The Troublesome Tecfidera

It began with the itching, just a little bit at first. I told Dizzy there must be lots of little bugs around at the moment. But then it started increasing (maybe the bugs were having baby bugs….). Until itchiness all the time! Itchy and red in one spot for 15 minutes, then it would go and pop up in another spot for 15 minutes, and this would continue all day! Dizzy was very confused and was keeping her distance, she didn’t want to be an itchy, red Dizzy donkey!

Dizzy was reading her book down the other end of the bed…

Dizzythedonkey reading

Dizzy wasn’t much help with her suggestions either. Maybe I wasn’t eating enough ginger nut biscuits? 🙂

But then the 3 monthly tecifdera blood tests came back. Liver too high and white blood cells too low.

All a results of the tecfidera (our MS medication). :/

Tecfidera

So me and Dizzy are drug free again, for the time being, while the itching stops being itchy and the white blood cells increase in population. 🙂 The plan is to have another blood test in a month and to then try again. I’m not sure if I’m sure about this plan though. Won’t my body remember it’s not too keen on these tables anymore? Dizzy certainly doesn’t forget if she’d decided she doesn’t like something! But the other option is to start decided on a new medication again. It took us 3 years the first time!

Would it be bad to just let the donkeys decide? 🙂

dizzythedonkey donkeys

Has anyone else tried a medication again, after their body seemed to have decided it’d gone off it a bit? And was it ok the second time? 🙂 xxx

80 thoughts on “The Troublesome Tecfidera

    • dinosaursdonkeysandms says:

      Thank you Brigid. The white blood cells should start going up again now I’m off the medication. 🙂 As it was over 7 months since I started it, I thought it was all going fine! But the nurse did say this can happen on rare occasion. We’ll then decide after the blood test, I’m sure Dizzy will have some good donkey advice about it. 🙂 Sending donkey hugs, and we hope you have a lovely weekend Brigid. 🙂 xxx

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  1. u2hearts says:

    I was on many of the MS drugs and except for betaseron I never had gone back to a medicine. However I wasn’t having adverse effects from Betaseron even when I stopped. I wish you the best it’s not easy.

    Liked by 1 person

    • dinosaursdonkeysandms says:

      Thank you 🙂 , and I love that it’s a tablet too! Hopefully the white blood cells will return to their normal count and the second attempt will be ok. 🙂 I would rather avoid injections if possible, I’m a right baby with needles! xxx

      Liked by 1 person

    • dinosaursdonkeysandms says:

      Thank you. 🙂 The itchiness is already much better! They gave me anti histamines which have helped loads! And I have a blood test in a few weeks to see if my white blood cell count has returned to normal. 🙂 I’m hoping my body will just ‘forget’ about this blip too! 🙂 Hope you have a lovely weekend. 🙂 xxx

      Liked by 1 person

  2. Positively Alyssa says:

    I am so sorry Tecfidera did not work out for you Heather. I have tried so many and I know it can be frustrating, but you will find the right one. I was on Gilenya for 6 years and wanted off it really because my husband was in my ear saying I had been on it too long. I had switched to Tecfidera but unfortunately it just was not strong enough and I am back on Gilenya. There are so many out and it just takes time to find the one that will work with your body chemistry. I will keep you in my thoughts and send you LOTS of positive vibes!!!

    Liked by 3 people

    • dinosaursdonkeysandms says:

      Thank you so much Alyssa! I’m still not sure, once the white blood cells have gone back up, whether to give tecfidera another go. Otherwise it will be giving copaxone or gilenya a try. 🙂 This is my first DMD so at least there are other options. 🙂 Hope you have an amazing weekend. 🙂 xxx

      Liked by 1 person

  3. roseelaineblog says:

    It’s so strange to read about your itchiness because I have been having exactly the same problem. The doctor gave me some tropical ointment but it did not do anything and I asked if it was to do with my liver. ( I’m currently seeing a liver specialist)

    The doctor did my yearly bloods and my liver results came back very high which was surprising because I’ve just lost 12lb in weight to help my liver. I’ve put my itchiness down to taking Laxido because I stopped taking it and when I took it again the itchiness came back. I feel for you because it’s horrible especially in this weather. I’ve kept out of the sun and I bought a cooling towel which Caz recently recommended which is great. I wrap it around my arms and it reduces the itch.

