Please could you help me? My mother was put onto 60mg Cymgen in South Africa (Cymbalta) in 2015 for peripheral neuropathy (no diabetes at that stage) and anxiety. She was on Lyrica and another medication for anxiety but the Lyrica had made her dizzy from day 1 and Cymgen was suggested as the perfect solution to peripheral pain and as an anti anxiety medication in one.
She found the 60mg did not take the pain in her feet away and she was then put up to 90mg Cymgen. This was just before going on holiday with us to the UK (which we now refer to as the holiday from hell). My mother started to have these profuse sweating episodes during the day and at night (these started days after she started on 60mg). On her holiday she blacked out twice with no warning signs at all. She then started with a very sore throat and nose with symptoms which presented as a tonsillitis - something my mother had never suffered from, and the doctor was not convinced and very confused by her symptoms. After three weeks all of her symptoms peaked as she started with unbearable pain in her head. My mother never complains about anything and here was this 85 year old woman literally clinging onto her head, in tears, repeating 'The pain, the pain, the pain'. We had never experienced anything like this ever and it was shocking to see. Panado eased the pain for a couple of hours only and then it would start again. Long story short, she ended up in hospital with a very high CRP and ESR count. None of the top specialists (after two hospitalisations in emergency) could work out what was wrong with her at all. She was eventually put onto prednisone and that dropped the inflammation which no one could explain. It was very odd and my sister and I were convinced that it was just too much of a co-incidence that she had started this new drug and then fallen so inexplicably ill.
Three years later and a very long exhausting road of weening off steroids with a re-ocurrance of the 'mystery' condition - this time headaches and random pain anywhere in the body off and on, and periods of complete confusion, episodes in the last year where she would lose her power of speech and ability to walk or mobilize and then become completely unconscious for around an hour every time. Doctors are totally confused as they have never seen this before. Tests galore, all vitals perfect when this happens, no dementia, no heart problems absolutely no reason for any of these episodes of confusion, random pain, and becoming unconscious. Well we have all now pretty much concluded the one reason clearly is Cymgen and we are now starting to ween her off this nightmare drug from HELL!
Mum's Cymgen here in South Africa come in capsules (blue and green) and have 569 tiny white balls (of poison) in each capsule. After reading all your messages etc, I did this calculation but have no idea if this is accurate or the right way of calculating this:
So my thinking was:-
60mg = 569 balls
Divide 569 by 60mg = 9.48 balls
1mg must = 9.48 balls
On this calculation I have been taking 5% of 569 balls - which = 3mg out every 2 weeks
1mg = 9.48 balls therefore
3mg that = 28.44 balls.
So every 2 weeks I take out another 3mg
Week 1 & 2: Taken out 28.44 balls (3mg) (rounded down to 28 balls) thereby reducing each 60mg capsule to 57mg per capsule
Week 3 & 4: Taken out 56.88 balls (6mg) (rounded up to 57 balls) thereby reducing each 60mg capsule to 54mg per capsule
Week 5 & 6: Taken out 85.32 balls (9mg) (rounded down to 85 balls) thereby reducing each 60mg capsule to 51mg per capsule.
and so on.
We are now down to 48mg per capsule.
There is definitely a reaction to each drop even at 3mg per 2 weeks after 2/3 days from the new drop. This takes form of at least one whole day sleeping. Jumping legs. A lot of anxiety. Bad dreams. Of course a lot of these symptoms have been ongoing over the years since she has been on this drug anyway. But after a couple of days she stabilises.
Are my calculations right? Am I doing the right thing? Our doctor is on board but as ignorant as we are as to how to do this properly. He advises to go as slowly as possible according to her reactions.
Should I just keep going?
My concern is that the balls themselves may not work in a way which I am wildly assuming i.e. that 1mg is made up of 28.44 in potency. I am hoping they put the same amount of ingredients in each ball in which case we should be okay.
I HATE seeing my most beautiful mother in such an awful state. What a disgusting criminal thing to do to people. What a way to spend the ending years of her life when she would otherwise be in a much better state. So sad. So awful.
Thank you for this site!!!!!!!!!