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Health problems at One Year Post - Lemtrada ANYBODY ELSE?

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    Health problems at One Year Post - Lemtrada ANYBODY ELSE?

    I completed my first year, 5-day infusion of Lemtrada on February 1, 2015 and have not felt well since that time. I have had MS for over 10 years, and have been proactive with my prognosis, but this has got me stumped! I was not expecting miracles with this drug, and my neuro is pleased with my MRI, but I am feeling extremely ambivalent about taking the 2nd round this coming year because I am feeling so poorly; everything from continued weakness to asthma, to autonomic function problems with breathing. I am unable to regulate my daily medications - too much or too little. Overall, I feel like the drug changed my entire body chemistry and everything about myself has changed - and not for the better! I would like to know if anyone else has experienced something similar to what has been happening to me and if the second round helps you to feel better or worse. Many thanks for any and all opinions!

    #2
    Sorry to hear this - I have not noticed any changes for better or worse since my July 2015 5-day infusions which is good since before the treatments I was on a downward disability/weakness progression.

    I see my Dr later this month and based on my last appt he is looking at me going thru the 1 year dose.

    Comment


      #3
      glad you are stable!

      Originally posted by pb909 View Post
      Sorry to hear this - I have not noticed any changes for better or worse since my July 2015 5-day infusions which is good since before the treatments I was on a downward disability/weakness progression.

      I see my Dr later this month and based on my last appt he is looking at me going thru the 1 year dose.
      my prayer for you is that you continue to at least be stable, if not improving. I just don't know who to go to for advice about what is going on with my body!

      Comment


        #4
        I'm sorry you're doing bad. That's frustrating.

        I'm coming up on five months. yes, my allergies have gotten worse too. I've started using an inhaler when it affects my breath. Sometimes I even wonder if I think too much about my breathing. I don't know if I'm just being anxious or it is an autonomic problem. Plus didn't the Lemtrada trials show breathing issues as one of the problems participants have afterwards?

        I remember my doctor saying that the effects of Lemtrada aren't noticed by some people until after the second dose. Maybe if you talk to your doctor, he'll make you feel better about it. Then again, if your doctor is anything like mine it's probably really hard to get in since he's so booked up...sorry, that's my own personal gripe.

        You've gone through the worst of it with the first year's five day dose. Maybe it's worth just going through the three days of infusions and giving it some more time.

        Comment


          #5
          Hey Jules59, how are you doing? Did you go through with the second dose?

          Comment


            #6
            Hi Jules. Sorry to read you're having problems. I hope it's not because of the Lemtrada. I have had a good experience with Lemtrada and no relapses since my first round of infusions. I am now wondering what to expect on my second round...I hope your body settles down and behaves itself!

            I have also been proactive with treatment since diagnosis. I regret having gone along with my neuro's recommendation to try Gilenya, because it did nothing for me. He couldn't have known it wouldn't be effective for me- it was the right next choice in what was available...but I had the worst two relapses ever while taking Gilenya.

            Lemtrada was approved just in the nick of time, one month after I went off the Gilenya in anticipation of switching. Not knocking Gilenya, because I know it works for other folks.

            In your case, I would be hesitant to take the second series also, but if going by the data, I'd still go on it. If you can't definitively link your symptoms to the Lemtrada, and you're already in it for the first series...just take heart it is only for three days. Keep good notes and log all your symptoms before and after...maybe the trick is in cumulative dosing.

            Comment


              #7
              HELLO, I FEEL BAD THAT I HAVE NOT BEEN ON MSWORLD SINCE MY LEMTRADA INFUSTIONS FROM LAST MAY, 2015. BEFORE MY TREATMENT I WAS LOOKING EVERYWHERE TO READ ABOUT PEOPLE'S EXPERIENCE WITH LEMTRADA. I HATED TO POST MY EXPERIENCE BECAUSE I HAD SUCH UNUSUAL CURCUMSTANCES RIGHT BEFORE MY THERAPY.

              I TORE MY MYNISCUS IN MY KNEE AND SINCE I COULDN'T HAVE SURGERY AFTER THE LEMTRADA AND IT WAS GETTING REALLY BAD, MY DRS FELT I NEEDED THE SURGERY BEFORE THE LEMTRADA WHICH WAS SCHEDULED MAY 2-7 2015. THEY RUSHED MY KNEE SURGERY AND DID IT ON APRIL 28TH I THINK, IT WAS ON A THURSDAY AND THEN MY LEMTRADA STARTED THE FOLLOWING MONDAY.

