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Endless Shaking and GCA

Posted , 12 users are following.

LisaCACO
LisaCACO

Fatigue and shaking. For the past 48 hours, all my body has done is shake from head to toe. Wondering what this is about. Is this a flare (I've been at 40 mg for 10 days now I think), or is this just my body having fun for whatever reason? I've had shaking before (I'm also taking gabapentin for peripheral neuropathy) but nothing like this in a long time. 

4 likes, 14 replies

14 Replies

  • Oregonjohn-UK
    Oregonjohn-UK LisaCACO

    Posted

    There will be others with experience of symptoms as yours with GCA - I can't help as I have PMR and have never had your symptoms.

    Best of luck

  • Gymjen
    Gymjen LisaCACO

    Posted

    Gabapentin was the worst drug ever for ME.  I was prescribed this for muscle pain before I was diagnosed with PMR . I did not know if I was coming or going ,had bit of shaking which subsided as morning went on.my husband wondered if I had start of dementia. After about 5 days ,I rang myGP,he stopped them immediately. I notice now on my medical notes it states that I am allergic to  Gabapentin. This is MY experience ,may  give you food for thought .Jenny

     

    • LisaCACO
      LisaCACO Gymjen

      Posted

      I've been taking it since january and while I shake on occasion, this nonstop shaking is a new one. Apparently gapapentin is a drug you need to get used to, so we started with one capsule, then slowly worked up to the dose I needed.  It is a difficult drug for the body.
  • MrsO-UK_Surrey
    MrsO-UK_Surrey LisaCACO

    Posted

    Lisa, steroids can have this effect on some people, particularly at the high doses.  Many a piece of china came to grief on our kitchen floor tiles when I was on the high doses.  Sometimes my body wouldn't actually visibly shake but I would feel it trembling from the inside, if that makes sense.  I have never taken Gabapentin but, shaking is listed as a common side effect.  So, unfortunately, it sounds as though you are facing a double whammy of possible causes.  Worth mentioning to your GP if it continues.
  • tina-uk_cwall
    tina-uk_cwall LisaCACO

    Posted

    Hi lisa, sorry to hear you're not feeling too well. I was prescribed gabapantin pre PMR diagnosis. It did nothing for me and I suffered no side effects.  I Agree with Mrs O if this continues perhaps a visit to the GP might be prudent. I do hope you kick this latest development into touch very soon. Regards, christina 
    • LisaCACO
      LisaCACO tina-uk_cwall

      Posted

      You and MrsO may be right. I may drop her an email and ask her what she thinks. pretty exhausting all this constant shaking. Hard to type too, lol. many mistakes, many deletes. luckily my husband has the day off so he took the kid to school and he can pick her up.

      I woke up this morning at 3am shaking...freaked the cat out since he was trying to sleep next to me. I can stop it if I hold my breath or sometimes if I clench my muscles, but it quicky resumes. Funny because I just had my blood tests and they were lovely (of course we know that doesn't prove anything but it makes my rheum doc happy :D). And it's making it pretty difficult to do my cross stitch-I'm told by my family that it's pretty amusing to watch me try to get that needle in that tiny 40 count linen hole each time).

      I'll give things another 12 hours or so and see what happens. if I'm still shaking at the same rate I'll ask her what's up. thanks ladies.

  • pat73046
    pat73046 LisaCACO

    Posted

    Lisa, I am so sorry to hear of your symptoms. I remember being on 40 mg and shaking where knitting was difficult. Even now on 10 mg I do this no rhyme or reason . the only thing that I think it could be is lowered potassium . I take supplements and try to eat a banana a day. Pat
    • LisaCACO
      LisaCACO pat73046

      Posted

      I'll tally up my potassium and see. I'm on a mostly liquid diet with my smoothies and I eat a pretty pile of bananas in them (usually have 3 per smoothie or so) but I'll have to check what I ate yesterday. I'm trying to shift to real food on some meals so sometimes lunch is a smoothie, sometimes it's a few bites of real food. Dinner is almost always real food. This heartburn thing is really bizarre. I never know if I feel like I can try real food or not sad. 

      anyway I'll go back and crunch the numbers. it may be that I need to supplement with a banana or two now that i'm shifting to real foods. Pre GCA I used to be on a slow release potassium supplement because of the topamax I take for migraines, but that all corrected itself. Things may have gone wonky again. Thanks for the reminder.

