View Full Version : still not convinced I have IT

10-08-2007, 10:24 PM
I've been hanging around here for a couple of weeks now just trying to find information to back up my self denial, and it didn't work. I can't deny it any longer - I HAVE LUPUS, I guess. ':?'

It all began with pericarditis attacks, a month apart for 4 months, beginning mid-April, 2 weeks after I'd broken my foot. Each time, including the broken foot episode, my PCP prescribed a pred. dosepak. He also had all the proper tests run and finally, after the 4th attack, referred me to a cardiologist. She ordered a heart cath, and the day of the cath I had another attack before the test began. That was convenient, because she got to observe what was going on and run other labs. One was an ANA which was positive. ( I had been dx with Hep C 7 years ago, had a positive ANA then, did interferon treatment for a year, and was declared in remission.) She immediately suspected lupus, put me on 20 mg pred. and referred me to a rheumy. He ran the same tests 3 weeks later and they were all negative,':?:' but put me on 400 mg plaquenil anyway, along with the 20mg pred. My PCP had referred me to this rheumy 3 years ago for problems with pain in my heels, and he diagnosed Sjogrens, without doing any labs, and had prescribed plaquenil. I'm not a pill-taker, and I didn't take it because I was smarter than he, and decided I didn't need it. And now I'm back to the same rheumy, this time I promised I'd take it. I still didn't think it was necessary, because I felt fine, (and I knew I didn't have lupus! I've never been one to baby myself - unless I was totally incapacitated, nothing could stop me from "getting the job done. (I DO have a very high threshhold for pain.)

So.....the pred had given me tons of energy in the beginning and I worked like a fool doing spring cleaning, working in my 1 acre yard full of flowers, but then at the end of Aug. I suddenly found myself unwilling, and almost unable to get out of bed - all I wanted to do was sleep, which I did for nearly 2 weeks. AND sweat!! I've always been a 'sweater', but this was ridiculous., So at that point I blamed it on the plaquenil and cut the dose back to 200mg a day. (My next rheumy appt. wasn't til Nov 27). I gave it a few days and nothing changed so I went back on 400 mg. - (my rheumy will be proud of me!) In the meantime I decided to learn more about lupus symptoms, and I still denied it - yes I had precarditis , but nothing else. It wasn't until I looked up support groups and started reading on this forum, that I'm finally convinced.
Do you think I might have had a "flare" in late Aug. when I was so tired.? I simply didn't have the strength to lift an arm, or walk across the room. The heavy sweating, weight gain of about 16 lbs (in 3 weeks) , the moon face, unexplained backaches and bruising - it all started at the same time, nearly 2 mos. after going on pred. We had driven to northern NY (from So. GA) to bury my mothers ashes and attend a high school reunion, then to MI to see my in-laws. It was a hectic week and a half, and the day after we returned I had promised I woud drive to Tampa to stay with my 12 yr. old grand daughter for a week while her parents went on a 20th anniv. trip. It was an insane week, running her to drs, dentists, guitar lessons, school, shopping, etc. And HOT!!! I moved furniture, painted her bedroom, did yard work, thoroughly cleaned the house, etc. Could this have brought on my first "flare?"

Today is the first day I've even felt like writing, but I do keep reading, and I hope you will allow me to join your group, ( and ask stupid questions!) I'm 64, retired, and live In south Ga. I'm married 25 years, and have 2 sons in their 40's. I guess I'm the "grandma" of the group!

