HELP, this is getting scary, need advice please

Hey suebee58
Hope all went well with your appt today. I agree about canceling that muscle bx. If you weren’t on prednisone tho I would have gone ahead with it. I too have had the debilitating weakness, I’ve been on prednisone cellcept immuran and methotrexate, and multiple combinations there of. The current cocktail of poision is immuran and mtx, and even tho the mtx can cause lung issues (my pulmo) is watching my lung functions closely, this finally seems to be helping somewhat. My cpk is still out of wack, but my rheumo told me,she might never be able to get it back to normal. It scares me because of the long effects of elevated cpk aren’t good, but I’ll take the lower numbers(last one272) any day over the fatigue and weakness. I seem to be regaining some strength in my arms too, but my legs are still wobley, but for me this has been an evolving process since 2009, and it was thru my pulmo uncovering respiratory things that ultimately lead to positive labs for cpk,Ana, and sjogrens that uncovered this pm stuff. That actually had been going on since 2004, but the rheumo I had back then couldn’t figure out what I had and told me " I know you have something but I’m not sure what,you need to go to the mayo clinic", which at the time I couldn’t afford too. So I left my disease untreated for 6 yrs dealing with the pain fatigue and weakness, until 2010 when I started my various cocktails. The unfortunate thing about our illness is that it’s not all that common, and I’m not sure about research dollars, and how much is actually era marked for it, but hang in there, were all here to help and listen and if you need a shoulder we all have those too. One thing that has helped a little is excerising in a pool. It helps to not have painful muscles, which I have when I try to do anything too strenuous. I also feel the need to ask, are the drs sure you have ms or could you have had pm/dm all along. The symptoms are similar. Very similar. Btw my muscle bx and emg indicated possible lower motor neuron dis (ALS) back in 2004, but I don’t have it. Thank god.

Thank you all so much for your support. My doctor admitted me today at JH, my O2 sat dropped to 61 when I walked about 10 feet with my cane…heart rate jumped to 133, he is concerned about my lungs. I did mention the Deviks to one physician that was in here tonight. Had a CT of my lungs done tonight and. Ton of blood, more scans, EMG and muscle biopsy planned. Looks like he is going to start the high dose steroids 1,000 mg go Solumedrol tomorrow …that made me cry, I really don’t want those again . I will do whatever they tell me, so thankful to be here. Thank you all for your prayers and I pray for each and everyone of you and your fight for health

Please keep us updated, please. My prayers are with you all the way. Hang in there girl and fight like the devil is chasin you…if you would like my personal email, just let me know. God bless honey

So glad to hear you were admitted and lung scans were done. Keeping you in constant prayer.

Dear Sue,

So sorry you are having such a rough time, but I know you are in the very best hands. I'm sending my good thoughts and prayers your way for your return to health.

Thinking of you Sue - sending love and prayers! XOXO

Sue, hope all is well

Hey suebee,

I'm sure they are running you through every possible test and treatment they can right now, knowing you've come such a long way! Just letting you know we're around when you can be!

We're all pulling for you!


Thank you everyone for your support. I was actually admitted the day I went in for my appointment due to severe shortness of breath and weakness. They started the pulse steroids immediately which have helped. I had quite a bit of testing done however they did not do a muscle biopsy, apparently I am so classic for MCTD they did not feel it was necessary at this time and they were more interested in starting the high dose IV steroids right away. I was discharged yesterday. My pulmonary function tests were all low, thankfully the echo looked okay, we were concerned about pulmonary HTN. There were multiple nodules in the lungs ID's on CT that we will follow up in 4 months. EMG of course showed muscle damage. I am still very weak but can ambulate short distances, I know that will improve with time...very frustrating right now. Because of the MCTD there are some other issues i.e. swallowing problems associated with the scleroderma overlap but the greatest problem by far are the weak muscles. They sent me home on prednisone 60mg q day and MTX 25mg/week by injection. I was on MTX before but only 6 tablets per week, this is equivalent to 10. Scheduled for PT and additional tests for bone density, swallowing issues etc...when I get home. Flying home tomorrow...still very weak but have wheelchair assist in place at airport.

Thanks for your thoughts and concerns, I welcome any advice.


Glad to hear you're on your way home, Sue!

This is just the beginning to your healing and getting the answers you deserve.


Awesome to hear sue. Hang in there…

Hi Sue,

I've been thinking of you, wondering how you're doing? Hope things are a bit better!

Wishing you well,


Well I am glad to report that I am home, had more cancer screening tests to do after I got back. Colonoscopy today revealed a very large tumor in my descending colon, I am shocked…have a strong family history…mother died at 44 with colon cancer, brother also had…I have had routine scopes…last one was in 2008. Praying it is not malignant but it doesn’t look very good and my first myositis flare was last October…I knew there was a strong correlation between cancer and PM/DM but I was not expecting this, still on pred 50mg per day and MTX 25mg per week, waiting on pathology report now. Prayers and advice or recommendations welcome. Yesterday I was worried about getting my muscle strength back and getting in remission…now I’m worried I have cancer too.

Sorry about the additional bad news. :frowning:

Sue, sorry to hear your news, let go and let god. It’s hard to do, but it works. I’ve been a worrier all my life,but a few years ago I faced some huge problems, problems I thought would cause me to be tempted into taking my own life. One day I was on line, searching, for what I’m not sure now, but this saying kept coming up, “if god brings you to it, he will bring you thru it.” The more I thought about it, the more I wanted the. Saying plastered all around me. So in my despair, I typed it out about 25 times on a sheet of paper, then proceeded to cut each saying out and taped it in all the places I was each and everyday, so that everytime I brushed my teeth, opened a cabinet whatever, I read that saying. Needless to say, I’m still here, now passing that saying on to you. I also said the serenity prayer multiple times a day. I learned thru that experience to be able to “let go and let god”. It was probably one of the hardest lessons to learn, but saying those over and over, I drilled into my own head what to do and it worked. Our prayers may not always come out the way we want, but they always come out to gods plans for us. Just know if it turns out to be the big “c”. It’s not a death sentence. There are new treatments everyday, that are saving lives everywhere. Remember positive energy draws positive results, negative energy produces negative results. Hang in there lady and know we are all here pulling for you, things will be ok.

I'm so sorry for the tough news, Sue. Know that I'm here for you and sending love and prayers.

Remember that medicine comes a long way in a short time, so hopefully there are new ways to help your colon than there were when your mom had her battle.

Hang in there honey!


Hey sue, how you doing haven’t heard from you lately, keep us updated, we’re all here to support