What will happen if I don’t Take Plaquenil for my systemic scleroderma?

[Maryie]

I quit taking my medication because I hate the thought of taking anti-malaria pills. I felt so nauseous. And I’m scared of what it could do to my vision. Any observations or experience with this?

[overnighthearingloss]

I don't think anybody can give you a safe answer to that. Everyone's condition is at an appropriate stage and what may happen with one person may be different with another. You will get loads of people saying to discuss with your medical team. They invariably tell you to continue the drugs.

It really is a bit of a step into the unknown to stop taking a medication as There is no detailed evidence to be found anywhere.

What I would say is that if you are thinking of stopping a med, do as much as you can to ensure your body can handle it. You have to fill your body with nutrition.

If you don't do that and stop taking meds any reactions will likely be greater.

You have to have got a bit used to hearing your bodies reaction. This can take a while to get in touch with.

So if you are intent on stopping something, do as much reading as you can to educate yourself and really move yourself in a direction where you are ready to take much more care of yourself

[Maryie in reply to overnighthearingloss]

Thank you for the response. What you said about nutrition I totally agree with as well. I’m also removing my breast implants because I have heard they can also cause issues.

[overnighthearingloss in reply to Maryie]

I think removing the implants is probably a good move.

[MissusTee]

I have had no problems with it, and I make sure that I have regular eye tests. Once when I forgot to take it for a few days, my joint pain was awful.

[Meg42]

I have been on Plaquenil for 34 yrs and have had periods of time where I've discontinued Plaquenil for the same worries that you've stated, but I then needed hydrotherapy, massage and physio twice weekly, plus lots of over - the - counter meds (which also have side effects). So, I'm still on Plaquenil, and go for regular eye tests and monthly bloodwork (I'm on 8 different meds) and everything is fine. I agree with the comment about nutrition being important, regardless of which meds you are on. Proactively minimize the impact of this illness by minimizing stress, incorporate mindfulness meditation, do more of the things you enjoy, keep fit and active

[Cookie81]

I tried Plaquenil years ago but had to stop because I had a reaction to it. I have since found out that it could have been the particular brand of Plaquenil that was making me feel so ill. I might go back to my rheumy and discuss trying again.

As Plaquenil is the first drug that Drs will try as part of a treatment plan, it has less risks compared to other DMARDs. All medication has risks.

Have you tried a different brand of Plaquenil?

[Maryie]

I removed my breast implants a year and 3 months ago and all my blood work improved and they removed my diagnosis.

[Ncoff]

I used it at Xmas and was ok fir few wks in fact felt better with joint pain but then it hit me and made me feel awful so stopped taking it. Dr said may try again when Covid has decreased as needs to see me in person instead of over the phone

[JessicaEccles6]

I've taken plaquenil since I was first diagnosed ten years ago and it's about the only drug I've had no reaction to or bad side effects. It can make you ahem a little windy 😄