After taking Plaquenil for about 6 months my rheumy and I decided I should stop. We suspected it was causing some digestive issues (had no appetite for 5 days every month) and I didn't think it was effectively treating any of my symptoms. After stopping Plaquenil for about 3 weeks all my pains got a lot worse, dry forehead returned, and I realized the Plaquenil probably was in fact effective, I just didn't realize it until I stopped. My rheumy wants me to go back on Plaquenil. I would like to take this opportunity to try the AIP diet to see if it helps me feel better without the Plaquenil in my system. I would like to be able to make diet changes without taking medication. My rheumy said he can't comment either way as to whether I should try diet changes. I asked him if I could do my body any harm by not restarting the Plaquenil for a few months and he said he can't say, he just recommends that I start taking it again if I'm in pain. I'm afraid I'll take a few months off the Plaquenil and do some sort of permanent damage.
I'm just frustrated with the rheumy who seems to be interested in medicating only. The nutritionist I've been seeing is confident the diet will help. I hope so. Have any of you chosen diet changes over taking Plaquenil, even if the Plaquenil helps? It's hard to ignore what your doctor suggests, you know?
Hi gmpurple,
I use both Plaquenil and an low-carb diet, and have noticed benefits from both. While I understand the desire to avoid unnecessary prescriptions, particularly ones that can cause damage down the road, it sounds like Plaquenil was helping you without causing too serious of side effects. Were I in your position, I would try restarting the Plaquenil again as well as starting an AIP diet. They do not need to be done insolation, and symptom changes caused by diet are much easier to detect (start/stop eating something new and see what happens). Depending on your dose, you can try lowering it to see if that reduces your side effects.
It is my general belief that anything we can do to reduce inflammation will help slow disease progression. There are a lot of alternative therapies like diet, low-dose Naltrexone, and helminths that can be tried along with traditional prescription therapies. While it is true that many rheumatologists are not interested in alternative treatments (luckily mine is), that shouldn't prevent you from trying them on your own. While it doesn't seem like you have too many issues, if you are in fact unhappy with your doctor, you can always look for another (insurance and geography permitting).
Good luck with your treatments!
I do an adaptation of AIP and take plaquenil (and others). They both help. I did straight AIP for 6 months and then started (and kept) tweaking it to try to add things in or take out some permitted foods. With my whole regimen, I do pretty well. So well, in fact, that early this year, my rheumy suggested I try stopping plaquenil to see if I needed it. I did. Turns out it keeps a new kind of pain away, one that comes on suddenly when I move my joints. Dietary regimen keeps the general inflammation down (aching tendons, low back pain, neuropathy, etc.) AIP did wonders for me, however, not everyone has that experience.
You might start them both at the same time and see how good you can feel with both together. And then maybe try stopping one or the other.
My doctor thinks that meds are good, but we should be on the lowest dose/fewest number that will do the job. So when things are going well, she encourages me to try reducing something. I feel the same way, so appreciate her reminders.
Plaquenil can upset my stomach so I take it with my largest meal of the day. I've tried to stop it too b/c it also causes tinnitus but it also keeps my diseases at bay. If I stop, pain and other problems come back. I just take 200 mgs a day. I am gluten free and dairy free but I still need the plaquenil.
Thanks everyone. I'll let you know how I make out with the diet.