Polymyositis & Dermatomyositis Support Group

Polymyositis (PM) is a type of chronic inflammation of the muscles (inflammatory myopathy) related to dermatomyositis and inclusion body myositis. The inflammation is predominantly of the endomysium in polymyositis, whereas dermatomyositis is characterized by primarily perimysial inflammation.

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Buttercup-Kitty 01/02/2013

Hi Everybody...Meow,

Thanks lexisgirl, ShawnaN, KimD512, nanny 1611, and trpt 1 for all your tips/advice. Love & Nose Kisses to you all...Purr.

After much prayer and seeking advice from long-term friends, and family members, I have decided to try and get off Dexa. I'm also taking 100 mg Tramadol (50 @ Bfast & 50 @ Dinner) per day and 400mg of Metaxalone/Skelaxin (1/2 800 pill) per day at lunch. I'm getting very good pain control with these two meds, but the dang Dexa keeps adding at least 80 points to my FSB. HISS! It's like this...my FSB is 123. I eat, and take Dexa. 2 hours later, I test and my reading is around 230....Yikes!

I am currently in remission from Poly. As of Jan 2, I'm down to .75 of Dexa 1Xday. As it is a very low dose, I'm not too worried about withdrawal. I have decided to try and keep Poly under control with only the Metaxalone/Tramadol combo.

Anyone ever done this? All advice welcome.

BK

autumm 01/02/2013

Hello Buttercup. Good luck with the tapering. I am assuming Dexa is a steriod. My rheumatologist tells me the idea of taking Azathioprine,Methotrexate or other steriod sparing drugs is to get off the steriods and to maintain the poly with these drugs only. I know you will have to take it very slowly to reduce the steriod and remain well. Best wishes. Autumm

Buttercup-Kitty 01/02/2013

Hi Autumn,

Thank you so much for your reply. Dexa is Dexamethasone, a very potent steroid. It did help put me into remission from poly, but now i think it has become a toxic med, hence the high blood sugars. So far, I'm feeling okay without it, but my last dose was only lunchtime yesterday. So, there is probably still a bit in my body.

Thanks again for your encouraging words.
BK

deleted_user 01/02/2013

To make it even slower i would take it every other day for a few then every third day and then stop. The second day for me after tapering is always the worst and if take a bit more that day i can then decrease without misery. I totally understand why you want off it. If it does not go well get your Hemeglobin A1C checked for a range over the past 3 months of sugar levels. I am working hard to keep mine low too. I added Chromium 250 mg bid to my supplement list and it is helping keep the sugar levels lower. The steroids pull Chromium from the body and it is important for glucose regulation. My dr. suggested 500 Micrograms am and pm for that. Best of luck to you.
Let us know how it goes...
Shawna

deleted_user 01/02/2013

So i found a calculator for Dexamethasone vs. Prednisone and 0.75 Dexa equals 5mg of prednisone and it hink that after a long course (longer than 3 months) that is too fast to just stop it... I would definately talk to your health care provider and find the fastest taper that makes sense to you. A few days of high glucose readings is better than a flare of Poly for sure!!! It is a risk benefit thing and you need to do what is best for your body overall.
I do however totally understand your deep desire to be done with it!!! I too an there. I got down to 4mg and then flared and back up to 24 mg. With the chromium i have not had the big up swings in glucose and my HA1c is good so far 3 months into it...

Buttercup-Kitty 02/02/2013

Thanks, ShawnaN for your advice. You were so right, and I was so wrong. I felt too confused to read your replies until today, (Sat 2/2), and I almost went into adrenal shock doing it My Way. Stupid me.

Long story short, I saw my doc 2/1, and he put me on 10mg Predisone. My CPK is 1000, so I'm on this dosage for at least 6 weeks. At least my head is now clear and I can think straight.

I will never take Dexamethasone again! It was wicked. 26 times more potent than Prednisone!!! I never knew that before I was hooked. I'm being more careful and informed about the Pred.

Any advice on how to overcome nausea before meals?

Love To You and All...Meow
Buttercup Kitty

deleted_user 02/03/2013

Oh Buttercup, i am so sorry, adrenal fatigue is deadly, and nothing to mess around with. So glad you were able to see your doc.
Slow and steady wins this race. Dexa at .75 sounds so low it is tricky, and for some pred is better to work with.

Sorry the Ck is up but you have a new plan.
I am taking two supplements to keep my glucose down. There is research that Steroids deplete our body of Chromium.

Chromium 250mg AM and PM
Biotin 8mg AM and PM

My Hemoglobin A1C and my fasting Glucose have come down nicely. It took a few weeks, but i went from 5.3 to 4.8 on the Hemoglobin A1C which is a test for how your glucose managed over the past 3 months. and Those three months i was on more steroid than usual. 30 to 20mg. so a good level all around.

Might be worth researching, and asking your docs. I have taken them now since August 2012 and am very happy with my bodys response.

Good luck to you, Shawna

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