Lupus Support Group

Hi Everyone:

The last time I posted I shared that due to a strongly positive anti-histone antibody, my doctor believed I had drug induced lupus and that I had been switched off the suspect medications but was still getting as sick or worse. The area of the spasms and pain has been moving from kidneys and stomach to a much lesser degree of pain toward the heart, and lately to the middle of my spine. Pain in the leg joints gets pretty bad when lying on my side at night in bed and affects the joints of the leg on the bed. I switch sides all night long and in the morning it sometimes takes up to an hour for the pain to go away.

My primary care ordered an ANA, sed rate, antihistone autoantibody and a metabolic panel. The ANA is negative as usual, sed rate is 27 which I'm not crazzy about but don't consider a big deal, kidneys are at the usual 45% filtration rate and the antihistone level is 2.9 with everything below 1 being negative and above1.5 being positive. There is no difference in the antihistone level at all since having stopped the medications a while back.

I am hoping that since all that can be done, has been done, that the rheumatologist will see the need to put me on some type of immune suppressant because this is not going away and seems to be slowly spreading. I'm suppose to see a cardiologist at this point for tachycardia [fast heart rate] and angina.

I'm not as angry and stressed out about this at this point for some reason. I'm hoping that they finally begin some sort of effective treatment.

Do immune suppressants make you feel sick too? Is one more prone to catch infections and viruses?

I'd really appreciate some opinions and information.

Thanks

Hope

Hi Hope,

I was exactly like you....when I first when into see the second rheumy she suspected Lupus as I had the discoid rash all over my arms and chest and had the malar rash on my face but I was also taking a drug that my first rheumy put me on for RA.....she said she would test me for Lupus which she did and my ana was negative but I had a very high histone antibody and a high sed rate which I believe was at 60.....so she took me off all medications for over 6 months as she thought they would be out of my system and she re-tested me and the same thing.....a negative ana but a positive histone antibody which to this day I still have and of course the symptoms got much worse so she started treating me right away with drugs. I think all the immunosuppresants are different and as you know is different for everyone.....some can make you nauseous and some don't....I wish you the best Hope.

Eva

Hello Hope, I'm sorry to hear you are sick. There are several choices of meds out there. I take Methotrexate (chemo drug)and it makes me feel like I have a bad flu for a couple of days. From what I hear in this forum, many of us don't have positive labs when we are feeling awful. Lupus is a complex disease that really isn't that well understood by docs! You still need to make sure your rheumy knows how bad you are feeling despite what the lab work says. I hope that you feel better soon.

Take Care,

Amy

Hope, sorry to hear you are still feeling so bad. I hope that they will start to treat you soon. I think with all the immunosuppressants you are at risk for infections I guess the degree of that will depend on the dose the doctor would give you. I think most of us would say they had some issues when first starting the meds. They can be harsh and for me it was mostly GI issues and fatigue. I hope you are able to get treatment soon.

April

Well, the antihistone is positive, as it has been and the rheumatologist did some tests to see if there were low level complements for lupus, which I don't know what that means. I see him in late May.

By yesterday, I had 3 feel-good days in a row, which is really good for me. Today I had spasms and pain again, which comes up along the left side from intestines to kidneys most severely and then over the spleen and ribs and heart area to a lesser degree. So I've been in bed for the greater part of the day but have had a good day anyway.

Thanks for your responses and info.

Hope

Hope......So your antihistone was still postive...you sound just like me......the complement refers to a group of 28 plasma proteins whose interactions clear away immune complexes (antigens mixed with antibodies) and kill bacteria. They are consumed (serum levels decrease) during inflammation, and low complement levels are an important indicator of lupus activity.....does this help??

Eva

Is a low complement level below the positive margine?

Or is a low complement level only significant when it is positive?

Mine are lower than the positive level.

Hope

actually I checked the test results and the c-3 and c-4 seem to be in the normal range.

Hope