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.
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.
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.
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
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 🤗
Have they done a immunity test on you? To check why your body is reacting to so my drugs.
This is one thing I have always questioned myself and finally one consultant(chest) is doing it. I am having the test done next week.
I was discharged from rheumatology 2 weeks ago because I had stopped Hydroxychoroquine despite having blisters and sores in my mouth on that day she never checked my mouth and feeling very lethargic and sleepy all the time. Just want to wait and see what my 2 extremely spots on my leg is by dermatology is. Still waiting.
Hope you get alternative meds.
Thank you for your response. No they didn't mention an immunity test.
Maybe that's the next thing that they will do. If not I will mention it to them.
At the moment it's just waiting and see what happens. Which isn't really practical but I can understand why .
You know you mentioned about having dietary changes. The same with me . Since Lupus , I had to change my diet, I was ok until then able to take gluten food but not dairy. But since then not gluten . Worse with dairy. Antibiotics and other drugs plus multiple eye drops as well. And other food like kiwis, pineapple .
Most recently my daughter found out she is allergic to peanuts which she is normally not which is so weird and bizarre. So , we don't know if something in her immune system has triggered something. To cause that allergic reaction. As she had hives all over her body. She is so afraid to have peanut at the moment or be in contact with it.
I'm the same started not being able to tolerate dairy then gluten.I was reading that when you have Lupus your body reacts against things that you have tolerated before.
Hydroxychloroquine
Further update on Zentiva hydroxychloroquine
Hydroxychloroquine reduction
Hydroxychloroquine toxicity 
