On a lighter side are you sure that you are not in my body. You have all my issues. I am not on as much prednisone as you are but don't believe anything helps me any longer. I took my second IVIG treatment this week. I was feeling okay as far as okay can be before the treatment, I am never without pain. My neurologist started me on Lyrica 150 mgs twice a day. When I finally was able to wake this morning, I was lost. I was disoriented and felt like my heart was coming out my chest. I didn't feel as if I could get myself to the offices for the infusion. I was so afraid. I live in Tampa and was staying at the hotel in St Pete near my doctor's office. The shuttle drivers take me. I gave up driving a year again. I have been forced to see a mental health or behaviorial counselor which may be ok but I have so much going on that I feel it is going to be alot more money that I do not have, but I will go. This coming week I have to have my last infusion on Tues because I need 5 treatments and monday my nurse was in training and this monday is a holiday. I have an appt with my rheumy that I will be rescheduling. There isn't anything that he can do for me this week. i have a funcational capacity test that is really a joke but my pain specialist ordered so that the report can be submitted for my disability appeal. I can't do anything in the test, but I have to let them know it. I then have to see the behaviorial person. I wonder how my employer is going to handle all this time off. So 24/7 pain. Frown on my face that I can't seem to ever change. A loss of income because Prudential decided that I am not ill enough to be on leave, so no income versus 60%. I can go on and on. To top this off my neurologist told me that it will be at least six months before I can expect to feel any relief. That is 6 months before I may feel any relief. I continue to pray and try to stay positive but my body can take only so much pain and i can only stay inside and never get to participate in things that I love because of this illness. I will go to sleep tonight and pray that God removes my pain or make it better. I never give up faith and have waken feeling better for a day. A lady told me today something that I already knew but still needed to hear. To find the pleasure/sunshine in something such as a flower, a bird and smile. To hold on to that and that is what i have been trying to do. I go to my balcony looking for the beauty of nature in the birds, turtles even the small alligators that I ddo not like, I would never have look for these things, but now I do. I smell the air and can tell when it is going to rain or has rain. i look at the beautiful school of fish that swim below and listen to the birds sing and know that God has sent them my way. We are stuck with this awful illness that is controlling our every move, but so far hasn't taken total control of our minds and we have to pray and look toward better, I always tell others to have a better day. Anthing better than what we have is good.

Oh Sonia and Brenda, I can relate so much to what you both have said. I long so much for a "better" day. One even with just half less pain than I have now. One where I could take my three children somewhere like we used to all the time. They just left to get an ice cream with their dad and I don't even have the strength to go for that. Like Sonia I am down to 102 lbs and scared of that. I was 115 before illness took over. I am on 50 mg Pred a day. I don't seem to be having the weight gain side effect, but it does make my brain feel like it is going to explode and that I am losing my mind---or that might just be the disease. Everytime I think I have conquered a symptom. Like if two days go by without swallowing difficulty, without fail it comes back again. This happened today. Or if in the morning my hands feel good and are not throbbing and the cuticles not as red and sensitive, don't I worry, it will be back to feeling that way later in the afternoon. I have muscle spasms constantly. I feel trapped in jail---everyday on the couch at home, except for doc apts trying to muster strength to do one or two things a day. This disease is very cruel. It sucks your body, your freedom, your mind away---I am afraid it is taking my heart too, figuratively and probably literally as well. I will keep you both in my prayers. I hope your IVIG finishes up well Brenda. Sonia keep fighting too. I think we have similar diagnosis timeframe and treatment.

Hello Sonia and Maj. I am sorry to read your posts. I did not gain any weight until I reached about 20mgs. I think at that point the Mecs were getting on top of the inflammation. I started to feel better and so wanted to eat. The fatigue will go. Try to rest u til you start to feel better. Exercise but don't work out yet. Sonia. I think you are feeling bad each time you taper and after a week or so you pick up to start it all over. Ask you Rheumatologist if you can taper monthly to give you a longer chance at feeling better between tapers. The swallowing does get better but I don't think my voice will ever be as strong. It is early days for you both. You will get there. Thinking of you and knowing you will get there. Autumm

I am so sorry about losing Cassie! We lost our Buddy recently and our home just isn't right anymore.

Prednisone is so hard on the body. If I had only known how hard it was, not just on the body, but to get off of, I am not sure I would have gone on it. I have been experiencing some dizziness and lightheadedness lately which keeps me on the couch.

