Guest guest Posted August 2, 2010 Report Share Posted August 2, 2010 Hi, I have a question about remissions. How does one know if he is in remission if takes meds continuously? Do you have to try and stop taking meds and see if you get aches and pains? I was diagnosed in May was on prednisolone since, although I am on 5mg and 2.5mg doses on alternating days, and also on Sulfasalazine for almost 2 months now. This past week, pain is almost negligible so I wondered (and hoping and praying) that I will go on to a long remission. Thanks very much. Rose (UK) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 2010 Report Share Posted August 2, 2010 Rose, Historically, drug-induced and maintained remission has been the goal of RA treatment, but researchers and rheumatologists are now exploring how to achieve drug-free remission in RA patients. Sometimes, if the disease seems to be under control, the patient and rheumatologist decide to slowly scale the drugs back to see what happens. There is no one standard definition for remission in RA, so you can ask your rheumatologist what he or she considers it to be and what your options are if it should occur. Good luck, Not an MD On Mon, Aug 2, 2010 at 2:21 AM, Rose Marie Fuller <roseescolar@...> wrote: > Hi, > > I have a question about remissions. How does one know if he is in remission if takes meds continuously? Do you have to try and stop taking meds and see if you get aches and pains? > > I was diagnosed in May was on prednisolone since, although I am on 5mg and 2.5mg doses on alternating days, and also on Sulfasalazine for almost 2 months now. This past week, pain is almost negligible so I wondered (and hoping and praying) that I will go on to a long remission. > > Thanks very much. > > Rose (UK) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 2010 Report Share Posted August 2, 2010 I don't think my rheumy believes in remission, for some reason. Maybe he's never seen it happen. He doesn't call it remission if you're still on meds. Sue On Aug 2, 2010, at 7:00 PM, wrote: > There is no one standard definition for remission in RA, so you can > ask your rheumatologist what he or she considers it to be and what > your options are if it should occur. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 3, 2010 Report Share Posted August 3, 2010 > > Hi, > > I have a question about remissions. How does one know if he is in remission if takes meds continuously? Do you have to try and stop taking meds and see if you get aches and pains? I tried this, and it took about 2 months to get back to the state I'd been in before I started taking meds. I asked my rheumatologist if there was any chance that it would go into remission and he said " it is in remission as long as you are taking the drugs - when you stop taking them, you are no longer in remission. " So I'm back on. J. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 3, 2010 Report Share Posted August 3, 2010 That is all very interesting. Isn't it funny how so many doctors can have so many different answers to basically the same question? I'm currently in remission and have been from RA since my last infusion over a year ago. All of my " numbers " that they judge it all by are in the normal range & my doc said that until my numbers return to visible RA status and/or start seeing RA problems returning , I dont have to be on anything for the RA. Maybe it depends in the medication you are on.?.?. in SC Sent from my iPhone On Aug 3, 2010, at 2:23 PM, " oogiejonz " <bajones@...> wrote: > > Hi, > > I have a question about remissions. How does one know if he is in remission if takes meds continuously? Do you have to try and stop taking meds and see if you get aches and pains? I tried this, and it took about 2 months to get back to the state I'd been in before I started taking meds. I asked my rheumatologist if there was any chance that it would go into remission and he said " it is in remission as long as you are taking the drugs - when you stop taking them, you are no longer in remission. " So I'm back on. J. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 3, 2010 Report Share Posted August 3, 2010 , that's wonderful that you're in remission! I hope it continues indefinitely. Sue On Aug 3, 2010, at 5:05 PM, wrote: > That is all very interesting. Isn't it funny how so many doctors can > have so many different answers to basically the same question? I'm > currently in remission and have been from RA since my last infusion > over a year ago. All of my " numbers " that they judge it all by are > in the normal range & my doc said that until my numbers return to > visible RA status and/or start seeing RA problems returning , I dont > have to be on anything for the RA. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 3, 2010 Report Share Posted August 3, 2010 Thank you so much Sue! My hope is that everyone in our group can be as fortunate very, very soon!!!! Sent from my iPhone On Aug 3, 2010, at 7:26 PM, marysue <marysue@...> wrote: , that's wonderful that you're in remission! I hope it continues indefinitely. Sue On Aug 3, 2010, at 5:05 PM, wrote: > That is all very interesting. Isn't it funny how so many doctors can > have so many different answers to basically the same question? I'm > currently in remission and have been from RA since my last infusion > over a year ago. All of my " numbers " that they judge it all by are > in the normal range & my doc said that until my numbers return to > visible RA status and/or start seeing RA problems returning , I dont > have to be on anything for the RA. