Guest guest Posted July 22, 2008 Report Share Posted July 22, 2008 Dear Group, With regard to Enbrel and Humira. I believe they are wonderful, but powerful drugs in the arsenal against RA. I never felt so good as to when I was taking the Enbrel, even more than Humira. These two drugs are a miracle for a lot of people who are suffering with this tragic disease. That said, I've done a lot of soul searching when I was first told that Enbrel " may have/probably " contributed to my high ANA titer and diagnosis of Lupus. Since May I have been very angry that I was one of the 1 in 10,000 that could develop lupus and both Enbrel and Humira have updated their websites to include lupus as a side effect, along with tuberculosis and lymphoma. I blamed myself for not researching this drug enough. I blamed the doctors for misdiagnosing me. I blamed the FDA. I was just plain angry - this is my immune system " they " are playing with. Now that I've done more research and had time to reflect, patient's need to make their own informed decisions on the risks and benefits. We are our only advocate for what is going on with " us " . We need to be informed and know all the risks so that we can watch out for symptoms. I was watching for TB and lymphoma. Now I realize I should have been watching for a whole host of other things too. Enbrel wasn't good for me, but it is good for 10,000 other people. We need researchers to advance these drugs. We need pharmaceutical companies to make these drugs. I believe we have made so many advances in so many diseases that it is just the way it has to be. Each patient individually needs to weigh the risk with benefit - but we need all the facts to do so. So now I play the waiting game to watch the ANA titers. (I have another wisdom about labs too, but that is another story for another day). Honestly, if I had the choice of drug for my RA I would be back on Enbrel in a heartbeat. I have found the only solace to take control of my RA/Lupus?/Fibro? with all the various drugs they have prescribed to me is to chart my type and level of pain each day (morning, afternoon, night) and a list of the numerous drugs I take everyday, with a list of activities. This way I can show any doctor the same information. It sounds like a lot of work but I feel I'm doing something positive for myself when I try to explain the perplexing issue " pain " versus " symptoms " to doctors. This way if/when they give me a new drug I can show them it has either helped, or made it worse and in which way. My two cents.... Cheryl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 2008 Report Share Posted July 22, 2008 Cheryl, Usually, if a TNF blocker induces lupus, the symptoms will recede after the agent is withdrawn. This is also usually true for MS-like symptoms that may arise. In the case of tuberculosis, the biggest worry is for those people who have already been infected with it in the past but in whom the disease is latent. Using an anti-TNF biologic in that situation can reactivate the tuberculosis. RA patients are at a higher risk for lymphoma than the general population independent of which treatments are used. Not an MD On Tue, Jul 22, 2008 at 11:13 AM, Cheryl Wegmann <cheryl_wegmann@...> wrote: > Dear Group, > > With regard to Enbrel and Humira. I believe they are wonderful, but > powerful drugs in the arsenal against RA. I never felt so good as to > when I was taking the Enbrel, even more than Humira. These two drugs > are a miracle for a lot of people who are suffering with this tragic > disease. That said, I've done a lot of soul searching when I was > first > told that Enbrel " may have/probably " contributed to my high ANA titer > and diagnosis of Lupus. Since May I have been very angry that I was > one of the 1 in 10,000 that could develop lupus and both Enbrel and > Humira have updated their websites to include lupus as a side effect, > along with tuberculosis and lymphoma. I blamed myself for not > researching this drug enough. I blamed the doctors for misdiagnosing > me. I blamed the FDA. I was just plain angry - this is my immune > system " they " are playing with. Now that I've done more research and > had time to reflect, patient's need to make their own informed > decisions on the risks and benefits. We are our only advocate for > what is going on with " us " . We need to be informed and know all the > risks so that we can watch out for symptoms. I was watching for TB > and > lymphoma. Now I realize I should have been watching for a whole host > of > other things too. > > Enbrel wasn't good for me, but it is good for 10,000 other people. > We > need researchers to advance these drugs. We need pharmaceutical > companies to make these drugs. I believe we have made so many > advances > in so many diseases that it is just the way it has to be. Each > patient > individually needs to weigh the risk with benefit - but we need all > the > facts to do so. > > So now I play the waiting game to watch the ANA titers. (I have > another wisdom about labs too, but that is another story for another > day). Honestly, if I had the choice of drug for my RA I would be > back > on Enbrel in a heartbeat. I have found the only solace to take > control > of my RA/Lupus?/Fibro? with all the various drugs they have > prescribed > to me is to chart my type and level of pain each day (morning, > afternoon, night) and a list of the numerous drugs I take everyday, > with a list of activities. This way I can show any doctor the same > information. It sounds like a lot of work but I feel I'm doing > something positive for myself when I try to explain the perplexing > issue " pain " versus " symptoms " to doctors. This way if/when they > give > me a new drug I can show them it has either helped, or made it worse > and in which way. > > My two cents.... > Cheryl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 2008 Report Share Posted July 22, 2008 , you are precisely right! My symptoms should have subsided but they haven't. I'm in much more pain and more symptomatic now than I was when I was on Enbrel. So, because the TNF blockers have a history of drug induced lupus they need to rule out that it wasn't the Enbrel that has caused my ANA's to go up. I'm in a waiting game to see if it is an overlap of both diseases. Until then both the RA and possible lupus are going untreated and I'm living on pain pills and Prednisone. No Orencia, Methotrexate, Plaquenil... nothing additional until they figure it out. PLUS! I have three separate laboratories reporting three distinctly separate results on my ANA's, RF's and the whole battery of inflammation tests. I have two Chicago University Rheumatologists scratching their heads as well as my long standing Rheumatologist - two are in agreement one is not. My only concern in the very short time I've been a member is when I read other members and their symptoms worsening that only you/me (i.e., the patient) has to be their own advocate and tell the doctor when something isn't right or its worse - get second and third opinions especially when the immune and neurological systems are at risk. Keep a diary when new drugs are prescribed to you. These are heavy duty drugs that in the grand scheme of things are fairly new and they are only now realizing what long term effects they have on humans. Sorry I'm so wordy... Cheryl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2008 Report Share Posted July 23, 2008 Cheryl, I hope they figure it out soon. You're right. We have to look out for ourselves and clearly communicate our concerns to our physicians. Not an MD On Tue, Jul 22, 2008 at 4:44 PM, Cheryl Wegmann <cheryl_wegmann@...> wrote: > , you are precisely right! My symptoms should have subsided but > they haven't. I'm in much more pain and more symptomatic now than I > was when I was on Enbrel. So, because the TNF blockers have a > history of drug induced lupus they need to rule out that it wasn't > the Enbrel that has caused my ANA's to go up. I'm in a waiting game > to see if it is an overlap of both diseases. Until then both the RA > and possible lupus are going untreated and I'm living on pain pills > and Prednisone. No Orencia, Methotrexate, Plaquenil... nothing > additional until they figure it out. PLUS! I have three separate > laboratories reporting three distinctly separate results on my ANA's, > RF's and the whole battery of inflammation tests. I have two Chicago > University Rheumatologists scratching their heads as well as my long > standing Rheumatologist - two are in agreement one is not. > > My only concern in the very short time I've been a member is when I > read other members and their symptoms worsening that only you/me > (i.e., the patient) has to be their own advocate and tell the doctor > when something isn't right or its worse - get second and third > opinions especially when the immune and neurological systems are at > risk. Keep a diary when new drugs are prescribed to you. These are > heavy duty drugs that in the grand scheme of things are fairly new > and they are only now realizing what long term effects they have on > humans. > > Sorry I'm so wordy... > Cheryl Quote Link to comment Share on other sites More sharing options...
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