Thank you. Like I have mentioned I have a terrible fear of taking drugs. Had this fear for 27 years. I was unable to have chemo because of this fear... so im sure you can guess how bad this fear is for me. I have felt so very ill this weekend the pain in just about all my muscles is awful. Not been able to get dressed or wash my hair today. I have no energy left. The hospital gave prescribed Presidone 30mg. Nothing else. I take ibroprofen and paracetamol for pain but they do nothing at all.
I have to see my oncologist a week on monday and the Dermatologist thinks this is possibly linked to a possible return of my cancer. I wish with all my heart I could just take the Presidone now. The fear is unbelievable.

Hello Ricky. For me the Prednisone worked almost within 24 hours on my pain and my big sausage hands and fingers. I don't understand your fear because I have not experienced it. All of us here are here because we took the Meds. Even paracetamol has side effects but who wants to worry about side effects, I just wanted to get better. I hope you make the right decisions for you, get better and get on with your life. It's not easy fir any of us but we are here, we will help. Best wishes. Autumm

Hi again Ricky23- like Autumn I cannot imagine your fear as I too haven't experienced it but if it is anything like my phobia of the dentist it must be pretty bad. All I can say is have a word with your doctor if possible tomorrow and explain your fear - he may be able to suggest something. I have been on steroids for a year but everyone can hopefully taper off at some time.

Hi Both. Thank you so much for your replies. I'm so grateful as it all helps me so much. Today I have felt so ill I called my GP and he will speak to me Thursday afternoon regarding baybe a different tablet to take rather than the Predisone.
I could cope with the rash but its the severe pain in most of my muscles... wrist arms and thighs being the worst.
Do you have any nedication you take for pain?

Hi Ricky. I had terrible pain before diagnosis. I tried all the pain tablets, nothing worked, I used to walk the streets at night as could not sleep the pain was so bad. The only thing that removed the pain and also made me better was the Prednisone. I know you don't want to hear that but I have to be honest with you. I am so pleased you are seeing your doctor. Autumm

Hi Ricky - I too had terrible pain in muscles and arms and I agree totally with Autumn - the Prednisone does take a lot of it away I tried paracetamol, tramadol and even morphine but the pain still lurked there. The MTX will take over hopefully in a few weeks time as I am tapering very slowly off the steroid. I don't want to take any meds but like the rest of us unfortunately for a good quality of life we have to.

Ricky - good luck by the way at the doctors

I'm a brummie living in Florida I have had dermatomyositis for 3 yrs now when I finally got diagnosed I couldn't do anything for myself a new born was stronger than me even though the prednisone has side effects I strongly recommend taking it as it helps with the pain and begins to clear up your skin. I am on prednisone, methotrexate folic acid and I have gamma globulin infusions twice a month and believe me when I look back at the pictures of myself when I was in hospital and how I look today I can only say thank you lord. So don't be a victim to this illness we can beat this

Hi Karen and welcome. It is do good to know you too are doing well. Its a great encouragement to others to know there is life after Myositis. Hopefully your story will help Ricky to give the treatment a try. Best wishes to you. Autumm

Hi Karen - thanks for your input - you have done really well and keep up the good work!

I haven't been on here for a while as have been really unwell with this Dermatomyositis. So ill I couldn't even get out of bed to see my Oncologist. Finally saw my GP he said I had to take the Predisone or it could kill me. So after he dropped the dosage to 15mg from the original 30mg the hospital wanted me on... I finally plucked up the courage and took my first tablets yesterday morning!!!! My tablet phobia is SO extreme. But I felt suicidal with the pain I couldn't go on. I am very proud of myself... this phobia is the reason I didn't go ahead with chemo after my cancer diagnosis. My GP is organising help with this phobia now... so if the cancer is back I may be able to gave the chemo. Thank you for all your support. No side effects as yet!! X

Hi Ricky - good to hear from you - I have been wondering how you were getting on. Sorry to hear you have been unwell. The Prednisone should kick in very soon. Good luck and remember there is always someone here to reply and help you.

Hi Ricky. So good to hear from you. I am so glad you are finally having some help for your phobia. I am very proud of you for starting the Prednisone. Your GP is so right. Without the treatment you will die. Keep up the good work and keep on trying. You have nothing to fear but fear itself. We will be here fir you. How is the pain now. Autumm

Hi Both. Great to hear from you! And a huge Thank You for your support.
I am excited to see if I can get any better especially from the pain. Nothing major chsnged at the mo but only 2nd day... and my dose is probably lower than it should be but GP thought I would be more likely to take a lower dose so he says may take a bit longer to kick in. Couldn't believe all my bloods taken for dermatology were perfect. Thought they would be bad.... is this normal? ehat can I expect now? I have no idea.
I hope uou are both well. I am sorry its been all me me me!! But you have been such a support. You certainly made me see I HAD to take the tabs.... xxxxx

Hi Ricky. Great news about the lab work. One step closer to getting better. Slowly now the Prednisone should help the pain. When you have less pain you can sleep better and when you are sleeping better you can think about walking just that bit further every day. Please keep in touch, we so want to know when you feel better. Don't worry about us, Amber is getting there and I have been stable for a while. There is life after all this Ricky, just start to enjoy it. Autumm