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    OK, What's normal with this????

    I've had RR since at least 1993, however after reviewing my medical history my last neurologist (Cleveland Clinic) felt that I've probably had it since my late 20's (pre MRI days).

    I've gone thru the ABC's, Tysabri was great until I developed anaphylaxis to it in August of 2011. Tongue, lips swelled, had difficulty breathing, so they took me off that and I was started on Gilenya last Thursday.

    Not been feeling too good since then - I've been tired, achey, sick to my stomach. I've adjusted the time I take my dose, (since I have to keep my job to pay for my insurance!) to just before I go to bed - but for the past three nights I develop severe stiffness on the right side of my neck and up in to my scalp about 20 minutes after taking it. Was so severe last night that I didn't sleep much and while my heart rate remained steady at about 55 I had blood pressures ranging between 189/103 to 223/113. My lowest BP was when I got up this morning - at 148/99.

    I'm at work - called my neuro's office this morning and still not heard a word yet - head ache/neck stiffness is still with me, along with the nausea and lethargy. I've not read about any BP increases so far, so wondering if I'm just different (and if and when I'm going to stroke).

    I'm trying to give this stuff a chance, but so far have not been impressed - are these just things I'm going to need to get used to?????
    Don't worry about the world coming to an end today.
    It's already tomorrow in Australia" - Charles Schultz

    #2
    My story is very similar to yours. I have also been on everything and also am allergic to Tysabri. My side effects to Gilenya are similar, except my HR and BP went down for several weeks after starting Gilenya. I was dang near a zombie. We moved to a new house in the same time frame, and on the last day of the move, I had to be more "with it," so, I didn't take my dose that day. When I went back on it, the side effects weren't as bad.

    I'm just over 2 months, and am not feeling the side effects as bad, but am walking better so, I guess I just had to get used to it. I don't really have any tips for you but wanted to at least let you know that others have had similar experiences.

    Definitely keep track of everything, and let your docs know what's going on. If you are having problems getting anywhere with your neuro, talk to your GP. I've found that sometimes a GP will get info faster from a neuro than I can.

    Comment


      #3
      thanks - a bit of a Gilenya rant after a long day....

      Thank you so much for taking the time to reply manderson. I feel much better that I'm not the only person out "here" that is having this type of reaction. It's great this board exists - after my day, its been more informative than any where else.

      I didn't get a return call from my neuro's office today - which is frustrating (b/c of the economy, I left NE Ohio and have moved to SE Indiana). My new neuro is o.k., but was definitely spoiled by the Clinic and their dedicated center to MS.

      I felt so awful at the end of the day, headache increased, balance and coordination were scary and my legs felt like jelly walking up the steps to my house. I called the Novartis Navigator. My assigned navigator had already "left" for the day (5:30 pm EST), her fill-in said that I should probably try to contact my neurologist or seek further medical attention as the side effects I were experiencing were not typical of Gilenya. (Not real impressed with my Navigator either, BTW).

      I've worked on the clinical end of health care for about 20 years and am the first to understand how busy days can become and how sometimes follow-ups can be missed. But if I had a patient call with pressures like mine, I think that would be a cause to act. (ok, call me biased!) I'm amazed that there's no protocol (at least for the practice I'm being seen by) to follow patients beginning a drug like Gilenya that can have side effects. After my observation, I was shuttled out the door and told that my feeling sleepy and having a headache were just normal and would get better in coming days.

      I consider myself a positive, proactive person normally - but Novartis seems to be more focused on producing promotional materials/glossy ads. (again, I understand pharmaceutical companies motivations as well). I was given a canvas orange and white tote bag on my observation day with all sorts of little puzzles and product lit from them - I jokingly call it the most expensive handbag I've ever owned. !!! (they're sponsoring a presentation on Gilenya next weekend at one of the local restaurants by one of our local neurologists) - vs. being helpful to patients that call in with questions about Gilenya - a quick follow-up call or e-mail after day 1 would go a long way). Since I'm paying about $300 a month for their product - you'd think they'd be a bit more interested in retaining actual customers!

      I ended up in the ER this evening - the doctor that saw me admitted he knew very little about Gilenya and its side effects. (This is an urban teaching hospital). The neurologist on call for the group wasn't much better (he specializes in Parkinsons), but said he would follow up with my neuro tomorrow. The ER doc did change my B/P medicine, since I was taking a beta blocker which is contraindicated for use w/ Gilenya - this information was readily available in my chart for my neuro as well, so obviously that was missed. I also had an MRA to make sure my pre-existing small carotid aneursym was behaving (it was). So now at 12:30 am I'm home after a extremely long day.

      I do plan on calling my PCP first thing tomorrow -he's great and was on top of things when I had the Tysabri anaphylactic reaction. He felt it was Tysabri immediately and had me in the office (and then admitted) to the hospital, and was able to get thru to my neurologist, so I guess the trick is having those two little letters after your name really does go far.

      Thanks again for the support !!! I'll keep you posted.

