[hardcandy]

I know that lab results do not necessarily indicate one's level of disease activity, but mine are the best they've ever been, and, while my fatigue is not as bad as it's been in the past, so many of my other symptoms are here and, combined, are making me feel like garbage.

My ANA, for the first time ever, is NEGATIVE! ESR lower than ever, normal eosinophil count for the first time in several years...everything looks sorta perfect!

While this is pretty awesome news, and causes me to loooooove Plaquenil, it also makes me doubt myself and wonder, as I always do, whether everything is all in my head. I do have physical symptoms that I can't explain, like a low-grade fever and cough and extreme dry mouth for two months, ongoing mouth sores, and the aches on and off and fatigue and brain fog and migraines on and off, but I'm guessing there's no way I can be in a flare. Is this just part of my life now? Why wouldn't it show up anywhere in my bloodwork?

Where does one go from here? Have you ever had awesome bloodwork and still done a short-term course of steroids? I mean, even if I were suffering from bad allergies, I imagine that'd show up somewhere in my bloodwork. Could it be a virus or something?

My doctor (GP/PC) doesn't want to treat me for lupus because she's not a rheumatologist, but her office can't even get the rheumatologist's office to answer their phone or return messages, so an appointment is probably a ways off.

I'm glad I am in really good shape, but it doesn't help me feel any better physically.

Should I, like, try to get out and about now, be more active and not worry so much about resting away a flare? What do you all suggest? How do you handle such things, or what have you heard from your doctors in such a situation?

Thanks in advance for your knowledge/advice!

 

[hardcandy]

I've contacted my old rheumatologist in Los Angeles, but she's on vacation, so I can't get any input from her, but her assistant said it is still something that I need to take care of, even with the good blood work.

I'm going to try to find a different rheumatologist who is in my HMO network. In the meantime, though, do you ever treat yourself with steroids? I have about 20 5mg pills, and once, in the past, my doctor said it was okay to take them as needed when I was continuing to experience a flare. That was a year ago, though, and again, my bloodwork looks really good.

I don't want to feel icky like this for another week or two (or more) while waiting to see a new doctor! I'm not in terrible shape, and things could be much worse, I know, but I'm not able to do all the things I need to do, like find a job or even get out of the house much. Do I push myself? Do I try the steroids on my own? So confused! It makes me angry, too!

The good news, though, is that clearly my move back to the midwest has been good for my body so far, if I go by the labs. Getting out of my bad job and calmly settling in here seems to have been the right course of action, and that is such a relief to know. Maybe I felt worse in Los Angeles than I realize.

I'm gonna go search the forums for info on steroids and good bloodwork!

 

[Joandublin]

Gosh thats a difficult one to answer. I can fully understand your desire to try the pred and see if it helps.

I had a discussion about self dosing with pred in May this year with my Rheumy and she agreed to allow me to increase my dose minimally for 5/6 days if I felt the need. She also said that it is something that I shouldnt be doing regularly but only in, what I would term, unusual or extraordinary circumstances. I have had two such 'circumstances' since May

I did find that it felt kind of lonely making the decision on my own. Sort of damned if you do and damned if you don't I guess. However the pred helped me a little bit over a couple of bad weeks.

The only thing I would say is that, firstly, you already have permission from your old Rheumy to do this when you are experiencing a flare and despite your blood work you seem to be suffering at the moment. Secondly, you cannot contact anyone for advice on this and, thirdly, as a competent adult you should make the decision in your best interests.

If it were me I would probably take a 5/6 day burst and note any difference to how you are feeling. My Rheumy advised me to take 5mg for three days, 4mg for two days, 3mg for one day and back to 2mg (which Im currently only on at the moment as a maintenance dose). As you seem to only have 5mg tablets you might need to adjust the days and dosage a bit with a tablet splitter if you decide to give it a try.

Best of luck and let us know how you are

Take good care
Joan:rose:

 

[eagle55]

Hi Hardcandy, Do you live in Chicago or in a suburb. The reason I ask is because i live there for 15 years. i was first dignoised there. my doc was great this was back in 1985. i would probably be dead if not for my dr. back then they gave you 5 to 10 years. so i have had this for a long time. there were some great groups up there, i live in central il. now. . so if you have any question feel free to e mail me. i think i would take the prednisone but you really need to find a dr. soon. sorry i am getting a little spacey so i will sign off for now. but do keep in touch. this is a great site and you can get alot of adivise here take care and hope to hear form you soon. later sue

 

[greenhaggis]

Hi,

As Joan says you have permission already all be it a long time ago!

I think the only way to go is to take the steroids and get some relief, just remember to keep notes of when you started and stopped them to give to GP/Specialist. It does sound like you are suffering even if you dont classify it as major!

A couple of months back I felt really ill, had bloods taken on a friday by a nurse - on the following monday I saw my Immunologist who said bloods were okay. BUT I had a bad chest infection and my lupus was flaring also - went home with steroids and antibiotics prescribed!

Take care,

Lesley

 

[KidsPT]

One thing to keep in mind is if you take the steroids they can mask any positive bloodwork if you do get in to see a rheumy anytime soon. I had just gotten off prednisone when I first got in to see my rheumy so had to get repeat bloodwork after 6 weeks off prednisone to see if any labs came back positive. that being said, I would rather get some relief now, do the testing later and it does seem you won't be getting in to see the rheumy anytime soon.