    I see my liver specialist next month so I am going to ask the question re itching and medication. 🌹

    Liked by 1 person

    • dinosaursdonkeysandms says:

      That is really weird! Because the constant itching had only been a month or two, and it was the first blood test where my liver results where high. The 3 monthly one before they were completely normal. It’s strange we’re both had liver differences and itching.

      Luckily my itching has already stopped! I’m hoping the liver and WBC results will be normal again too (hoping the itching is a sign! 🙂 ). I hope you appointment goes well with the liver specialist, and please let me know how you get on, and if liver and itchiness can be linked. xxx

      Liked by 1 person

      • roseelaineblog says:

        I’ve had high liver readings for year hence seeing the specialist. After numerous scans I was diagnosed with non alcoholic fatty liver disease. I don’t drink. It was suggested that I changed my lifestyle and lose weight. Imagine my surprise when after losing 12lbs that my reading came back abnormal, then after another test it was still very high. I’ve read that you can have a rash with liver problems. I will definitely be asking the specialist that question! I’m still itching at times but it is much better. I have to have more blood tests before seeing him, it will be interesting 🌹

        Liked by 1 person

      • dinosaursdonkeysandms says:

        Do you have a rash with the itching? I had rashy patches, but again, each one would only be there for 15-20 minutes. :/
        I really hope they’re able to find out what’s causing it and that your next blood tests results are lower. 🙂 xxx

        Liked by 1 person

      • dinosaursdonkeysandms says:

        That’s a really nice and simple solution! 🙂 Luckily my itching has now stopped, just waiting for the WBC count to increase, blood test booked for Wednesday. 🙂 Hope you have a lovely weekend. xxx

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  4. cathysrealcountrygardencom says:

    I have been on gilenya for afew years with absolutely no side effects at all. I have a very low white blood cell count, but have stayed healthy apart from the usual colds. Purely based on my own experience I really recommend it. If I were you I would not go back onto a drug that obviously dosent suit.
    Good luck , stat cool.

    Liked by 1 person

    • dinosaursdonkeysandms says:

      Thank you Cathy. 🙂 At the moment gilenya is my next choice, I really don’t like needles, and a lot of people have said they get on well with it. It’s nice to hear that you do aswell. 🙂 Is the low white blood cell count a result of the gilenya?
      Hope you’re managing to stay cool too! 🙂 xxx

      Liked by 1 person

      • cathysrealcountrygardencom says:

        The low white blood count is a normal result and it has never caused me any problems. The first time you take it they have to make sure that your blood prssure does not go too low( I was monitored in hospital for a few hours), but after that you just take one pill a day and I can honestly say I have not had any bad reactions at all. It is like taking a vitamen pill!
        Since taking gilenya I have had no relapsess at all. I have experienced some weakening of arm and leg, so it has not stopped the MS completely but I have continued to work full time, garden, and go walking ( all within very gentle limmits) Finding the righr DMT takes trial and error, but dont give up trying as not taking a DMT is a crazy thing to do.
        Good luck!

        Liked by 1 person

      • dinosaursdonkeysandms says:

        Thank you Cathy. x The nurse did say they keep you in hospital just for the first time you take it, as very rarely people can experience changes in blood pressure and heart rate. The fact it’s just one pill is very nice. 🙂 And I’m so glad you haven’t had any relapses since being on it, it definitely sounds like the right one for you. 🙂 I think it will come down to trying tecfidera again or gilenya for me. xxx

        Liked by 1 person

  5. Cooking in Cowboy Boots says:

    I have been on Tysabri 3 times. The first time I went off it was when, after 2 years, there was increased PML risk (before they had a blood test for the JC Virus). I then tried Avonex……big mistake for me. Then I went back on Tysabri for 5 years, took a medication vacation of 6 months to see if Ty was causing my elevated WBC and Lymphocytes, which it was and come t find out that means the drug is working. I had a relapse during the “vacation”, went back on Tysabri and am back to my baseline and feeling good! Good luck finding what really works for you!

