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[A’s] initial treatment: Prednisone (up to 15 mg./day), Zantac, Plaquenil, Multi-Vitamin, Calcium Supplement
Flare:
Added Methotrexate, Protopic, Host of other "support" drugs (multi-vitamin, folic acid, leucovorin, Zyrtec etc.)
Flare: Off Prednisone, Methotrexate, Added Ivig (every 4 weeks for 6 mos. then as needed).
Current Status: Holding her own on Methotrexate, Prilosec, Folic, Multi-Vitamin, Zyrtec, Flonase, and now Singulair). We seemed to have found our mix of drugs for now!
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Leanna's Initial treatment: Prednisone, oral Plaquenil, Multi-vitamin, Major decrease in sun exposure and change to zinc oxide/more coverage sunblock
Off Prednisone
Flare: Topical cortisone cream for rash, Plaquenil increased, Protopic tried, not too effective for her
Off Plaquenil
Flare: Claritin, Topical cortisone
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At diagnosis: 30 mg of Prednisone, Zantac, 3 days of pulse treatment (I don't remember the dose), .2 ml/week of Methotrexate (we are now at .7ml), Folic acid,
Multi vitamin
We didn't do the Zantac very long, and added Nystatin we do as needed.
Added 4 months later: 100 mg Plaquenil,
[My daughter] has tolerated all of the medicine very well with no major problems. She had some sleeping issues for awhile after starting the Plaquenil, but that didn't last long. Our list seems short, I may be forgetting something.
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[L] has had many changes:
Initial 2001: Just 24mg Oral Prednisone
Up and down on that for 2 years. Down on the Pred and major flare.
Added: 8.5mg Oral Prednisone daily, 17.5mg oral Methotrexate weekly, 535mg Iv Solumedrol weekly, 7.5gms IVIG every 4 weeks.
Now 2005: 100mg Motrin three times daily, 8.5gm Oral Prednisone daily, 100mg Cyclosporine twice, 12.5mg oral Methotrexate weekly, 535mg IV Solumedrol every 3 weeks, 7.5gms IVIG every 4 weeks, 225gm Miralax daily, Folic Acid daily, Protopic daily, 100mg elemental of Fer-In-Sol daily, Calcium, Vitamin D, Multi-Vitamin daily
Soon we will be done with the Solumedrol. On that for 2.5 years. YIPPPEE one gone!
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Here's my current list...the whole 22 years is next to impossible to list, so this is as good as it'll get.
Methadone 5mL in am and 3mL in pm every day, Predinsone 3mg daily, Plaquinel 200mg MWF and 100mg T/TH/S/S, Imuran 1/2 tab alternating with 1 tab every other day, Reglan 10mg 2Xday, Pepcid 40mg 2Xday, Amitriptalin 10mg daily, Complete Multi Vitamin daily, Caltrate 600mg daily, Olux foam 1 X daily - pseuriosis
PRNs:
Tylenol W/ codine #2 & #3, Excedrin, Regular Tylenol
Side note -
I have chronic headaches and migraines as well as chronic kidney stones, so the excedrin and reg. tylenol are for the headaches. Sometimes heavy narcotics for the migraines and kidney stones. Not related to JDM from what we know. I also have extensive calcium which is painful on a average day and when in a flare even worse hence the tylenol #2 & #3.
It's a fairly complicated list of medications that changes every few months. I have to use weekly pill boxes (one for the AM and one for the PM). I have had soumedrol pulsings but am currently not on them. Working to ween off the predinsone with the use of Imuran. Only about a miligram every 6 mo- yr. I have been on medication most of my life, it's just a part of all of our daily lives whether we like it or not!
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[My son’s] initial medications in May 2003 (then 5 years old) - we are in the UK. Has never had any discernible skin involvement.
17.5 mg oral prednisolone, + calcichew D40 (vit) and Ranitidine (to settle stomach)
Weaned fully off prednisolone May 2004
Calcinosis appeared June - Sept 2004 (but no muscle weakness)
Sept 2004: Back on 20 mg Prednisolone (1 month)then down to 10mg
12. 5 mg methotrexate by subcutaneous injection once per week, Folic Acid
Calcichew D40
Currently: Weaned down to 8 mg oral prednisolone per day (and staying at 8mg for now), Methotrexate increased to 17.5 mg by subc inj once per week, 50 mg Azothioprine (imuran) added 2 weeks ago.
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