polymyositis life expectancy

Guest over a year ago

Hi,I am 77 .Had disease since 2010.Take 2000mg Celcep daily IV Flebba gamma every a weeks,.Actonel EC Combi D for bones .Bone density has increased by 5%.Legs collapse without warning ,just happened again this morning ,just putting trousers on .Hurt right ankle ,but have to keep going .

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Guest over a year ago

Indeed, we have to keep going, not a lot of options out there! I've not tried any meds of yet. I'm fearful of side effects being worse then the disease . . . and stay away from stairs!
hang in there!

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Guest over a year ago

I have never had any side effects from any medication that I can recall.

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Guest over a year ago

Hi there,

My father, who is now 58, has been living with this disease for nearly 10 years. He's now using a walker to get around and struggles with frequent falls. Can you tell me what kind of medication your husband is using? I'd love to learn more about his exercise regimen. My father exercises almost daily, but he can now only do so in the pool or on an exercise bike. He has tried some experimental treatments with little to no improvement. I'm trying my best to find more alternatives for him. He's just so young still. I know he has a lot more life to live and would love to get him more mobile again.

Many thanks,
Sarah

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Guest over a year ago

i see this is an old post. if you are still on this site, when were you diagnosed and do you take meds for it?

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Guest over a year ago

Hi Sarah, I am new to this site ( not the original user that you responded to), however I can tell you that I was diagnosed earlier this year with Dermatomyositis. I do not, though, have any of the skin affect. Just leg, arm, trunk and throat muscle involvement, along with the exhaustion that accompanies it. I do also have other auto-immune diseases. Sjogren's and RA. My Rheumy put me on CellCept 4,000mg daily. It worked very well for everything except the throat muscles. I was still having great difficulty swallowing. So he added 30 mg of Prednisone. That helped a bit, but shot up my blood sugar and blood pressure. On 10/31 I will be starting IV infusions of Rituxan. Two to begin with, two weeks apart. I am dreading having to use this medicine, but I was really dreading the CellCept also and, other than the throat, it was a great help. I am 54 years old. I hope that this is helpful. Good Luck to your father! Kerry

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Guest over a year ago

do you get scared? i do. i am 57, pretty soon i will be unable to use my arms. i am single and not sure what to do. i also have celiacs and am afraid to eat other's food. im feeling a bit desperate at times actually. i am so tired, getting groceries is getting so hard. i'm scared. do i call hospice, and when? how do we know?

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Guest over a year ago

I do get scared, definately. Fortunately I am not single, and my husband is very understanding. I am sorry that you do not have more help in taking care of yourself. When I was first diagnosed with RA and Sjogren's I was still single and it is very hard to do it all alone, I know. I don't know what your financial situation is, though I would guess not great. It is very difficult to work as these things progress. If possible, I would recommend some form of Home Health Care. Maybe they can do some shopping for you, perhaps some food prep so that meal prep is shorter and easier for you. Maybe light housekeeping. Also, just having someone is house with you on occasion can be very helpful and uplifting. This is all so isolating. I haven't been able to work in many years. Are you on any meds? They are not working?

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Guest over a year ago

Hi,I don't get scared, just frustrate myself ,thinking about things that I believe I can do & then say ,hang on ,am I going to cause myself more injury by trying to do these things .These things are climbing into my Bobcat ,skid steer loader & trying to clear up around our property. I built a set of stairs so that I have a better chance of getting in to my machine but when I get to the top step ready to take next step into Bobcat ,I find it hard to take the final step & so retreat slowly& look for something a bit easier to do . I am lucky that my wife is my best friend for 54 years & we both come first for each other . The first 4 years I could do things that I have always done ,but last 2 years I have had to change my ways ,due to weaknesses & pain.I need my right knee replaced but having very little thigh muscle ,the Professor who looks after me says it's not on the cards yet . Our medical benefits scheme over in Australia is great .My wife & I have what is known as top cover.It's not cheap but we would not be able to have all the treatments if we had to pay for them ourselves .My Flebba Gamma infusion that I have every 4 weeks ,costs about $14,000 a time .I am due to see the Professor next month & he tells me ,there is another treatment that he can try .After I see him I will let all know what it is .Keep trying ,at the moment it's all we have .

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Guest over a year ago

Thank you for sharing. I don't feel as alone now.

It is a dream we all have to have a loving marriage that lasts. You must be a good man.

I have chosen for now anyway, not to use Western Medicine. I am in the US; our medical is terrible, I pay every month for medical; it is mandatory to have it, but I can't use it because the co-pays and extra costs they don't tell you about are more then I can afford.

Thankfully we have Hospice who helps people to die at home peacefully at no extra cost. how generous of them :) I hope not to need any of them.

Please, tell me more about the Flebba Gamma, I have never heard of it.

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Guest over a year ago

Hi , again .Misspelt (Flebogamma ) one word .I was on another immunoglobulin ,can't think of name now .My Professor put me on this at what they call 5% .,for about a year & then one year ago changed it to the maximum he was allowed ,10% .At least I have never felt sick in the 6 years that I have had this disease .

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Guest over a year ago

The immunoglobulin I was on before was Octogam ..I'll get it right yet but I'm not perfect ,but close .If your as perfect as me ,then you tell lies also .Lol.

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Guest over a year ago

thank you, good to know . . . "At least I have never felt sick in the 6 years that I have had this disease". I will reconsider my options.

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Guest over a year ago

How are you doing now. I was just diagnosed with Polymyostis yesterday but the neurologist. I go back to my rheumatologist on Friday for a game plan. Right now I have mild Polymyostis. I am curious how you are doing. I am 46 years old.

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Guest over a year ago

What if you got diabetes?

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