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BlessedForLife

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      • December 1, 2018 at 3:39 pm
      BlessedForLife
      Participant

        Hi Michele,

        I’m sorry for everything you and your husband are dealing with. Some of his symptoms sound like they could be related to steroid withdrawal or low cortisol. Has he had his cortisol and ACTH checked? If he was on steroids for an extended period of time, he could have impacts to his HPA axis (most dedectable in the pituitary and adrenal glands). Yeroy can also cause similar side effects. 

        I have had similar symptoms to your husband’s and they have made me feel worse than anything else I have experienced on this journey, including helpless. So I definitely empathize with you both.

        BFL

         

        • November 25, 2018 at 9:48 pm
        BlessedForLife
        Participant

          Hi Sharon,

          I’m not sure what your son’s status is, but I have been NED since about the 4 month mark, and my doc did stop my immuno at 1 year.

          The research is beginning to show that anything over that may be “over treatment”.  I think treatment duration is still rather clinic specific. I asked the same question on this forum before I stopped. I felt very confident in the responses I received.  I can also tell you that I went 1 treatment over a year and I started to experience some unwanted side effects. So what my doc was concerned about did in fact show up in, thankfully, a fixable, way.

          I wish you and your son the best.

          • September 8, 2018 at 8:41 pm
          BlessedForLife
          Participant

            Hi There,

            i can’t say I have crashed since going to once a month, But I have definitely noticed an increase in fatigue the last few weeks before the next infusion. On the flip side, for the first few days after an infusion I have noticed I have a hard time sleeping. My understanding is that it has to with the proteins in the meds. Your body is use to a smaller every two week cycle and will now need to adapt to every 4.  I’ve only done 2 rounds at once a month but my understanding is that it does get easier. So hang in there!

            BFL

            • July 3, 2018 at 8:37 pm
            BlessedForLife
            Participant

              Becca,

              I just want to thank you for putting your question out here. I too am recently NED and have been going through many of the emotions you describe. In fact. When I red your post, I thought you had red my mine and posted it! 

              I’m having a harder time than I thought I would moving on with my life. The more normal it gets, the more fear, anger sadness arises. But, I believe that it’s all part of the healing process.

              All the best!

              • November 25, 2018 at 6:15 pm
              BlessedForLife
              Participant

                Thank you. I know it sounds crazy to complian about side effects if you are currently NED. And I do know there is some corrrlation between the two.

                I’m sorry to hear about your friend. It’s never easy to lose someone, especially when it hits so close to home.

                Congratulations on your long NED status.

                • November 25, 2018 at 6:09 pm
                BlessedForLife
                Participant

                  Sorry for the delay. I haven’t been on the site. It was methylprednisilone (i don’t think that’s spelt correctly). 4mg starting a 6 pills a day, going down to 1. I finished it last week and went back on the hydrocortisone I take for the Secondary Adrenal Insufficiency side effect I developed about 4 months into treatment. The steroids themselves did a number on me physically and mentally, but so far they have helped the gastro issue.  

                  When I was in treatment and had the same side effect, I was on budesonide. 6mcg a day. It worked really well.

                  • November 18, 2018 at 10:53 pm
                  BlessedForLife
                  Participant

                    Thank you for sharing. That rash is definitely no fun either. Hopefully it goes away and nothing new comes up.

                    • November 18, 2018 at 10:50 pm
                    BlessedForLife
                    Participant

                      Thank you. I it took me a bit to connect the dots. I already have developed hypopituitarism, so thought for a while it was that.

                      I guess we must always be diligent!

                      • September 7, 2018 at 11:41 pm
                      BlessedForLife
                      Participant

                        Thank you everyone for the quick and useful information.

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