Saw my Dr yesterday. My weight is up another 1.5 kg, my steroids are down to 10 mg a week and my Ck is climbing. Oh well- another blood test in a week and we will see.
well - out of remission and now back on Prednisone 75 mg again. Very disappointed but had to do something about my joint stiffness.. gained 12kg with the last effort- cant wait to see what I look like at 100 kg.
I am down to 40 mg Prednisone this week and got the munchies badly. need to reach for fruit but cant bypass those choccies. Serves me right. Muscles are aching a bit this week and I feel tired again. Have a Drs visit this week so it will be interesting to see what my CK is doing. need to stop and rest more but cant help myself. There is always someone who needs something that I can offer. Saves me getting wrapped up in myself too. There is always someone worse than me... xx
Great Attitude Judenic, but i am so sorry you are suffering again. I am starting Dr. Fuhrman\'s Eat to live which is purported to help Auto Immune disease. I was able to get the book on Kindle from the library. I also watched Fat, Sick and Nearly dead on Netflix i think. He gets better from his rash auto immune disease and gets off Prednisone. I need that, so i am really working it hard.
wish there were an easier way,
shawna
Got in trouble at the Drs yesterday. It seems I have been reducing my prednisone too quickly. I am sure he said to reduce by 10 mg a week but it seems it should have only been by 5. oops. Oh well - I feel great but if he wants 5 mg a week it is 5 he gets.
iam down to 15 mg of steroids a day now. My Dr suspects steroid resistance so we will know soon if the next step is chemo or Octagam. Not sure i really want either but he is confident that he can cure this. Time will tell.
Had to look up Octagam, but it seems it is IVIG in the USA. Many folks have had a good response. I fear it is my next step too, but my labs are not wildly positive and no muscle biopsy so my insurance may deny it. My docs want me to get worse first. NOT fun... Hope you feel better with the slower taper. I too am tapering, slowly now at 1mg a month below the 10 mg mark. Good luck, Shawna
I got down to 12 mg and had another flare up so it is back to 15mg and I am to start cyclophosphamide. being a carcinogenic not sure how I feel about that. Cure the Poly to get bladder cancer of all things.... Really not enjoying this journey at the moment but have to trust my dr and his ability to treat this thing.
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four weeks off steroids and stiffening up particularly hands. another fortnight before I see my DR. Happy christmas to everyone
well - out of remission and now back on Prednisone 75 mg again. Very disappointed but had to do something about my joint stiffness.. gained 12kg with the last effort- cant wait to see what I look like at 100 kg.
I am down to 40 mg Prednisone this week and got the munchies badly. need to reach for fruit but cant bypass those choccies. Serves me right. Muscles are aching a bit this week and I feel tired again. Have a Drs visit this week so it will be interesting to see what my CK is doing. need to stop and rest more but cant help myself. There is always someone who needs something that I can offer. Saves me getting wrapped up in myself too. There is always someone worse than me... xx
Great Attitude Judenic, but i am so sorry you are suffering again. I am starting Dr. Fuhrman\'s Eat to live which is purported to help Auto Immune disease. I was able to get the book on Kindle from the library. I also watched Fat, Sick and Nearly dead on Netflix i think. He gets better from his rash auto immune disease and gets off Prednisone. I need that, so i am really working it hard.
wish there were an easier way,
shawna
Got in trouble at the Drs yesterday. It seems I have been reducing my prednisone too quickly. I am sure he said to reduce by 10 mg a week but it seems it should have only been by 5. oops. Oh well - I feel great but if he wants 5 mg a week it is 5 he gets.
iam down to 15 mg of steroids a day now. My Dr suspects steroid resistance so we will know soon if the next step is chemo or Octagam. Not sure i really want either but he is confident that he can cure this. Time will tell.
Had to look up Octagam, but it seems it is IVIG in the USA. Many folks have had a good response. I fear it is my next step too, but my labs are not wildly positive and no muscle biopsy so my insurance may deny it. My docs want me to get worse first. NOT fun... Hope you feel better with the slower taper. I too am tapering, slowly now at 1mg a month below the 10 mg mark. Good luck, Shawna
I got down to 12 mg and had another flare up so it is back to 15mg and I am to start cyclophosphamide. being a carcinogenic not sure how I feel about that. Cure the Poly to get bladder cancer of all things.... Really not enjoying this journey at the moment but have to trust my dr and his ability to treat this thing.
Dr changed his mind- taking Imuran instead of cyclophosphpamide- thank heavens I think. Still it is cytotoxic anyway.