Follow-up rheumatologist appt-Caitlin

I took Caitlin to her appointment earlier this week. Things seem to be going great despite how Caitlin's joints have been hurting. The rheumy said that nothing is swollen so there isn't anything to worry about at this time. Said her titers are not high enough to warrant more treatment. (I don't want more treatment anyways.) So, I was a little discouraged by her saying everything is "normal" and asked if there was a possibility of us being dismissed. She said no...and Caitlin needed to be followed until she turns 18 to see if any changes happen. Caitlin said even as the rheumy was moving her elbow, all it was doing was popping (and it was hurting) and the dr didn't seem to think anything of it. We did see a different dr because her regular rheumy wasn't there that day.

The only difference between this appointment and prior appointments was the dr seemed to take a note of "purple" arms??? I have no idea what she was looking at when she looked at Caitlin's arms, but she was going to run a specific antibody test. Most of her labs have come back already and everything looks pretty much the same. Her PT/INR?? test was off though and I don't know if this is the antibody test she ran. I was hoping to see some differences with her being on the Plaquenil, but the only real difference I see, is an increase in her WBC, even though it's still not normal. It seems like everything on her CBC (other than platelet & wbc) are right on the low end of normal, but then again...it always has been.

The drs keep saying...she LOOKS good, she LOOKS normal...well, I hope so! I think pretty much all of us look good on the outside, but we're screaming on the inside! (Not really the case with Caitlin, but she does have some pain that hasn't really happened before.) I guess I should just be thankful that it isn't keeping her from doing her activities. The good news out of this appointment is that she doesn't have to go back for 6 months! (Before it was every 3 months.)

Pauline:

My jaw dropped. Joint pain is a big deal and shouldn't be blown off like that. I've never had swelling in my joints either, but they hurt like hell. I had it in both elbows over a period of weeks and I could barely straighten my arms. It then moved to both shoulders, and then to both hips. This was before my diagnosis, but when I told the Rheumatologist about it, he prescribed Plaquenil at that visit. Red flag!

People would say I look good too, that's what is so frustrating. Although lately I've been hobbling around and feel so stiff I can barely move. I'm sure that must be noticed, but no one says a word.

The purple arms could be Livedo reticularis - was it mottled? I have that too. It's associated with APS, which would account for the PT/INR. She may be running APS antibody tests. Livedo can occur in normal people too, I've seen it on my co-worker, so might not be anything to worry about.

Did you tell her about Caitlin's eye problems?

Yes, I did mention the eye problems and she said that it is such a rarity that we shouldn't worry about it. I asked how often people should go for eye checks and she said either every year or every 5 years. Maybe that particular rheumatologist is very, very lax. She is from another country so maybe she sees much worse cases of pediatric Lupus. I am still keeping her August appointment so I will just follow through then.

I think the main reason she dismissed the joint pain was because she asked if her joint pain restricts her from her activities. I said no because she just ignores her pain and goes on. I think her interpretation of real joint pain is if it debilitates you from doing your normal everyday things. I disagree...I have a TON of joint pain (I think pred-related) and I just have to ignore it and move on or I would be in bed each day. That would be even worse for me because then I'd become really depressed. Caitlin would become severely depressed if she ever had to quit cheerleading, so she pushes herself over and over each day. She gets mad at herself when there are days she isn't performing at her best. She had try-outs for four days this past week at a gym that is one of the best in the world and the coaches were very impressed with her! But the last two days, Caitlin was pretty much in tears because she felt like she didn't do as well as she should have.

As far as her arms...I guess you could say it's mottled, but it was cold in there and I think most people get that when they're cold. I was reading something about the PT/INR test and hers was 1.0 (INR)was lower than the reference range while the PT was higher than the reference range. I read somewhere that the lower that test is, the higher the chances are for clotting, but then somewhere else, I read that 1.0 is within the normal range.

Yeah, I'd agree that if Caitlin is still able to perform in her activities, then she is probably doing okay. Unless she doesn't have full range of motion or she is complaining a lot, it's better for her to stay active.

Eye checks every 5 years? Uh, no. My eye doctor suggests I go every six months and my Rheumatologist makes me go at least once a year or she refuses to refill my Plaquenil.

What dose of Prednisone are you on now?

Im down to 20 mg every other day. My dr said that the prednisone should be helping, not causing my joint pain. She said if my joints are still really bothering me after im completely off the prednisone (which will be a few more months), then shr will refer me to an orthopedic dr. She put me on Cipro for a UTI that i didnt know I had (2nd time now) and prescribed me a cream for the terrible acne that I have. (really bad!)

I think I've gotten all Caitlin's labs back now. Dsdna is still positive, but dont know the titer. Prob the same as last time. The antibody test that they ran was glycoprotein for IGA, IGG, IGM. All are within the normal range. All showed 0.1 with the normal reference range being 0.0-12.0. Im hoping that the lower the antibodies are, the better it is?

Prednisone can help joint pain, but not during a taper! Sorry for the exclamation point. I would have said it with one if I were on the phone with you. It helps me tremendously but I am not coming off of a big dose like you are. Ask anyone here, coming off of it is rough. Did you feel any better at the beginning than you do now? If not, then a referral would be a good idea. Have you ever tried Celebrex or anything like that?

Good news on Caitlin's labs. Yes, the lower the antibodies, the better.

Glad to hear the lower the antibodies, the better!

Yes, I felt a TON better when I was first on the Prednisone! I was exercising everyday and I was able to get things done at home that I hadn't been able to do in a long time! I know that a taper can bring on joint pain so I just ignored the dr's comment. She's a good dr, but I think sometimes they just don't know what to say at the right time! My dr told me to start taking Tylenol Arthritis to see if that helps. I haven't started yet so I may try that and see if it can get me back into exercise mode! (I have an elliptical at home and I really can't do it right now with the joint pain.)

My guess is that since most doctors have never taken it, they just don't know.

I hope the Tylenol helps!