              I WANTED TO PUT OFF THE LEMTRADA FOR ANOTHER 2 MONTHS BECAUSE OF THIS BUT THEY REALLY DIDN'T WANT ME TO HAVE ANOTHER DOSE OF TYSABRI AND DO THE WASHOUT AGAIN. I THINK THIS WAS A BIG HUGE MISTAKE.

              THIS HAS BEEN AN AWFUL YEAR FOR ME. MY KNEE CONTINUED TO GET WORSE AND WORSE, JUST HAD SECOND SURGERY 3 WEEKS AGO.

              THE LEMTRADA MADE ME FEEL AWFUL. I DIDN'T THINK I WOULD EVER GET OVER IT. I WENT THROUGH VERY SEVERE DEPRESSION, I THOUGHT I KNEW WHAT DEPRESSION WAS BUT I HAVE NEVER EXPERIENCED ANYTHING LIKE THAT. I JUST WANTED TO DIE.

              MY NEURO KEPT CLOSE TABS ON ME AND KEPT ASSURING ME THINGS WOULD GET BETTER. I HAVE NOT HAD A RELASPE SINCE TAKING LEMTRADA, I HAVE MORE HAIR, MY EYE SIGHT IS BETTER, I DO NOT SEEM TO HAVE THE RANDOM PAIN THAT I HAD BEFORE, SO AFTER ABOUT 8 MONTHS I STARTED COMING OUT OF WHAT I CALL THE "LEMTRADA FOG".

              MY FAMILY DISAGREES WITH ME, BUT I THINK I FELT BETTER ON TYSABRI, BECAUSE THE LEMTRADA HAS NOT HELPED MY FATIGUE AT ALL LIKE TYSABRI DID. AND I FEEL THAT THE FATIGUE IS THE WORSE. I CAN HANDLE THE OTHER STUFF BUT BEING IN BED OR LAYING ON THE COUCH ALL THE TIME IS PURE MISERY FOR ME. HOWEVER MY FAMILY DISAGREE, THEY FEEL THAT NOW THAT I HAVE PULLED OUT OF THE "FOG" I AM DOING SO MUCH MORE AND FEELING SO MUCH BETTER.

              I WASN'T EXPECTING MUCH FROM LEMTRADA, I JUST THOUGHT IF IT KEPT ME AT THE SAME LEVEL AS TYSABRI, I WOULD BE HAPPY.

              I GO IN MAY FOR MY 2ND ROUND AND I AM VERY NERVOUS. I PRAY I DON'T GO THROUGH WHAT I WENT THROUGH THE LAST TIME. I DO KNOW THAT THE SURGERY WAS OF NO HELP AT ALL AND REALLY MADE THINGS MUCH WORSE.

              I JUST HATED TO POST MY EXPERIENCE BECAUSE AT THE TIME IT WAS SO NEGATIVE AND I DID NOT WANT TO DISCOURAGE OTHERS IN THEIR DICESION TO GO ON LEMTRADA.

              I COULDN'T STAY ON TYSABRI BECAUSE OF MY HIGH RISK FOR PML, SO I FEEL LIKE I MADE THE ONLY DESICION I COULD MAKE. BUT IT HAS BEEN VERY ROUGH, MY DR SAID THAT WOMEN OVER 50 SEEM TO HAVE A HARDER TIME GETTING OVER THE TREATMENT AND I WAS 53 AT THE TIME OF MY LEMTRADA.

              I WISH YOU GOOD LUCK, AND I PROMISE TO STAY IN TOUCH AND SHARE WITH OTHERS MY EXPERIENCE JUST LIKE I HOPE PEOPLE WILL SHARE THEIR EXPERIENCES WITH ME.

              Comment


                #8
                Terrible Breathing problems 1 year out with Lemtrada

                Last Month I have suddenly been struck down with severe breathing problems, one local pulmonologist is sending me on to another pulmonologist in Vanderbilt. He has diagnosed me with Restrictive pulmonary disease and the cardiologist that he has sent me to says that I am the second person he has seen with these lung problems who has also taken Lemtrada. I do not have a blot clot in my lungs that has been checked twice.

