Hi Beth85, Just a tip.. I always get a copy of my blood work mailed back to me. I paid for the tests results. I keep copies of each time blood work is done so I can see the progression of what is going up or down in scores. I particularly watch kidney scores like creatinine and BUN/creatinine. Office staff have so many patients on a daily basis. You can be trusting that scores are normal, but always verify with seeing the paper work. This DM/PM can change at any time.

I look up my blood work scores on google too. I had a high complement C3 last time. I learned from looking up my scores that a high complement C3 is knocking on the door for type 2 diabetes. Disease management is the name of the game with DM/PM. It is so important to watch those scores and compare this months scores to the past. I ask the doctor about any scores where I have questions. Remember the doctor is there for your well being so ask questions.

A flare is never normal blood work. It is true that it might take some time for a flare to show up on blood work, much like UTI infections do not always show up right away, but a flare will eventually show. DM flares will have elevated liver enzymes of ALT and AST. Other scores like aldolace, sed rate, LDH, etc.. might elevate too. CPK does not always elevate in DM but usually does elevate with PM.

I totally agree that a Paxil withdrawl might feel like a flare. Nerves can hurt. I would ask the doctor about a possible CPK trigger from brain, and kidneys as a consideration in lowering dosages. I think you are correct to keep in contact with your doctors. I hope a good PCP will be helpful until you see the new rheumy.

I hope this helps. Best Wishes.

When I was nearly unable to move from the jaw downward, my CK and CRP were barely elevated, but my Sed Rate was very high. After diagnosis and during the course of treatment, my neuro came to the realization that he had to treat me clinically, because my blood work did not always paint an accurate story. If your symptoms continue to worsen and you can't fill a cancellation spot at your doctor's or new rheumy's office, then be sure to go to a walk-in clinic, or even the ER if necessary. Please keep us informed of your situation, and best wishes to you.

I have been improving. My arms and legs only hurt a little after continuous exertion (ie two flights of stairs or folding a load of laundry). Since it's getting better I'm guessing it's the paxil. I'm going to stay at this dosage til I see the psychiatrist next week. Maybe by then I'll be fine.

Hi Beth. Follow your instincts. Flares can take a few weeks to show in your blood results. How you feel with this disease is vital and hitting a flare hard and fast prevents it being a problem. Do see your new Rheumatologist anyway because even if you are well a Rheumtologist should be seeing you at least once a year. Hope it all goes well. Autumm

thanks autumn. And yes, I will keep the appointment with my new rheumy. It can take a few weeks to show in bloodwork? Good to know. Having never had one I don't know how to tell that I do or not. I'm guessing it's the paxil becuase my muscle pain is improving, but I suppose it could be improving because I'm resting more. IDK. Maybe I'll call to get on the cancellation list to see if I can see a rheumatologist sooner.

Hi Beth. Good idea. You have nothing to loose and if it's a flare you get it early and treat it early and you get better more quickly with less damage. Do let us know how it goes. Autumm

My knuckles are turning red. :( I need to see a rheumy ASAP. I guess it really is DM. And of course it's 5:00 on a Friday.

Sorry to read this Beth but you will have caught this early. If you can't get a fast appointment with your Rheumatologist ask your family doctor to give you enough prednisone to control the flare until you get to the Rheumatologist. Autumm

Beth, When the seasons change I seem to be more prone to getting a flare.

Red fingers especially around the fingernails is a good sign that a flare might be in progress. Do trust your instincts. Autumn is so correct to see your PCP if the rheumy is unavailable. I will put in some prayers that you get proper treatment. Do keep us posted. Best Wishes.

Thanks! Tricky part is both my rheumy left the practice and my PCP is leaving. I just switched to a new PCP last week. So, monday I'll be calling her and seeing if I can connnect with a rheumy in their network soon or see her, or both. I'm sure it will work out fine. Just complicates things to be in the middle of switching.

Hi Beth. Try not to worry. What worked for you the last time should work for you this time so guide your doctors. Autumm

Saw a rheumatologist today (yay)! He doesn't seem to think it is DM because the slight rash I'm aware of isn't enough for him and my muscles are strong when he tests them and I can still get out of a chair w/o my arms ... it's endurance that's the issue. Maybe I should have gotten in and out of the chair 15 times, lol.

Anyway, running blood tests to be sure but if they are normal he's not going to want to treat. He will run them again in two weeks and see me in 4. I just don't like the idea of waiting for it to get bad enough before treating, but I understand, this doctor just met me and prednisone is no drug to mess around with. He is okay with my going back on hydroxychloroquine and I think I have some left cuz I just stopped that about a year ago.

Hi Beth. Keep on top of t and call him hen nothing changes. Best wishes. Autumm