Guest guest Posted May 18, 2009 Report Share Posted May 18, 2009 Oh, so your rheumy is the Wicked Witch of the West? LOL. Sue On May 18, 2009, at 11:43 AM, stanpfister@... wrote: > > > Folic Acid and Vitamin D seem to be the essentials with our RA meds. > My Rhematologist told me the Folic Acid helps a lot with oral > issues. We didn't have time to discuss vitamin D but she's always > checking my blood work for it, then she had a meeting with her > flying monkeys. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 18, 2009 Report Share Posted May 18, 2009 I'm actually having some issues with her. She told me she wanted to start Enbrel on the next visit, when the visit came she said I don't need to start it, and if I do, then she needs to treat me for TB because I tested positive (some kind of exposure at some point I can't remember) and that will take nine months. But that's why I cannot take Humaira at all. I wanted to start the Enbrel because many in the Group have had positive results with it. But noooooooooo, I'm staying on MTX for now. I'm just on the edge of feeling better even with the RA (at least as good as I can). So now I am confused and a little annoyed, I am in the process of setting up my medical requirements with the VA so I am going to get a second opinion. I am not sure why she keeps changing her mind, but I don't have access to the big crystal ball. Stan, Seattle, Two days of sun NOW rain! Oh, so your rheumy is the Wicked Witch of the West? LOL. Sue On May 18, 2009, at 11:43 AM, stanpfister@... wrote: > > > Folic Acid and Vitamin D seem to be the essentials with our RA meds.  > My Rhematologist told me the Folic Acid helps a lot with oral  > issues. We didn't have time to discuss vitamin D but she's always  > checking my blood work for it, then she had a meeting with her  > flying monkeys. > ------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 18, 2009 Report Share Posted May 18, 2009 Stan, im sorry to hear that the biologics are just out of reach. Let us know what the va doc thinks. Dennis, you too, get that paperwork in!!! Bossily, Kate Sent from my iPhone On May 18, 2009, at 10:10 PM, stanpfister@... wrote: I'm actually having some issues with her. She told me she wanted to start Enbrel on the next visit, when the visit came she said I don't need to start it, and if I do, then she needs to treat me for TB because I tested positive (some kind of exposure at some point I can't remember) and that will take nine months. But that's why I cannot take Humaira at all. I wanted to start the Enbrel because many in the Group have had positive results with it. But noooooooooo, I'm staying on MTX for now. I'm just on the edge of feeling better even with the RA (at least as good as I can). So now I am confused and a little annoyed, I am in the process of setting up my medical requirements with the VA so I am going to get a second opinion. I am not sure why she keeps changing her mind, but I don't have access to the big crystal ball. Stan, Seattle, Two days of sun NOW rain! Oh, so your rheumy is the Wicked Witch of the West? LOL. Sue On May 18, 2009, at 11:43 AM, stanpfister@... wrote: > > > Folic Acid and Vitamin D seem to be the essentials with our RA meds. > My Rhematologist told me the Folic Acid helps a lot with oral > issues. We didn't have time to discuss vitamin D but she's always > checking my blood work for it, then she had a meeting with her > flying monkeys. > ------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 18, 2009 Report Share Posted May 18, 2009 I tested positive for TB too when I had my TB test before I could go on Enbrel BUT they did another TB test on me because my Rheumy said that a lot of times a TB test can come back as a " false " positive which mine turned out to be. I would definitely have another TB test done and yes, please get a second opinion. What does think? Or is he in one of his moods? LOL Shay Michigan -- Re: [ ] Stan's rheumy I'm actually having some issues with her. She told me she wanted to start Enbrel on the next visit, when the visit came she said I don't need to start it, and if I do, then she needs to treat me for TB because I tested positive (some kind of exposure at some point I can't remember) and that will take nine months. But that's why I cannot take Humaira at all. I wanted to start the Enbrel because many in the Group have had positive results with it. But noooooooooo, I'm staying on MTX for now. I'm just on the edge of feeling better even with the RA (at least as good as I can). So now I am confused and a little annoyed, I am in the process of setting up my medical requirements with the VA so I am going to get a second opinion. I am not sure why she keeps changing her mind, but I don't have access to the big crystal ball. Stan, Seattle, Two days of sun NOW rain! Oh, so your rheumy is the Wicked Witch of the West? LOL. Sue On May 18, 2009, at 11:43 AM, stanpfister@... wrote: > > > Folic Acid and Vitamin D seem to be the essentials with our RA