from your doctors. You don’t mention Prednisone but that is usually a medication that will act fairly quickly (sometimes even same day) to relieve inflammation that comes from RA or many other sources. There are some bad side effects of it that develop with long use at high doses so it is better to use it sparingly and only for short times. However, it helps with diagnosis to find out whether or not inflammation is involved with your problems. Any doctor can prescribe this so maybe the doctor you feel most comfortable with would be a good candidate to ask about it. Another treatment is Minoycline and that is sometimes good for people who are having trouble getting relief with other treatments. I’m doing well on Methotrexate and Remicade so I haven’t tried it myself but I do hear good things about it, and it is relatively inexpensive as RA medications go. If you are interested I can try to get you more information about it. The link below gives some information about it from an advocacy site. God bless. Antibiotic Therapy - Road Back Foundation http://www.roadback.org From: Rheumatoid Arthritis [mailto:Rheumatoid Arthritis ] On Behalf Of Sent: Saturday, March 08, 2008 7:15 PM To: Rheumatoid Arthritis Subject: [sPAM] Not Puffy Enough??? Hi All, I came back on here a few months ago due to Humira no longer working for me. I am on 2 tablets of Opana (long acting drug for chronic pain) and Percoset as needed and it still doesn't take away my pain. I can no longer be alone with my son because I cannot diaper or dress him. I am still working but am experiencing horrible fatigue, especially at the end of the day. I have trouble concentrating, mostly at night, and sometimes I cannot understand nor speak, like I am at a loss for words. It is very scary. Anyway, I really wanted to try Rituxan but my doc here in NJ was unsure so he sent me to a NYC doctor. I always tell people not to expect miracles just b/c you are going to a " big " doctor but I didn't take my own advice! The doctor barely examined me and declared that I was " not puffy " enough for this to be an RA flare!!! He said he did believe my pain but felt that it was either from my Fibro or another arthritic condition due to me also having Ulcerative Colitis. I am sorry I am not completely crippled by RA, but I do have some deformity and my main purpose is I am trying to prevent further damage!! Also he said that he had no problem with me being on the narcotics - well I do, I want to be well so I don't have to use them! I know what Fibro pain is and I know what RA pain is too and I know it is RA! My Sed rate was okay, my ANA was positive, Rheumatoid factor negative. The new plan is for me to try Humira once a week for 6 weeks and see how it goes. What do you all think? Not puffy enough??? Thanks, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2008 Report Share Posted March 9, 2008 How would he even know what your puffy baseline is if he's never seen you before?? Sounds like a dumb doctor that knows everything but how to treat a patient with respect. I'm sorry that things aren't going so well right for you right now. Don't give up. There are more doctors out there. -------Original Message------- From: Date: 3/8/2008 10:14:54 PM Rheumatoid Arthritis Subject: Not Puffy Enough??? Hi All,I came back on here a few months ago due to Humira no longer working for me. I am on 2 tablets of Opana (long acting drug for chronic pain) and Percoset as needed and it still doesn't take away my pain. I can no longer be alone with my son because I cannot diaper or dress him. I am still working but am experiencing horrible fatigue, especially at the end of the day. I have trouble concentrating, mostly at night, and sometimes I cannot understand nor speak, like I am at a loss for words. It is very scary.Anyway, I really wanted to try Rituxan but my doc here in NJ was unsure so he sent me to a NYC doctor. I always tell people not to expect miracles just b/c you are going to a "big" doctor but I didn't take my own advice!The doctor barely examined me and declared that I was "not puffy" enough for this to be an RA flare!!! He said he did believe my pain but felt that it was either from my Fibro or another arthritic condition due to me also having Ulcerative Colitis.I am sorry I am not completely crippled by RA, but I do have some deformity and my main purpose is I am trying to prevent further damage!! Also he said that he had no problem with me being on the narcotics - well I do, I want to be well so I don't have to use them!I know what Fibro pain is and I know what RA pain is too and I know it is RA! My Sed rate was okay, my ANA was positive, Rheumatoid factor negative.The new plan is for me to try Humira once a week for 6 weeks and see how it goes.What do you all think? Not puffy enough???Thanks, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2008 Report Share Posted March 9, 2008 Maby the humira will help. I am not young and with