Announcement

Collapse
No announcement yet.

Steriods... Some advice please!

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • #16
    I'm scheduled to have my transplant next month, and the side effects of the meds really concern me. I don't want to be vain, but are the moon face and the hair growth really terribly noticeable? Will I be embarrassed to be seen in public? I hate harping on this subject because I'm grateful to be getting a new kidney, but should I have to warn people that I will not look like myself after the surgery?

    Comment


    • #17
      moon face

      Well depends on what dose of steriods you will be on. I only had a moon face while I was on 30mg per day. Thats' when I had a moon face. Once the dose was gradually reduced over a period of timemy face went back to normal. I am now on 10mg on alternate days. Have been on steroids for a good few years. Facial hair well as I was a blonde (now grey) and any facial hair I had was very fair it was not noticeable. One thing people say if you shave it off it grows more & more. I think it's best to leave it alone.

      Feel free to send me a private message anytime.
      Audrey
      Kidney problems starrted 1980's when I had Saracoidosis
      Recenty started HD at my local renal u Init in Telford.Still having a few problems with my 2nd line.

      Comment


      • #18
        Thanks missedtheboat. I ask bc I've already gained 25 lbs just from dialysis (PD), so when/if I get a transplant, I don't want to gain more weight, but I don't want to end up in a coma either. lol. I guess it will be ok...as long as I have self control.
        Shannon
        KidneyFun // Kidney Korner // Organ donation awareness products!
        If the world didn't suck...........We'd all fall off!

        Comment


        • #19
          Yup, forewarned is forearmed I was never warned of any of the side effects of predinisone when I took it years ago. Should I ever have to go on it again (God forbid!) hopefully, I will know better and watch what I eat. Long term high doses have lots of unpleasant side effects. I currently have osteoporosis and cataracts from the prednisone, but that was because of higher doses for a longer period of time than what they use for transplants. I was on 30-60 mgs. a day for 5 years. I hope to never see the stuff again!
          It's not about waiting for the storm to pass, but learning to dance in the rain.

          Comment


          • #20
            Hey all!

            Never had a bit of swelling from the prednisone. I must admit the moon face kinda put me off too but never experienced it. Possibly extremely lucky. I actually lost 25 pounds before I left the hospital and while I am sure some was fluid, not all of it.
            "Within every adversity lies a slumbering possibility"
            Linda
            Tx: 7/28/2005
            St. Louis University Hospital

            Comment


            • #21
              I would hope you didn't lose 25 lbs of fluid! lol. That's a lot!!
              Shannon
              KidneyFun // Kidney Korner // Organ donation awareness products!
              If the world didn't suck...........We'd all fall off!

              Comment


              • #22
                Re: Steriods... Some advice please!

                I have had my transplant for over three years and I am still on 7.5 mg of Prednisone and that was after asking my nephrologist to lower the dose because I had gained 70 lbs. since my transplant. Ultimately the lower dosage did not do much for the weight loss and I know that most of it came from eating all the goodies that I couldn't when on dialysis. I also lost all taste for meat while on dialysis and after getting my new kidney I couldn't get enough! After battling with my weight and trying just about everything I could I opted for a lap-band. IN NO WAY AM I SAYING THAT ANYONE SHOULD GET THIS FOR POST TRANSPLANT WEIGHT LOSS!!! I have battled my weight before and after dialysis for years and I was at a weight I was comfortable with for the first time ever just before I was transplanted. As I said....my doctors and I tried everything and this was the only thing that worked. I question now if the Prednisone really made me feel hungry like they said because I am hardly ever hungry now and I have to remind myself to eat. I am still taking the same amount of Prednisone I was before the lap-band and although the weight came off slower than some others it came off nonetheless. Strangely enough also when I first started dialysis I was on Prednisone and had the "moon face" I also broke out really bad on my face and scalp, so bad that it literally hurt to touch my skin. All of that went away within a few months of weaning me off but I was concerned the same thing would happen this time and it didn't. IDK I just found that strange that I didn't have the same reaction to the medicine twice.
                "Celebrate we will, because life is short but sweet for certain"

                Comment


                • #23
                  Re: Steriods... Some advice please!

                  Originally posted by LindaE View Post
                  Hey all!

                  Never had a bit of swelling from the prednisone. I must admit the moon face kinda put me off too but never experienced it. Possibly extremely lucky. I actually lost 25 pounds before I left the hospital and while I am sure some was fluid, not all of it.
                  I too lost over 20lbs within days of my transplant. The transplant center I went to took me off prednisone completely within weeks of my transplant. They stated that since it was my first transplant, that I was caucasian (dont know why that matters) and that I did not have any antibodies to the new kidney....that is the protocol. I guess it varies fron center to center and case by case...

                  Comment


                  • #24
                    Re: Steriods... Some advice please!

                    My transplant center, UPMC Pittsburgh, has a steroid free protocol. This is important to me because I have osteoporosis pretty badly and taking steroids would have made me ineligible to get a transplant.
                    To the stars through difficulty!

                    Comment


                    • #25
                      Re: Steriods... Some advice please!

