View Full Version : Strange happenings

01-15-2013, 09:05 AM
Good morning, hope this finds everyone well. I have to say being newly dx I wonder with small things happening is it lupus or what? For instance before bed last night my right eyelid in the crease was burning and irritated. I checked in the bathroom and looked like small bumps 2 for sure maybe a 3rd. Almost blisterish looking. Anyway went to bed and this morning it's a red streak across the crease of my eye lid and my eye is slightly puffy. Nothing new did not get bit or scratched just out of no where it started burning. Of course this nothing major but weird.

On another note I do have a question regarding hand pain. It's worse in the cold. I do have raynauds. It's been cold here and once my hands get cold that's it even after getting warmed up they ache. My fingers will sometimes stick for a second like they lock. If I pick up something to heavy they hurt I have been dropping things as of recent a 24 pack of coke. I can't seem to open jars loss of strength. Yesterday I did get overly cold the heater was broke at work. When I got home my whole body ached and I was running a very low temp.

I am just into my third week of cellcept was just increased today I'm now at 1000mg a day after two more weeks a blood draw and up to 2000mg a day. I know that it can awhile even several months before you notice improvement but will cellcept ease the joint pain? I do have kidney involvement so I only use Tylenol and it seems I should own stock in it. It does help some but total relief is not accomplished with Tylenol. My next appt with my rheum dr is in 4 weeks. I do see a new kidney dr this week. My rheum dr does know about my hand issues but hasn't really addressed to much.

01-15-2013, 09:54 AM
Aaaaah, the joys of Lupus... NOT!!!!

On the eyelid question - dunno if this helps, but after I went on Methotrexate (which also alters the immune system, like Cellcept does), I had to completely change all the face creams and makeup I was using. I went through a few months of really bad acne - not tons of zits, but HUGE, painful ones - usually 2-3 of them at a time, and they'd last for a month or more. Plus, my eyelids became SUPER-sensitive to ANY kind of cream or makeup - even stuff that I had been using for years with no problem. I tried a bunch of stuff, and eventually what I found is that I have to use Clinique eye cream on them twice a day, and be careful not to get any other moisturizers on them. I bought all new hypoallergenic eye makeup, and as long as I use the Clinique cream first to put a protective barrier there, I am okay. I also switched all my moisturizers, etc - on my docn's advice, I use a lot of retinol and some heavy moisturizers, and the acne has gone away and my skin looks (and feels) great again now. But it took a lot of trial and error to find what worked for me. Basically, going on the medication for Lupus really changed my skin.

Aaaaand, yes - the Raynaud's. I also have that - more in my toes than my hands, but I get the same kind of stuff. My doc recommended one regular-dose aspirin per day, so I do that now - and I am super-careful about keeping warm. He also prescribed some nitroglycerine cream, which helps. But it does seem to be slowly getting worse as I age....treating the Lupus helped a little, but it's still there.

More than Raynauds, when the Lupus affects my hands, it does make me awfully clumsy...I get fluid on my finger joints and my hands just don't work quite right. It's not horribly painful like arthritis, thank goodness, but it sucks dropping everything all the time! That symptom got quite a bit better when the Plaquenil and Mtx kicked in after several months...but it's still the first sign of a flare for me. if I have a day where I am dropping everything, I know I need to take some NSAIDs and get extra rest.

That feeling of running a low fever is very common with autoimmune diseases - and you can feel that way even when your body temperature is "normal". Many of us have a lower-than-normal body temp to begin with - mine is around 97.4 - so if I am at 98.6, I feel yucky. That also pretty much disappeared for me after a few months of treatment.

I don't know if the Cellcept will help your joint pain - everybody is different - but I can say that being on Methotrexate has worked wonders for me so far. I can't believe how much better I feel than I did a year ago!!!! Not every treatment works for every person, of course - it can take a while to find what is right for you - but don't give up. Keep working with your doc to find things that help. My doc also suggested some changes to my diet that might help, and they did - but that's also something you should do WITH your doc and maybe a nutritionist.

It helps to keep a diary of symptoms so your doc can see patterns of things....and if he/she isn't addressing something you feel is important, be sure to bring it up as much as you need to in order to get it addressed. Sometimes nothing can be done about it - but it's still important that the doc know how much it's affecting you.

Best of luck...let us know how things go!

01-15-2013, 04:00 PM
Thanks sleepy in Seattle. Does the name imply you are from Seattle? I am in Seattle. Funny I never realized my lower then normal body temp was from autoimmune. My norm is around 97.6. And yes the feeling of fever I get often the aches with it but no fever. I was running a low temp however yesterday. My body temp is weird freezing during the day drenching night sweats .

01-15-2013, 04:02 PM
Oh I forgot to mention its been 7-8 months of plaquinel and 1 baby aspirin. The cellcept is new as mentioned. I also take Zoloft for anxiety. I also use aveno products I have very sensitive dry itchy skin.

01-15-2013, 04:29 PM
I can't give you any advise, but I want to warn you about Tylenol, they are very bad for the liver and kidneys.


01-15-2013, 06:47 PM
yup, I am in the greater Seattle area....I guess we're all freezing during the day right about now!

Many of us also have the night sweats, and trouble regulating body temp. My night sweats are totally gone now, though I still seem to always be colder or warmer than everybody around me. I have been on Plaq for about 18 months and Mtx since summer. It does take a while for your body to settle in to a new drug, so don't judge it too quick. I am hoping I can STAY on the Mtx for many uneventful years, because it seems to help me a lot with few side effects. I know that with most of these drugs (Mtx, Cellcept, Imuran, etc.) we end up having to switch or rotate at some point because the side effects catch up with us...but maybe by then there will be a cure? PLEASE?! LOL....

I try to be hopeful about things....