I, too, have lost weight -- 60 lbs now. (I needed to lose it, so I'm thankful for that!) But most days I don't feel like eating because of the nausea from the prednisone.

I will add you to my prayer list, Sonia! You're not alone.

Did not mean to complain, I must say that I understand completely that prednisone is a combatant to this disease. In that it is a very evil drug we all know only too well, but we have no choice. The "dreadfulls" (side effects) are what we have no choice but to bear.
My rheumatologist has put me on a taper of 5 mgs per week. I did stress to him that I thought this was too fast. He said no,it should be fine. I am going to take matters into my own hands after this last episode. I am going to space the taper out to approx. every 8 days. The rheumatologist does not want to see me until July 10th, which according to my calendar would put me at 15 mgs. My rheumatologist is not available to me easily. I would like to be at the 20 mg level when I see him July 10th. I learn from lots of your wonderful posts that the taper then starts to really slow down at 20 mgs........
Also a friend here who has a brother going thru similar situation has suggested that I get a referral to McMaster Teaching Hospital in Hamilton, Ontario. She did give me the name of a doctor there. It is about a two hour drive from where I live. I am going to see my family doctor this coming week and will ask her to refer me to the Hamilton doctor for a second opinion. I am so afraid of a flare by coming off the prednisone so fast.
I think dear brenda we are each experiencing many of the same things in different ways. No one of us is the same, but we all have to suffer thru the consequences and treatments of this disease, each in our own way. We can conly learn from those that have gone before us like Nanny, Autumm and Wonup to name very few and learn from their experiences as they regain their rightful selves.
Dear maj my heart goes out to you that you are young and have children who want to go for ice cream and you cannot. I am 66 yrs old and my grandchildren seem to take care of me these days (they are getting lots of practice) One is off to college to become a nurse and has promised she will take good care of me. Another wants to be biochemist and find me a cure. One is going to be a chef and feed me until she gets me fatter. Then there is my pilot granddaughter who is going to fly me around the world when I feel better. The other 14 yr old twin has not decided what he wants to do yet, but tells me he is thinking about it - very seriously. Just take and enjoy the little things that you can do with your children and listen to their stories of what they did with dad while they went for their ice cream or out without you. Learn to rest for yourself while they are gone to renew your strength for their return. Just know that you ARE going to get better. It takes time.
Dear Autumm you always instill in me HOPE. You are a wonderful lady and have kept me in check many a time when I felt so lost. I am so happy to hear how your taper is going. My swallowing is a lot better than it was. I always try to keep a positive attitude thanks to you, Onwards........
Dear Lepey. Prednisone is our first line of defence in this disease and really, you have no choice but to take it. We have to learn to deal with the "dreadfuls" (side effects) and we do, as you WILL learn from experience. I am so sorry to hear of your loss of Buddy, I know what a hole that must have left in your heart and yes, our home does not seem the same without our Cassie. I weighed in at a perfect (for me) 132 lbs before pm. Now 102 lbs. Cosmetically I look like an 85 year old lady wrinkles everywhere... My perfect nails/cuticles look awful (I now go for manicures every two weeks) (Maybe I will be brave enough and post a pic for you all to see the difference a year can make with PM....... (maybe)) .......................
My prayers, thoughts, love are with you too. Raise a glass (of good juice) TO US.......
Sonia

Hi Sonia. Raising a glass back and the toast is 'we shall overcome' onwards !!!! There is no alternative. Autumm

Thank you Sonia for your compassion. The ice cream kinds of trips are just the small sadness. It is their school award ceremonies, soccer games, track meets, birthdays, even all the small conversations I used to have in the car with them dropping them and picking them up places----missing all these things is killing me. All three of my kids of had their birthdays since me getting sick with this blasted disease in Feb. (one in March and two in May). I never imagined I was still going to be so sick for my daughter's 15th which is tomorrow. I worry my 5 year old son will never remember as a mommy who was not sick. I will keep praying that things turn around for both of us soon. For that matter for all of us with DM. I hope there is some amazing mind out there working on something that could help us.

Hi Maj. I feel your sadness round your disease and your children. I don't know how to help. My own are all grown up. It is hard on a Mother, you are having treatment and in a few months you will feel better and slowly you will get back to being the Mum you really are. Be kind to yourself, you cannot change it for the present, it is not your fault, it will get better. Thinking of you. Autumm