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Polymyalgia Rheumatica and GCA

Also known as GCA - Giant Cell Arteritis, Temporal Arteritis

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  • Moon Face

    Okay, so. I've been on 10mg of prednisolone for 2 months or so and my moon face was barely noticeable. Then, I had to amp up my dosage and was on 20mg for another 2 months. I'm currently off it now (it's been 3 months since i've discontinued the drug), but I cant see my moon face reversing...

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  • GCA and TIA

    Hi Guys having been here for sometime. I will try to keep this as short possible. I was diagnosed with GCA Nov 2015 put on pred at 60 mg. I was able to taper back faster than doc recommended in 18 months. Been of pred since april 5 2017. I had no flare ups or symptoms. I have back cycling again do 60...

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  • Should I try Actemra (Tocilizumab)

    My rheumy is suggesting that I should try Actemra. Situation: PMR and GCA diagnosis in September 2016. Started at 60mg after some eye problems. Got down to 30mg in 8 weeks, flare-up at attempt to go to 25mg. Back to 60mg now slower, got down to 17.5 in 9 months. New flare-up, back up to 20, then...

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  • Help with insomnia after taking Prednisone

    I was put on Prednisone for 10 day taper for ear infection.  (30mg-5mg). In the past week I have been having insomnia now after being off for 15 days.  Can this happen?!  If so when does it get better?  Please share your experiences.  No one understands.  Dr’s say can’t...

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  • Prednisone reduction: retrospective

    Just for fun today I looked back at the very first post I made to this forum.  Wow!  Just about everything I have ever needed to know was contained in the ensuing thread.  Thank you, thank you, everyone who's been helping me along this road, especially Eileen, also Ptolomy, and others. ...

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  • Head pain

    I am a PMR patient, but have an associated query for the forum buffs. Three weeks ago I knocked my head on a metal bar on my carport. About a week ago I realised the area of the knock was really painful - and getting more so by the day. It has been accompanied by a constant, severe headache on the side...

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  • Weak Legs

    Good morning Eileen and everyone,  I have a friend with a bad drop foot who has had PMR for nearly 7 years and she has been stuck on 5mg of pred for the last 3 years.  She has started to suffer from weak legs when walking and after a certain distance feels her legs won't work anymore. ...

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  • Aching jaws

    I am having a problem with aching jaws first thing in the morning for about 1 hour, which then becomes a little easier, however if I press the spot close to my ears where the pain is in my jaws it is very tender all the time. Been like this for about four weeks now. I was diagnosed with Polymyalgia in...

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  • Why are the posts in my junk mail

    Is anyone else on this forum getting our discussions in their junk mail. I wondered why I had not been getting any posts recently and noticed today they are in my junk mail. Hope everyone is doing well, and pain free. Beautiful  weather here in the south of the uk. Taking Michdon’s advice keep smiling....

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  • Shoulder pain back

    Hi. Would appreciate some advice please. Am 69, have taken medication for high blood pressure for years and Was diagnosed with pmr Jan/Feb 2017 . Started 15mg pred and all shoulder ,leg pain gone within days .Have managed to reduce down to 8mg twice since then but have been advised by doc to up dose...

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  • PMR, Seronegative RA, MCTD -What on earth do I have?

    Hi all, first time poster in some desperation! Thank you in advance for reading and especially for any replies. A bit of context. I'm a 51 year old male on the UK who until recently was very active - gym everyday, cycling up mountains but I never really took care of my health - eating rubbish, too...

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  • PMR and ACTERMA injections

    I was diagnosed with PMR 2 years ago and have been on Prednisone since.  My inflammation numbers keep elevating and when they lower the Steriods to 10 mg I get severe flare ups and have to raise the Steriods to 15 mg.   Very frustrated because the drugs are affecting my organs.  Reheumologist...

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  • Having problems with various things

    hi to all, and a big hello to EIleen after a absence of nearly one year. A lot has happens over the months. Still having problems with reducing, I have had a couple of flares and the hospital just want me to reduce quickly, also now on 20mg of methotrexate which is not going down well.  I will...

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  • I need advice on dosing

    I have been experiencing a great deal of pain in both my hands. I've been working with my rheumatologist for many months about this. Back In October I had an MRI done on my right hand. I did not do both because I knew my back could not handle it because of the position I had to be in. I can not do...

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  • is rash and itching a prednisone withdrawal sympton?

    I hvae rteached 2.5mg/day of prednisone after 2 1/2 year of following the dead slow method. Thank you to all who coontributed to that method. I have now moved to 2 mg/day but during this move I started having random spots of itching mainly hands  and feet with no signs of a rash. No signs of PMR...