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 4, 2010 Report Share Posted September 4, 2010 I too am in pain most of the time. However, I cannot take Prednisone. I wish I could, because when I was on it the pain was a lot less. However, even at low doses, it made my bipolar go crazy. I would have incredible manic highs where I would be unable to sleep for three or four nights, and would be constantly running around frantic all the time, and then I would crash into the most horrible depressions I have ever had, where all I could do is lie in bed for days on end and cry unable to even get up. Just the worst sad feeling you can imagine, for no reason. The dr took me off the prednisone and I flushed it all down the toilet. I knew that if the pain got bad I would be tempted to take it again,but I knew how bad it was when I did- I could not function in any way shape or form. It is disheartening to hear so many people talk about how prednisone is the only way they get through when I know it is not an option for me and the pain is so bad. There is just no way I can take it. I'll end up doing something crazy and wind up in a mental hospital for life. Is there anyone out there who does not take the predinsone and still has their pain under control? On Sat, Sep 4, 2010 at 12:47 PM, Barbara Creedon <bcreedon@...> wrote: > > > Hi Betty. > So sorry you are suffering so much with your RA. I have been on Pred. > daily for over 6 1/2 years now. I am on 10 mg now but will go back to my > original 5 mg. daily. My blood work is always good and my Rheumy says I am > fine on it. I would have no life without it, and my RA " cocktail " . I feel > good and have been in a medicine induced remission for almost 2 years now. > If your Rheumy says you are fine on the Pred. then continue taking it. > Sometimes uping the dose to 10 mg or 20 mgs. a day will help the swelling go > down and the pain go away. You should talk all this over with your Rheumy > and do what she says you need to do to get feeling better and have a life. > I wish you many pain free days ahead. > > Hugs, > > Barbara > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 4, 2010 Report Share Posted September 4, 2010 , My pain is under control without prednisone. I am on Enbrel and acetominaphin. A few years ago, I took a low dose of prednisone for a few months while waiting for methotrexate to take effect. I weaned myself off of it after I found out about all of the bad side effects. What DMARD are you on? Sue On Sep 4, 2010, at 1:21 PM, Terzo wrote: > > Is there anyone out there who does not take the predinsone and still > has > their pain under control? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 4, 2010 Report Share Posted September 4, 2010 Hi Betty, I'm sure it seems like I have that " woe is me " attitude lol. I can see where it seems like it. But I see that a lot of us are experiencing the same problems. Well I certainly hope it's safe to take prednisone every day. I've been taking it everyday for the past four months. Sent from my HTC on the Now Network from Sprint! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 4, 2010 Report Share Posted September 4, 2010 Thank you for your kind response. I take methotrexate only, 15mg once a week. I have only been on the medication for 3 months as I was diagnosed this past February.  You have given me hope for remission.  Thank you,  Janine Raab Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2010 Report Share Posted September 5, 2010 Janine, In addition to the nurse, did you talk to your rheumatologist? If that's his or her philosophy, too - " that you need to learn to live with the discomfort " - it's time for a second opinion. There are numerous options for you. The methotrexate dosage can be increased or you can switch to the injectable form. And there are many effective treatments that can be used in addition to or instead of the methotrexate, the sooner the better. Not an MD On Fri, Sep 3, 2010 at 9:37 PM, Janine <Raabster@...> wrote: > I was curious how others experience remission. I was hopeful I would return to normal most of the time. This past month I have felt pain 90% of the time. I called my rheumy Dr. today and the the nurse told me I need to learn to live with the discomfort. I have been on methotrexate for 3 months now and have more joint pain then ever before. > > Thank you for your thoughts, I have learned so much here. > > Janine Raab Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2010 Report Share Posted September 5, 2010 OK, I am going to jump in here from a professional viewpoint. Calling your doctor and having the " nurse " or medical assistant or whomever spoke to you on the phone tell you " Live with it. " was significantly inappropriate for her role in the physician's office. I speak from being a nurse manager, (granted in a hospital). I would report that in writing to your physician of how you know that is an inappropriate answer to a very real symptom you were having. You were calling seeking help for a physical symptom and who was she to " diagnose " your issue over the telephone? I would ask if she is directed to screen all calls this way (puts ownership of what the office help is doing on the physician). That office needs some patient advocacy education. THAT person needs a new job. Dale Ellen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2010 Report Share Posted September 5, 2010 Hi Janine, No one should tell you to live with it. There is no living with this pain. I too am on Methotrexate and my pain has increased. I don't know why it does that but It does. I want to get off the Methotrexate because the nausea and vomiting is awful. I take it on Friday's and I am down Friday and Saturday every week because it makes me so sick. This person is obviously ignorant and insensitive - living with the pain is not the answer she should give anyone... Hugs - Vivian Quote Link to comment Share on other sites More sharing options...
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