Trying to deal with lupus

I was finally diagnosised with lupus this past october. The remutolgist put me on predisone a low dose 5 mg and she wanted me to get a eye exam so i could start taking plaquail which i never did i do not want to take diffent meds right now and i stoped taking predisone and was taking vitams and advil. but the past two weeks i have not been feeling good at all feeling stiff after working 8 hours and very sore i hate these feelings and my chest hurts at times,i take care of people everyday and somedays it is really hard i have to push my self hard to make it through the day. i wish you could go to just one doctor for your promblems instead of differnt ones.I know they say i have lupus but sometimes i wonder if it is something else.

3 Replies

Hi Diane! I'm sorry that you were diagnosed with lupus. I can definitely understand you're not wanting to take meds. I was diagnosed with lupus more than 15 years ago, but have had symptoms for over 30 years. I currently take 14 different meds every day. As much as I hate to take them, they really do make my life much better. If I didn't take my prednisone and plaquenil everyday, I would not ever be able to even get out of bed! Taking meds can be difficult, but wouldn't you be happier if you didn't have the pain and stiffness you're suffering from now? I hope you can find a good doctor who can take care of all your symptoms. I'm wishing you all the best!! Lupus can seem really scary, but if you get a good doctor and get your symptoms under control, you can have a good, normal life.


try alternative if you are not happy with drugs, I see an iridologist who is also qualified to dispense herbal medication, I also take Bromalin. I originally took courses of steroids but have not had any for over 2 years. I get days when I have no energy and have found the best way is to just give in and sleep. I was lucky and had a good consultant who was happy for me to try alternative medicines, my GP also accepts this. Hope you soon get sorted, try to think positive although it is not always easy I know, I found it hard to deal with at first, it is so frustrating and if you read everything it frightens you to death. I had to give up work as I suffered


I agree with MJK510. I too take about 14 pills in the a.m. and 5 in the p.m. and that's not to mention the in between ones like pain, anit acids. I also hated taking pills and went form 1 to 14 and still get's an attitude when I have to take them but they do help.

That begin said, YOU MUST TAKE YOUR MEDS. They do help[. I can tell when I miss a dose. I started out on 80 mg of pred (which ment my Lupus was in full force) I have been sliding back & fourth fro 40 to 5. Currently on 25 mg.

The pred helps trust me, I was under a hemoglobist (sp) and he wasnt really doing anything for me. My platelet count got down to 7, which was dangerious and had I not told my dr that I didnt think he took me serious he sent me to another one (he treated my mom's cancer) and they were shocked that my previous dr did nothing. They were going to do a blood transfusion but I ended up having to have 1 chemo treatment a wk for 4 wks. I did this twice between July & Sept.

Most doctors hate to prescribe pred. so if you have to please do. It helped, had me eating a lot for about 1 month, but not any more.

If you start the plaquenil do get your eyes checked. Plaquenil tends to effect the eyes and you should have them checked every 6 months and there's a special exam they do so let thim know your on it.

I hope ou feel better


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