Page 1 of 3 123 LastLast
Results 1 to 10 of 28

Thread: GP says I may need to add something to my medications...

  1. #1
    Join Date
    Apr 2010
    Location
    Mackay, Australia
    Posts
    272
    Thanks
    84
    Thanked 108 Times in 68 Posts

    Default GP says I may need to add something to my medications...

    My GP says that with everything going on, my lupus may just be more active than we thought. I fool people easily with the way I look healthy and alive... the only thing that would or could ever stop me would be death... otherwise I will just keep going and going and going almost blissfully unaware.

    Anyway, because of that I tend to agree that it may be easy to overlook my active lupus because I am so seemingly unhindered by it. BUT it was still a shock to me, to hear her say 'we might just need to add another medication to your treatment.'

    She said it very softly and carefully while watching me and giving me that "Im sorry" look that she does... knowing how against meds I am.

    SO... my questions is... what are my options?? Lets say my lupus is just a touch too active and I need the plaquenil and something else... what could the something else be? I do not like the idea of steroids and I would love to have some suggestions to go to my 'health team' with.
    Otherwise... I think I will decline the steroids no matter what.

  2. #2
    Join Date
    Mar 2011
    Location
    pinjarra, western australia
    Posts
    2,917
    Blog Entries
    1
    Thanks
    1,394
    Thanked 1,617 Times in 1,107 Posts

    Default

    i have found in australia, the other is usually methotrexate, or methoblastin.

  3. #3
    tgal's Avatar
    tgal is offline Super Moderator Super ModeratorEmperor of the Solar System
    Join Date
    Jan 2010
    Location
    Houston, Texas
    Posts
    4,521
    Thanks
    1,547
    Thanked 1,741 Times in 1,211 Posts

    Default

    steroids are really the next step in the US. MTX usually isn't given unless 1) Steroids are not working except on high doses or 2) Steroids are not being tolerated by the patient. Low dose steroids are not bad it is when you have to get on higher doses that you have trouble. They actually say if you do them every other day instead of daily it makes a really big difference as well. I have never been in a place when I could skip them, even with the MTX but those are most likely the next options
    Mari

    Success is not final, failure is not fatal: it is the courage to continue that counts.

    ~Winston Churchill~







  4. #4
    Join Date
    May 2011
    Location
    Pennsylvania, USA
    Posts
    879
    Thanks
    409
    Thanked 270 Times in 194 Posts

    Default

    Steroids truly did help and fortunately still do. I am always on 5 mg. I tried to go off and always a major organ gets hit. My rheumy wants me to stay on. When things get crazy she bumps it up and I slowly back off.

    There is fallout I must say, but what is my alternative? Metheltrexate(spelling?) Is on the table presently.

    I hope you can figure out the best choice for you dear. Good luck. Tammy

  5. #5
    Join Date
    Dec 2010
    Location
    Perth, Western Australia
    Posts
    92
    Blog Entries
    2
    Thanks
    3
    Thanked 34 Times in 21 Posts

    Default

    Hi giggle
    When I was first diagnosed I was started on the plaquenil. Methotrexate isn't usually given unless they find out that the steroids aren't doing as well as they are meant to. I was on 50mg of pred when i had my first flare, that did nothing so they put me on methotrexate too. I was in the same mind about steroids, definitely not wanting to be on them because of the side effects and I cut mine down too quickly and ended up back in hospital with another serious flare. At that time my disease activity was through the roof. My rheumy started me back on pred and im currently in the process (since March) of cutting down but every time i get to 10mg i get quite sore again. The positive side of the steroids though is that now my disease activity is lower than its ever been. As much as you might not want to go on the steroids, sometimes its the only thing that can work, and to be honest with you, i'd rather be on pred than methotrexate!
    anyway all the best with whatever new one they start you on!
    Diagnosed with SLE and Antiphospholipid Syndrom - June 2010

  6. The Following 2 Users Say Thank You to Nat For This Useful Post:

    lovedbyHim (06-28-2011), tgal (06-28-2011)

  7. #6
    Join Date
    Apr 2010
    Location
    Mackay, Australia
    Posts
    272
    Thanks
    84
    Thanked 108 Times in 68 Posts

    Default

    thank you guys : ) it really hadnt occurred to me that I would be on a fairly insignificant dose : ) thats why you are here, to remind me Im a doofus : D

    Love yas!

  8. #7
    Join Date
    May 2011
    Location
    Colorado
    Posts
    645
    Thanks
    456
    Thanked 353 Times in 232 Posts

    Default

    My standard dose is 5mg also, and the only "side effect" I notice with that is increased energy and decreased pain. Those are side effects I can live with LOL. I don't even gain weight at that dose, because I am more active.

    If you do go on an immunossuppressant, like methotrexate or Imuran, you also may not have any side effects - especially since you seem to have a very high tolerance for discomfort. My daughter gives herself methotrexate injections and has no ill effects what-so-ever. I've had the same experience with Imuran. Neither of us can imagine having to go off of them now.

  9. #8
    Join Date
    Jun 2011
    Posts
    46
    Thanks
    19
    Thanked 7 Times in 5 Posts

    Default

    I'm on 35mg of pred and 100mg of plaquenil and 1000mg of cellcept. =/ My SLE is under control but I've weight gain and my joints keep cracking (due to the pred I think).

    Mark 10:27-
    But Jesus looked at them and said, “With men it is impossible, but not with God; for with God all things are possible.

  10. #9
    rob is offline Super Moderator Super ModeratorEmperor of the World
    Join Date
    Feb 2008
    Posts
    3,681
    Thanks
    426
    Thanked 1,105 Times in 628 Posts

    Default

    I've been on 400mg of Plaquenil for many years now, and I have no negative side effects from it at all. I take 200mg in the morning, and 200 at night. It really keeps my Lupus flares from becoming unbearably bad. Just to be safe, I still see an opthamologist every few months to check for retina damage, but there has never been any. For most people, plaq is the easiest to tolerate. It takes time to work though. You have to start it and stay on it.

    I've also found the short term steroid taper packs to be very effective in the short term without the bad side effects of long term steroid use. It's just my opinion, but I think too many people make too big of a deal over some of the meds we have available to us. Yes, some of our meds do have serious side effects, but not all of them. The two I mentioned are really pretty tame, and they do indeed work well for most people.

    Rob

  11. The Following 3 Users Say Thank You to rob For This Useful Post:

    Gizmo (06-28-2011), steve.b (06-28-2011), tgal (06-28-2011)

  12. #10
    Join Date
    Feb 2011
    Posts
    2,036
    Thanks
    345
    Thanked 365 Times in 315 Posts

    Default

    Giggle,

    I hope you decide what's best for you but i'm sticking with the plaquenil if it carries on ok as it is so far just by changing the time of taking it but otherwise concerning steriods for Lupus i've heard they do help alot a great deal and like other member's have said it's the amount of dosage you'll be taking but myself in general i won't go on them i've refused through having steriods years ago.

    Terry xxx

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •