Be careful with abilify. It caused extreme agitation, restlessness and paranoia in me... Not to scare you, just be aware of your feelings when you start out. Good luck!...
Hester- Are you taking oral or injectable methotrexate? I was horribly ill from the oral dosages but experience almost no side effects from the injections....
Jenny I am a PhD candidate so I work 40+++ hours per week. The way I cope is by telling my professors etc that I am sick and occassionally taking a day off when I know I am getting sick as sort of a...
Ginny- My rheumatologist jokingly refers to me as a "pharmaceutical cheap date" lol. Though I am not a red head I am so sensitive to drugs it is ridiculous... A 5mg dose of pred for example can...
Ginny- First of all, dillaudid is DEFINATELY evil stuff! My parents tell me I was telling them some weird stuff while taking it and they had to put socks on my hands to stop me from itching (I guess...
Barbara- You dont know me as I only post spurratically, however, I want to tell you that you are an inspiration to me - and I imagine to many others. Your courage and compassion show through in all...
Thank you all for your kind, heartfelt replies!! you have NO IDEA how much it has meant to me these past few days... The whole "drug seeking" thing is extermely obnoxious and difficult for reasons I...
Ginny- I have horrible lip dryness and what works the best for me is the $1 jar of vasoline. Put it on sparingly during the day but put a lot on at night and it works wonders!!...
Hester- Thank you. Not knowing what is going on or what will happen next is the worst part of this disease in my opinion. Thank you for sending prayers it means a lot... I may not post often but I do...
Ginny- Thank you for your kind reply. I hate the stupid prednisone and the worst part is that even a small dose can send me into a bad state and that doctors dont believe it can happen at such low...
I keep thinking I am at the bottom of the hole but then the bottom falls out and I find a new low... I haven't been here for awhile as I have been insanely busy trying to get some research done for...
heartsong- you should be able to raise your dosage as well. i have been given liberty to reduce my dosage and instructed to go back up if symptoms returned. i would advise calling your doctor to let...
Rosie lol. i may be young (and apparently posting impaired!) but i have been around the block a few times! :tongue:...
This is probably my biggest complaint with prednisone- ie feeling like I have pms times 8 million and blowing up at everything. Please make sure you take stock of your moods and I have become...
oops. that was meant to be a reply to someone!! sorry...
Hi Serina and all- So if you google "weighted blanket" there are some companies that make them. Additionally, if you can sew (or know someone who can) you can add pockets to an existing blanket and...
Hester- I have very similar sleep issues. When I am feeling good I have a really hard time to get to sleep. Surprisingly, what helps me most (Don't laugh!) is having a weighted blanket. It is...
Lynnwood- So I am only in my 20's but I had really severe neurological problems, had pulse cytoxan for a little over a year and was much better. However, I still had problems with switching words...
If your computer hurts your neck, try having someone prop up the monitor to different heights with some big dusty books. The right height may help you more than you can imagine. (I only noticed this...
Pat- Nice to meet you too! Energy is definately a state of mind for me because if it was a physical state for me, I would be no fun, haha. :) I look forward to getting to know you....
Hester- Honestly, I consider the unpredictability of the disease both a blessing and a curse. You really never know what you are going to get day by day let alone week by week. I understand what it...
Mawmaw- I'm sorry that you are experiencing this as well... Whenever I get below a specific dose of pred (depends on what other immune suppressants I am on at the time) I get unbelievably tired and...
Lynnwood- a SUPER nerd, eh!? :smilewinkgrin: I am impressed by anyone who can handle computer engineering- I have had to write a significant amount of code in C++ and Matlab and though I am a huge...
Rosie- I am female- haha I should have mention that somewhere since grad degrees in engineering are almost all male... I actually like it better because 1) there is no catty, hormonal, girl-fight...
I kind of missed the boat and didn't bother to introduce myself. I am 25 years old and have had lupus for about 7 years. Beginning in 2003, my senior year of undergrad, I did a year and 3 months of...
I was done to 2 (its a MIRACLE) mg and was doing fine for 6 weeks then all the sudden the bottom dropped out. I am taking the daily 1mg folic acid that is recommended as well....
If it is helpful I have been on prednisone ~7 years... I was tapering ~1/2mg per month...
I do once weekly injections and take 8mg zofran. I am what would be termed at "pharmaceutical cheap date" (ie a little bit goes a loooong way) so i am maintaining on a 7.5mg dose. We actually think...
I was diagnosed with SLE in 2002. I have tried most typical treatments (cytoxan, cellcept, prednisone etc) and had some significant remissions. To ward off prednisone side effects (including...