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Had Lemtrada infusion March 23-27, 2015

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    Had Lemtrada infusion March 23-27, 2015

    Hello all. Checking in after receiving my first Lemtrada infusion (full 5 days). I did not know what to expect. Diagnosed since 2001, relapses prior to 2014 had involved primarily numbness in extremities and minor short-lived visual disturbances. THIS relapse took my balance, several components of effective speech (articulation, word searching), swallowing difficulties, my singing voice !!!) ....I was falling into walls, door frames, in bathtub, etc.

    They administered solumedrol simultaneously with the Lemtrada every day, along with Acyclovir, Benadryl, and one other I do not recall. The Acyclovir was to prevent fungal infection/complications like shingles, which I've had before. The Benadryl was pretty high dosage and made me sleepy every time they administered it- it was to prevent allergic reactions. I slept a lot. I don't remember what the other medicine was for. I think it was Ibuprofen or Tylenol.

    It made for a pretty long day, checking in each morning and not really leaving until 4:30/5:00 pm most days, but I slept so much it didn't really bother me. While I was in the hospital they made me wear a fall risk bracelet and they took my vitals all the time. I didn't really encounter any adverse reactions until the third day. One of the reactions to the Lemtrada appears to have been a lower heart rate. My nurse attached electrodes to get an EKG printed out for the internal medicine doc to interpret because if it ran too low they would not proceed with the infusion. I drank coffee in the meantime and my heart rate went up to an acceptable albeit lower than normal for me heart rate.

    The next day, they did another EKG for the same reason. Heart rate elevated to an acceptable level again so they proceeded with the infusion. Later that day I started feeling REALLY uneasy during the infusion. I had a sharp headache smack me right across the forehead, I could feel my heart rate speeding up, and I was having a hard time breathing. My nurse had left to get some paperwork or something and when I hit the call button no one seemed to be aware. They asked me what I needed, I told them I needed a nurse because I felt sick all of a sudden, and I think the connection between the call button and their attendant was disconnected. I was majorly concerned that I was having an allergic reaction and got out of bed, went to the doorway, and told the first person in scrubs I needed my nurse, just as I saw my nurse walking back to the room. Whew!

    That episode ended with my nurse assessing my heart rate, administering some pain meds for the headache, offering to administer something to assist with the breathing (a lighter variation of steroids already given- I declined because that issue resolved itself afterwards) and monitoring my heart rate till it finally settled down a half an hour later. I was seriously concerned when it happened because it was uncomfortable, but my nurse told me I was about where they expected a reaction to occur if there was going to be one, because of the accumulation of Lemtrada in my system after four days.

    The last day was pretty uneventful and shorter than the previous days out of familiarity the staff had with me by then. The most unpleasant facet of the experience was that they ran two infusion lines, one in each forearm. Ideally, one was for Lemtrada, the other for the steroids and other added medicines. On at least two days they wound up running both medicines through one IV because my veins are tiny, elusive, deeply buried, and uncooperative to get a needle in. They used their IV Team (nurses selected specifically to only perform IVs/PICC lines/Central Line IVs when they were trying to start new IVs because either I had a vein blow or the meds were infiltrating the tissue instead of going into the vein. To their credit, the team found new veins by their second try on all attempts and never had to stick me more than three times on the three instances they were called to start a new IV. Thank you, IV team. NOT my favorite thing to do.

    When I left the hospital, it was with a walker. Prior to leaving the hospital, I felt my balance improving. I stored the walker in my garage on my third day home. My speech and swallowing issues cleared up. I still couldn't sing worth a darn. One week after lying around at home and sleeping I started physical and speech therapy. The physical rehab therapists were awesome and explained what exercises to do to regain function, and why they worked the way they did. The speech therapist helped me understand the various cognitive processes at work in effective speech and swallowing but so far we've mostly explored the various types of memory and how the brain retains memories because that is what I focused on with her to see if I had experienced cognitive deficits from the last eleven years. She tested me in four areas and I have one area to complete testing in, which is spatial memory/spatial relationships. I'll know more when I see her next, but I had suspected I was trying to compensate for deficits before the last two relapses but couldn't "prove" it.

    I'm pretty much convinced I have some cognitive deficits with memory based on work-related challenges, and I am awaiting a finding from the Bureau of Vocational Rehabilitation to see if they will accept me for rehab services with regard to seeking employment. In addition to receiving speech therapy prescribed by my neuro, BVR had me evaluated for cognitive deficits, not just speech. I am unemployed currently because one week prior to going in for the infusion, my employer discovered I have MS and laid me two days later. One month prior to that, my employer had given me a positive performance evaluation and a significant raise.

