Any one else have uctd and brain lesions or neurological involvement ?
I’m in bed today meant to be at the gym..
New hydro the make is different Called quinoric seems to make me feel sick might just be a coincidence anyone else.
I ache from head to toe mainly my feet are freezing and sore
Sorry for the constant moaning
Jade xxx
Hi Jade, you're not moaning at all.
I have uctd, worried that I'm beginning to have possible neurological symptoms, mentioned this to my rheumatologist a couple of weeks ago, he says to see my GP - sadly I haven't found the surgery to be helpful in the past.
As to Quinoric, this was the brand they started me on about four years ago. After a few days I developed a horrible rash that spread throughout my body and lasted for a few months after stopping the hydroxy.
Hopefully this won't happen to you! I think several of us here have experienced a bad reaction to Quinoric - there was a link showing that the fillers are different from other brands.
My GP was insistent that I was allergic to the hydroxy not the excipients so wouldn't let me try another brand. However, I've been taking another antimalarial, Mepacrine since then, with no side effects.
Hope you're feeling bit better soon & gentle hugs xx
Oh my dear we all moan. I make noises like I never thought a body could make and I think I hear my grandma coming out of my mouth. You have to speak it. It relieves the stress of it. I’m so sorry you’re hurting. I think at 2am every morning I know how that day is going to go. Time for self care.
Hi Jade
I have UCTD & a benign brain tumour! I take quinoric & did feel queasy at first, but it did seem to ease off after a few weeks, I'm now just left with wind!!!! I take mine last thing at night as found the insomnia wasn't quite so bad & most of my 'wind' problems happened throughout the night lol (poor hubby!!!!). I'm also being treated for Raynauds mainly in hands but feet do get bad too, they can look white/blue mainly at the fingertips and go red when blood starts returning as it were and can be painful. I took lots of pictures to show doctor & rheumy & now treated for that too!
Take things easy when your body tells you you need to, at first I could sleep for England , even known to sleep 23hrs in one go! Now the meds are sorted that's not so bad, but every now and then, if I do feel it's all too much i just submit to it and take a couple of days to rest up.
Big hugs to you xx
Wow...23 hours sleep in one go!! My record is 17 hours!! Xx
Make sure you take it Jade on a full stomach. Also what dosage you on?
Yes I agree you can get neurology problems. I’m currently waiting on my neurologist appointment x
Sorry to hear your poorly Jade..sometimes u just have to stay in bed..if it ain't happening..it ain't happening!! 🤗💐Gentle cyber hugs heading your way..from my bed to yours 🤗🤗🤗
Some people do have reactions to quinoric brand of hydroxy but I seem ok on it although I do tend to be a bit loose in the bowel department!! I prefer zentiva brand but it's potluck what I get from my pharmacy. I take my meds with goats milk because it did give me heartburn at first.
I know what u mean about feet freezing n sore..I tend to put mine on or very near a hot water bottle in bottom end of my bed..n wear socks if u can
A good moan helps too..get it off your chest talking to people who have some idea how your feeling is the best therapy xx
When I first got sick I had lesions in my brain and they told me that they had to keep a close eye on it not knowing anyting they wouldn't tell me anything all I said is I have to keep a close eye on it 2 years go by and mind you I'm in and out of the hospital because I develop this jerking movement every other week it happened for six years until I was diagnosed with mixed connective tissue disease I found out this year with that being said my hands and my feet get super cold and then they start changing colors so I'm going through that process I don't know about the lesions cuz nobody's ever told me anything more about that all that they just have to keep a close eye on it
Hi Buckley123 ,
It is not uncommon for the Quinoric brand of hydroxychloroquine to cause side effects in people with lupus. I published an updated article on our website yesterday which gives advice about this - lupusuk.org.uk/hydroxychlor...
I'm starting to have numb toes numb hands are fingers feels like I was in the snow and my hands got frostbite hurts so bad nowadays I'm just in a lot of pain and everything is just hitting me all at once I don't understand this mixed connective tissue disease it's affecting me so bad emotionally I just feel like breaking down trying to hide all my pain from my kids and grandkids trying to stay strong workout if it's really hard my shoulder hurts my arm underneath I don't understand this feel like everything's happening all at one time the first time yesterday I broke down and cried to my dad that is fighting his own disease my dad lives in California
Is tapering my steroids making me like this?
PLEASE HELP ME. DO ANYONE KNOW THESE MEDS?
My brain is not well. What is wrong with me?