Keeping you all in my prayers.... Karen

10-09-2007, 01:02 PM
Hi Karen :lol:
You most certainly may join our group. Even if you are not diagnosed with Lupus, it certainly sounds as if you are suffering from an auto-immune disorder. Whatever it may be, you are still a part of this family and you may ask any questions that you like. There are no "dumb" questions here. Every question that you ask is important to you and, therefore, important to us!
I agree that what happened to you was most likely a flare-up. We Lupies have learned that it is imperative that we pace ourselves, that we avoid exposure to the sun and that we make sure that we get recuperative rest. And all of us have had those days when we feel relatively normal, so we set out to accomplish all of those things that we were not able to get done previously. And, oh my...do we suffer for it later! I think that you, also, experienced that.
Unfortunately, the prednisone is one of the standard treatments for the inflammation caused by Lupus (and inflammation of the sac surrounding the heart is Pericarditis). Prednisone is the best treatment for the different inflammations caused by this disease. However, the moon face...the weight gain...the easy bruising...they are all common side-effects of Prednisone :?
It is very dangerous for you to change your Prednisone dosage without being closely monitored by your doctor! ESPECIALLY WITH PERICARDITIS!!!!! Tapering your dosage or changing your dosage or stopping your dosage can cause very serious complications and severe symptoms due to the fact the normal production of steroids by the body have been turned off. Please do not attempt this again without being closely monitored by your doctor!! In fact, many of us who are taking Prednisone regularly find that we often need a boost of Prednisone during periods of stress and/or flare-ups.
Remember that we are here to help you in any way that we can and we want you to know that you are not alone!

Peace and Blessings

10-09-2007, 03:06 PM
Hi to Saysusie...
Thanks for the info - it was the plaquenil that I briefly cut the dosage of, not the pred. My rheumy had already started tapering me on the pred. in Sept. to 15 mg, and then on Oct 1, I cut back to 10 mg. So far no pericarditis... OMG - I just realized - It was right after I did the first prednisone taper that I had that flare! I never made the connecton before. Thanks for making me think(':oops:') . That seems to be another problem - I've been experiencing the brain fog - I think my husbands's convinced I'm getting senile!

Has anyone on here ever made any connection between lupus rash and lichen planus? I was diagnosed with lichen planus about 6 years ago, after completing interferon treatment for hepatitis C. It's also an auto-immune disease, and it's sounds a lot like the lupus rash. It's not the same thing, but can easily be confused with out a biopsy. Its symptoms are the same, and I'm wondering if treatments for the LP would help the Lupus variety. - Ultravate (pres.) for the skin rash, and a decadron/nystatin compound (also pres.) mouth rinse for the mouth ulcers. Also my derma. gave me nystatin/triaminacolone ointment for the super-dry and cracked lips, I use it all the time and it works way better than lip balms. Lichen planus is the same as other A/I diseases, and goes in and out of remission, often induced by anxiety and stress....... just a bit of personal experience in case anyone might be interested.

I'm also curious to know if anone's made any connection between lupus and past interferon therapy for HCV?


10-12-2007, 11:42 AM
Hi Kadee;

Lichen planus is associated with the following autoimmune conditions: alopecia areata, vitiligo, dermatitis herpetiformis, pemphigus, scleroderma, primary biliary cirrhosis, autoimmune hepatitis, ulcerative colitis, thyroiditis, systemic lupus erythematosus (SLE), diabetes mellitus, and pernicious anemia. Lichen planus also frequently occurs with systemic lupus erythematosus as an overlap syndrome. Cases of lichen planus/lupus erythematosus overlap syndrome have also been reported to occur in association with a scarring form of alopecia.

Lichen planus is also reported to occur as part of Multiple Autoimmune Syndrome associated with Reynolds-syndrome. Reynolds syndrome is characterized by acral scleroderma, primary biliary cirrhosis, and Sjogren’s syndrome. In Multiple Autoimmune Syndrome, Reynold’s syndrome is associated with lupus erythematosus/lichen planus overlap syndrome.

When diagnnosing,, doctors must differentiate Lichen planus from eczema, psoriasis, the discoid rash of lupus, and granuloma annulare. When lesions occur in unusual locations on the body, diagnosis may be difficult. The lesions in lichen planus, however, are typically small and have a narrow border compared to granuloma annulare or the lesions that accompany infections. The presence of other autoimmune disorders (such as Lupus)in patients with the characteristic purple skin lesions suggests a diagnosis of lichen planus.
Peace and Blessings