Guest guest Report post Posted August 30, 2012 Hi and group, I don't know if anyone told you but plaquenil (sp?) takes like 6 months to build up in your body for it to start working. So, it will take that long before you can start feeling it. Maybe 3-4 months at the earliest. It's not that long in the end game but when your hurting it's long. Your doctor may also have you get your eyes check on a yearly to every other basis. It's just to look (ha ha) for a side effect. It's a precaution, so worries. Hugs, J.J. Sent from my iPhone > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted August 30, 2012 When you said UTI, it jogged my memory (lots of tv in past 6 weeks do to flare and pain). My news had a report on it about mainly women getting UTI's over and over again from an anti-resistance bug. It's a bug found in chickens and scientist were trying to link the two together. My google-Fu is not much for my short times online but you might want to look at it to see if it's of interest to you. I'm sorry you are not feeling good. Hugs, J.J. Sent from my iPhone > > > ________________________________ > > To: Stillsdisease > Sent: Thursday, August 30, 2012 9:17 AM > Subject: Re: Hello > Hi , I relate to what you're going through. I have also filed for disability as well and I have a lawyer. I was told back in Dec that I possibly could have Adult Stills Disease,and it was confirmed in Feb that is for certain that I have Stills. I too have a lot of joint pain,fatigue,and every few days my fever will spike. I haven't posted much because I've been fighting constant UTI's which are so much more worse to cope and deal with then the Stills. ''in my opinion'' at least the Methotrioxate helps and the lyrica...and my pain rate went from a high 9 to a low 5. I hope you get approved and wish you all the best on your ventures with getting disability. This is my first time applying so we'll see what happens. Please keep us updated on how you're doing.This is truly a wonderful group of people and the support you'll receive here is fantastic to say the least.... Take care....blessings... > > > > > Thank you so much for the encouragement. I will look for a second opinion as you suggested . I do have an appointment today with my rheum. to evaluate the plaquenil which I started at the beginning of aug. > > Thanks! > > Hello > > > > Dear , > > Sometimes people do get dual diagnoses or their diagnoses’ are changed and it may happen with years in between. I would suggest if you have the ability to get a second opinion maybe you would want to consider that? > > As for applying for disability, it often happens that people get turned down especially when the diagnoses isn’t clear. Getting a lawyer can help in the process and getting copies of your records or files may also help the process. > > We wish you success and I want to say you are always welcome here for support whatever your disease is. Please keep us updated on how you are doing. > > Many hugs, > > From: Lbrasero > > My name is and I was dx with aosd in Jan. after ruling out Lymphoma and Hodgkins disease. My rheum. now says because biopsies from my Lymph nodes showed necrotizing granulomatous Lymphadenitis, It is not stills and it was probably an infectious process. The problem is that I still am having joint pain and extreme fatigue. She also has me on plaquenil. I haven't had fever or weight loss since feb. I don't feel much difference with the plaquenil. Has anyone else had a similiar experience? I'm very confused , I don't feel well and I haven't worked since nov. I applied for disability and was turned down twice and now have a lawyer.If anyone else has had a similiar experience please let me know. Thank you! > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted August 30, 2012 When you said UTI, it jogged my memory (lots of tv in past 6 weeks do to flare and pain). My news had a report on it about mainly women getting UTI's over and over again from an anti-resistance bug. It's a bug found in chickens and scientist were trying to link the two together. My google-Fu is not much for my short times online but you might want to look at it to see if it's of interest to you. I'm sorry you are not feeling good. Hugs, J.J. Sent from my iPhone > > > ________________________________ > > To: Stillsdisease > Sent: Thursday, August 30, 2012 9:17 AM > Subject: Re: Hello > Hi , I relate to what you're going through. I have also filed for disability as well and I have a lawyer. I was told back in Dec that I possibly could have Adult Stills Disease,and it was confirmed in Feb that is for certain that I have Stills. I too have a lot of joint pain,fatigue,and every few days my fever will spike. I haven't posted much because I've been fighting constant UTI's which are so much more worse to cope and deal with then the Stills. ''in my opinion'' at least the Methotrioxate helps and the lyrica...and my pain rate went from a high 9 to a low 5. I hope you get approved and wish you all the best on your ventures with getting disability. This is my first time applying so we'll see what happens. Please keep us updated on how you're doing.This is truly a wonderful group of people and the support you'll receive here is fantastic to say the least.... Take care....blessings... > > > > > Thank you so much for the encouragement. I will look for a second opinion as you suggested . I do have an appointment today with my rheum. to evaluate the plaquenil which I started at the beginning of aug. > > Thanks! > > Hello > > > > Dear , > > Sometimes people do get dual diagnoses or their diagnoses’ are changed and it may happen with years in between. I would suggest if you have the ability to get a second opinion maybe you would want to consider that? > > As for applying for disability, it often happens that people get turned down especially when the diagnoses isn’t clear. Getting a lawyer can help in the process and getting copies of your records or files may also help the process. > > We wish you success and I want to say you are always welcome here for support whatever your disease is. Please keep us updated on how you are doing. > > Many hugs, > > From: Lbrasero > > My name is and I was dx with aosd in Jan. after ruling out Lymphoma and Hodgkins disease. My rheum. now says because biopsies from my Lymph nodes showed necrotizing granulomatous Lymphadenitis, It is not stills and it was probably an infectious process. The problem is that I still am having joint pain and extreme fatigue. She also has me on