    My physical symptoms of poor balance from the relapse had not manifested themselves until I left employment there, but I HAD noticed minor speech issues when trying to talk to coworkers. My job was as a drafter, and I had issues with my employer's unlicensed, cobbled together software and inconsistent data entry programs...so I suspected my problems were possibly a result of cognitive deficits. On the other hand the timing was certainly odd. He paid me the remainder of the two weeks I hadn't worked prior to leaving, my two weeks of paid vacation, and two weeks of severance pay.

    I asked him if he would have a problem if I sought unemployment, and he said he wouldn't contest it. I'm still waiting to hear from the bureau of unemployment to see if and when they will accept my application and approve me for unemployment pay. I think if I am approved, they still factor in severance pay as income before allowing a claim to be processed. I have had people tell me my termination was discrimination and in violation of the ADA. I'm not so sure of that. My state is a right-to-work state, and I had never disclosed my diagnosis nor asked for accommodation. If I had known that my drawings were unacceptable, I would have asked for accommodations. There were unused offices in the building that would have cut down on distraction from the sales floor where my desk was.

    So...I am continuing to work my therapy program, hoping my balance returns to normal since previous symptoms such as numbness resolved. I hope this post gives anyone considering Lemtrada an idea of what to expect. I can't say the Lemtrada is what got me off of the walker and given my speech back... probably more a matter of the high dose steroids for five days...but I'll take it. It sure beats running into walls. I think the test of how well Lemtrada will work for me lies in the long run...hopefully no more relapses.

    #2
    Thank you so much for this wonderfully detailed experience. I am currently on TY and my MS Specialist wants to switch me to Lemtrada next year. Of course there are no brochures for patients yet.

    I was exceptionally pleased to hear that you seem to be experiencing Symptom Management with Lemtrada. This was my biggest concern, because I do experience Symptom Management on TY. Still having one flare a year, but no progression. One major flare per year is a huge improvement from where I was.

    Again, thank you so much for sharing the actual procedure process with us.
    Katie
    "Yep, I have MS, and it does have Me!"
    "My MS is a Journey for One."
    Dx: 1999 DMDS: Avonex, Copaxone, Rebif, currently on Tysabri

    Comment


      #3
      Thanks for the details of your Lemtrada experience.

      My Neuro wants me to switch from Aubagio thinking it's the best option for me after its recent approval. All paperwork has been submitted and was just approved last week. I'm targeting June for the 5-day infusion.

      Comment


        #4
        Good luck to everyone. The infusions were no walk in the park for me, but even today I still feel great, happy, pleased to be here on this Earth. I feel like my MS is in check and I hope to continue to help other people with MS. My long term experience with Lemtrada has been the best gift I've ever received. Thanks Genzyme!

        Comment


          #5
          My Lemtrada May 4-8, 2015

          Hello, I am getting discouraged, I thought I was improving yesterday but today I am back in the bed again. The weakness is very significant for me. I am 10 days out from the last infustion and I do not feel that I am getting any better. I called my doctor's office and they said that this can be typical up to 3-4 weeks after the lemtrada. I guess I just wish I knew this was going to be this rough. Maybe it isn't for other people but I am so weak I can't do hardly anything. Other then take a bath, I am just laying around watching TV. I know there are just a few of us but please share you experience if you have had lemtrada.

          On a positive note, I am not in any pain, I do not have a headache, I don't seem to have the blurry vision I usually have but the weakness is very significant.

          Comment


            #6
            Originally posted by regigirl View Post
            Hello, I am getting discouraged, I thought I was improving yesterday but today I am back in the bed again. The weakness is very significant for me. I am 10 days out from the last infustion and I do not feel that I am getting any better. I called my doctor's office and they said that this can be typical up to 3-4 weeks after the lemtrada. I guess I just wish I knew this was going to be this rough. Maybe it isn't for other people but I am so weak I can't do hardly anything. Other then take a bath, I am just laying around watching TV. I know there are just a few of us but please share you experience if you have had lemtrada.

            On a positive note, I am not in any pain, I do not have a headache, I don't seem to have the blurry vision I usually have but the weakness is very significant.
            Presumably, you have had steroids before. I don't know what your experience with those has been, but they have typically helped me with relapse symptoms. Once over the course of just three days, another over several weeks. I am assuming you had steroids with your Lemtrada also. Try to remember how long it has taken steroids to help resolve your symptoms in the past and use that as a guideline for expectations.

            I don't think I can credit Lemtrada for resolving my relapse symptoms. Instead, I think it is viewed as more of a long range preventative approach. If you were having the fatigue and vision issues when beginning Lemtrada, then the steroids administered could be simultaneously tamping down symptoms, as possibly evidenced by the reduction in blurry vision you noted, and it may just take longer to help with the weakness. I was also physically weak when going in and had to use a walker to help with balance as well as stamina issues.

