Do other vasculitis people get nausea, not from the meds?

I've been ill since 1994. One of the earliest symptoms I got was recurring nausea, which couldn't be put down to morning sickness or anything I'd eaten or a bug. It always tended to be worse when I was weaker and more run down. Alongside that I developed symptoms that led to an initial diagnosis of ME. But the symptoms expanded and evolved over time to be more like MS. The nausea continued. Once I was so bad I'd been nauseous and sick for 12 hours, for no known cause, and had to get an injection from an out-of-hours GP to stop it. I remember the drive up to the cottage hospital, me hanging on to a bowl in the car in case the worst happened! The GP (from my practice) realised how serious my illness was, and referred me to a consultant. That led, eventually, to a cerebral vasculitis diagnosis in 1997.

Now of course I get nausea from the cytotoxic meds. When I started on Azathioprine in 1998 I got day-long nausea, every single day. I would take my pills about 7.30am and the nausea kicked in about 9am, and lasted typically until 5pm. I tried very hard not to be sick, often sleeping all day to get through it, if I could manage to fall asleep quickly enough. This went on for years. I told the doctors; they didn't appreciate how bad it was. Only recently did I get anti-nausea pills, as more cytotoxic drugs were added to my cocktail, and I at one point refused to take them cos of the nausea. I'm now on permanent anti-nausea pills twice daily, and am much happier on the pills as a result. I do still get nausea from the cytotoxic meds, especially on a Friday night when Methotrexate is combined with the other 3, but it's much more bearable.

But I'm curious if other vasculitis patients get nausea from the illness, not from the meds. Mine happens when I'm more run down. I was really weak, for example, in late October 2011 and much of November. I sleep for a vast amount of time each day now (up to 17 hours, due to the brain damage). And when I'd wake up in October/November I was often very nauseous, even before I'd taken my nausea-inducing pills, and would thus struggle to take my meals, even soup. Luckily I've been stronger in December, and have only had this type of nausea occasionally this month.

Does this ring bells with anyone else? Again I'm asking about nausea from the illness, not from the meds we take to treat it.

7 Replies

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  • Hi,

    Yes, I get terrible nausea at times and also feel very weak. Sometimes when the nausea strikes I also get terrible sweating. It strikes suddenly at it looks as if I have just got out the shower, as I can be sweating from every pore. I do not know if it is my illnesses or the Meds. that I am on that is the cause.

    I have been given Metoclopramide to help with the nausea and it does. You should seek help from your GP &/or your consultant.

    To me, nausea is one of the worse feelings that you can have. I wish you good luck and hope that they can help you with the nausea very soon.

  • Thanks for the reply. I've been on Metoclopramide twice daily for about 5 years now. It's wonderful!

    I'm lucky that the nausea from my illness is only rare now, when I'm at my weakest, as in October/November. Generally I'm more likely to get nausea from the meds. And even then Metoclopramide usually keeps it under control.

  • hi there,

    i have very bad nausea all the time and therefore use a sringe driver of cyclizine (anti-emetic medication) everyday to combat this. during hospital admissions if i hve an IV line (which is rare these days) i ave 3 doses IV per day of cyclizine if not the use a sub-cutaneous port and do 3 bolus injections each day through that... its much better via syringe driver as there re no peaks and troughs in nausea coverage etc with bolus jabs you feel ok for a few hours then rotten the last few before the next dose... ccassionally i need some top up meds with ondansatron but i find cyclizine works well for me, do make sure if you do have it given IV or sub-cut jab the person giving it does so sowly as it burns veins, sub cut tissues etc bit like a bee sting..... just to fore warn you.... hope that helps.... xxx

  • Thanks for that reply and the info. I'm glad you have the cyclizine to help.

  • Hi, Yes I get nausea from my illness, its not there all the time but can sometimes come on in great waves and I just lie down if Im at home until it passes, if im at work I wander away from my desk in the direction of the toilets (just in case) until it subsides, otherwise im too tempted to just put my head down on the desk :) I have leukocytoclastic vasculitis

  • Thanks for the reply. Oh yes the waves, I recognise that description. That's how I describe the nausea to others when it hits me. It really is like a wave washing over me, growing small in one part, and then sweeping over the rest of me. Very unpleasant.

    I've been getting it a bit over Christmas, which is not much fun when I wanted to enjoy my Christmas dinner, and then my Christmas pudding the next day! But otherwise coping ok.

  • Hi there, I haven't been diagnosed but I am getting lots of bells ringing reading all this. I feel nauseous a lot...have these occasional skin rashes that are like red raw blemish which then goes flaky, have a lot of muscle weakness, fatigue, cognitive problems, sensitivity to heat, lots of foods and stomach problems. I have now had enough and am really trying to communicate with the medical profession about it..It feels really hard but I am starting to see all the different specialists, such as allergy, dermatology etc....I also have a continual ear and sinus problem now too and I am convinced all these things are linked...for example, I get the skin marks when I am feeling tired and weak and my face flushes on my nose and cheeks. Please can people tell me their experience of getting diagnosed and which specialist they got diagnosed from. I was told I had ME back in 2000 but have always felt that was a wrong diagnosis.

    Thanks to anyone who can help.

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