plaquenil. I haven't had fever or weight loss since feb. I don't feel much difference with the plaquenil. Has anyone else had a similiar experience? I'm very confused , I don't feel well and I haven't worked since nov. I applied for disability and was turned down twice and now have a lawyer.If anyone else has had a similiar experience please let me know. Thank you! > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted August 30, 2012 When you said UTI, it jogged my memory (lots of tv in past 6 weeks do to flare and pain). My news had a report on it about mainly women getting UTI's over and over again from an anti-resistance bug. It's a bug found in chickens and scientist were trying to link the two together. My google-Fu is not much for my short times online but you might want to look at it to see if it's of interest to you. I'm sorry you are not feeling good. Hugs, J.J. Sent from my iPhone > > > ________________________________ > > To: Stillsdisease > Sent: Thursday, August 30, 2012 9:17 AM > Subject: Re: Hello > Hi , I relate to what you're going through. I have also filed for disability as well and I have a lawyer. I was told back in Dec that I possibly could have Adult Stills Disease,and it was confirmed in Feb that is for certain that I have Stills. I too have a lot of joint pain,fatigue,and every few days my fever will spike. I haven't posted much because I've been fighting constant UTI's which are so much more worse to cope and deal with then the Stills. ''in my opinion'' at least the Methotrioxate helps and the lyrica...and my pain rate went from a high 9 to a low 5. I hope you get approved and wish you all the best on your ventures with getting disability. This is my first time applying so we'll see what happens. Please keep us updated on how you're doing.This is truly a wonderful group of people and the support you'll receive here is fantastic to say the least.... Take care....blessings... > > > > > Thank you so much for the encouragement. I will look for a second opinion as you suggested . I do have an appointment today with my rheum. to evaluate the plaquenil which I started at the beginning of aug. > > Thanks! > > Hello > > > > Dear , > > Sometimes people do get dual diagnoses or their diagnoses’ are changed and it may happen with years in between. I would suggest if you have the ability to get a second opinion maybe you would want to consider that? > > As for applying for disability, it often happens that people get turned down especially when the diagnoses isn’t clear. Getting a lawyer can help in the process and getting copies of your records or files may also help the process. > > We wish you success and I want to say you are always welcome here for support whatever your disease is. Please keep us updated on how you are doing. > > Many hugs, > > From: Lbrasero > > My name is and I was dx with aosd in Jan. after ruling out Lymphoma and Hodgkins disease. My rheum. now says because biopsies from my Lymph nodes showed necrotizing granulomatous Lymphadenitis, It is not stills and it was probably an infectious process. The problem is that I still am having joint pain and extreme fatigue. She also has me on plaquenil. I haven't had fever or weight loss since feb. I don't feel much difference with the plaquenil. Has anyone else had a similiar experience? I'm very confused , I don't feel well and I haven't worked since nov. I applied for disability and was turned down twice and now have a lawyer.If anyone else has had a similiar experience please let me know. Thank you! > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted August 31, 2012 Hi JJ Thanks for the info, Yes I did have my eyes checked and you are right I need to have them checked again in feb as long as I am on plaquenil. I don't know if my Dr. told me before but I just saw her yesterday and she did tell me that I needed to be on the plaquenil for at least 12 wks to have any therapeutic effect. I was supposed to have been on lose dose prednisone as a bridge but I misunderstood her directions the last time. Even though I am an RN this brain fog makes it hard to remember things and comprehend things the way I used to.I restarted the prednisone at 5mg daily and i'll start cytmbalta mon. Maybe that will help with the pain. Thank you so much for you kindness  Re: Hello  Hi and group, I don't know if anyone told you but plaquenil (sp?) takes like 6 months to build up in your body for it to start working. So, it will take that long before you can start feeling it. Maybe 3-4 months at the earliest. It's not that long in the end game but when your hurting it's long. Your doctor may also have you get your eyes check on a yearly to every other basis. It's just to look (ha ha) for a side effect. It's a precaution, so worries. Hugs, J.J. Sent from my iPhone > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted August 31, 2012 Hi JJ Thanks for the info, Yes I did have my eyes checked and you are right I need to have them checked again in feb as long as I am on plaquenil. I don't know if my Dr. told me before but I just saw her yesterday and she did tell me that I needed to be on the plaquenil for at least 12 wks to have any therapeutic effect. I was supposed to have been on lose dose prednisone as a bridge but I misunderstood her directions the last time. Even though I am an RN this brain fog makes it hard to remember things and comprehend things the way I used to.I restarted the prednisone at 5mg daily and i'll start cytmbalta mon. Maybe that will help with the pain. Thank you so much for you kindness  Re: Hello  Hi and group, I don't know if anyone told you but plaquenil (sp?) takes like 6 months to build up in your body for it to start working. So, it will take that long before you can start feeling it. Maybe 3-4 months at the earliest. It's not that long in the end game but when your hurting it's long. Your doctor may also have you get your eyes check on a yearly to every other basis. It's just to look (ha ha) for a side effect. It's a precaution, so worries. Hugs, J.J. Sent from my iPhone > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted August 31, 2012 I think I need some clarification - is there really a firm diagnosis for Stills? I'm sort of a newbie to this & sometimes I don't know which end is up. Sometimes I think I'm overmedicated yet I'm still in pain. Also afraid I'm going to lose my job since I can't seem to work a full day or week. Tina Sent from Yahoo! Mail on Android Quote Share this post Link to post Share on other sites
