Hi Rick 23 I'm sorry you are feeling like this it sound like you are depressed. Maybe they can give you something for that. But I will keep you in my prayers. What I try to remember is that there is always someone out their who is in a worst situation then I'm in. And remember there are always people on here who care about you and know you will get through this just trust in a higher power. Hang in their.

Hi Ricky23, First of all, do not ever think there is no hope! There must be medications that should be able to help. If a doctor told me no more immune drugs, then I would ask about anti-viral meds, pain meds, and where do we go from here with treatments? There are always answers of some type that will help. Doctors do not always understand the intensity of our pains, so you must tell them.

When I feel really awful, I make an appointment with the rheumy. If the rheumy is booked up, then I pop around the corner to the internal med doctor. I see someone that can offer help. I do think once you see a physician today, and tell them exactly how you feel then you will get some decent help to feel better.

Do call a family member. Do tell them how you feel and get some assistance.

I will put in some prayers for you. Let a good doctor know how you are feeling. Best Wishes.

Hi Ricky. TRPT has given good advice so I won't repeat it. I don't understand what your Dermatologist is saying to you as our Immune suppressing drugs are borrowed from the oncologists. Do wait yo see your oncologist, he/she I am sure will help. We understand how you feel, all of us here have had or are having difficult times. The rash with DM is difficult to settle but it does settle eventually. The weight gain from the steriods is very difficult but you can lose it, please let us know how you are getting on.,Autumm

I'm sorry you are struggling Ricky. I have Non-Hodgkins Lymphoma and PM. I had the cancer first....or so we think. I know how scary it can be to balance both. I am here to tell you it is possible. My cancer went into long term remission while I was on Prednisone. Prednisone is a great anti-tumor drug. When I got off Prednisone, my cancer was back within 3 months but we were able to treat it and I am back in remission cancer wise and have been able to stay off Prednisone so far. There are a few steroid sparing drugs my Oncologist was not interested in me trying without trying others. Interesting enough, I take Methotrexate and it used to be used to treat NHL so it is a win-win. The issue will be if the Methotrexate no longer works for my PM.

So I share my story because I know it can feel overwhelming but you can balance both. I know our cancers are different but there has to be something you can do. I would ask your Oncologist to help suggest treatments that will help you with your Myositis. You might have to find a Rheumy or Neuro that is better able to handle both diseases and coordinate with your Oncologist.

I see a Neuro and she tells me what she thinks for treatment and I take it to discuss with my Oncologist. Then when I need treatments for my cancer (it is a chronic cancer and will always come back), my Oncologist tells me what they are going to do and I check in with my Neuro to see if there are any adjustments we need to do. So far so good.

So try to be hopeful that it is possible to work them together and feel better. Know you are not alone. Many of us feel overwhelmed and need a little anti-depressant to help us. Don't be shy to ask. It is lots to carry and adjust too.

You have a lot going on, Ricky23, and it's understandable that you feel so frustrated. You have experienced several losses in the past 2 years, and are probably in the midst of many grieving processes. On top of that you're physically quite ill. But don't give up, because there's an answer somewhere. To begin with, discuss your feelings of discouragement with one of your doctors, as they might take you more seriously and find someone for you to speak with.

As you know, I often look for alternative treatments to discuss with my doctor. I'm no doctor, but I would probably ask if something like Vitamin C IV therapy, ozone therapy, or a hyperbaric chamber might be beneficial. Also, in the U.S., we have a chain of hospitals known as "Cancer Treatment Centers of America" that specialize in treating cancer via many avenues--traditional treatments, alternative medicine, dietary changes, etc. If there is a similar treatment center in your country, maybe you should contact them.

Don't ever feel bad for "moaning" on this forum. That's why we're all here. We are all wishing you well. Keep us informed of how you're getting along. We do care.

Hi Ricky,

My heart and prayers go out to you. I know how hard it is to get through every day, and sometimes the thought of the longevity of it all is extremely overwhelming. I find it truly helps to go into a state of survival denial. Please let me explain. We all know what we face. We all the know the difficulties and challenges. We all can be proactive with our care as trpt so eloquently expressed. What we should never do, is look at the future too hard and too long. Take each moment, find whatever beauty may be found in the small moments. Celebrate what you can do no matter how small. Pray and ask for peace amidst the chaotic feelings. Depression is real, seek help, do not take this on alone. We are all here for you, and even though we don't personally know you, we are right there in the trenches with you. Reach out to us whenever you need, and we'll be there.

With encouragement and love,

momcoach

Hi Ricky23 - I have DM and my rash was quite bad - Plaquenil did sort it out but it took 6 months to get it under control. I am also on MTX and Pred. Please don't feel you are alone with this - we are all in this together. I have and many others have had awful depressing days and I can tell you I have had my share of crying and wanting to give up BUT there is light at the end of the tunnel. As you are in the UK as I am and Autumm - your Rheumy should be helping you with the DMARDS. The Samaritan helpline is very good - sometimes you need to talk things through. My parents died when I was very young and it has been a hard journey but I believe if you can face up to things and hit them hard you WILL get through this. I have come out the other end OK and my life is enriched with my husband and son. (Not forgetting my dog). I still have bad days but take each day as it comes and keep fighting - don't give in to this - I intend to never give up.

Hello Ricky, I can never tell you how to feel. I can only know how I feel and with Polymyositis, diabetes, being placed on disability without being allowed to work even part time for the next 3 yrs, constant pain foe almost 4 yrs, on and on, I can still thank the Lord for allowing me to wake up every single day and the pain allows me to know that I am still alive. We are are different and our illnesses and diseases are all different as well as how we handlw our pain and the way that it has affected our lives. Please never consider suicide which doesn't allow you to ask for forgiveness and to me and what I believe is a straight ticket to hell, which is a lot worst than anything that we go through on earth. This is a wonderful support group with people all over the world. look at some funny comedy on tv which allows you to laugh out loud, listen to whatever music you liked as a teen or pre-teen and dance, even if you have to do it along. Read your bible, just openit to any book as God will lead you. write in a journal/notebook or anything where you can just dump out your brain/thoughts. like me don't proofread or check your spelling, just write whatever you think or feel. life has a lot to offer, but you have to be here alive to accept whatever you are given. You are loved, even if it is by us who you do not know. I am mot proofreading ths so ther is probably many errors, but I wanted to write to you regardless. Also you may not have done this before but sometimes smoking weed helps with your pain especially your cancer. I don't smoke due to my heart and lungs may not be able to handle it, but I do believe in it as a treatment.