Hydroxychloroquine

[JCZW]

Good morning Hope you are all keeping as well as you can be.

I'm having a difficult time at the moment.

I saw the rheumatologist last week and after 4 years of taking hydroxychloroquine they have decided to stop it for a while because they believe my body is reacting to it.

Has anybody had the same issues.

Best wishes to you all.

[RosieA]

Oh I am so sorry to hear that. Are they discussing alternatives? May I ask how your body is reacting to it, if you are comfortable to do so.

[JCZW in reply to RosieA]

Morning RosieA

They haven't given me an alternative at the moment.

They are just waiting to see what might happen. Very much trial and error I think.

My body seems to have swollen and the pains in my feet and legs have made it very difficult to walk.

A while ago they increased the hydroxychloroquine to 400mg a day which caused lots of issues so reverted back to 200mg.

They changed my diuretic and that didn't help.

Plus lots of x Ray's on my joints.

Currently waiting for a cardiogram to check my heart is working properly.

My body seems to be reacting towards lots of things at the moment certain foods that I've always eaten I can't anymore.

I'm also lactose and gluten free.

[RosieA in reply to JCZW]

Life with Lupus can be so tough and reacting to meds just makes it feel even worse. I do so hope that your cardiogram is clear. I was certainly shocked to find out I had pericarditis. Yes, I think we do become more sensitive to things. I can no longer eat any of the allium family - no garlic, onions etc and now no gluten. I bloat like a barrage balloon for days, bending is painful, bowels stop etc.

If it's of any consolation, I couldn't tolerate MTX, Leflunomide (SP) and now seem OKish on Azathioprine so hopefully they'll find the right drug for you. Exhausting isn't it. x

[JCZW in reply to RosieA]

I totally agree with you Lupus never stops giving.Every day is different but not always in a nice way.

I don't know how things will go it's only been a week and a half since I stopped the hydroxychloroquine and it can take a while to leave your body but I'm not adding to it.

Thank you for your response it really helps to communicate with people who know what it's like to l8ve with Lupus.

Big hugs to you 🤗