meds. > My Rhematologist told me the Folic Acid helps a lot with oral > issues. We didn't have time to discuss vitamin D but she's always > checking my blood work for it, then she had a meeting with her > flying monkeys. > ------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 18, 2009 Report Share Posted May 18, 2009 Stan, she's just being cautious, because I believe that the biologics can cause latent TB to come out. I'm sure will correct me if I'm stating it incorrectly. Sue On May 18, 2009, at 11:10 PM, stanpfister@... wrote: > > I'm actually having some issues with her. She told me she wanted to > start Enbrel on the next visit, when the visit came she said I don't > need to start it, and if I do, then she needs to treat me for TB > because I tested positive (some kind of exposure at some point I > can't remember) and that will take nine months. But that's why I > cannot take Humaira at all. I wanted to start the Enbrel because > many in the Group have had positive results with it. But > noooooooooo, I'm staying on MTX for now. I'm just on the edge of > feeling better even with the RA (at least as good as I can). So now > I am confused and a little annoyed, I am in the process of setting > up my medical requirements with the VA so I am going to get a second > opinion. I am not sure why she keeps changing her mind, but I don't > have access to the big crystal ball. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 18, 2009 Report Share Posted May 18, 2009 Yes, Mother!! We are actually putting it together and had planned to go to the Tyler VA office today after a doctor's appointment, but there was NO appointment. Wrong doc, wrong blood test and no results, but we did get gas money for our troubles. Also, I fell Saturday and scraped a big chunk of skin (about 2 " by 6 " ) and a little meat off my right arm, so I wasn't in a good mood at all. I'll plan another visit soon, I promise. Thanks for the reminders, Kate. Dennis in eastexas-on the mend, and soon, Enbrel On Mon, May 18, 2009 at 10:18 PM, Kate Fair <kalfoley@...> wrote: > > > Stan, im sorry to hear that the biologics are just out of reach. > Let us know what the va doc thinks. Dennis, you too, get that paperwork > in!!! > Bossily, Kate > > Sent from my iPhone > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 18, 2009 Report Share Posted May 18, 2009 Oh Dennis...what a fall. I hope you heal rapidly. You must be awfully stiff. Raniolo > > > Stan, im sorry to hear that the biologics are just out of reach. > Let us know what the va doc thinks. Dennis, you too, get that paperwork > in!!! > Bossily, Kate > > Sent from my iPhone > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 18, 2009 Report Share Posted May 18, 2009 I have been told the issue with biologics is they alter the immune system to fight the disease. In my case my body has learned to " adapt " to hepatitis. If My immune system changes I may develop incurable liver damage. I am sure this would be true of TB. I survived ovarian ca 16 years ago. My physicians and I decided to live with the ravages of RA. As he said he would rather see me in a wheel chair than ........ It is a very personal decision and each person must evaluate other health issues with RA decisions... Raniolo > > > Folic Acid and Vitamin D seem to be the essentials with our RA meds. > My Rhematologist told me the Folic Acid helps a lot with oral > issues. We didn't have time to discuss vitamin D but she's always > checking my blood work for it, then she had a meeting with her > flying monkeys. > ------------ --------- --------- ------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 18, 2009 Report Share Posted May 18, 2009 I think that's a good idea because I've never had TB, think I would remember it if I did, but I've been to enough places that I may have been exposed (at least that's what my GP and Rheumatologist say). has been fine lately, he's been very excited by some recent posts which I personally could care less about. He's working on perfecting his Diagonal Rib stitch, I think he's gay, shhhhhh! Stan Seattle, Rain. I tested positive for TB too when I had my TB test before I could go on Enbrel BUT they did another TB test on me because my Rheumy said that a lot of times a TB test can come back as a " false " positive which mine turned out to be. I would definitely have another TB test done and yes, please get a second opinion. What does think? Or is he in one of his moods? LOL Shay Michigan  -- Re: [ ] Stan's rheumy   I'm actually having some issues with her. She told me she wanted to start Enbrel on the next visit, when the visit came she said I don't need to start it, and if I do, then she needs to treat me for TB because I tested positive (some kind of exposure at some point I can't remember) and that will take nine months. But that's why I cannot take Humaira at all. I wanted to start the Enbrel because many in the Group have had positive results with it. But noooooooooo, I'm staying on MTX for now. I'm just on the edge of feeling better even with the RA (at least as good as I can). So now I am confused and a little annoyed, I am in the process of setting up my medical requirements with the VA so I am going to get a second opinion. I am not sure why she keeps changing her mind, but I don't have access to the big crystal ball.    