a baby. I was first started on methotrexate and prednisone. I did this for about 3 months. Then plaqunil-1 per day and a 50 mg shot of embrel I give to myself per week . I am having so many infections I cant stay on these long enough for them to work. They worked for about 4 months. The infections started it like playing rulet. I was to take an embrel shot today but I am afrain because I have the flu abd bronchitis. I have been on 3 rounds of antibiotics 10 days each in the past 2 months. I have got to make my mind up before I go to bed. I will pray that the new medication you are taking will be the good one so you can take care of your child and be able to enjoy your time with your baby. God Bless Jo Nell > > Hi All, > > I came back on here a few months ago due to Humira no longer working for me. I am > on 2 tablets of Opana (long acting drug for chronic pain) and Percoset as needed and > it still doesn't take away my pain. I can no longer be alone with my son because I > cannot diaper or dress him. I am still working but am experiencing horrible fatigue, > especially at the end of the day. I have trouble concentrating, mostly at night, and > sometimes I cannot understand nor speak, like I am at a loss for words. It is very > scary. > > Anyway, I really wanted to try Rituxan but my doc here in NJ was unsure so he sent > me to a NYC doctor. I always tell people not to expect miracles just b/c you are > going to a " big " doctor but I didn't take my own advice! > > The doctor barely examined me and declared that I was " not puffy " enough for this to > be an RA flare!!! He said he did believe my pain but felt that it was either from my > Fibro or another arthritic condition due to me also having Ulcerative Colitis. > > I am sorry I am not completely crippled by RA, but I do have some deformity and my > main purpose is I am trying to prevent further damage!! Also he said that he had no > problem with me being on the narcotics - well I do, I want to be well so I don't have > to use them! > > I know what Fibro pain is and I know what RA pain is too and I know it is RA! My Sed > rate was okay, my ANA was positive, Rheumatoid factor negative. > > The new plan is for me to try Humira once a week for 6 weeks and see how it goes. > > What do you all think? Not puffy enough??? > > Thanks, > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2008 Report Share Posted March 9, 2008 Dear - I was ready to try rituxan myself but have been battling a chronic glandular infection/obstruction from december due to a recent tooth extraction. It turns out that this condition happens in 80% of all immune disorder patients. I was on Remicade (designed for people with crohnes disease and was forced to discontinue it because of the infection and found that short of a few flares and the fatigue you describe, I felt better without it than with it. This means that I am being managed with low prednisone, plaquenil and Ibuprofen and MTX 6 pills once a week. Now here is the strange thing. I was on high dose Penicillin VK 500mg for a few weeks and it is the only different therapy I have been on since september to have made a difference. Unfortunately, the chronic infection is something serious that I need to now see a specialist for so in essence the RA is manifesting itself via infection in a salivary gland. I have been on Remicade for 7 years and I cant describe HOW effective it was. If you have not been on it, I would try that before rituxan. You go once every 8 weeks to be infused for a few hours and thats it. It is usually fast acting and should bring you to a place where you can resume your life without debilitating fatigue or severe pain. I have gone through dozens of RDs. I have moved to three different states and have found three amazing Rheumatologists. That is three out of 20. My appointment with my Rheumy is this tuesday. He will look at my swollen jaw, see that I havent been on Remicade in six months and I wonder what he will say. I was on cyclosporine first and it worked well for the first 5 years. Its an older drug but very effective in treating RA. It is based on the premise that your body is rejecting you and works via the TNF blocking agent. While you need standard blood tests and urine tests, its just a soil fungus in pill form. It should be taken with MTX of course but give it a try. MTX keeps your body from getting smart to a biologic agent and finding a way around it. It sounds like you are in the zone where your quality of life is severely affected and you must find something to change that. I really know what going to a " big " doctor is like. I have been to several and so the sense of outrage and alienation are even more intense. You know your body and you know what needs to change. I would begin on a 1mg dose of prednisone every day. Keep your liquids up, reduce your salt and caffiene. Eat a lowfat diet. Prednisone is pure adrenaline and if taken in small doses and upped