Hi,
I have been feeling better, I am on my 4th month of hydrooxyclorquine, just wondering how I can tell if I am doing better, or just in between flares? I guess, only time will tell, that is why my Rheumy doesn’t want to see me until the 6month mark… I do feel like I have more energy, but the pain is still ever present. I will take whatever I can get!
Tonight it is super cold feet and legs, even after I put on thick socks and turned up the thermostat, it is not like it is that cold out, I am in San Diego… Does this happen to anyone, any solutions? It is better then hot feet, that is usually more painful.
Jon
Now two hours later burning up! Got to fix that thermostat…
funny…I started on hydroxychloroquine 2 mos. prior to you. Not to say that is the reason, but I’ve had that exact same thing this year. not sure if it’s just because I’m now more aware after my diagnosis or what. but I do the socks, thermostat, hot bath, and heating pad. the drug has so far been a godsend. more energy and overall feeling of “back to normal.” But there is always something looming in my mind…“when is it going to hit me again.” but we have to stay positive!
I have the same issue, with what I call "hot, cold, hot cold" it is annoying. I tell my husband that he can put on a sweater, because I'm not walking around naked....when I'm hot. And when I'm cold, I sometimes put my clothes and/or socks in the dryer for a few minutes to heat them up, and it feels nice and cozy. Sorry we have to go through this. But it is what it is....just have to bare with it I guess. Feel better
I have had the hot cold thing for several years, along with the pain in my muscles and joints, at least I know I am not alone! My Neurologist just diagnosed me with Polyneuropathy, secondary to another disease and sent me home… This was after passing all the nerve conduction studies and skin biopsies. The sweat gland small fiber count was almost positive, it was just one point above. Systemic small fiber neuropathy is common with SLE.
That is my feeling too about the drug, I feel I have more energy, and more stable.
I guess I will just have to wear several layers, and peel them off as I get warmer, then put them back on as I cool off… Else tric socks are tempting!
I started hydroxyclorquine in July, and in September, when I was feeling better (catch that past tense?), I told my rheumy at my appointment that I was feeling good, and she dropped the dose in half. I have still not recovered. I only lasted a week at the lower dose. Now I'm back up to full dose, and have added on prednisone 10 mg a day, gabapentin, 600 mg a day, and I still don't feel as well as I did in September!
I'm a rookie here, so I can't say if this is normal, but I learned my lesson about meds. Just take those "feeling good" times, but don't stop taking the meds!
(I also have the same hot-cold thing. I thought it was part of Raynauds? I have IMAK gloves and polar fleece socks so far to combat it)
Feel better!
Jon as I am in San Diego too, I feel like you do. I wear Ugg slippers all day and socks to bed. If I get too hot I rip off my socks though, rarely happens. I have had this for years because of thyroid issues. It gets so cold here at night I always have a throw on me while watching TV and 2 little dogs who radiate a lot of heat. The dryness of the Santa Ana makes it harder to breathe too. I always have pain even with the vicodin, my hands and back are the worst. The Plaquenil has helped me so much, I have been on it for 2 years this time. I was in a flare that lasted about 8 months, but started to feel better at the 6 month mark.
Did your doctor sign the SDG&E form to give you a medical discount. If not check online with SDG&E.
Stay warm, Geneva
after two and a half years on Plaquenil, I feel pretty good. I am even exercising again almost every day.I do have issues with hot and cold also. I have Raynauds and my hands and feet are cold all day long. my feet are particularly bad. When they finally warm off they hurt. I have just started taking a low dose of blood pressure medicine that is supposed to help with the reynauds.so far I don’t see any difference. once again, I need to say that I have much more energy again. I almost feel like my old self.
Plaquenil doesn’t start working for about three months, so you are right on schedule! That’s great! It will probably continue to improve for a while . You can still have flares, but probably not so often.
I never lowered my dose from 2 pills a day i don’t know why they would do that.
I live in Vista (San Diego too). It is probably the best weather in the world, but everyone ave still complains. I have Rdynaud’s, but not here. My feet and now legs get really swollen and hot, and painful so I run the air conditioner
a lot, or sleep with a fan on my feet. Right now my calves itch like crazy, after hurting last week.
To stay all over warm I can’t say enough about Thermacare heat wraps and no, I don’t work for them, lol. I’m originally from San Diego and you do have the best weather. I am currently living in Hawaii and the moisture is something that wasn’t as prevalent there. I still have my family there and heard it was in the 40s in the morning. I’m freezing in the high 60s here. I wrap a heat wrap around my middle and it’s like my own personal heating pad. They are sold much cheaper at Sam’s and Costco. Anyone under 130 lbs should look for small/med size.
Plaquenil takes months to begin working so you are responding well, from the sound of it.
The all over pain could very well be an overlapping disease, which from what you can see is very common. For me Fibro, Sjogren’s and Nephritis. Because of the kidneys I am very careful about medicine toxicity.
Cbd oil and Ashwagandha root have also been very helpful with the pain and joint inflammation.
I hope you find what works for you and have a super holiday season. Go Chargers!
geneva21 said:
I live at a large farm in Escondido, we have solar panels... Ugg boots or slippers sound like a great idea! Slippers better, as they can be ripped off faster. My hot episodes will happen every evening, it goes like this: hot during the day, cold in evening, then hot, then cold etc...Jon as I am in San Diego too, I feel like you do. I wear Ugg slippers all day and socks to bed. If I get too hot I rip off my socks though, rarely happens. I have had this for years because of thyroid issues. It gets so cold here at night I always have a throw on me while watching TV and 2 little dogs who radiate a lot of heat. The dryness of the Santa Ana makes it harder to breathe too. I always have pain even with the vicodin, my hands and back are the worst. The Plaquenil has helped me so much, I have been on it for 2 years this time. I was in a flare that lasted about 8 months, but started to feel better at the 6 month mark.
Did your doctor sign the SDG&E form to give you a medical discount. If not check online with SDG&E.
Stay warm, Geneva
Thanks for all the similarities and solutions! It was in the 80’s today, tonight should be in the 40’s. My lips are all cracked from the low humidity, I look like I just got back from a polar expedition!
At least you have a good sense of humor!! I forgot to say that your doctor should not have cut your dose in half just because you feel better. Makes it too easy to fall back into a flare.
Jon_sparky said:
Thanks for all the similarities and solutions! It was in the 80's today, tonight should be in the 40's. My lips are all cracked from the low humidity, I look like I just got back from a polar expedition!
It kind of shows how little that doctor understood about SLE, and the treatment, that would be similar to reducing a anti depressant because the person didn’t feel depressed anymore… The way I understand the SLE treatment with Quinine type drugs, is that it helps regulate the immune system, not something you can adjust like thyroid replacement…
Thanks again for sharing your similar symptoms, it helps it to all make more sense, when you can compare symptoms. This has got to be one of the most convoluting illnesses, I have tried to research SLE, but it is all over the place! Aparently the hot, cold sensation may be a form of neuropathy that originates in the Dorsal root in the spine, when SLE causes inflammation of the nerve ganglia. There is a certain MRI that will show the Dorsal root abnormality, but like everything else in the world of Neurology, they have no cure, so tough toads! You can see why the Neurologist dumped me… ;0)