Well, my rheumatologist said the words today, you seem to have lupus. Never thought I could be relieved yet devastated at the same time. Im glad I have answers, just a little scared. So I was given plaquenil 400 mg per day and neurontin 1-3 pills 3 times a day. He said I should notice relief in roughly 3 months from plaquenil. Just wondering how long it took others and did this help fatigue, photosensitivity, or foggy brain? Have been taking tramadol for pain but didn’t want that long term so hoping neurontin handles that. Thanks for your input.
I noticed it helping almost right away but not fully at its best for about 12 weeks. I have been on it since June. Why did he give you the gabapentin?? I know its for pain but are you having nerve pain?
I have been n it since june also. I quit taking it for a little wile just because I was losing my hair and thought it was the Plaquenil. I am on it again. From what I hear it works right away but to full affects dont start showing till a coule month. It seems to be a very good drug. MAke sure you get your eyes checked and take it with something like cheese or peanutbutter... I have also heared that the side effects ( IF you have any ) will level out after a wile.
As afr as the "you have lupus" thing goes. Yeah its hard. I went through that in june. My family has cancer, diabetis, heart problems.... but not lupus.... I was prepaired for all of those but not lupus. I felt like the rug had been pulled from underneath me. Once I got out of the hospital I started reading up on lupus. EVERY THING I could find about it. I was put on a heavy dose of prednisone and could not sleep for days till my dr put me on something else. I would lay in bed for hours trying to sleep and couldnt. Well laying in bed for hours having just read all this horrible stuff lupus does.... man I tell you what... that was probably the worst thing in my intire life. I thought my Lupus would do all that to me. After my best friends came up to visit me and slaped me upside the head " Not all of this going to happen to you! Its different for everyone.This stuff is just what doctors have documented from MANY different cases!" I had serious panic attacs all the time till that hapened. I am now being taken off the prednisone YAY after gaining 50 LB... but the new drug I got will help!
If you ever have issues like I did well email me. Its not so bad. Once u get used to all the needels they poke u with and gwt used to taking the meds... you will be ok. Good and bad days will come and go. and DONT YOU EVER JUST LAY IN BED AND BE SAD FOR YOURSELF! It will make it worst. Get up. Do something. DOnt over do it, but u know stick some clothes in the washer or go to the store and get u s soda or something. Dont let Lupus rule your life.
OH as for the Tramadol. Its good stuff. Way better the all the oxy things!!! It is habit forming so watch that, but the fact that u dont want it is a good thing. Keep it around though a few of them just in case u need them. that will give u some relieve till the Dr can call u something in! I have been taking it too. It doesnt kill the pain like it does with the oxy, but it dulls it out. Takes it down a notch for me.
PS my spelling in english sucks, but if I typed in German I dont think I could help u hehe.
I’ve had some neuropathy and I didn’t want to take pain meds daily, hoping to just when its really bad. He said to try the gabapentin and see if that helps the pain.
I was on plaquanil but it started to affect my vision so i had to comer off...it did seem to help with the Lupus symptoms while I was on it, but i don't think they gave me a high enough dose. i was only taking 200 and i hear a lot of people say they take 400.
Thanks ann, great to know bc my vit d is low to begin with, even though I’ve been on 2000u/day for the past 6 months, its at 15. The past year and a half has been such he!# I am really hoping to see some relief. Thank goodness I haven’t had anything serious, just an onslaught of symptoms and unbelievable fatigue with some pleurisy added in 
I hope and pray my urinalysis doesn’t show anymore wbc, rbc, or protein too. There wasn’t a large amount but I never had it before and then my past 2 showed it. No signs of bacteria, infection, or kidney stones so I suppose it’s the beginning of some nephritis? Any idea if plaquenil will help that? Thanks
Thanks ann, I need to talk to my drs about this, esp since I have developed a sun sensitivity and get extremely sick with more than a couple minutes of exposure. Are they linking low (like <30) to lupus yet? Obviously the sun sensitivity causes problems, but I know mine was at 12 when I was getting plenty of exposure (presensitivity) just curious :)I thanks for the info
I've been on plaquenil for 8 months now and it helps, I am not as tired but I do have those days where I get so tired I can't see straight but it helps and the pain isn't as bad but I am on gabapentin 300mg X 4 a day and there are still days where I feel so bad. Plus I am on Nortriptyline 50 mg a day. I have a lot of pain medications but I still have pain and I am on lidodern 5% patch for pain. All this combine sometimes gives me relief but let that cycle come and boy I am in for a rough ride. But over all if you cut out the caffeine and chocolate it seems to help a lot. I hope this helps.
I take 4000 mg of vitamin D because mine stays low.
JConl3a said:
Thanks ann, I need to talk to my drs about this, esp since I have developed a sun sensitivity and get extremely sick with more than a couple minutes of exposure. Are they linking low (like <30) to lupus yet? Obviously the sun sensitivity causes problems, but I know mine was at 12 when I was getting plenty of exposure (presensitivity) just curious :)I thanks for the info
I have been on plaquinil since September and I am just now starting to get better. My doctor said it could take 4 months to take effect. I hope it starts working quickley for you!