Wow I need advice

Discussion in 'Fibromyalgia Main Forum' started by lin-z, Feb 23, 2006.

  1. lin-z

    lin-z New Member

    or at least opinions. i went to a new rheumy (well second time..but first saw his pa)yesterday. He had gotten back some new blood results that seemed to indicate to him that there is a good chance i have RA.

    at this point he wants me to wean off all other treatments (which are doing squat anyway)and put me on a trial basis of prednisone to start . there is a def indication of inflammation in my blood normal ra factor buthe said 20% have it and dont show it and vice versa.

    The pain and immobility over the past month has been so debilitating that i am willing to try anythng. We were supposed to go visit my dtr in Miami on 3/18 and i cant see it possible at all in my present state.

    He seemed knowledgable ,i am just so confused...any thoughts or experiences? thanks all Lindsey
  2. Cromwell

    Cromwell New Member

    Is that rheumys nowadays treat agggressively for RA right off usually with Methotrexate.

    Having just gotten this scare re the heart and waiting to see rheumy re possible RA and realising it can involve the heart, I would just make sure you have copies of blood work and maybe get 2nd opinion. I saw a rheumy last year who told me my dx of LUpus was wrong and just said, go home and forget about it. Now I am kicking myself for trusting in him as he seemed only interested in geting money up front(had to self bill insurance) and getting me in and out.

    What do others think?

    Love Anne C
  3. lin-z

    lin-z New Member

    I do have all the copies of blood work since this adventure began(only 1 year seems like 10)He wants me to start on 5mg daily prednisone just to see if it helps at all and then we will go from there...he is my 2nd rheumy so i dont really know where to go from here.

    what did you say about the heart??? that ra messes it up or the treatment? thanks Lindsey
  4. kirschbaum26

    kirschbaum26 New Member

    Dear Lin-z:

    Just wanted to tell you of my Prednisone woes. I was dx with RA about 10 years ago. My rheumy (old school) started me on Prednisone (original 5mg a day, then upped to 2 x 5mg per day and finally 10mg 2x per day). I did the prednisone treatment for about 5 years. It was great. Inflammation was gone, and I did not have any pain in joints...also had no asthma symptoms either!

    Since then, I have found out that prednisone really messes up your hips...and can do all sorts of bad things to your body. I am most likely suffering from some kind of adrenal problem due to the steady dose that my prednisone gave me all those years. It is really serious and can really mess you up for many years in many ways that the rheumy did not warn me about.

    My current Rheumy said that prednisone is NOT the best treatment for RA these days. Methotrexate is good. I cannot take the methotrexate as my liver function is not good enough. I started ENBREL at the beginning of December, and have been able to reduce my daily dose of advil from 20 (200 mgs) to just 10 (200 mgs). I have much less pain, stiffness and have been able to exercise (moderately) for about 30-60 minutes every day for the first time in years. I am feeling better and finally not planning my life around what I think I might be up to doing.

    Also, prednisone does not do anything to PREVENT damage to your joints...only keeps the swelling down. Methotrexate and Enbrel actually alter how your body responds to the disease.

    Good luck to you.

  5. rockgor

    rockgor Well-Known Member

    BUT my mother did and greatly regretted it. She developed a symptom I've never heard of before or since. Little pieces of bone would break off in her feet and work their way to the surface. She used to wrap her feet in Saran Wrap.

    This weird condition lasted for a couple years after she got off the stuff.

    A friend told me her dr. was putting her on prednisone, but he told her it was only for short-term use.
  6. lin-z

    lin-z New Member

    I ,too , have heard of the horrors of prednisone. My dad has suffered with emphysema for 20 years now and that is the only thing that gives him any relief however his quality of life is maybe a neg. 4 due to what the years of prednisone did to him(no choice for emphysema..smokers please stop ...i know easy for me to say , forgive me)

    I had this conversation with the rheumy before I agreed to take it and he said it is STRICTLY to see if i react positively to it and then we will "know" the possibility of ra is pretty high.

    He said then (3 weeks) i will not be on it anymore as there are many more current treatments...does this make sense? Basically he wants to see if i react positively to a strong anti inflammatory and then proceed from there?

    i have seen ads for metho..whatever that is and enbrel in his lobby so i assume he would administer that. thanks again just hope something works..sick of doing NOTHING but hurting. :/

  7. kirschbaum26

    kirschbaum26 New Member

    Some info on Methotrexate.

    Methotrexate is a medicine that makes your immune system less active. Methotrexate is used to treat rheumatoid arthritis, psoriasis and other diseases that are associated with an immune system that is too active. Methotrexate can help people who have these problems. But because it can cause some serious side effects, it must be used carefully

    Some basic data on ENBREL and how it works. I give myself an injection once a week.

    What important information do I need to know about taking ENBREL?

    ENBREL is a type of protein called a tumor necrosis factor (TNF) blocker that blocks the action of a substance your body's immune system makes called TNF. People with an immune disease, such as rheumatoid arthritis, ankylosing spondylitis, psoriatic arthritis, and psoriasis, have too much TNF in their bodies. ENBREL can reduce the amount of TNF in the body to normal levels, helping to treat your disease. But, in doing so, ENBREL can also lower the ability of your immune system to fight infections.

    All medicines have side effects, including ENBREL. Possible side effects of ENBREL include:

    Serious infections
    Many occurred in people prone to infection, such as those with advanced or poorly controlled diabetes
    Some serious infections have been fatal
    Rare cases of tuberculosis have occurred
    What not to do
    Do not start ENBREL if you have an infection, such as an open sore or the flu, or are allergic to ENBREL or its components
    What to do
    Tell your doctor if you are prone to infection
    Stop ENBREL if a serious infection occurs
    Contact your doctor if you have questions about ENBREL or develop an infection
    Tell your doctor if you have ever been treated for heart failure
    Serious nervous system disorders, such as multiple sclerosis, seizures, or inflammation of the nerves of the eyes
    Tell your doctor if you have ever had any of these disorders or if you develop them after starting ENBREL
    Rare reports of serious blood disorders (some fatal)
    Contact your doctor immediately if you develop symptoms, such as persistent fever, bruising, bleeding, or paleness
    In medical studies of all TNF blockers, including ENBREL, a higher rate of lymphoma (a type of cancer) was seen compared to the general population. The risk of lymphoma may be up to several-fold higher in rheumatoid arthritis and psoriasis patients
    The role of TNF blockers, including ENBREL, in the development of lymphoma is unknown
    ENBREL can cause injection site reactions

    Hope that helps a little bit.

    Prednisone did wonders for me...within 24 hours of taking even a small dose, my pain and stiffness was dramatically reduced. Have not heard of it being used to help with diagnosing RA, but hey, whatever it takes. My new Rheumy asked me to NOT take any advil the morning before an appointment and I could barely walk into the office. Swelling in places that I did not know were being affected by RA was a big surprise. Both hips, both ankles, both knees, and my knuckles all looked and felt ghastly. He was kind enough to give me a shot of prednisone, and I actually took the advil while still in his office...but still had trouble getting out the door and on my way to work.

    Good luck.

    Sorry that your dad has emphysema, and sorry that he has to take prednisone for it.


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