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Posted By : nevets - 12/19/2016 8:06 PM
I have just been diagnosed with polymyositis and have been put on 80mg of prednisone per day. How many days will it take before i start to see relief from the symptoms of this disease? It has completely lowered my quality of life. I have difficulty walking, getting out of a chair, combing my hair, putting my clothes on, and just walking up the stairs of my apartment. When will I see one little sign that the medication is working?

Posted By : Lynnwood - 12/19/2016 8:34 PM
That is a LOT of prednisone, which is used to lower inflammation. It really depends on how much inflammation you have how quickly you will start seeing results. This question is better answered by your Dr who has a more complete view of what's going on in your body and what results s/he expects.

One thing to note, if you are on that much prednisone for very long it changes your metabolism and you will start gaining weight. If you LOOK at white carbs you will gain weight! So watch your diet and eat healthy.

They will probably put you on calcium supplements, as it is really hard on the bones. Also it will give you a lot of energy, and mess with your ability to sleep. You may need a sleep aid of some sort to get deep, restorative (healing) sleep.

Best wishes
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2000
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

Posted By : nevets - 12/19/2016 8:52 PM
Thank you for the reply. The rheumatologist has put me on generic prednisone for 4 weeks and my next appt with him will be 3 weeks after starting this new medication. Relatives have given me horror stories of prednisone. However I'll deal with the side effects if it can improve my quality of life just a little. Your suggestion about diet is very helpful. I'm over 50 with a heart condition. I can't afford to start gaining weight to complicate things.

Posted By : Lynnwood - 12/19/2016 9:56 PM
You also can't afford to be missing sleep!! We need sleep to heal!!
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2000
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

Posted By : Butterflake - 12/19/2016 10:47 PM
Welcome to our forum nevets. I'm so sorry you are having such difficulty with even simple daily living. Lupus is my primary disease and I've been in your situation many times (including crawling on my hands and knees up the stairs) so I understand your fear, anger, depression, etc. Your health will improve!

Often when a rheumy starts someone on high doses of prednisone it stops the inflammation within several days, but if you don't feel better soon call your rheumy. There are lots of options he can try.

Listen to Lynnwood about rest and diet. Steroids make me very hungry and when I feel awful it's almost impossible to keep me from foraging. Currently I don't have much energy, but I'm sending you all the positive energy I can. Love, Butterflake
SLE '05, Sjogren's, Fibro, Raynaud's, major depressive disorder, CVID (Common Variable Immunodeficiency), Hypertension, Osteoporosis, CNS problems, GERD, angina, 1st stage kidney disease. Many meds: better living through chemistry

Posted By : nevets - 12/20/2016 12:30 AM
Thank you for the encouragement. I also had to crawl up a flight of stairs to get to my apartment because there were no hand rails. The super has now installed handrails to help me. However I'm looking at a positive outlook that the prenidsone will give me a better quality of life. I'm hoping that with PT and the meds kicking in within a week things will get better.

Posted By : Bsime - 12/20/2016 9:28 PM
I have had polymyositis for 11 years and had an extreme case which was difficult to treat. Hopefully yours will be easier to treat. Like all autoimmune diseases PM can be mild or extreme.....mine was extreme and I lost 40 lbs of muscle in a week which left me fighting for my life, quadriplegic with a feeding tube. IVIG saved my life and physical therapy gave me my life back. Today I live an active life despite being in my 70s and went downhill skiing today. There is hope even in the most severe cases.

It is normal to treat with high doses of prednisone but usually another prednisone sparing drug is added....like azathioprine or methotrexate and there are others. Early diagnosis and aggressive treatment yield the best results but PM can be difficult to treat. Also, treatment is a long term proposition although some of us go into remission but there is no way to predict that in any individual case. I have been in remission for PM since Jan 2006 but it is lupus that has been giving me trouble over the past 3 years.

The Myositis Association made a video of my patient story because it was so hopeful and it can be viewed on YouTube. Just search in there search bar with my name.

TMA also has a community forum and you will find others who can help you. www.myositis.org There are also TMA support groups in many cities. I lead one of them in the Chicago area and you can find out if there is one near you on the TMA site.

Bill
MCTD (SLE Lupus, polymyositis, scleroderma). Diagnosed 2005. Kidney, liver, GI tract, dysphagia, raynauds, barretts esophagus, quadriplegic in 2005. Recovered and now active in downhill skiing, golf, hiking. Meds: amlodipine, benezapril, omeprazole, potassium, folic acid, vitamins, maxide.

Remain Optimistic and you can overcome.

Posted By : nevets - 12/21/2016 11:00 AM
Thank you for telling me your experience. Since the doctor has finally diagnosed the condition I've been feeling positive that the prednisolone will help me. Unfortunately I've been on it for almost a week I have not felt any positive or negative effects of the medication. I guess it takes time.

Posted By : Bsime - 12/21/2016 11:37 AM
Every case is unique in progression, response to treatment, and severity. Most respond to prednisone in a matter of months, others do not. I did not and it took IVIG after 6 months of pred to save my life. Think of treatment as long term. It can take years of treatment to get the immune system under control and some will need treatment indefinitely. It is not like a virus or bacterial infection that will either run its' course or respond in a set number of days to treatment.

Hopefully your case will be controllable and you will eventually be able to get off meds. I was on pred for 6 years and azathioprine for 5. PM has been in remission since Jan 2006 but lupus has flared in recent years so I have taken steroids several times to help that and might have to take something else.

Dealing with PM or lupus is a marathon not a sprint and each of us is different. Suggest that you register on the TMA site and carry on the conversation there. They just changed the site so it does not have many posts since they did not transfer the old posts to the new site.

Bill
MCTD (SLE Lupus, polymyositis, scleroderma). Diagnosed 2005. Kidney, liver, GI tract, dysphagia, raynauds, barretts esophagus, quadriplegic in 2005. Recovered and now active in downhill skiing, golf, hiking. Meds: amlodipine, benezapril, omeprazole, potassium, folic acid, vitamins, maxide.

Remain Optimistic and you can overcome.

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