Stan,  Seattle, Two days of sun NOW rain!         Oh, so your rheumy is the Wicked Witch of the West? LOL.  Sue  On May 18, 2009, at 11:43 AM, stanpfister@... wrote:  > > > Folic Acid and Vitamin D seem to be the essentials with our RA meds. > My Rhematologist told me the Folic Acid helps a lot with oral > issues. We didn't have time to discuss vitamin D but she's always > checking my blood work for it, then she had a meeting with her > flying monkeys. >    ------------------------------------  Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 18, 2009 Report Share Posted May 18, 2009 There's a lot the biologics can do and she does lean towards caution. I can appreciate that, but at the same time I don't want her to be too careful because if there's something that works I'm perfectly willing to try it. Stan Seattle, Rain. Stan, she's just being cautious, because I believe that the biologics  can cause latent TB to come out. I'm sure will correct me if I'm  stating it incorrectly. Sue On May 18, 2009, at 11:10 PM, stanpfister@... wrote: > > I'm actually having some issues with her. She told me she wanted to  > start Enbrel on the next visit, when the visit came she said I don't  > need to start it, and if I do, then she needs to treat me for TB  > because I tested positive (some kind of exposure at some point I  > can't remember) and that will take nine months. But that's why I  > cannot take Humaira at all. I wanted to start the Enbrel because  > many in the Group have had positive results with it. But  > noooooooooo, I'm staying on MTX for now. I'm just on the edge of  > feeling better even with the RA (at least as good as I can). So now  > I am confused and a little annoyed, I am in the process of setting  > up my medical requirements with the VA so I am going to get a second  > opinion. I am not sure why she keeps changing her mind, but I don't  > have access to the big crystal ball. ------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2009 Report Share Posted May 19, 2009 Every visit to the Rheumatologist is a surprise, once during our fifteen minute session she asked me three times how old I was, on the third time I told her " I'm still fifty-six! " Dennis should get that paperwork in, there's nothing like a visit to the VA to remind you of the good ol' days. All guys our age still have that " I'm screwed " : expression! lol! Stan, Seattle, rain. Stan, im sorry to hear that the biologics are just out of reach. Let us know what the va doc thinks. Dennis, you too, get that paperwork in!!! Bossily, Kate Sent from my iPhone On May 18, 2009, at 10:10 PM, stanpfister@... wrote: I'm actually having some issues with her. She told me she wanted to start Enbrel on the next visit, when the visit came she said I don't need to start it, and if I do, then she needs to treat me for TB because I tested positive (some kind of exposure at some point I can't remember) and that will take nine months. But that's why I cannot take Humaira at all. I wanted to start the Enbrel because many in the Group have had positive results with it. But noooooooooo, I'm staying on MTX for now. I'm just on the edge of feeling better even with the RA (at least as good as I can). So now I am confused and a little annoyed, I am in the process of setting up my medical requirements with the VA so I am going to get a second opinion. I am not sure why she keeps changing her mind, but I don't have access to the big crystal ball. Stan, Seattle, Two days of sun NOW rain! Oh, so your rheumy is the Wicked Witch of the West? LOL. Sue On May 18, 2009, at 11:43 AM, stanpfister@... wrote: > > > Folic Acid and Vitamin D seem to be the essentials with our RA meds.  > My Rhematologist told me the Folic Acid helps a lot with oral  > issues. We didn't have time to discuss vitamin D but she's always  > checking my blood work for it, then she had a meeting with her  > flying monkeys. > ------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2009 Report Share Posted May 19, 2009 , I also had HCV for many years (recently treated) and RA. I'm curious about what you're saying. If you'd like to " talk " off-list, please e-mail me at dorv@... _____ From: [mailto: ] On Behalf Of CATHERINE RANIOLO Sent: Tuesday, May 19, 2009 12:38 AM Subject: Re: [ ] Stan's rheumy I have been told the issue with biologics is they alter the immune system to fight the disease. In my case my body has learned to " adapt " to hepatitis. If My immune system changes I may develop incurable liver damage. I am sure this would be true of TB. I survived ovarian ca 16 years ago. My physicians and I decided to live with the ravages of RA. As he said he would rather see me