Help please questions - Myositis Message Board

vonboo · 03-24-2007, 01:57 AM

Hi this is my first post to this board. So a bio is in order.

I have been recently been diagnosed with Polymyositis but I am not on any treatment right now. I have a follow up appointment with my rheumatologist in April and I want to know what questions to ask.

I am no stranger to doctors and have been misdiagnosed in the past. In 1996 I had a DVT and arthritic symptoms and they said I had Lupus but then 1997 said I didn’t. Then it was discovered that I have Factor V Leiden which has been confirmed with genetic testing. This is a blood clotting genetic disorder hence the DVT. I was on blood thinners for about 7 months but not now.

During the past 10 years I have continued to have slight arthritic symptoms in my hand and was told I also had carpel tunnel in both wrists which was treated with cortisone. I also have a strange skin scaling on my hands which I was told was eczema. My DH and I started trying to have a baby in 1998. It turned out that I had a blocked tube and was pre-menopausal at 36 so we did several infertility treatments including IVF. At 40 I was told I couldn’t have children unless we do a donor egg IVF which we were planning to do last year when I got ill. I thought I had flu but it lasted too long. They did blood test and I had elevated CK, white cell count, troponin T, and an abnormal ECG. My muscles ached and my legs kept swelling up. After more test they said I had a virus that it would go away in 6 months to a year.

A year later and it had not gone away I ache particularly in my legs everyday and they still swell up however I am able to function faily well and still work fulltime. After even more tests they now say I have Jo-1 antibodies. I still have elevated CK (although not like some of you) mine are about 600 to 800 and have been in that range for the last year. 3 months ago they said I had PM

Now here is my problem. According to my rheumatologist I have very mild PM and probably have had it since 1996/7 which has been grumbling along all these years. It explains the arthritis and the scaly skin (mechanic hands). He wants to put me on methotrexate for a year to put me into full remission, but I can’t get pregnant on this drug.

My DH wants me to take the meds and get better and forget about having a child and I know that this year is my last chance at having a baby.

So now we get to the questions. What will the methotrexate do to help my condition? What could happen if I do nothing? Is there any treatments I could take which I can still get pregnant on?

Sorry to bore you with this long post but I don’t know what to do.

mitchjar · 03-24-2007, 01:08 PM

[QUOTE=vonboo;2879270]Hi this is my first post to this board. So a bio is in order.

I have been recently been diagnosed with Polymyositis but I am not on any treatment right now. I have a follow up appointment with my rheumatologist in April and I want to know what questions to ask.

I am no stranger to doctors and have been misdiagnosed in the past. In 1996 I had a DVT and arthritic symptoms and they said I had Lupus but then 1997 said I didn’t. Then it was discovered that I have Factor V Leiden which has been confirmed with genetic testing. This is a blood clotting genetic disorder hence the DVT. I was on blood thinners for about 7 months but not now.

During the past 10 years I have continued to have slight arthritic symptoms in my hand and was told I also had carpel tunnel in both wrists which was treated with cortisone. I also have a strange skin scaling on my hands which I was told was eczema. My DH and I started trying to have a baby in 1998. It turned out that I had a blocked tube and was pre-menopausal at 36 so we did several infertility treatments including IVF. At 40 I was told I couldn’t have children unless we do a donor egg IVF which we were planning to do last year when I got ill. I thought I had flu but it lasted too long. They did blood test and I had elevated CK, white cell count, troponin T, and an abnormal ECG. My muscles ached and my legs kept swelling up. After more test they said I had a virus that it would go away in 6 months to a year.

A year later and it had not gone away I ache particularly in my legs everyday and they still swell up however I am able to function faily well and still work fulltime. After even more tests they now say I have Jo-1 antibodies. I still have elevated CK (although not like some of you) mine are about 600 to 800 and have been in that range for the last year. 3 months ago they said I had PM

Now here is my problem. According to my rheumatologist I have very mild PM and probably have had it since 1996/7 which has been grumbling along all these years. It explains the arthritis and the scaly skin (mechanic hands). He wants to put me on methotrexate for a year to put me into full remission, but I can’t get pregnant on this drug.

My DH wants me to take the meds and get better and forget about having a child and I know that this year is my last chance at having a baby.

So now we get to the questions. What will the methotrexate do to help my condition? What could happen if I do nothing? Is there any treatments I could take which I can still get pregnant on?

Sorry to bore you with this long post but I don’t know what to do.[/QUOTE

i feel your pain. i am also new to this pm and dm i have dermatomyositis. all i know i have been on methohexate for 5 weeks my ck levles are down. 6 months i started feeling pain when brushing my hair. then my nails got funny pitting and redness under my skin. also shortness of breath and troble eating pain. now i am on full time oxgin i was in hospital 4 days now home 1 week, i had to stop working 6 weeks ago and on disiable. they are now also giving me a 3 day dose of iv stroyds ( sorry bad speller) called dsolnmebrol.it 1000 times stronger then the 20 mgpredisone. i have got all my info from internet, libary books and doctors. the reports (notes) i get from doctors offic i take home and look up the things i don't undestand. it has helped understand better. so to ask better questions at doc offic. i try to staiy 1 step ahead of the doctors. so i can reserch all positives and negitives of meds so i can waigt it out. i then figer out my best chioce for me in my situation.. i ask all kind of questions and do not listen to any1 but i put all the info from everyone then i ask god to help me put it all together and all of a sudden I know what to do.. thats how i do it. sory i cant be of more help. i feel good that i will get better and with gods help we will overcome this. 7 years ago i overcame 20 yrs od druge addiction and have been 100% clean. so this stuff is small pattoes in my life. god has given me my whole life back. kids, jobs,family,joy, peace and happiness. well all is well hope you feel better NOW!!!!!! mitch.

Glojer · 03-25-2007, 06:39 PM

Vonboo, my husband has DM and has been on 30mg MTX by injection for almost a year now (9 mo. I believe) he also took prednisone. His ck level is now in the normal range and other than some skin sensitivities he is doing well. He is off prednisone now but the rhuematologist says he will be on MTX for quite some time. I took it once for a short while for lupus joint pain, it did not agree with my liver and had to get off it. My husband has had several serious health problems this past year but I can find none that is directly related to his use of MTX.

I wish you well in making your decision, it is one I don't envy you. I will keep you in my thoughts and prayers.

Glojer

issy07 · 03-26-2007, 09:29 PM

vonboo, I have DM and have had it for the past 5 years. I am a proud mommy of 2, a 1 year old and a 6 year old. During my pregnancy with my 1 year old, my doctor had me on treatments for the DM. I took prednisone, but did not take methotrexate, instead I had IV injections of immunoglobulin/IVIG ( sorry I can't spell). The IVIG helped some, but I still felt achy. I was considered a high risk pregnancy. I felt weak and tired all the time and I even fell several times just out of weakness from the DM. I did not put on much weight which was a concern to the docs. Fortunately my daughter was born healthy and my delivery went smoothly. After the delivery my DM just seemed to get worse. The first 10 months of my daughter's life, I was unable to pick her up on my own or bathe her on my own. She is now 13 months and I can now hold her and play with her. I am by no means 100%, but I am getting better. I am currently on prednisone and methotrexate. My doc says that we will try to get completely off the prednisone within the year. I know this is a hard decision for you, I believe in miracles and I will keep you in my thoughts and prayers.

Glojer · 04-01-2007, 04:06 PM

I will keep all of you in my thoughts and prayers. I am just awed by the young mothers with DM, how you can keep fighting this awful disease and take care of your family. You are my hero's!

Glojer