Pembro side effects update

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  • Post
    • October 31, 2015 at 10:23 pm
    Jubes
    Participant

      Hi all

      Just a quick update on my poly myalgia type side effects that caused me to stop Pembro in August. The rheumatologist and oncologist have decided to treat the symptoms as much as possible before giving me the big guns ( infliximab which reverses the effects of Pembro, though so far from a small sample of ppl treated with that for life threatening colitis it has not affected the benefits of the checkpoint inhibitors) 

      So i am continuing on 25 mg prednisone every  day and have been taking 200 mg slow release ketoprofen every day along with regular Panadol  osteo. I am still very stiff and sore but the pain had gone from a 10, where I was virtually paralysed in the mornings for up to three hours, to about a 6-7, where I can get up and enjoy my life but a long way from working, yoga or playing golf!

      the next step will be this week now they have checked my eyes and other bloods, they will put me on plaquenil and try to gradually wean me off the steroids that I have been on since May. 

      My next pet is in December so I think they want to try all those things and make sure disease has not progressed before they risk infliximab as it was still 3 cm in my lungs stable in August from January 

      hope this helps if anyone has similar problems

      anne-Louise 

    Viewing 5 reply threads
    • Replies
        • November 1, 2015 at 3:20 am
        Bubbles
        Participant

          So glad to hear that you are having at least some improvements in you side effects!!  Hope so much that it continues to improve!  Hang in there.  Celeste

            • November 1, 2015 at 8:08 pm
            Jubes
            Participant

              Thanks celeste ! Hope my experience helps someone down the track. 

              • November 1, 2015 at 8:08 pm
              Jubes
              Participant

                Thanks celeste ! Hope my experience helps someone down the track. 

                • November 1, 2015 at 8:08 pm
                Jubes
                Participant

                  Thanks celeste ! Hope my experience helps someone down the track. 

                  • November 1, 2015 at 8:08 pm
                  Jubes
                  Participant

                    Thanks celeste ! Hope my experience helps someone down the track. 

                    • November 1, 2015 at 8:08 pm
                    Jubes
                    Participant

                      Thanks celeste ! Hope my experience helps someone down the track. 

                      • November 1, 2015 at 8:08 pm
                      Jubes
                      Participant

                        Thanks celeste ! Hope my experience helps someone down the track. 

                      • November 1, 2015 at 3:20 am
                      Bubbles
                      Participant

                        So glad to hear that you are having at least some improvements in you side effects!!  Hope so much that it continues to improve!  Hang in there.  Celeste

                        • November 1, 2015 at 3:20 am
                        Bubbles
                        Participant

                          So glad to hear that you are having at least some improvements in you side effects!!  Hope so much that it continues to improve!  Hang in there.  Celeste

                          • November 1, 2015 at 1:40 pm
                          Gene_S
                          Participant

                            Have you tried curcurmin (tumeric) for pain.  It might work and is not a drug as tumeric is a spice.

                              • November 1, 2015 at 8:07 pm
                              Jubes
                              Participant

                                Thank you for the suggestion. I am taking the good allepey turmeric. 3 teaspoons a day, plus bee pollen under my tongue and also raw Manuka honey. A teaspoon a day. However when I mentioned this to my rheumatologist he said I was WAY past homeopathic/natural therapy. I don't mind I will try anything if it doesn't counteract what the doctors are doing. I also have seen a psychic/healer, rekki and Skyped a Native American healer who all helped in one way or another. I generally have a good diet but have cut out my glass of wine with dinner and most other sugar and any white carbs as sugar causes inflammation. So far none of that has helped as much as these new anti inflammatories. When I had a break from Pembro for two infusions the pain improved so I am hoping now I've been off it for 3 months that will happen again. 

                                • November 1, 2015 at 8:07 pm
                                Jubes
                                Participant

                                  Thank you for the suggestion. I am taking the good allepey turmeric. 3 teaspoons a day, plus bee pollen under my tongue and also raw Manuka honey. A teaspoon a day. However when I mentioned this to my rheumatologist he said I was WAY past homeopathic/natural therapy. I don't mind I will try anything if it doesn't counteract what the doctors are doing. I also have seen a psychic/healer, rekki and Skyped a Native American healer who all helped in one way or another. I generally have a good diet but have cut out my glass of wine with dinner and most other sugar and any white carbs as sugar causes inflammation. So far none of that has helped as much as these new anti inflammatories. When I had a break from Pembro for two infusions the pain improved so I am hoping now I've been off it for 3 months that will happen again. 

                                  • November 1, 2015 at 8:07 pm
                                  Jubes
                                  Participant

                                    Thank you for the suggestion. I am taking the good allepey turmeric. 3 teaspoons a day, plus bee pollen under my tongue and also raw Manuka honey. A teaspoon a day. However when I mentioned this to my rheumatologist he said I was WAY past homeopathic/natural therapy. I don't mind I will try anything if it doesn't counteract what the doctors are doing. I also have seen a psychic/healer, rekki and Skyped a Native American healer who all helped in one way or another. I generally have a good diet but have cut out my glass of wine with dinner and most other sugar and any white carbs as sugar causes inflammation. So far none of that has helped as much as these new anti inflammatories. When I had a break from Pembro for two infusions the pain improved so I am hoping now I've been off it for 3 months that will happen again. 

                                  • November 1, 2015 at 1:40 pm
                                  Gene_S
                                  Participant

                                    Have you tried curcurmin (tumeric) for pain.  It might work and is not a drug as tumeric is a spice.

                                    • November 1, 2015 at 1:40 pm
                                    Gene_S
                                    Participant

                                      Have you tried curcurmin (tumeric) for pain.  It might work and is not a drug as tumeric is a spice.

                                  Viewing 5 reply threads
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