                      I can never go off Prednisone (even when on dialysis) because I don't have adrenal glands (I don't know why they won't give me something else as my Calcium is always an issue since I have no Parathyroids and am worried about my bones) but I hated all the weight I had gained with my first transplant. I was 97 or 98 lbs and in only 28 days I gained 32 lbs! It was insane! I was 16.

                      This time around it wasn't so bad but I can only assume because my body is now used to it? I don't know. I was on 5mg every other day for years but for some reason they will not lower be below 7.5mg every day (even though just last year I was at 7.5mg every other day).

                      But as far as weight gain .. the puffy cheeks will go down but the diet needs to be focused and need to keep active with your new energy. It took me a few years to lose the moon face myself but now with this 2nd transplant I got it back .. luckily not as bad but maybe that is just because I don't have as small of a face as I did as a teen and already have a slightly puffy face lol.

                      I found it very hard to not eat everything at first as well. The Prednisone made me have hunger pains if I didn't eat something .. so I would snack on healthy things like fruits and veggies.
                      Angie
                      Kidney KornerDialysis Ethics Forum Kidney PixAwareness Shirts KidneySpace Donor Search
                      I will be walking a Kidney Walk in Ontario Canada Sept 18th 2011
                      • Peritoneal Dialysis = 4 yrs
                      • Hemo Dialysis (in center) = 2 yrs
                      • 2 kidney transplants = 1990 - 2001 & 2007 to present

                      Comment


                      • #26
                        Re: Steriods... Some advice please!

                        Originally posted by chefnancy View Post
                        My transplant center, UPMC Pittsburgh, has a steroid free protocol. This is important to me because I have osteoporosis pretty badly and taking steroids would have made me ineligible to get a transplant.
                        I am really interested in the research invovled with this protocol which you mentioned before on another thread a while ago. I am a year post in June and am on 5 mg every day and although have had little weight gain, am very worried about the affects on muscle and bone tissue. When I tried to bring this up with my neph (who I like and trust), he basically said if I cut down in steroids then have to increase prograf ( down to 3mg a day and hopefully off by fall) and he feels that is worse for my kidney. I realize each case is unique, but would like to get some info myself as I see so many different doses on this thread.

                        Comment


                        • #27
                          Re: Steriods... Some advice please!

                          Originally posted by Marilyn1947 View Post
                          I am really interested in the research invovled with this protocol which you mentioned before on another thread a while ago. I am a year post in June and am on 5 mg every day and although have had little weight gain, am very worried about the affects on muscle and bone tissue. When I tried to bring this up with my neph (who I like and trust), he basically said if I cut down in steroids then have to increase prograf ( down to 3mg a day and hopefully off by fall) and he feels that is worse for my kidney. I realize each case is unique, but would like to get some info myself as I see so many different doses on this thread.
                          I know different hospitals have different protocols and different dosages and meds work best for different people. Really it comes down to weighing the pros and cons. Some like to just stick to what is currently working for you but you could always ask about trial basis changes .. of course coming off Prednisone has to be done slowly as it is one of those meds that need weening off of.

                          **Never make changes without discussing and working with your medical team**

                          I know Shay (#18 post in this thread) is on the Steroid free protocol at her hospital. Infact I believe Shay and Chefnancy talked about this topic in more detail at her site (her site is in her signature).
                          Angie
                          Kidney KornerDialysis Ethics Forum Kidney PixAwareness Shirts KidneySpace Donor Search
                          I will be walking a Kidney Walk in Ontario Canada Sept 18th 2011
                          • Peritoneal Dialysis = 4 yrs
                          • Hemo Dialysis (in center) = 2 yrs
                          • 2 kidney transplants = 1990 - 2001 & 2007 to present

                          Comment


                          • #28
                            Re: Steriods... Some advice please!

                            Interesting comments on the use of prednisone. I was on it for a bad skin itch but my Neph wanted me off of it. but I protested. I cut back to just a pill when the itching got too bad and then stopped but after reading all of the side effects. Just cut them out totally and try really hard to stay away from the foods that are high in phosphorus.

                            Comment


                            • #29
                              Re: Steriods... Some advice please!

                              On my first transplant back in 1979-1982 the Prednisone did extensive damage to some soft body tissues, hip joint damage, eye cataracts, hair loss, skin scarring, and hearing loss. You ask the question, "Is a transplant better than doing Frequent Dialysis?" I can say in some cases a transplant can save your life, but you'd have to deal with the consequences of the toxic anti-rejections meds.....
                              My Blog Site
                              Http://www.dailyhemo.org
                              sigpic

                              Comment


                              • #30
                                Re: Steriods... Some advice please!

                                Each TX center has it's own protocol as to which anti-rejection drugs they use.

                                When I went for my Eval, my first question was 'is this a steroid free facilitly/"
                                Their response was that most patients are taken off prednisone before they go home, unfortunately since I'm going for a SPK ( simultaneous pancreas and kidney TX) I wil be on prednisone for the life of my TX.
                                I received the GIFT OF LIFE on Nov 9, 2010 thanks to my wonderful donor Laura and her family!

                                Comment

                                Working...
                                X