      At this point, Tysabri is looking pretty good to me.....
      Don't worry about the world coming to an end today.
      It's already tomorrow in Australia" - Charles Schultz

      Comment


        #4
        I'm sorry you're having so many side effects. I really haven't had the kinds of problems you're discussing, but I also live in Southeast Indiana.

        If you're not already there and you want some additional options (or maybe even a new neuro), I'd highly recommend looking into UC's MS clinic (the Waddell Center). Dr. Maria Melanson there is a great neuro who specializes in MS (she previously ran a clinic in Canada) and she's usually running a few trials or willing to prescribe some of the drugs that are currently in trial off label. (I know she's currently willing to prescribe Campath off label if you've already failed another treatment, etc.) You could have your neuro contact her to get into a trial or get some additional advice, or you could look into transferring.

        It's a shockingly long wait time to get in, but I've found that her office is worth it. Any time I've had a question, concern or symptom someone in her office calls before the end of the day. It's refreshing to have small town service in a larger clinic. Just my thoughts.

        Comment


          #5
          Waddell Center--University of Cincinnati

          I ditto, Just a small town girl's remarks. I currently am at the Waddell Center...not as aggressive as the Cleveland Clinic, but Dr. Melanson is great and does run a few trials. She is on the top of every new drug that comes out.

          And they are great about people calling back. I usually get called back within the hour..and they are nice about it.

          Ohio State, also runs several ongoing trials.

          Cheers--Katie

          Comment


            #6
            Thanks but been there.....

            Thanks ladies for the info on the Waddell Center - ironically that's where I've been treated since moving to the area.

            This morning Dr. M. called me back after I called once again and left another message. The woman that answered the phone (after I sat on hold for more than 10 minutes) said the reason no one had gotten back with me the day before is because they sent Dr, M the message and sometimes "she's just not good at checking her messages". I told them I'd taken another dose, an wanted to let them know that once again I'd had another night of excruciating headaches, insanely high blood pressures and with the weekend approaching, I really wanted some feedback because I'm supposed to be going to visit friends in Toronto this weekend and will be driving in a car for about six hours alone...

            About an hour later I did get a call back from Dr. Melanson. I agree, she does seem like a lovely person, she apologized for not getting back with me sooner, but IMO, her patient load is too large. When I asked about the possibility of the beta blocker causing some of my symptoms she asked when had I started taking those. I've been taking a blocker for unstable and high blood pressure for about ten years. It's in my chart. She truly seemed upset and said that I needed to stop Gilenya immediately as it is contraindicated in anyone that has cardiac conditions, since Gilenya affects cardiac receptors. She told me that's why I was having such bizzare symptoms. Again, she asked me how long I'd been taking them, I told her it was in my records and I'd also questioned this with the nurse practioner after I'd read the literature. She wondered aloud why I had been considered for it in the first place. She suggested Tysabri as an option (again I reminded her that's how I'd ended up with Gilenya because of my anaphylactic reaction to it after being on it with out any problems for 3 years).

            I'm not posting this to bash her/or the center but I am very frustrated. I've put up with a week of feeling like crap, not to mention just paying close to $500 for ER visits and am looking at a three month supply of medication that I've (and my insurance provider) have spent money for and now can't use. She did offer to put me back on Copaxone - a drug I took for five years and did not slow the disease progression down.

            I'm not sure what to think, except that if I hadn't kept calling I can't imagine what might have happened. I still have the spiltting headache - so I guess it will be a little time before this drug washes out.

            I think I'm going to get a second opinion and make sure that whoever sees me in the future is well versed in my medical history. With meds like these, it can truly be a matter of life and death -you need to be your own advocate!
            Don't worry about the world coming to an end today.
            It's already tomorrow in Australia" - Charles Schultz

            Comment


              #7
              Originally posted by Sparticle View Post
              Thanks ladies for the info on the Waddell Center - ironically that's where I've been treated since moving to the area.
              LOL...I am not laughing at your situation, I was under the impression you might be seeing a regular neuro vs. a MS Specialist.

              I totally agree with you on patient load. There are approximately 7,000 patients with MS in the area and one MS Center with two doctors and a MS Nurse Practitioner. Not everyone gets into the Waddell Center.

              What I have done is I since I live an hour from the Waddell Center is I have local neuro who treats and monitors me, in accordance with guidance from the Waddell Center, and only go to the Center once or twice a year.

              My local neuro is my sounding board and "voice of reason".

              Dr. M "loves" Gilenya. She wanted me on it too. After reading the literature, I said no, way, I am not a good candidate. I explained I was scared because I had a cardiac problem when I was a child (was on beta blockers too), but every once in awhile, I still have irregular heartbeats, not to mention my BP is extremely low. She thought that was O.K., and I sad, "No, Gilenya is not an option...period." She was not happy. Too bad says I!

              It looks like I might be heading down the Ty Road, but not sure. I am really scared of that too. I do get second opinions on all of her recommendations with my local neuro. I am a sissy pants when it comes to these drugs, because I too have had some bad things happen.

