Polymyositis & Dermatomyositis Support Group

Hi Deb,
My daughter was formerly treated with plaquenil for what was thought to be SLE, and it really seemed to help her rashes a lot. We later found out that she doesn't have lupus, and her new rheumy took her off the plaq. Now, she is just beginning treatment for DM. Her rheum has her on a pretty low dose (15 mg) of prednisone until after the muscle biopsy results come back, and then she plans to add methotrexate and taper the pred as much as possible. When we've talked to her current rheum about plaq, she doesn't seem to want to put her on it again. I believe she views it as unnecessary at this point with the med plan she has in place, but we know it DID help her in the past.

I am currently on Plaq myself for Mixed Connective Tissue Disease, but it takes a few months to really get into your system enough to know how much it's really helping. I have seen improvements in my pain, and will probably opt to stay on it.

So, for my two cents, my daughter and I both have had positive experiences with it. Sounds like you have a good team of drs. at a teaching hospital. I'll be interested to see the treatment plan they come up with for you, and look forward to reading future posts from you.

Welcome to the boards!
Teresa

P.S.....I forgot to add that my daughter has also been plagued with eczema all her life. Makes it hard to distinguish when the DM pops up. Prednisone does wonders for eczema and hives, too.

Hi Deb. I've never been on plaquenil, so I can't help you with that topic. However, I wanted to reply as it sounds like you're in my area (Tampa area). I never thought about going to USF for a possible 2nd opinion. I've been under a rheumatologist's care for 7 yrs now and we've hit a brick wall in my treatment. A USF evaluation just might do the trick! Thank you posting and giving me this possibility
Thanks,
Linda

Thanks for the replies!

I start the plaquenil today, so maybe by the time I'm off pred, it will be getting started. I was on pred before years ago for the AD. Love the results to the point where I didn't care about the side effects, but if there is something better now.... The plus side is my AD, which was officially in remission, is looking even better now. I was on Protopic for that.

FLsunshine, I'm in Plant City. We should get together sometime. USF is wonderful, but you have to be sent there by another physican with most of the tests done and a working diganosis. I lucked out. I've seen Fenske since 1987 for the AD. He got a couple of papers out of me over that! I'm even in a text book somewhere.

Fenske only now sees continuing patients or cancer patients. There are some really great docs up there though. Depending on the specialist you need to see appointments can take 2-3 months to get. But it is worth the wait!

My daughter is allergic to Protopic of all things!!!

Does she do okay on other immunsuppressents?

The Protopic burned like the devil at first but within 3-4 days of a flare, it would clear it up. One of the clues that something was up this time was that Protopic didn't help.

Deb,
She has never had an immunosupressant, but will probably start methotrexate very soon. A lot of the creams have always burned her skin, but the Protopic caused a real deal allergic reaction, and she broke out in hives from head to toe. She had to stay off all her steroid creams for the last several weeks while her DM was so bad (no pred either) in order to prepare for the muscle biopsy she had about 1 1/2 weeks ago. As soon as the biopsy results are in, the rheum plans to add the methotrexate to the mix. We've talked a lot about Plaquenil to her rheum since it worked so well for her in the past, but her dr. doesn't seem to want to prescribe it at this point since the prednisone is bringing rapid skin relief right now. That's the only thing about the Plaquenil; it takes quite a while to get into your system (maybe 2 months or more) in order to tell if it's working. I'm just not noticing the effects myself, and I've been on it about 2 months for my MCTD. On Tuesday, I'll go for a plaquenil eye screen with an opthalmologist. I'm told they will test my field of vision and it will take about 2 hours.

Wow, good to know about how long the vision screening will last. My rhuemie wants me to wait until I'm off the preds to make an appt. The derm may override this. I just thought it was a normal opthomaligist screening.

Yeah, I had to have the pre screen to make sure there wasn't anything already wrong with my eyes before starting the plaq. I have to have check ups every 6 months. I still haven't been able to come off of my prednisone. I've been on 5 mg with 17.5 mg mtx for about a year now. Every time we titrate the pred down, I begin to flare. I actually was put on plaq for sjogren's. I am on the mtx and pred for the polymyositis. I haven't noticed anything either way. My cpk is well in check though...that's always a good thing!!