Fed up! : Hi all I've recently started... - Hughes Syndrome A...

Hughes Syndrome APS Forum

10,336 members10,533 posts

Fed up!

Gilliansimba profile image
6 Replies

Hi all I've recently started taking hydro/plaquinel I really think this medication is making everything worse having so many systems needle pain is much worse than normal in my neck real sore shoulders &legs burning & silly pains top off my chest feels like it's in my veins it really scaring me,I have made an appointment with my gp Tommorow but not sure if they'll do anything. 😢Has anyone else found this medication has made symptoms worse?

Written by
Gilliansimba profile image
Gilliansimba
To view profiles and participate in discussions please or .
6 Replies
Wittycjt profile image
Wittycjt

Could it possibly be neuromyotoxicity? Ask your doc🤔What other meds are you on?

I've been totally fine with hydroxychloroquine. Try to relax, sometimes anxiety can make us feel this way xx

MaryF profile image
MaryFAdministrator

Hi for myself it made me very ill, and I had a Stevens Johnson type episode, but for my daughter it works very well. Please make sure alongside any blood tests done to see what is going on, that vitamin D, B12, iron and your Thyroid is looked at to make sure nothing else is adding to this. Also early days perhaps? It can take a while to work effectively. Maybe a check also with the consultant who prescribed it? MaryF

Gilliansimba profile image
Gilliansimba in reply to MaryF

Thankyou Mary f I went to see gp this afternoon he reckons I have a chest infection but i thought he'd do an ecg I told him the pains in top of my chest feel like it's in my veins, told me to go a&e if they get any worse I don't want to go to hospital that's why I went to the doctors my throat it rather sore.at least I have a blood form to have the blood tests you recommended Thankyou for your advice.😊

WendyWoo50 profile image
WendyWoo50

Of course u must never ignore any new symptoms. But when I was put on it, I was told that it takes about 12 weeks to build up and start to work. That being the case unless u are having an allergic reaction then it's unlikely ur symptoms are caused by it.

It does tend to cause upset tummies though. But that settles down by the three months and is worth bearing. I felt a lot better while on it,

It is rare but it has been known to affect the QT wave of the heart ❤️ if u faint or gave funny turns u must be checked out for LongQT. On an ECG the QTc should be under 440 (for a woman) because it's quite a rare condition few know about it but it can be dangerous.

I hope this helps 💋

Gilliansimba profile image
Gilliansimba in reply to WendyWoo50

Thankyou very interesting hope your ok😊

You may also like...

Fed Up with my primary

that wen nurse tuk the needle out and she knew she was in my vein, she pulled needle out and in...

Fed up

positive . My foot feels stuck when I move or walk really painful. My ankles have what I think is...

Fed up

kidney. I had a chest ct which was clear. Now I am in hospital again after chest pain to find I...

Fed up

me reaching for the specs cleaner. I could really, really do without this, especially as it mucks...

Fed up with being in pain

moments. Since then I have been getting worse. Pains down my arms, legs and ankles also my ankles...