            I remember being absolutely physically wiped out after my infusion and sleeping as much as I possibly could. If you're looking for advice, mine would be:

            1. Keep sleeping until you don't want to sleep anymore. When your body tells you it is tired of lazing around (and it will), then you'll know it's time to try something new. Rehab!

            2. Take your nutrition seriously and eat right as much as possible;

            3. At your earliest opportunity, request and begin physical therapy/speech therapy. The best thing about therapy is that they will assess you first so you are aware of what areas you can work on to achieve your best potential. Speech therapists can show you what parts of the brain handle what cognitive tasks, what deficits you may have and don't even know, and ways you can work around any deficits.

            4. Don't forget to follow up with your neuro's office and arrange your monthly blood draws to monitor for any adverse side effects.

            *5. If you have a Nintendo Wii or can get one, consider checking out the Wii Fit, or a similar system by Sony. The Wii has games that help you improve your balance and endurance. I just found out today at my therapy that they loan out the Wii games to therapy patients. Now all I have to do is find a balance board.

            Best wishes to you in this first day of the rest of your life. You didn't mention your employment status or financial considerations, but I included the info about therapy because it is vital to my well-being to try to remain employable as long as possible. Employment is a huge concern for me and it is almost as worrisome as the MS itself.

            Comment


              #7
              Thank you for your advice. I have been on the phone with my doctor's office and with Lemtrada. Both say that Lemtrada therapy is as varied in people as MS itself. So for me I am just accepting that this is no walk in the park for me and I'm ok with that as long as I know that things will get better.

              I felt a little stronger today and I am more clear headed, I don't feel so drugged out,.

              However I put on a load of towels to wash, I folded a set of bed sheets, and a basket of towels and I'm so exhausted. I'm shaking, shortness of breath. I'm feeling really bad after doing so little.

              The week before Lemtrada I was walkind a mile and 3/4, I have been walking everyday since Dec 1 when I finally quit work. I started with a mile and I have built up to a mile and 3/4.

              I think this is just a powerful therapy and like any drug it's going to affect everyone differently. So I'm takin your advice, I have no where I have to be or anything I have to do, I'm going to sleep, eat and lay around until my body tells me it's ready to do more.

              I don't regret doing Lemtrada, I have confidence that I am going to be much better then I was before. But I know that right now I just have to take one day at time. Unlike blogs that I read prior to this, I am not able to just jump back into my life pre-lemtrada, it's going to take my body a while to get to that point. But I'm confindent that each day I will get better and my life and abilities will be better then before.

              Comment


                #8
                Thattagirl! I'm your biggest cheerleader. My therapist told me something I'll share with you: That little bit of laundry you confess to feeling so tired over is actually occupational and physical therapy you successfully completed. Although you're feeling tired, it is "work hardening" you...if you really want to add to your progress, try tightening your abdominals (core) while you do this stuff. Core strength is what lets us stay upright, breathe effectively, (sing, for me)...just being upright can be tiring. I feel it sometimes after I get up in the morning after lying down/sleeping for a long time.

                The first time I tried walking around in my neighborhood after the relapse, I felt like a cartoon character that had been sliced into cross sections and put back together haphazardly (reference old Tom and Jerry or Coyote and Roadrunner cartoons after yet another Acme device disaster). Disconnected, shambling, like a puppet on a string staggering along. An absolute puppet! It was my weak core muscles...getting those reawakened has helped alleviate that dreadful feeling. So has increasing my stamina. I am upright for longer periods than I was before the infusion...so I'll take it as progress. It kind of helps to keep a brief diary during this stuff so you can look back and feel encouraged by progress.

                Originally posted by regigirl View Post
                Thank you for your advice. I have been on the phone with my doctor's office and with Lemtrada. Both say that Lemtrada therapy is as varied in people as MS itself. So for me I am just accepting that this is no walk in the park for me and I'm ok with that as long as I know that things will get better.

                I felt a little stronger today and I am more clear headed, I don't feel so drugged out,.

                However I put on a load of towels to wash, I folded a set of bed sheets, and a basket of towels and I'm so exhausted. I'm shaking, shortness of breath. I'm feeling really bad after doing so little.

                The week before Lemtrada I was walkind a mile and 3/4, I have been walking everyday since Dec 1 when I finally quit work. I started with a mile and I have built up to a mile and 3/4.

                I think this is just a powerful therapy and like any drug it's going to affect everyone differently. So I'm takin your advice, I have no where I have to be or anything I have to do, I'm going to sleep, eat and lay around until my body tells me it's ready to do more.