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  • Painful calves and feet

    Hi all just some random info regarding zizzy, itchy, heavy, painful calves and feet.  I was diagnosed as having calf muscle pump dysfunction. Not sure this is correct, but will be having the venous system ultra sound tests. I also will have neurological testing to rule out peripheral neuropathy....

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  • PMR / Prednisone - Fatigue

    I was diagnosed three months ago with pmr. I am currently taken 10 mg of prednisone and the pain and weakness is almost non-existent. The most serious symptom is faigue and tired all the time. I have to really force myself to stay active. I would appreciate feedback on fatigue and tiredness. Is it a...

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  • Prednisone and travel

    Maybe I'm over thinking this one but I thought I'd ask anyway.  In June I will be taking a trip that jumps 6 time zones.  Currently I'm taking my Prednisone split dose at 7 am and 10 pm +/- and having very good results.  Do I ignore the time zone change and continue at those...

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  • Per and supplements

    Just been speaking to my brother about pain and arthritis. He has recently started taking turmeric tablets and says they help. Anyone know if it's ok to take this with steroids. They are an anti inflammatory,so just wondering if the 2 mix. Thanks for help as always.

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  • I have been on predislone now for a month

    Hi, I was put on predislone 15mg a month ago for suspected pmr, my esr levels werent raised but i had the symptoms of pmr so gp put me on them. I am now on 12.5 mg for last 2 weeks. I have been feeling so much better, loads of energy and pain free, however in the last week i feel like i am back to how...

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  • Could it be Polymyalgia?

    Hello all, I am new here. I am really struggling at the moment with painful symptoms and am getting absolutely nowhere with my GP. I suspect I have some sort of inflammatory condition or disease, and wondered if perhaps someone who has PMR would read my story and tell me if they think I am on the...

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  • Could this be GCA?

    Hi everyone I have early OA in my neck and spine diagnosed by a rheumatologist about 20 months ago. My neck aches ever day, my shoulders and my knees. I have no trouble raising hands above head. I have lost about 10lbs in weight since I had a chest infection early January. I coughed and wrenched so much...

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  • Reducing Prednisone for required surgery.

    I ruptured my R. hand little finger tendon, over the ulna bone which requires surgery to repair.  My surgeon doesn't mind that I'm auto-immune with PMR as he said he's done many hand surgeries with people with these diseases.  He just doesn't like the dosage of Pred because...

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  • Picked up my Rayos (slow release pred) cost $9,000 month!

    I am so happy to have insurance because today when I picked up my Rayos (Lodotra) a timed release form of prednisone available here in the US, my pharmacist said, do you know how much this costs? I was shocked to find out my cost is zero, but they are charging my insurance company $9,000 a month for...

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  • Hydrocortizone instead of prednisone?

    Today I went to the endocrinologist for the first time.  He is having me quit prednisone completely tomorrow and instead take 2 hydrocortisone tablets in the morning and one in the afternoon.  This is a sudden change for me after bei ng on 20mg of pred for so long.  When I asked him if...

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  • Leflunomide

    I have finally been persuaded by my rheumy to take Leflunomide. I turned it down about a year ago, as I felt the potential side effects were too high, as, apart from GCA, I also have bronchiectasis with pseudomonas. But, when I saw her last week, she brought it up again, as I've been having problems...

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  • Celebrex and Prednisone

    Just saw my Rheumatologist who is suggesting I continue to decrease dosage of Prednisone  at a slow pace but also suggesting I start on Celebrex and alternate with prednisone in hopes that I am able to get off prednisone entirely. Has anyone with PMR been able to take Celebrex and have it handle...

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  • Epstein -Barr Virus

    I came across a site,  GOOP - The Root of Medical Mysteries. It was so informative, & interesting about what they suspect. Apparently, it is the Epstein - Barr Virus that is causing problems for mostly women that closely resembles our PMR problems & of course, descriptions of other diseases...

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  • No info

    may e it's my iPad , but when I put in my password that I started with it was not working, and now I use a new password and that's when I have nor received any notifications.

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  • Headaches

      I'm starting to suffer headaches. I'm on 25mg prednisone and still have another 3 weeks until I start slowly reducing.  I'm finding it very difficult to get out of bed in the night to use the bathroom. (At about 4am the pains in my arms start again) , not as severe as they were,...

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  • Hello,

    Im looking to gather info regarding chronic pain i have. Docs say Osteoarthritis but the info i read is that activety makes it better. Im the complete opposite. Rest, stretching and warmth helps me. Pain from low back and down the legs and ankles. Leg cramps at night. Im targeting siatica stretchs so...

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  • Pred induced diabetic

    I was diagnosed with PMR in nov 2016. By my check up in January 2017 I was diagnosed with diabetes and put on metformin . I was told that it was prednisone induced and would probably go away when off the prednisone. Fast forward to March 2018 I am in remissionand weaned off the prednisone. The PMR gone...

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