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floramac floramac


I have had pmr for 3 years, currently on 3mg pred per day. Just about to start the reduction to 2.5 . This week been feeling awful, nausea very dizzy bad ears etc. Doc has diagnosed labrynthitis and just started the meds. The constant nausea is the worst. Anyone any experience?

14 Replies

  • Tinapoly1 floramac

    I am not familiar with labrynthitis but I know when I had nausea in rough seas on a cruise they told me to try carbonated water it helped me so much. I hope you feel better soon.   Did you gain around 30 lbs.from the steroids because I don't eat much but am now borderline diabetic and look awful Cushing's Syndrome I am ashamed to be seen ,even by family & friends ,since I am unrecognizable. I am soon to be 64 and was small my entire life. I realize it is from the prednisone but don't understand why the weight gain ,after 6 months of steroids, is not leveling out. Instead I am getting larger each month. 

    • floramac Tinapoly1

      Yes, I drink lots of soda water etc, helps a little.

      I have been fairly lucky, did not need to stay on high amounts of pred and did not put on weight. I did however give up sugar about the same time.

    • EileenH Tinapoly1

      Try cutting both carbs and salt - it has helped many of us. Both lead to fluid retention - just a couple of meals out and I retain at least a couple of pounds of fluid from the salt they use! And pred changes how we metabolise carbs and it leads to weight gain. Some is unavoidable for some people though - but you can at least help the situation.

  • Danrower floramac

    Interesting potential formula

    3 tiny bones in the ear


    cochlea in close proximity

    As a data point, I have had several bouts of vertigo,  not coincident with PMR/RS3PE, but all of these started in my mid 50's.

    I wonder if there is a correlation between autoimmune disorders and this spontaneous vertigo? 

    mine would last 4-6 hours and spontaneously remiss. Have not had an episode while on pred. ever.

    Best of luck. And hi to all.


  • EileenH floramac

    Is the vertigo constant or just when you move your head?

    This is a good explanation of the difference between labyrinthitis and benigh paroxsymal postural vertigo which is why I ask. 

    Sorry - nothing to share about the experience as it is something I have never had thank goodness. Hope you feel better soon - I can't bear feeling nauseated either.

    • floramac EileenH

      I was actually diagnosed with BPV a few years ago. The dizziness is not constant and I get relief by lying down staying still. They did the Epley manouvre on me and gave me excercises. I continued to have problems with balance (some due to a detached retina that they could not reattach perfectly which left me with slight double vision ) but it was bearable. This is different and the nausea is horrible. I am praying I don't get a flare up in my PMR, it has been going well! The meds don't seem to be stopping the nausea yet.

  • karenjaninaz floramac

    I had  labyrinthitis way before pmr. What really helped was 1 gm of ginger root in capsules 3-4 times a day. It was rather magical and didn't make me dopey. I was a nurse anesthetist at the time and couldn't work on the Rx meds because they made me dopey.

    • floramac karenjaninaz

      Yes, I see what you mean about the meds. The Proclorperazine is making me feel dopey but not stopping the nausea - yet, only taken 3 so far? Think I may find some ginger, did you make it yourself?

    • karenjaninaz floramac

      I was able to buy ginger capsules in the supermarket or health food store. What's good about the capsules is you know exactly the dose. In my case the doctor said it was a virus which lodged itself in the inner ear balance center(labrynth). Ginger is an old remedy according to a neurosurgeon I discussed this with. In a pinch you can drink real ginger ale if it has ginger in it or ginger candy.

      if you do not feel well don't drop pred and consider going down a quarter mgm. I can only group a quarter mgm and I am at 9.5 after a flare last Nov at 8.5mg. 

  • Reeceregan floramac

    I had Labrynthitis a few years ago now( many years before my now PMR/GCA)..what a shocker. Head constantly spinning even when laying down, nausea, headache ..oh boy. Called an ambulance and ended up in emergency on a drip. Not sure what was in  the drip, although I have a feeling that I was given antibiotics as well as fluids for the vomiting, but was released many hours later and never had it again. I believe it’s a bacterial infection in the ear canal somewhere and can travel to the brain so don’t muck around with it. Glad you’re on the meds, you’ll get past it in no time. 

  • JanetGarrett floramac


    Unfortunately I can definitely empathize with you at this exact moment. I was diagnosed with vertigo and tinnitus three years ago as a result of tapering Lyrica. It is not the type that you adjust with the crystals. Just out of the blue 3 days ago, it came to light and has gotten progressively worse with my tinnitus, floaters in my eyes and today God awful nausea and headache. I have had a low-lying but bothersome headache for a little over a week. You never know what to attribute anything to, at least I don't. I was diagnosed with PMR in the fall of 2017. I am currently on 13 mg prednisone and following my Endocrinologist check up today am supposed to be at the next taper to 12.5 or 12 mg (my strategy, not Dr.'s). Right now I feel like I am going to puke so I am not sure whether to proceed or not. My flares usually lasts many weeks at a time. Sitting in the doctor's office today, the new geometric pattern wallpaper along with the blinds were awful. I had canceled several previous day's appointments but had to drive to this today. The ride-up to the second floor on the elevator felt like I was on a merry. and I have used Ginger capsules in the past and probably need to go and I have used Ginger capsules in the past and probably need to go dig them out of cabinet. I did find a boss of ginger ale stuck in the back of the closet which I ambivalently opened. I have been doing the eto diet for my prednisone for cardio health and have coincidentally lost 14 lb in the last six to seven weeks. So I shot that today on this glass of ginger ale. I know that weather changes, stress, allergies all of which I have precipitate of flare. My doctor said both my ears look red but they always feel terrible and never look the way they feel but today they gave me an antibiotic hoping that maybe if it helps my ears it might help the rest of it. I can only hope . Life can really come to a standstill when this flares up . Hope you feel better soon. It is God awful.


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