GCA disease

Posted , 6 users are following.

I have the giant cell in the scalp, diagnosed in June. I went from 60 mg to 25 mg with a reduction of one half mg every 14 days. My rheumatology never gave me any info of what to expect with side effects. I have shakes inside and fast beating heart, usually by 3 pm it subsides but this morning I felt like I was having an earthquake inside my body, weak n shaky an I had to stay in bed, at 6 pm I started to feel better. Does anyone else have this problem. My doctor is no help, he just wants to send me for tests at ER, he was thinking a stroke but the tests come back negative n I cant afford ER every time I have this condition which  is every day at different times. Please let me know if anyone else is experience this

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  • Posted

    When I asked my rheumie about side effects of pred, he said there were too many to mention! 
    • Posted

      If you ever listen to some drug advertised on TV and really listen when

      they start talking about side effects (sometimes even death, they say) you'd see that all drugs have a

      long list of problems caused by that drug....when I worked in a pharmacy

      years ago one drug rep told me that if one person complains

      about some symptom they have to list it.   Look up side effects

      on anything and you'll probably be stunned.

    • Posted

      I have worked with the pharmaceutical industry for the last thirty five years on the marketing side, side effects are not really mentioned in that department!! 
    • Posted

      I have no idea where this rep got his info...I didn't see any reason

      for him to lie about it.   That  happened many years ago and

      it may all be different now.    Why would a drug company list

      all those awful side effects if they didn't have to?  Are they

      just covering their backsides against law suits? 

    • Posted

      Pred has been around since 1949 - so the side effects are all listed and well known and nobody gets all 83  - they are classed as common, rare, very rare and extremely rare.    The most common ones are listed on the paper that comes with  your prescription  - read and keep.

      All Chemists paraticipate in the 'Yellow Card Scheme' so if you have a side effect that is not listed, you fill in the card and then it is dealt with.

      The Yellow Card Scheme is the UK system for collecting information on suspected adverse drug reactions (ADRs) to medicines. The scheme allows the safety of the medicines and vaccines that are on the market to be monitored.

      The drug rep who told you about 1 person and listing - did not know what he was talking about  - bet he was a Sale Rep.

    • Posted

      They have to list side effects and as you say they are always worried about law suits. When you spend over two billion dollars to get a drug on the market you are ultra careful. 
    • Posted

      That isn't strictly true - during the clincial trials they have to note everything the trialists complain of but that then is made more sensible in the later stages - some of the things patients ascribe to a drug can be things that are nothing to do with it. That's why I often say that things patients ask about could be the pred or could be the PMR - the hot sweatd for example. If only one out of thousands of trialist mention something it won't be added to the list without good reason.

      You'll find the lists in the US are often longer than those elsewhere - for the CMA reason! But a side-effect mentioned by one person will come under the extremely rare heading. The yellow card reporting system in the UK and the FDA reporting system in the US is to get the rarer side effects which often only appear once millions are on the medication - and to work out the true rates which you can't get from the small numbers in clinical trials.

      As lodger says - sales reps don't know too much about how the other stuff works. Regulatory stuff is very specialised and expensive!

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