My ESR is 31 normal is 0.30 my normal has always been 14-15.
I also have alternate pains in my gallbladder area and also where I think my pancreas lives.
I went back up to 15mgs prednisone from 10mgs and only have a niggling of a headache. My second day on 10 I had jaw pain, scalp pain n headache.
I went to fast from 15 mgs on down to 10. I felt so good and thought I had made a breakthrough.
Lucky me I have wonderful new friends and we all meet up to soak and laugh in our pool which feels like a hot tub at 87*. It could be worse so I am thankful for all of you as I would not be doing so ok without you all.
My gallbladder has needed to come out for a long time... Went to surgeon n she said No surgery until I am down a lot lower on prednisone..
I also have a hernia or tumor in my stomach that she won't touch either and said it will be two separate surgeries. So not sure what doc will want to do..
I thought I was better so went to fast. Now it is sit wait then dead slow ahead. U think one bad flair would have taught me. Sometimes idiot is the only fitting word.
I had hang nail surgery in Jan still not healed. so I would be apprehensive having surgery. The only thing she said they would do is take any stone out that getss stuck.
Hi Lin, did the surgeon say what dose they would operate? When I saw a surgeon he went ape when he heard I was on steroids, panic, panic. I asked at what level he would operate and he said he would prefer zero! I suggested 5mg and he said "we are into negotiations now are we?" In fact he agreed at 5mg.
I am more the hare.... Really thought I was going into remission I have felt so good since my Cpap machine as I sleep great.
But alas I feel awful today and am moving like a tortoise.
I thought I was having a stroke earlier my right leg was feeling numb n my right arm aches.
I just went to bed. Still tired but leg not numb. B/p was fine and a extremities equal. Otherwise I would have gone to ER. Just so much going on you show up n my list would freak any doc out.
You were in a good place and so you know you can do it again. Don't beat yourself up you are aching enough already. This is a blip and you will learn from it. We will also learn from your experience. Be kind to yourself. This illness can dupe us. You will soon be back to your old happy place
Don't give up, it takes time, but you'll succeed! One day all of us will be better. I'm having three days in a row laying on the sofa, extreme fatigue. I totally understand you. Hugs,
Thanks Akino, here I am whining and you sound worse than me. You know what it is this place our forum that helps us all get thru.
Just got back from 3 hr ER visit. Not bad as I was lying down the whole time but I don't get exhausted like before since using my dream machine CPAP. I feel so rested....anyway my gallbladder is really full, my labs were good and she doesn't feel I have pancreatitis. Good news !, now someone tell my pancreas to stop goofing off.
She also did a few GCA things and said to stay on the 20mg a day. Yesterday I was up to 15 but the jaw pain and headache are still there. So back to 20. I was impressed at how fast I got to see a doctor. The extra wait was for lab n ultra sound results. It is a new hospital and I was impressed.
It is late for me so sorry for the rambling.... Gee I go from whiny to rambling.
Shall I tell you a secret: those of us with long service medals who spend a lot of time on here all came to an agreement with PMR/GCA and pred. We stopped fighting it and accepted we are where we are. It leaves us more energy to deal with it all and, in the long run, it really helps in the onward and downward journey.
Yes, that's what this journey is all about. I'm still struggling with the concept, but every single time I'm down on the sofa I grasp it more and more. This is here to stay for a long time and maybe forever. It's still early in BC, maybe today I'm up and can do something. Hope so. Sun is shining. All of you have a wonderful day!
Thanks for sharing that. I had come to that place but since my move I want to join in on everything but will slow down n let it be what it is. I still feel lucky and blessed that it is not worse.
May I suggest that you remain on the prescribed 20 mg for your GCA which is a low dose in any case! Normal initial dose for GCA is crca 40-60mg for a month , Then tapering slowly down to 20mg then even slower!
Jumping up and down with pred is not going to help. You need to calm down, don't see Pred as your enemy no matter what your medics say. Pred is your friend and although taking it will not cure your illness, it will make the illness more bearable whilst the body tries to heal itself.
As PMRPro said, this is not a race, calm down, and eventually you will win the battle. It may help if you cut down on carbs and sugar as well, many people find it helps the pain.
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Elevated CRP
PMR type pain with normal blood labs
Still in some pain having had a flare- when is it safe to drop back down to a maintenance level of Pred. ?
Advice before doctors appointment - Monday
Do i have PMR