                I am just sick and so afraid and I am not getting any answers. Unless something drastic happens I will not be taking anymore Lemtrada. The pain is unbelievable under my rib cage and I am unable to breathe and this is the scariest thing I have ever been through. I don't know what I am going to do.

                I have been to so many doctors these last few weeks and I have called my MS doctor today very upset and they told me to come in next Thursday and I hope I get some answers. I'm very scared. Is this something that I will recover from or is this permanent damage or is this something that will get even worse and is it life threatening.

                Please Please Please if anybody is reading this that is one year out on Lemtrada please share your experience.

                Thank you

                Comment


                  #9
                  Again, sorry to hear about your struggles.

                  I have had no changes since my post above from back in January. I see my Dr mid-June to discuss possible next steps. My first treatment was July 2015 so I'm closing in on 1 year.

                  Comment


                    #10
                    Second round of infusions

                    I did in fact have the second series of infusions at the end of April, and they were much less aggravation/drama than the first year's treatments. Three days long, one infusion line instead of two; staff maybe a little more familiar with protocols, etc. Less trouble getting an infusion line started and they didn't need to use their infusion team to find my veins.

                    So far, so good! Maybe I'm a little more positive about it because I didn't have a humongous relapse going on when I went in for this round.

                    Comment


                      #11
                      SORRY i HAVEN'T UPDATED MY THREAD IN SOOO LONG!

                      After asking about others' experiences with LEMTRADA after my horrible first year - it became clear about one year after the first infusion that the entire year I had a low grade infection in a cracked tooth that my dentist could never "see" despite my consistent complaints for over two years. The tooth finally cracked completely in November 2015 and because the dentist "couldn't see anything" I thought perhaps I was developing, on top of all the other weird and wacky feelings I was having, transgeminal neuralgia...However, the tooth, having cracked completely, but my not going back to the dentist, abscessed in February of 2016 and I had it extracted. I felt better the VERY NEXT DAY!

                      Since that time, I took the second round of LEMTRADA in June of 2016. I have had other health problems due to more and more inactivity - lymphedema in my lower legs and now some elevated creatine levels (probably due to lack of exercise and dehydration as well as chronic UTIs). So, once again, this year is turning out to be a "bad" year. I no longer drive but it's difficult to find home health physical therapy where I live, so getting some assistance helping me move my hemiplegic left side has not happened yet. Activity is a two-edged sword for me - it hurts to stand for very long, so I don't want to keep moving like I should, and then the other problems set in. I am pretty depressed over it, but I don't want to take anti-depressants - it took me almost a year to get off Wellbutrin a few years ago and that really bothered me how it hurt just to get off of it. Guess I'm just getting tired of feeling so poorly.

                      Comment


                        #12
                        I have no experience with Lemtrada. Just wanted to say thanks for posting. I am always in awe and grateful to people who share their experiences with new drug treatments.

                        I am so sorry you continue to feel awful. I hope you get some relief soon.
                        Kathy
                        DX 01/06, currently on Tysabri

                        Comment


                          #13
                          Originally posted by Jules59 View Post
                          After asking about others' experiences with LEMTRADA after my horrible first year - it became clear about one year after the first infusion that the entire year I had a low grade infection in a cracked tooth that my dentist could never "see" despite my consistent complaints for over two years. The tooth finally cracked completely in November 2015 and because the dentist "couldn't see anything" I thought perhaps I was developing, on top of all the other weird and wacky feelings I was having, transgeminal neuralgia...However, the tooth, having cracked completely, but my not going back to the dentist, abscessed in February of 2016 and I had it extracted. I felt better the VERY NEXT DAY!

                          Since that time, I took the second round of LEMTRADA in June of 2016. I have had other health problems due to more and more inactivity - lymphedema in my lower legs and now some elevated creatine levels (probably due to lack of exercise and dehydration as well as chronic UTIs). So, once again, this year is turning out to be a "bad" year. I no longer drive but it's difficult to find home health physical therapy where I live, so getting some assistance helping me move my hemiplegic left side has not happened yet. Activity is a two-edged sword for me - it hurts to stand for very long, so I don't want to keep moving like I should, and then the other problems set in. I am pretty depressed over it, but I don't want to take anti-depressants - it took me almost a year to get off Wellbutrin a few years ago and that really bothered me how it hurt just to get off of it. Guess I'm just getting tired of feeling so poorly.
                          How are you doing Jules? I pray better!!
                          Dedra
                          Son with MS

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