I feel like this medication is going to kill me. I have only been on it a month so far. Should I stick it out? Anyone have any experience with it?
stick with it! i have been on that for about 9 months the side effects are hardly there anymore. i get itching every now and then,a rare side effect and upset stomach i'm only on 200 mg but i was just told to go up to 400 now, because i am sensitive to medications my doc is very patient with my dosing...ask your doc if you can take half of what you are taking now for a while till you get used to it :)
Hi, I have been taking Plaquenil for 16 years now. I haven’t had any problems with it. I take 400 mg at night. I get really itchy at times. I wish you all the best with it, but I would stick it out for a bit longer.
oh boy karen i thought that the itchiness would eventually go away...BOOOOOO!!!
Definitely stick with the drug...when i first started taking it, it gave me some bad side affects not everyone gets them as that goes with any drug, so i pulled off it then my rheumo wanted me back on it but i was taking it through the day between other meds but someone i know told me to take it at night time which i did at 11pm before i went to bed and after all my other meds had been taken and my side affects all eased off.
I'm not on it now as i've had to move onto a stronger drug but plaquenil can take up to 6mths before benefit off the drug is showed and it's also not a steriod drug.
Love Terri xxx
Thanks : ) Any encouragement or advice helps so much, even if just mentally
I know some side affects can seem alot as they sent me into panic states where my hubby could'nt leave me but if you are taking it in the day try and adjust it to night time as your sleeping the side affects off. xxx
What_Doesn't_Kill_You said:
Thanks : ) Any encouragement or advice helps so much, even if just mentally
i took it for about a year but had to stop because it was affecting my vision. that vision issue is one you dont want to overlook
Janice is correct in what she's saying concerning the plaquenil you need to see a opthamologist regular to see how your eyes are coping and you should see one before you start taking the med to make sure they're ok otherwise.
janice said:
i took it for about a year but had to stop because it was affecting my vision. that vision issue is one you dont want to overlook
you know what was so funny though was that when I first started taking it it turned my dog green!!! lol. I have a black and tan Shepherd and for the first few weeks of med all her black fur looked green to me....ah... i love to tell that story
" dog turns green on plaquanil"
Well Janice i never experienced that mate.lol
What causes that then??
janice said:
you know what was so funny though was that when I first started taking it it turned my dog green!!! lol. I have a black and tan Shepherd and for the first few weeks of med all her black fur looked green to me....ah... i love to tell that story
" dog turns green on plaquanil"
Hello Ann,
To me plaquenil helped but when you start it, it's a drug where you've got to prepare yourself mentally to try and cope with side affects...not all people get it but how it affects you, i had it bad the same till i took it at night only because someone i knew was having the same issues and turned to taking it at night and found it alot better.
Ann A. said:
Years ago (like 30+) Plaquenil was my favorite prescription medication in the world. Discoid lupus was marching across my face leaving scars that would never go away. Plaquenil stopped it with just a little stomach upset. For the last few years I have only been taking it for part of the year. I start before spring so that it builds up enough for me to not have to live like a vampire. This time, I only lasted on the medication for about two months. The list of symptoms that I experienced read like the side effects shown on the drug insert. I was nauseated. I had no appetite. I grew weak. My head hurt. My ears rung. But the most worrying thing was a depression so heavy that I felt as though I had fell into a black hole. On the advice of my physician, I stopped the Plaquenil. This means that I will once again spend the summer months living like a vampire.
I hope that your Plaquenil experience is more like the one I had initially than my recent experience. I am sure that working with your physician, you will figure out what is best for you. I most certainly do not recommend stopping it cold turkey on your own.
Ann,
I really sympathize with you regarding the side effects are worse than what your actually taking them for but to be in remission and my fingers are 
for you i hope it really stays that way.
All my love to you Ann and your such a wonderful friend. Love Terri xxx
Ann A. said:
Dear Tez,
At this time I have no need to take Plaquenil or any other immunospressive medication. After 45 years of dealing with lupus I am having the kind of remission where the side effects of the drugs are worse than my lupus symptoms. No one ever told me to prepare my mind for that. Yet here I stand a woman who needed and took the medicine when she was 35 who does not need it at 65. I do not know how long this remission will last but it is here now. I am blssed and grategul.
Ann,
You sound tough and by what you love doing and fare play to you...well i've been like you had it since a child having issues but never knew as you know.
I'm off the plaquenil now as it stopped helping me and now going through side effects off the dapsone a much stronger drug and i'm hoping this works with full optimism.
Thankyou so much for your lovely kind words. xxx
Ann A. said:
Dear What Does Not Kill You,
I have been living with autoimmune issues since I was child. I am now 65 years old. I have been through many things that could have killed me but did not. Believe me when I tell you that I am one tough old bird and the strongest part of me is definitely my mind. So, yes you should stick it out. You should stick it out through Plaquenil and beyond Plaquenil. When I needed the Plaquenil, I took it. Right now, I do not need it and therefore I am not taking it. To the best of your ability look toward the future with optimism and plan a long game.
My Doctor just put me on this today... I am hoping I don't get the side effect, I really need some relief..
Hello My dear friend,
Ann the plaquenil worked great for over a year then everything came back more at me...so i've been moved to a drug that's hardly used but side affects can be severe.
Thank you for the good wishes on doing well on the new med but apparentley it takes 3-4mths before you see any reaction, sooner would be better.lol
Love to you also Ann....Love Terri xxx
Ann A. said:
Dear Tez,
I am so sorry that when you left Plaquenil it meant a move to a stronger drug while when I left Plaquenil it meant a move to no lupus drugs. Our different post Plaquenil paths allow the young to see just how varied this lupus experience can be. I can only hope that you do well on your new medication and the young lady who started this thread does well on the Plaquenil and then needs no additional medication. It is possible. I have a strong tendency toward optimism while believing that it is all in the hands of a higher power.
Love and blessings to you all.
Hello Bethany,
I hope your doing ok....some people do get side affects some don't but if you can stick with it and cope with any side affects it's a marvellous drug and not a steriod at all plus it can make you lose weight it did with me.
Try and take the medication at night an hour before you go to bed and it actually helps you by sleeping any side affects off.
I wish you the very best of Luck and ((Hugs to you Bethany)) xxx
Bethany Wright said:
My Doctor just put me on this today... I am hoping I don't get the side effect, I really need some relief..