    Liked by 1 person

    • dinosaursdonkeysandms says:

      I’m really glad you have found the right one for you. I know Tysabri works really well for a lot of people. 🙂 It’s one I’ve been given to look at but I’m just awful with needles (biggest baby with them ever), so the infusion aspects does put me off abit. I am keeping it on my consideration list though. 🙂 xxx

      Liked by 1 person

  6. rugby843 says:

    Unfortunately yes. Lyrica years ago and just weeks ago, gabapentin, which is its brother from another mother! Tried it but same results. So now on nothing for pain except Tylenol
    Good luck, I empathize.

    Liked by 1 person

  7. theupsidedownturtle says:

    Oh no! I haven’t been through that myself yet, but I can imagine it’s frustrating. BIG HUGS!!! Hopefully your bloodwork comes back great the next time around & you figure out something that works for you!

    Liked by 1 person

    • dinosaursdonkeysandms says:

      Thank you! x The most frustrating part was that I had been fine on it for over 6 months, all bloods had been normal and only a tiny bit of itching that I had just put down to life. 🙂 Bloods in a few weeks, and the itching has already stopped! 🙂 Are you on any medication at the moment? xxx

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  8. anne leueen says:

    I’m so sorry to see that the medication has caused you this itching problem. Ghastly! I have no experinece with medications other than pain killers when I have had surgery and they just make me feel ill or give me hallucinations. So I can’t be of much help to you with this.But I shall send you positive thoughts and you are in my prayers.

    Liked by 1 person

  9. Jeanette S. Hall says:

    From my personal experience, you will never stop itching! I have itched from every MS medication I have ever been on. Avonex was my favorite medicine, but my body stopped accepting it. So been on many others . All caused itching! Am currently on Tecfidera. Having no problems with it as long as I eat something right after taking it (a plain piece of bread will suffice). Forget to eat and it makes me feel sick to my stomach (I do not throw up, just feel like I’m going to)!

    There is no good answer to the itching. Put a cool wet wash cloth on the itchy spot, it will relocate and you do it again! Drives me nuts (been nuts for years…)! Swimming helps keep your mind off itching provided you have access to a pool (don’t have it where we live now).

    Welcome to the scratch and sniff life! Sniff what your pet has done this time, and then go back to scratching! Keep your nails cut extremely short to save your skin.

    Liked by 1 person

    • dinosaursdonkeysandms says:

      I’m sorry you’ve experienced the itching with them all. It’s such an irritating side effect! Luckily mine has already stopped after temporarily coming off the tecfidera. I have a blood test in a few weeks to see if the white blood cell count and liver results have returned to normal. Then it’s just deciding whether to try if again, or give a new one a go. x Hope you have a lovely week and that you are still recovering well from your surgery. 🙂 xxx

      Like

  10. Steve Boseley says:

    That sucks! For me, my skin burns all the time. I have changed meds several times with limited success, but ofte the positives are outweighed by the negatives. I am contemplating returning to an earlier med but like you. I’m not sure if it is the right move. I hope you get some relief from the itching as that would drive me to distraction!

    Liked by 1 person

    • dinosaursdonkeysandms says:

      What medication are you on now, and which medication are you thinking of returning too? It is such a hard decision! And impossible to know the right one until afterwards. :/ Luckily the itching has pretty much cleared up now. Very relieved! 🙂 Just have to wait for the blood tests for the WBC count in a few weeks and then decide what to do next. xxx

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