over months, you will not see the side effects usually associated with higher doses. I am living proof of that. It needs food to work and it can work effectively without side effects if you respect it and use it with care. I cannot take a large dose of opiate without allergic reaction so that is reserved for only the most severe moments which are thankfully few just now. You are right to stay off opiate if possible if only for the fact that it makes your intestinal issues worse. My current RD treats me like an associate not as a patient with such respect and intelligence. He teaches and researches so I can say find an RD who teaches and does research and it is usually a great indicator of the caliber of care you will receive. Good Luck. Deborah On Sun, Mar 9, 2008 at 12:14 AM, <catdelouise@...> wrote: Hi All,I came back on here a few months ago due to Humira no longer working for me. I am on 2 tablets of Opana (long acting drug for chronic pain) and Percoset as needed and it still doesn't take away my pain. I can no longer be alone with my son because I cannot diaper or dress him. I am still working but am experiencing horrible fatigue, especially at the end of the day. I have trouble concentrating, mostly at night, and sometimes I cannot understand nor speak, like I am at a loss for words. It is very scary.Anyway, I really wanted to try Rituxan but my doc here in NJ was unsure so he sent me to a NYC doctor. I always tell people not to expect miracles just b/c you are going to a " big " doctor but I didn't take my own advice! The doctor barely examined me and declared that I was " not puffy " enough for this to be an RA flare!!! He said he did believe my pain but felt that it was either from my Fibro or another arthritic condition due to me also having Ulcerative Colitis. I am sorry I am not completely crippled by RA, but I do have some deformity and my main purpose is I am trying to prevent further damage!! Also he said that he had no problem with me being on the narcotics - well I do, I want to be well so I don't have to use them!I know what Fibro pain is and I know what RA pain is too and I know it is RA! My Sed rate was okay, my ANA was positive, Rheumatoid factor negative.The new plan is for me to try Humira once a week for 6 weeks and see how it goes. What do you all think? Not puffy enough???Thanks, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2008 Report Share Posted March 9, 2008 Hi , I am so sorry about your awful experience. This is Steph in VA. I'm 30 and was dx'd with RA in 1999 when I was 22. I was in college in PA when I was dx'd and I'm from Queens, NY. My parents are convinced that EVERYTHIng in NYC is the best. They were sure I would come home from college, be seen by a NYC doc and be cured. Haha. Well, out of the 36 doctors I have seen over the years (includung 5 rheumys in 3 states) the NYC rheumy was the worst! I agree with the others about the jerk that said you weren't puffy enough! When I was dx'd the only biologics that were available were Remicade & Enbrel. My insurance had me take Enbrel for 2 months first, then they paid for Remicade. I have had a great response to Remicade. After the initial "loading" doses (4 doses a weeks 0, 2, 4, 6 and 8) you get it every 4-8 weeks over 2 hours as determined by your rheumy. I get mine every 6 weeks. Remicade is also approved for UC so it may work doubly well for you! Good luck, Steph in VA <catdelouise@...> wrote: Hi All,Also he said that he had no problem with me being on the narcotics - well I do, I want to be well so I don't have to use them! I know what Fibro pain is and I know what RA pain is too and I know it is RA! My Sed rate was okay, my ANA was positive, Rheumatoid factor negative. The new plan is for me to try Humira once a week for 6 weeks and see how it goes. What do you all think? Not puffy enough???Thanks, ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ The 2008 Charlottesville Arthritis Walk is Sat. May 3 at UVA's Stadium The Walk raises both awareness of the prevalence of arthritis and money for research & programs for people with arthritis! The Cville walk includes a simultaneous Dog Walk as well. "Never underestimate the power of a small, dedicated group of people to change the world -- indeed, it's the only thing that ever has." (Margaret Mead) AmeriCorps Alums -- Still Getting Things Done Never miss a thing. Make your homepage. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2008 Report Share Posted March 11, 2008 , I agree with Debrorah. Try Remicade! After I had my daughter in 2000 I couldnt dress myself let alone my daughter. I started remicade and have been on it ever since. It is amazing. I still have bad times and still take narcotics but at least I can take care of myself and my family. Good Luck!!! Deborah Bargad <dbargad@...