  • charlie44644
    charlie44644 LisaCACO

    Posted

    Lisa,

    You should contact the doctor who put you on gabapentin. Shaking is a common side effect of the medicine and apparently can go on for days.

    Charlie44644

  • jean05221
    jean05221 LisaCACO

    Posted

    Hello Lisa

    I have GCA and have been on Pred 60mgs since July 2014.

    A few years ago for a previous attack of GCA I shook on 40mgs. I couldn't write legibly or hit the right keys on my lap top.

    This time I shake uncontrollably if I take 60mg in one dose. My shaking is considerably reduced if I split the dose 50mgs early morning and the other 10mgs about mid-day.

    Please do speak to your GP as your Gab may also be a contributing factor.

    All the very best to you.

  • pat38625
    pat38625 LisaCACO

    Posted

    Hi Lisa, sorry to hear you are not feeling the best.  I started on 20mg for PMR and I remember my hands shaking badly even on a 15mg dose of pred.  I am now on 12.5mg and the tremors are not so prevalent now.  With taking pred and gabapentin may/or may not be the problem, but do seek medical advice.  Hope you're feeling better soon.  Pat
  • jan21306
    jan21306 LisaCACO

    Posted

    Hi Lisa.   I started off with tingling and pins and needles on pred.  It then got worse and I started trembling, but not all the time.  I was down to 7 mg and it wasnt getting any better, so am now seeing a neurologist and have had nerve conduction tests, blood tests to rule out anything else.  Havent had results yet.  Have just had to put my pred up to 10 mg and it has got slightly worse, so it is rather pointing to side effect of pred, perhaps also with a beta blocker i am on which also has similar side effects.  I find a heat pad in bed helps a lot with getting me to sleep, also I use it sometimes while sitting in my chair, otherwise I cannot relax with the trembling.   I will let you know if my neurologist comes up with anything else.   Best wishes 
  • EileenH
    EileenH LisaCACO

    Posted

    I do hope you have been in touch with a doctor somewhere Lisa - anything as severe as this must be handed to medics to call the tune. 
  • LisaCACO
    LisaCACO

    Posted

    I totally hate going to see the doc, esp on a friday/weekend. more expensive and a longer wait. So I did a wee bit of research and I think I solved the problem: electrolyte imbalance. So I took a packet of my electrolyte solution that I have for when I work out (electrolytes, no sugar or anything else).  I also took my prednisone a couple of hours early. The combination of the two (or just a coincidence) reduced the shaking significantly. As many mentioned, I'm sure the gabapentin isn't helping. while my body has adjusted to it somewhat, I still shake on this lovely drug. I can't say bad things about it, though. it has helped significantly with the neuropathy in my head and in my escophagus, neuropathy I did not have until after taking prednisone.

    Clearly my adrenal glands are just shot which is normal on the high doses of pred that I'm taking. I think the extra stress of the ankle injury  (tendonitis) plus whatever I was doing this week (getting my kid off to camp, then dealing with her disappointment as it was rained out each day), was just a wee bit too much. I'll need to be more careful in the future. 

    I'll let my doc know about all this-she may want to do some blood tests. of course every time they stab me I'm at risk for superficial blood clots.  *sigh* Before all this I saw my doc about 2x a year and emailed her 2x a year. This shift to "patient" is rather an uncomfortable one, esp when most of the "answers" from the doctors are "I don't know". 

    right now I have very mild occasional shaking, which is normal for me. I just woke up and I'm waiting for the pred to kick in. I've also altered my pred dosing a bit. before I was taking 25mg  and then 15mg, but I'm going to try 30 and 10 to see if that does anything. Maybe my body needs just a wee bit more when I wake up. I love the guesswork involved :D. 

    Thanks to everyone for their input. All of it helps me put the pieces of the puzzle together.

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