              Thing is, I know people who are patients at the Cleveland Clinic Mellon Center and you are not going to get the same service. I personally think, and this is just my opinion, that the Mellon Center is the 2nd best in the Country next to UCSF. Just my opinion.

              You might want to get a really good local neuro and drive once or twice a year to the Mellon Center. Might be worth it. I was initially offered that option, but I don't plan on being here much longer...moving back home. But, just a thought for you.

              The Waddell Center is better than most regular neuros and I have not had any problems with call-backs. But they are not in the same league as the Cleveland Clinic. As a former patient of UCSF, I can say that.

              Good Luck to You! Hope it all works out.

              Katie

              Comment


                #8
                My rule is that if the doctor doesn't seem to be helping me, I'm going someplace else. If I can't live with the worst side effect of the drug, I'm not taking it. Sounds like you might want to look into a local neuro for flare ups, etc. but go someplace else (Cleveland Clinic if that's where you were happiest) for routine treatment. Also, do you have any drugs you are interested in? I always keep my eye out for what I want and then get the neuro's opinion of whether it would be good for me or not. If I don't agree, I'm going to find a doctor who'll give it to me.

                Melanson's patient load is extremely high, but she's always taken the time with me to go over my actual MRI both prior and past and to address whatever questions and concerns I have. (Maybe it's because of the fact that she knows I make my living suing doctors and drug companies, but I never got that impression from her.) I've almost always taken the lead with her as to what drug I'd like and then getting her thoughts on whether it would be a decent fit, etc. or if there's something coming down the pipeline that she likes better.

                I wish you all the best, but it sounds like maybe you should be looking into a different neuro. Sometimes what's a good fit for one is not a good fit for another. I know it would suck, but Cleveland is really only a five hour drive. It wouldn't be the end of the world to return to treating there. Just a thought.

                Comment


                  #9
                  Thanks

                  I'm planning on getting in contact with my neuro from the Mellen Center tomorrow a.m. I wouldn't be opposed to making the 5 hour drive - when I lived there there were patients that came up monthly from as far away as Tenessee & West Virginia for Tysabri treatments. So I am going to see if they'd be open to treating me "from afar" - and then trying to find someone closer to be my "sounding" board.

                  I'll have to pay out of network fees, but it will definitely be worth it keep everything stabilized, not to mention having me croak due to cardiac failure!.

                  Katie, It's interesting to hear you say Dr.M "loves Gilenya" - I recently received an invite to a dinner at a locaal restaurant where she is the guest speaker on Gilenya- sponsored by Novartis. Perhaps thats one of the reasons she so aggresively promotes it.
                  Don't worry about the world coming to an end today.
                  It's already tomorrow in Australia" - Charles Schultz

                  Comment


                    #10
                    Sparticle -

                    If you don't want to travel all the way to Cleveland, there is an excellent neuro in Xenia, Ohio, (just east of Dayton). I travel from Columbus to see her. She is extremely personable and incredibly knowledgeable. As you would expect from a smaller-town neuro, she does more than MS, but she saw many, many MS patients in her former practice in Chicago. She researches and attends conferences on MS constantly. I love her! She listens, she works with me, and she has been extremely helpful.

                    She brought G to my attention when we were talking though why I hated the shots so much (I didn't have any major side effects - just incredible and painful welts at the injection site). We discussed it, went over the potential side effects very carefully, and I decided that it might be the right choice for me. I started taking it in August.

                    Her name is Dr. Antonella Svetic. She is Croatian and sometimes her accent is a little thick, but she is great! Let me know if you would like more contact info.

                    I have had no problems with G. My 6-hour monitoring was boring - the nurse monitoring me even said so!! Nothing happened, my heart rate never even flickered. I did have a relapse 1 month after starting G, but I don't think that had anything to do with the G. In the 4 weeks between starting G and my relapse I had injured my ankle at a concert, then went to the lake and slid off the ladder of the boat - covering myself with nasty bruises (I hit the ladder and the motor going down, and I bruise easily), then got a nasty cold, then I had all of the beginning of the school year stress (I'm a teacher). I think it was a relapse waiting to happen.

                    Dr. Svetic was great working with me through all of that over the phone since I had just seen her 1 month earlier.
                    We decided to do 3 days of high-dose steroids instead of having to drive 60 miles for 3 days for IV Solumedrol. Her staff even found a compounding pharmacy in Columbus so I didn't have to drive to Xenia to get the meds. They are great!
                    Dx 12/01
                    Betaseron, Copaxine, and Rebif
                    Started Gilenya 8/3/11

                    Comment


                      #11
                      Sparticle, I had to quit Gilenya last year because of severe head pain, neck stiffness and nausea. As far as I know I am the only person who has had pachymeningitis, an inflammation of the dura, lining of the brain. It was caused by Gilenya and I still have it even now.

                      If you continue to have your symptoms, insist on getting an MRI with and without contrast to make certain you don't have this same problem. I never thought it would happen to me, but it did. I look forward to the days when I am free of head pain. I'm not certain when it will happen though.

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