Whine warning!!!
I'm just needing to whine a bit....I have been feeling so exhausted since well before thanksgiving, joints hurting, muscle aches, weakness etc... I saw my Rheumatologist in early December, she ran all the usual labs, gave me samples of Volteren cream to try, talked about trying Methotrexate (which I am hesitant to try). I had pretty much convinced myself to try it though but wanted to wait on the labs to get back assuming at least my sed rate would be up again....Well I got them back and everything is in range except my ANA (which is always positive). I don't feel right starting a chemo type drug when all my labs are looking good. The doctor had told me I could call to get in earlier if I wasn't feeling better and wanted to start the Methotrexate....If my labs were off again, I would have started, but now it is kind of hard to justify. Just sooo tired of all this!
Sorry for the whine, I will get over it and keep pushing through, that's what I always do! Glad I have some friends who understand and I can come to, because my family and friends without any kind of chronic illness wouldn't understand at all. They would just tell me to either call the doctor and get on with it, or it can't be that bad if the labs were OK...Sigh...they don't understand my dilemma/decision.
Nancy
My labs are always normal except a mildly positive Ana. I am taking plaquenil, and it helps. Why not start there? Then graduate to the methotrexate if the plaquenil doesn't help....?
They say the bloodwork doesn't necessarily correspond with symptom severity.
Nancy, I agree with lolo
If you have a doctor willing to try a drug that works for so many, you can give it a shot.
If it doesn't help or has problems, you can stop, I'm sure.
I have had a week of relief from pain and fatigue due to taking a pulse pack of prednisone for extreme allergy symptoms.
It has been a blessing to feel OK and have energy!
I imagine it will fade soon. And doubt if I can get prednisone again easily and am not sure I'd want to.
But taking a chance on feeling better is worth it, I think.
Of course, you always have to follow your own heart and ideas. I do agree with that, too.
Keep us posted.
Hugs
Elaine
Thanks lolo and Elaine,
Lolo I am already on Plaquenil, have been for several years so methotrexate is kind of the next step. I've been hesitant to start it though because it is a much more serious drug with more serious potential side effects and complications. I know it is a old drug with a long track record and considered relatively safe, but scary just the same.
I am still kind of hoping all the exhaustion, fatigue, joint pain will settle down on their own if I wait a little bit, but it's been since before thanksgiving now...Why are my labs better now than they have been in years, but I am feeling worse???? Crazy disease or crazy me! LOL
Nancy
hello. I take methotrexate once a week and it tears my stomach up. I take it wednesday night, wake up thursday morning with a headache, then by noon have stomach cramps and diahhrea for the entire day. by friday just mild cramping and gas. i take plaquenil everyday.
I have heard that methotrexate by injection spares your stomach/bowels.
I would prefer not to take it but my rheumatologist insists.
eye2dry
My labs are the same as you- positive ANA always, but negative everything else (except lately CK was high, so I'm getting an EMG to check out my muscles).
But a lip biopsy showed I have Sjogren's, and just within the last week, a skin biopsy showed I have scleroderma. And I would think my symptoms are considered moderate.
I agree that if you're feeling bad, you should probably try something. I was told by the dermatologist that methotrexate would be good for me (plaquenil didn't work), but I'm nervous to try that, too. I'm waiting to see what the rheumatologist says first. I guess there really isn't any other options, though, except a biologic like Remicade, which my husband wants me to try, but the rheumy has to prove that you've tried the other stuff first to no avail before the insurance company will let you try the Remicade.
Labs are only as good as the foks interpeting the results and the actual tests that they run. Frankly, I don't think they really know what tests to run for us, they just guess or run "the basics" for whatever they THINK we have.
I understand they can't run every single test there is but I sure wish there was an easier way for them to KNOW what tests to run. It took me 6 yrs for them to figure out what tests to run to diagnose me with Sjogrens. ::)
MTX by weekly injection is definitely the way to go. It bypasses the stomach and means I avoid most of the nausea. (still causes a killer headache on occasions though!) The injections come in pre-loaded syringes which you store in the fridge. They are virtually painless and easy to administer for arthritic hands. I'm so glad I changed over from the tablets. For anyone considering MTX, I would say it is a much more acceptable way to take it. I can also manage 2.5mls less as it is more effective at a lesser dose.
I am new at this and still learning about it all. At the beginning of 2011 I was told I had SJS but not RA. During the year I had a lot of confusion regarding what different Dr's were telling me. I finally decided to go the University of Chicago RA Dept for a full analysis. They say I have RA but they dont believe i have SJS except for dry eye. I have started on MTX for about two months and happy to say no side effects. I am taking 2.5mg once a week but now they increased it to another pill ( now to 6 pills )
It takes years for the lab results to catch up to the symptoms. Just because your lab results come out clean doesn't mean anything at all.
Quote from: Pisces24 on January 15, 2012, 06:11:26 AM
Labs are only as good as the foks interpeting the results and the actual tests that they run. Frankly, I don't think they really know what tests to run for us, they just guess or run "the basics" for whatever they THINK we have.
I understand they can't run every single test there is but I sure wish there was an easier way for them to KNOW what tests to run. It took me 6 yrs for them to figure out what tests to run to diagnose me with Sjogrens. ::)
My first tests for SJS were a huge pack of blood tests that my PCP had on his computer from a medical informatics program that matched symptoms with blood tests. Out of all of them, all I got were a fairly low ANA and SS-A, no SS-B. There was no "sed rate" and no CK (or CPK), information which I now wish I had.
In the muscle weakness group, if there's a normal Aldolase and a normal CPK, it's hard to push for more "refined" tests -- at least I think it would be.
Knowing what tests to run, to begin with, begins with what you report to your doctor (or request?), and with what the doctor needs/wants to know, in order to treat your illness.
You can and should request any test that seems to have been ignored or overlooked. That said, I should follow my own advice and ask for a sed rate, and for repeated sed rates.
Soycoffee
I dont feel my labs match my symptoms most of the time. When Im feeling at my worst, my levels are better in everything..then, when im feeling
half way decent, they are high? are you kidding me?
You might want to try Imuran. That worked great on me for awhile until I developed severe esophaguel yeast (I have chronic systemic yeast).
The biologics have a whole other set of problems. Ive been through Rituxan a few times and really didnt notice any difference, except it left
me with some nasty side effects and my fatigue got worse. If your only have some arthritis issues, I think the biologics seem to work better?
Gursie