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kamillah
07-18-2008, 08:43 AM
Hi,

I am having a hard time right now and am so tired that if I could I would just sleep all the time. My hands are getting worst by the days and my hip feels a three instead of a 10 now, which I am thankful for. But I am wondering how does a person keep going with all there daily duties, when they are having a hard time getting out of bed for the day?

It seems as though my family expects me to be acting totally healthy and they do not realize that I just am not myself and am not feeling good. That I would like to just rest and not do anything until I get feeling better. any suggestions on how to handle family when you do not feel like doing anything?

kamillah

laurid8967
07-18-2008, 03:10 PM
Kamillah -
Are you on any medications? I felt just like you did a couple of months ago. I literally could NOT keep my eyes open for more than a half hour. I have two children and a husband and (at that time) a full time job.
I left the job as I just couldnt do it anyomre, however, my doc put me on prednisone and plaquenil. The plaq takes a few months to work, but the prednisone was a miracle drug for me. I had been given it a few months prior to that - as a taper, which is starting at a dose and gradually decreasing it - and when the dose would taper down, my symptoms (particularly fatigue and pain) would come right back.
This time, however, I have been on a daily dose of 20mg, and within two days of starting it, I have been like a different person. I was awake, with little pain, no swerlliing. etc. I have had a couple of flares since then, but NOTHING like it was at ALL....
I would ask your doc for some prednisone to get your flare under control!! Long-term has side effects, but - for now - I am fine just where I am!! I feel as if I have my life back!!
Good luck
Lauri

kamillah
07-20-2008, 08:51 AM
Hi,

I have actually been put on the same drugs in which you are on. I start off on 30mg prednisone and 400 mg plaquenil, I felt no pain while on the 30 mg and now they have begun to taper the prednisone and I am on 15mg for the next week and they are taking about a maintence dosage to stay on for a while. The plaquenil I have notice not to be as tired and i hear this takes 5 months to work for this forum. So I am going to stay on it for a while. I am getting an appointment at a Lupis clinic at a major hospital here in the USA. I have not seen a change in my hands they seems to be worst.

kamillah

laurid8967
07-20-2008, 09:10 AM
Hey Kamillah -
We spoke in the other post too about lupus/RA. Im glad your doctor is on the ball, and is aware that though it is not common (less than 10%), there are lupus patients who do begin actual damage to their joints. I dont know if the prednisone would help with this, because it is an immunosuppressant and an anti-inflammatory. There are meds out there right now that work WONDERS with joint deformation/damage. I have a few friends who are on it, and say their life has changed dramatically due to it. All three of my friends with this problem (though they do have RA and not lupus) are on Enbrel. This drug helps with other symptoms of lupus, but also has great success with joint problems. One of my friends (anylosing spondylitis - another AI disease) was able to get out of bed after 3 years. He is now working full time. Two others lead normal lives as well.
I am also someone in a rare % group of lupus, as I have a negative ANA (less than 5% of lupus patients), and I thank God my doc thinks outside the box. Im glad the prednisone is working on your other symptoms, but maybe one of the other meds will help as well. Also, when my taper began on the prednisone, my symptoms kept coming back. I have been on a daily dose of 20mg. for almost 8 weeks now, and have done really well. My doc doesnt want me on prednosone any longer, however, and I may need to begin Imuran instead. I see him on the 28th.
There are "sticky"s on the top of the forum whch give all kinds of helpful hints on what WE can do to prevent/ or lessen a flare. These tips have helped me immensely as well.
I hope your hand problem is resolved soon, and take care of yourself as much as possible - it really does help with keeping the disease in check!
Let us know how you make out - have agreat day!
lauri

purplepinkgirl
09-26-2008, 05:02 AM
I understand how you feel. Before I knew I had lupus, I was aching all over and relly tire a lot and my family kept saying I was lazy. A few weeks later I was in the hospital for 2 weeks with my first flare. I reserched everything there is to know about lupus and its different side effects and printed about 20 little pamphlets I put together and gave them to my close relatives and friends. After that they understood how I was feeling whenever I was sick or tired. It really helped, I hope it works out for you.

cherie
09-26-2008, 05:29 AM
The only thing i could say would be sit them down in front of the computer and make them read pages of info explaining symtoms flares etc so they can see how it affects us lupy lot and how porly it can make you feel.
I hope you can get them to realise soon as i cant imagine the stress and you feeling off is doing you any good.