> wrote: Dear - I was ready to try rituxan myself but have been battling a chronic glandular infection/obstruction from december due to a recent tooth extraction. It turns out that this condition happens in 80% of all immune disorder patients. I was on Remicade (designed for people with crohnes disease and was forced to discontinue it because of the infection and found that short of a few flares and the fatigue you describe, I felt better without it than with it. This means that I am being managed with low prednisone, plaquenil and Ibuprofen and MTX 6 pills once a week. Now here is the strange thing. I was on high dose Penicillin VK 500mg for a few weeks and it is the only different therapy I have been on since september to have made a difference. Unfortunately, the chronic infection is something serious that I need to now see a specialist for so in essence the RA is manifesting itself via infection in a salivary gland. I have been on Remicade for 7 years and I cant describe HOW effective it was. If you have not been on it, I would try that before rituxan. You go once every 8 weeks to be infused for a few hours and thats it. It is usually fast acting and should bring you to a place where you can resume your life without debilitating fatigue or severe pain. I have gone through dozens of RDs. I have moved to three different states and have found three amazing Rheumatologists. That is three out of 20. My appointment with my Rheumy is this tuesday. He will look at my swollen jaw, see that I havent been on Remicade in six months and I wonder what he will say. I was on cyclosporine first and it worked well for the first 5 years. Its an older drug but very effective in treating RA. It is based on the premise that your body is rejecting you and works via the TNF blocking agent. While you need standard blood tests and urine tests, its just a soil fungus in pill form. It should be taken with MTX of course but give it a try. MTX keeps your body from getting smart to a biologic agent and finding a way around it. It sounds like you are in the zone where your quality of life is severely affected and you must find something to change that. I really know what going to a "big" doctor is like. I have been to several and so the sense of outrage and alienation are even more intense. You know your body and you know what needs to change. I would begin on a 1mg dose of prednisone every day. Keep your liquids up, reduce your salt and caffiene. Eat a lowfat diet. Prednisone is pure adrenaline and if taken in small doses and upped over months, you will not see the side effects usually associated with higher doses. I am living proof of that. It needs food to work and it can work effectively without side effects if you respect it and use it with care. I cannot take a large dose of opiate without allergic reaction so that is reserved for only the most severe moments which are thankfully few just now. You are right to stay off opiate if possible if only for the fact that it makes your intestinal issues worse. My current RD treats me like an associate not as a patient with such respect and intelligence. He teaches and researches so I can say find an RD who teaches and does research and it is usually a great indicator of the caliber of care you will receive. Good Luck. Deborah On Sun, Mar 9, 2008 at 12:14 AM, <catdelouisecomcast (DOT) net> wrote: Hi All,I came back on here a few months ago due to Humira no longer working for me. I am on 2 tablets of Opana (long acting drug for chronic pain) and Percoset as needed and it still doesn't take away my pain. I can no longer be alone with my son because I cannot diaper or dress him. I am still working but am experiencing horrible fatigue, especially at the end of the day. I have trouble concentrating, mostly at night, and sometimes I cannot understand nor speak, like I am at a loss for words. It is very scary.Anyway, I really wanted to try Rituxan but my doc here in NJ was unsure so he sent me to a NYC doctor. I always tell people not to expect miracles just b/c you are going to a "big" doctor but I didn't take my own advice!The doctor barely examined me and declared that I was "not puffy" enough for this to be an RA flare!!! He said he did believe my pain but felt that it was either from my Fibro or another arthritic condition due to me also having Ulcerative Colitis.I am sorry I am not completely crippled by RA, but I do have some deformity and my main purpose is I am trying to prevent further damage!! Also he said that he had no problem with me being on the narcotics - well I do, I want to be well so I don't have to use them!I know what Fibro pain is and I know what RA pain is too and I know it is RA! My Sed rate was okay, my ANA was positive, Rheumatoid factor negative.The new plan is for me to try Humira once a week for 6 weeks and see how it goes.What do you all think? Not puffy enough???Thanks, Looking for last minute shopping deals? Find them fast with Search. Quote Link to comment Share on other sites More sharing options...
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