in a wheel chair than ......... It is a very personal decision and each person must evaluate other health issues with RA decisions... Raniolo > > > Folic Acid and Vitamin D seem to be the essentials with our RA meds. > My Rhematologist told me the Folic Acid helps a lot with oral > issues. We didn't have time to discuss vitamin D but she's always > checking my blood work for it, then she had a meeting with her > flying monkeys. > ------------ --------- --------- ------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2009 Report Share Posted May 19, 2009 LOL, Sue. That's right. Stan, you can be infected with tuberculosis and not realize it. The symptoms can be mild, and your body can successfully prevent the disease from becoming active TB. Without treatment though, the bacteria is still present. Under certain circumstances, latent TB can become active TB. As Sue said, the use of anti-TNF biologics can result in the activation of latent TB. Not an MD On Mon, May 18, 2009 at 10:31 PM, marysue <marysue@...> wrote: > > > Stan, she's just being cautious, because I believe that the biologics > can cause latent TB to come out. I'm sure will correct me if I'm > stating it incorrectly. > > Sue Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2009 Report Share Posted May 19, 2009 Hi Stan - If you tested positive for TB, she should be following that up with a chest x-ray to make sure you don't have an active case. The reason she doesn't want you to take the Enbrel now is because it can cause TB. Isoniazid (INH) monotherapy given for 9 months reduces the risk of your exposure becoming active TB. I went through this with my step-daughter when I was pregnant and found out we both had been exposed to TB by her mother's sister. Thank God my PPD was negative and has remained that way, but my step-daughter was positive and went through the INH therapy. She will forever have a positive PPD, so they skip that part now and go straight for the chest x-ray. I'm sorry this all has thrown a monkey wrench in the works for your RA treatment, but I pray there is something else out there that can help you. Have you tried Sulfasalazine or Plaquenil along with your MTX? Don't give up, Stan - there is a combination for all of us - it is just taking longer to find yours. I'm so sorry.....Doreen I'm actually having some issues with her. She told me she wanted to start Enbrel on the next visit, when the visit came she said I don't need to start it, and if I do, then she needs to treat me for TB because I tested positive (some kind of exposure at some point I can't remember) and that will take nine months. But that's why I cannot take Humaira at all. I wanted to start the Enbrel because many in the Group have had positive results with it. But noooooooooo, I'm staying on MTX for now. I'm just on the edge of feeling better even with the RA (at least as good as I can). So now I am confused and a little annoyed, I am in the process of setting up my medical requirements with the VA so I am going to get a second opinion. I am not sure why she keeps changing her mind, but I don't have access to the big crystal ball. Stan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 2009 Report Share Posted May 20, 2009 Yes, we did follow up with a chest x-ray. But, I think I'm gonna get tested again just to be sure. MTX helps quite a bit and I can deal with the side effects, I'm just hoping for better. Stan Seattle, very Rainy. Hi Stan - If you tested positive for TB, she should be following that up with a chest x-ray to make sure you don't have an active case. The reason she doesn't want you to take the Enbrel now is because it can cause TB. Isoniazid ( INH ) monotherapy given for 9 months reduces the risk of your exposure becoming active TB. I went through this with my step-daughter when I was pregnant and found out we both had been exposed to TB by her mother's sister. Thank God my PPD was negative and has remained that way, but my step-daughter was positive and went through the INH therapy. She will forever have a positive PPD , so they skip that part now and go straight for the chest x-ray. I'm sorry this all has thrown a monkey wrench in the works for your RA treatment, but I pray there is something else out there that can help you. Have you tried Sulfasalazine or Plaquenil along with your MTX ? Don't give up, Stan - there is a combination for all of us - it is just taking longer to find yours. I'm so sorry.....Doreen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 2009 Report Share Posted May 20, 2009 Stan, I hope the doctor can get it all straightened out, and get you on the med that will help you. Take care of yourself, Tawny > > > > Yes, we did follow up with a chest x-ray. But, I think I'm gonna get tested again just to be sure. MTX helps quite a bit and I can deal with the side effects, I'm just hoping for better. > > > > Stan > Quote Link to comment Share on other sites More sharing options...
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