                I don't regret doing Lemtrada, I have confidence that I am going to be much better then I was before. But I know that right now I just have to take one day at time. Unlike blogs that I read prior to this, I am not able to just jump back into my life pre-lemtrada, it's going to take my body a while to get to that point. But I'm confindent that each day I will get better and my life and abilities will be better then before.

                Comment


                  #9
                  Again great advice about the core muscles. I try to do that off and on as I think of it weather it's standing in line at the grocery store or having to sit through one of my husband's boring political dinners.

                  Not counting the week of the infusions, how many weeks did it take you to start feeling like you were "coming out of it"? What improvements have you seen since March?

                  I have very high expectations with this drug and I do not intend to be disappointed. I intend to do a marathon either by the end of this year or the beginning of next year, even if I have to use a walker.

                  I have a trainer who has worked with stroke victims and MS patients and even though I used a cane from time to time, I was no where close to a walker (or so I thought) but he had my doctor prescribe one. I didn't want to but I did. His training was for me to walk with a walker so that I could look straight ahead and just walk. No worry of falling, or stumbling, just walk as fast and as far as I can. I was able to start with a mile, with a walker I could do it. As bad as I hated going to pick out that walker that was the smartest thing I ever did. He told me to look at it as buying a piece of exercise equipment not as a walking aid.

                  But I realized that I really needed it, I use it a lot now and I'm not ashamed of it. (I am very very vain) I use it in the house when I have to cook a big meal like for Christmas or birthdays. Also I don't know what I would have done without it when I had to have knee surgery. It was a necessity.

                  Good luck and let me know everything you can tell me about your recovery. I too am keeping a daily journal.

                  Comment


                    #10
                    "He told me to look at it as buying a piece of exercise equipment not as a walking aid." Great advice! Funny how a mental adjustment clears the way for an improved attitude. When you can forgive yourself for not being perfect....

                    Again, crediting the steroid infusions for the improvement in balance, I noticed improvement about one week later in very small increments to the point I stored the walker out in the garage. By the end of the week after infusion. A point to take into consideration, for me, is that the balance issues, although quite severe, are brand new to me and so maybe the damage to the myelin was only a few thicknesses of the sheath, as opposed to the damage I have sustained in every relapse that caused numbness in my feet. Nevertheless, I am stil having to work on my balance exercises every day or I deteriorate. It looks like it is something I will have to work on for the rest of my life.

                    My feet are still numb to a degree, but I sense they are improving as well, only more slowly. I think that means the neural pathways to me feet have more extensive damage and so may take longer to heal up. Right now they feel like Lego blocks stuck to the ends of my legs, lol. "EVERYTHING IS AWESOME! EVERYTHING IS COOL WHEN YOU'RE PART OF TEAM! EVERYTHING IS AWESOME WHEN YOU'RE LIVING OUT A DREAM! (Lego movie sarcasm for ya.)

                    I am also now susceptible to pseudoflares, where your symptoms activate for the period of time you have an elevated body temperature, which I do from working out. Not gonna let that stop me from working out, but is something to take into consideration when exercising and judging my progress.

                    Comment


                      #11
                      I am now over 2 weeks out from the infusions. I am finally feeling stronger. I did more yesterday then I have done since having the Lemtrada.

                      This has been tougher then I thought it would be. The weakness I have felt has been unbelievable. Some days I would take a bath and get dressed and some days I didn't even get out of bed. Most days I have not gotten out of bed.

                      I think I have noticed some improvement in the transition from sitting to standing and walking, especially in the mornings. I didn't notice it at first but after sitting for a while and I got up from my chair I noticed that I was not hanging on to the furniture until my legs get the coordination to start working correctly. Then I paid attention and notice that I'm not doing as much "wall walking" in the morning when I work up.

                      Right now I feel that my body is just trying to get over all the "trauma" it has been through.

                      However, any one who is reading this and is considering this treatment please keep in mind that I had some exceptional circumstances going into the therapy.

                      I had torn my MCL right before I was scheduled to have my Lemtrada, there was no way to wait until after surgery. After consultation with both doctors, my MS specialist did not want to put off the Lemtrada again as it had been delayed twice since January and he didn't want me to have another dose of Tysabri as my titer # for the JC virus is very very high. So, on Thursday April 29th I had knee surgery then the next Monday May 4th I had my first Lemtrada infusion and then everyday for that week. So I feel this probably had a lot to do with what I feel is my very slow recovery. But there are so few us it's just very hard to know what is "normal" for this therapy.

                      I hope to see more people leave their feedback as more people get Lemtrada!

                      Comment


                        #12
                        Hey Regigirl...check in

                        How's the marathon training coming along? Are you kicking MS butt or what?

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