Hello, I'm new to this forum/community and have joined to see if anyone can be more knowledgable than my doctors about the Plaquenil/Zentiva change!!??
Just for a bit of background I was diagnosed with lupus about 6 years ago now, after a spell of being incredibly unwell. My symptoms started off as simply feeling slightly unwell/tired and rundown but slowly over the space of about 2 months got increasingly worse to the point where I had no energy left what so ever, my arms and legs felt like lead weights were tied to them, like doing the simplest of tasks such as opening a door or holding a knife and fork became increasingly harder and harder, walking up the stairs was like a full work out at the gym. This was so so out of character for me as I'm a really active and social person.
I then developed symptoms of really severe vertigo, I felt permanently travel sick, to the point where I could no longer simply walk around without having constant dizzy spells. I was, at the time, diagnosed with ME and pretty much told there was nothing anyone could do, I dropped out of uni and became incredibly depressed, and more and more unwell to the point where I had to move back to my parents and my mum became my career. I wasn't even able to shower, or feed myself the dizziness and sickness became so severe I could barely make it through each day, and would be completely lost in my family home. If the lights were out I was so dizzy I couldn't figure out how to get to the bathroom from my bedroom without calling for help.
It was my mum who spent hours researching on the internet, traipsing me around doctor after doctor and basically never giving in that finally resulted in me being diagnosed with Lupus. She found an amazing rheumatologist, who did the ANA test, along with many other things and said that he thought lupus was affecting my brain.
He put me on Plaquenil hydroxychloroquine, and within 4 months I was feeling about 50% better, within 12 months my life was pretty much back to normal, I went back to uni, finished my degree, found a job I love, got my own place and have been living happily, loving life with only mild symptoms ever since. Twice over the past 5 years I've tried Quinoric, and both times my symptoms returned within about 2-3 weeks of taking this, so I went back onto Plaquenil and would be back to normal within a few weeks.
2 months ago I was told I couldn't get any more Plaquenil, and that it had been replaced by Zentiva, I was terrified when I found this out, but was reassured that it was the exact same drug, just re-branded, so I didn't think much of it. i've been taking it for 2 months now, and for the last month have really been struggling with my symptoms which are all returning. They are not as intense as they were the first time round, I'm just about managing to carry on, but for the last week in particular its been very difficult. The tiredness and heavy limbs feeling is back, as is the constant nausea. I went to see my rheumatologist today, and I thought he would be able to reassure me that it isn't the tablets and is just a mild flare up that will chill out in time (I do sometimes still get them - but they dont usually last longer than a few weeks) but he hadnt even heard anything about the change and couldn't answer any of my questions, instead he just took my bloods and said he'd be in touch if anything was wrong and sent me on my way!
Has anyone else had any difficulty with the Plaquenil/Zentiva change, or does anyone know if the formula is EXACTLY the same??? Could there be a slight variation in it that for some reason means it isn't being used by my body as effectively as Plaquenil?? or am I just being paranoid and just need to sit out the flare up without worrying?? It does seem unnaturally bad and I'm starting to feel very worried about it as life really isn't worth living when its as bad as it was! :/
Sarah - sorry this got super long!