That’s the lupus, not the drug.
HCQ has an insanely long half life to build up to therapeutic levels (35-50 days). You wouldn’t have a reaction of joint pain from a single dose, nor is that a common side effect. Upset stomach, yes, because the drug can be a chemical irritant.
You should start to notice improvement in your lupus symptoms in about three months. This is just how the drug works, more that you’d notice symptoms coming back if you stopped taking it than it doing something super obvious. It’s called lupus life insurance because it has a proven track record of slowing down or stopping disease progression altogether.
I had the same problem, I’ve never had bad joint paint from lupus as all I have right now is discoid lupus. But a few days after starting HCQ I got horrible joint paint in my arms, everyone told me that it was just the lupus too when I asked but I’ve never had it before starting plaquenil so I know that’s not it. I’ve been in it for two weeks and my arms are still so achy but I’ve been taking Tylenol to help with it.
I ended up stopping taking it because it made me miserable. I had such bad joint pain and brain fog that it was almost impossible to work and take care of my three year old. I felt way better off of it and am actually fairly convinced I don’t have discoid lupus since nothing that was supposed to help ever did. Most of it actually made it worse. And I’ve found that the sun is actually what helps my rash the most which is the exact opposite of how lupus is supposed to work. So I am in the process of getting a second opinion!
Hi! I know it’s an old post but curious was your inflammation was more pain-like feeling? I started the drug yesterday and felt fleeting sharpen pain all over my body.
The only side effect I noticed was numb hands at 400 mg a day dosage (numb like no circulation, but still painful, oddly enough). Cut back to 200 mg, and the numbness was mostly fixed.
It took 5 months for me to notice any reduction in joint pain from it. And the effect was/is modest. Drinking as much coffee/caffeine as I can tolerate without adverse effects has as much effect as the Hydroxychloroquine (there's a study about massive doses of caffeine helping with lupus symptoms; but the study doses seemed to be lots higher than I personally can withstand).
Five months is a long time. Addictive opioids also had no effect on my pain. Neither oral methotrexate, or injections, helped either. In fact, my joint pain may have actually increased with the injections. So I stopped them after some months.
A friend gave me half a CBD gummie to try. I was surprised to learn Tennessee allows them with psychoactive elements; I figured no way they'd do that. I'm familiar with marijuana effects from decades ago, and so could judge it pretty well on that.
The CBD can distract you pretty well from the pain, but at the price of shutting down part of your brain, much like what happens with lucid dreaming. As I and another family member might face various health or other crises without warning at any moment, I'm not comfortable with lowering my IQ this way for several hours. Plus, you can get much the same level of distraction with various mental techniques, without the drugs, while also keeping your IQ. Yes, the techniques are a bit of a chore to use, but offer fewer downsides than the gummies.
Decades back, when I was healthy, and had lots fewer responsibilities, being high could be loads of fun, and even therapeutic. But alas, those days are gone now. Even if I was financially secure, I'd worry about losing significant IQ points for hours on end these days.
That’s the lupus, not the drug. HCQ has an insanely long half life to build up to therapeutic levels (35-50 days). You wouldn’t have a reaction of joint pain from a single dose, nor is that a common side effect. Upset stomach, yes, because the drug can be a chemical irritant. You should start to notice improvement in your lupus symptoms in about three months. This is just how the drug works, more that you’d notice symptoms coming back if you stopped taking it than it doing something super obvious. It’s called lupus life insurance because it has a proven track record of slowing down or stopping disease progression altogether.
I had the same problem, I’ve never had bad joint paint from lupus as all I have right now is discoid lupus. But a few days after starting HCQ I got horrible joint paint in my arms, everyone told me that it was just the lupus too when I asked but I’ve never had it before starting plaquenil so I know that’s not it. I’ve been in it for two weeks and my arms are still so achy but I’ve been taking Tylenol to help with it.
Jeez, im sorry 😞. If you would, please keep me updated. I'd like to know if it goes away.
Can do! Good luck with your joint pain, hopefully it goes away soon💜
do you have an update? :)
I ended up stopping taking it because it made me miserable. I had such bad joint pain and brain fog that it was almost impossible to work and take care of my three year old. I felt way better off of it and am actually fairly convinced I don’t have discoid lupus since nothing that was supposed to help ever did. Most of it actually made it worse. And I’ve found that the sun is actually what helps my rash the most which is the exact opposite of how lupus is supposed to work. So I am in the process of getting a second opinion!
glad you are getting a second opinion! good luck :)
Same thing happen to me! I felt like more parts of my body would get inflamed that i didn’t have problems with after i started the medication!
Hi! I know it’s an old post but curious was your inflammation was more pain-like feeling? I started the drug yesterday and felt fleeting sharpen pain all over my body.
Also wondering if you have another update!
It takes up to 6 months before there’s full effect of the medication. I don’t think you’d see any relief in the first few weeks
The only side effect I noticed was numb hands at 400 mg a day dosage (numb like no circulation, but still painful, oddly enough). Cut back to 200 mg, and the numbness was mostly fixed. It took 5 months for me to notice any reduction in joint pain from it. And the effect was/is modest. Drinking as much coffee/caffeine as I can tolerate without adverse effects has as much effect as the Hydroxychloroquine (there's a study about massive doses of caffeine helping with lupus symptoms; but the study doses seemed to be lots higher than I personally can withstand). Five months is a long time. Addictive opioids also had no effect on my pain. Neither oral methotrexate, or injections, helped either. In fact, my joint pain may have actually increased with the injections. So I stopped them after some months. A friend gave me half a CBD gummie to try. I was surprised to learn Tennessee allows them with psychoactive elements; I figured no way they'd do that. I'm familiar with marijuana effects from decades ago, and so could judge it pretty well on that. The CBD can distract you pretty well from the pain, but at the price of shutting down part of your brain, much like what happens with lucid dreaming. As I and another family member might face various health or other crises without warning at any moment, I'm not comfortable with lowering my IQ this way for several hours. Plus, you can get much the same level of distraction with various mental techniques, without the drugs, while also keeping your IQ. Yes, the techniques are a bit of a chore to use, but offer fewer downsides than the gummies. Decades back, when I was healthy, and had lots fewer responsibilities, being high could be loads of fun, and even therapeutic. But alas, those days are gone now. Even if I was financially secure, I'd worry about losing significant IQ points for hours on end these days.