Posted , 13 users are following.
I have had PMR for 6.5 years and been on steroids for nearly 6 years. Currently on 3.5mg Prednisolone. Recently I have experienced a tender scalp, mainly on the top of my head and I am getting headaches (unusual for me) but I feel they come from the right side of my neck. I also have a tenderness on right side of jaw. None of these symptoms are unbearably painful. What do you think? Can GCA come on gradually?
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Tinapoly1 Sheilamac_Fife
Edited
I had that scalp pain for about 2 months this year
on the top & 1/2 way down .I am assuming that it is from the PMR but not sure about the headaches since I get them often. I lost 95% of my hair last year & was devastated since I have had long hair for decades but now my new 5"long hair is falling out . The worst thing about this disease is having to take Prednisone but I couldn't walk when I got it 2 1/2 years ago since I was screaming in pain to get up ,down,or try & walk so for the ability walk again I'm grateful.I was always thin too so to have put on 45 lbs. was devastating & I eat like a bird so it's not like I can do anything about it. Best wishes !
Kdemers Tinapoly1
Posted
Did you take Methotrexate? That is when my hair fell out.
Sheilamac_Fife Tinapoly1
Posted
I've been losing my hair this past few months. not nearly as much as you describe thank goodness, but I don't know when it will stop! My hair first went curly with the Prednisolone and it still bends where it never did before, but at 3mg I was surprised to find a new side effect! it's very distressing, not to mention, messy!
jeanatDB Sheilamac_Fife
Posted
Oh goodness, on top of everything else! I assumed that if one is going to loose hair it would happen soon after starting prednisone therapy. This hasn't happened to me, yet! But my hair has gone quite curly which I have regarded as one of the few blessings of having GCA. Now I realise my hair could still fall out as the pred dose goes down. Arrrgh!
Tinapoly1 Sheilamac_Fife
Posted
No. I have been on Prednisone for over 2 years now & I lost most of my hair after one year on Prednisone. At the time I lost most of my hair I was down to 5mgs after one year on Prednisone. I never knew that was one more side effect. Half of my calf muscle tore completely off the bone & all I did was get up from the couch & take one step & I felt a pop & immediately was limping so I sat down & 3 hours later I got up & took just 10 steps & I screamed in agony when the rest of the muscle tore off it was in the middle of the night & I couldn't get up the stairs to have my husband take me to the hospital. I know now what it was since I had an emergency MRI the next day & they don't do surgery unless the rest of my calf muscle tears off. I also had become completely incontinent after one year on Prednisone & didn't even feel it happening while sitting on the couch. I had 2 urethra surgeries & 1 bladder surgery & I am about 80% better but I & the URO/Gyno thought it would be 100% & he said he had never had an unsuccessful surgery & attributed it to the year on steroids.When he tried to sew me up inside he said the stitches went right through my tissue so he had to sew me up with microsurgery from the outside in. My skin on the outside tears & bruises so easy & I have worse skin than my Mom had at 93. I pray that someone finds a cure for PMR/GCA. Sorry for rambling on !!! Just venting & sharing my experiences aside from gaining 45 lbs.& hardly eat anything.
Tinapoly1 Sheilamac_Fife
Posted
I am not sure if my hair fell out because of lowering the dose over a long period of time but maybe it is more the length of time I was on it which was starting at the one year mark when massive amounts came out. Now my new 5 inches is falling out in massive amounts. I don't recognize that fat ,balding girl in the mirror .