I haven't posted here in a while but have been reading posts which help a lot. I went to the rheumy on Monday. I've been on plaquenil since May but haven't seen a lot of improvement. He also has me on darvocet for joint pain (knees, elbows, ankles) and ambien to try and get some sort of sleep at night. He did more blood work and I asked him if he was going to recheck my ANA level as the last time it was >1:126 which he said was high. He said he wasn't going to retest because once your ANA is positive it doesn't change. I thought that those levels can vary. Is this true?
I also told him I've had 3 UTI's since August and everytime I am out in the sun I get a rash on my face and a burning pain feeling like my face is on fire. Does anyone else experience this? I also have a lot of itching and break out in hives on my hands, elbows, neck, stomach and feet. I also have severe Raynauds in my hands and feet, I can't even take icecubes out of the freezer and I wear socks all the time! He had me on procardia for this but it didn't seem to help. I live in Florida and being in air conditioning all the time does not help. I'm the only one at work with a heater running! I experience some good days with minor joint pain and headaches then overdo it and suffer for days.
I hope everyone is having a good day.
You are right! The ANA levels can change. They can go from positive, to negative and even go high positive to low positive. Every day can be different with an ANA!
I do understand the rash that you have too.. I get the same thing. I absolutely hate the summer because of the rash- I am up in Canada so I get a break from it in the winter and get the non-Raynauds friendly snowy conditions! So I can't win. Even the hives I get too, its like an allergic reaction.
Anyway, hope this finds you well. You are correct with assuming that the ANA can change. It sure can!
I can also attest to the fact that ANA levels can change. Mine have been different each time they were tested in the past 2.5 years. They have gone from 1:160 to 1:320, and this last time they were 1:1280. I have not been diagnosed with anything, since my other bloodwork has come back normal in the past, and my symptoms have been minor. I have occasional minor joint pain, frequent tingling in my hands and feet, and occasional numbness in spots on my legs. In cold weather, my hands and feet get very cold and I have a hard time warming them up, but I don't get the red, white and blue of Raynauds, so I'm not sure about that. I've had a few rashes on my face around my eyes, but not the distintive butterfly rash.
Have you received a diagnosis of lupus? I am going back to the rhuemy on Tuesday, my GP wants me to go b/c the ANA was so high this time. Yesterday I was told by my ENT that my CT scan showed normal sinuses but I have arthritis in my jaw (TMJ). I don't know if this is related or not, I just wish I could get some kind of diagnosis!
Thanks for your reply and information. I knew that ANA levels can vary. I see my GP next month and going to talk with him and see if he can see me instead of this rheumy. Because of my insurance, I am limited to rheumy drs and there are only 2 practices in this area.
I was diagnosed in April and hoping the plaquenil will work soon. This weekend I've had terrible muscle and joint pain in my hands and knees and ankles, and if I could just sleep at night I might feel better.
I am glad I found this site and will post again later. I also work full-time and go to school part-time. I did change my hrs and work till 4:00 so I can come home and take a nap. I have learned the importance of resting when we are tired.
Hope everyone is doing well