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Polymyalgia Rheumatica and GCA

Also known as GCA - Giant Cell Arteritis, Temporal Arteritis

All discussions in this group

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  • Pinned

    Reducing pred: dead slow and nearly stop method

    Copied from Eileen's post in another discussion. A group of us worked out reduction schemes individually that have allowed us to reduce far further than ever before but they are all basically the same - and they were based on a scheme a Swedish gentleman worked out when he simply couldn't get...

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    Research: GCA & PMR

    The Research & Development section of Queen Elizabeth Hospital Gateshead NHS Foundation Trust will now undertake qualitative research following the result of the basic survey which we did last year on ‘Your Ears’. We donated £1000 start-up costs. All future costs will now be paid by the NHS....

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    PMR-GCA website addresses and resources

    If anyone has any further suggestions for inclusion do not reply to this but please contact me separately. PMR-GCA NE can be found at www.pmr-gca-northeast.org.uk PMRGCA-NW SUPPORT GROUP http://www.pmrgcasupport.co.uk/ The forums within the NE site are here - http://pmrandgca.myfunforum.org/index.php...

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  • I managed the cruise

    Hi all managed the cruise, all the walking, walked 134 steps to the top of a church in Croatia. Our friends do not understand Polymyalgia, on our last day in Venice we decided to do our own thing at my pace. 

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  • Is that Polymyalgia?

    Hello everyone, I am so glad I found so much valuable information from real people with real stories in this group. What I missed, though, the age of the people suffering from this illness. It is important to me as I am 38 old woman and two months ago I suddently started having severe shoulder pain...

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  • Had Cortisone Injections done

    Hi all, well my last post was about 2 months ago and I asked advice on the Cortisone Injections in my facet joints... I went ahead and had them done on the 5th October, he did 2 in each side. So far they are working at I would say 60% less pain, at least now I can stand and walk for more than 15 mins...

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  • Hand stiffness/swelling!

    Hi. I've had something resembling PMR symptoms since Feb this year and have been on Pred since, which has virtually wiped out all the symptoms until now. I was up to 30mg/day for an extended period and am now down to 12mg/day for the last week. My doctor and Rheumatologist have not been convinced...

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  • Can someone with PMR get a flu vaccine?

    I was diagnosed PMR in Nov. 2016, and was put on 20mg, Prednisone which relieved my symptoms within a day.  Since then I reduced to 15mg, then 10mg, (and a short stint of 7.5mg which left me in pain - Rheumy's suggestion to get off the Pred more quickly... duh, nope), so I informed my GP and...

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  • The ups and downs of life

    Hi all. Sorry but I haven’t been on the forum for a couple of months due to the ups and downs of life in general. Have been keeping up with the various discussions that have appeared so have not been completely out of it and hope that you are all coping well. Since my cancer scare earlier in the year...

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  • How to manage tapering

    A week ago  my husband died very suddenly while we were on holiday together in Majorca. It was a nightmare and a very stressful experience. About two months ago I had a major flare of my PMR and had to go back up to 20 msg after managing to taper to 5mgs.  I am now on 15mgs but tried to drop...

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  • sharp pain right side flank

    Hello, Right side below last rib & pelvis: Sharp pain only upon rising from prone position such as getting out of bed. Once erect, pain gone. Repeats daily. It helps if I press deeply and massage area. Any ideas?Approaching 30 days. 

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  • PMR and cold weather

    I have PMR and I noticed last night woke up with joint pain and muscle pain and was cold because of temperature change. Walking around this morning helped. Does anyone else get this with the weather change?

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  • The Prednisone kills my life!

    I was set on the Prednisone in February 2017. After 6 weeks on 15 mg/day I am going down and presently I take 4mg/day for months. During all these months my health was down significantly: stomach, abdomen, energy, lost appetite. I asked my doctor if I could changing doses for two or three weeks but she...

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  • Terrible cramping in hands and feet

    Hi - I've been on prednisone and now methylprednisolone for my PMR for about 18 months. I'm now on 17.5mg and recently have been experiencing horrendous cramping in my hands and feet. My hands cramp so bad it goes into a claw and is very painful and I lose use of the hands during this time. ...

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  • Unusual flare

    Unusual flare worked quite hard yesterday, woke in early morning hours, with a terrible pain in left arm and hand. The pain was something like when you have a body part that has frozen and is thawing. Waited a little while tried a heat pad, no help. Then when and took my Pred plus extra 2 mg. Started...

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  • Prednisone and Blood Sugar

    I thought I'd share some of my experiences with blood sugar because when I first started taking prednisone at 20mg my diet was terrible, and I never got any guidance from my Rheumatologist.  Net result?  I've lost considerable feeling in my feet.  lesson learned:  doctors...

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  • Split doses and tapering

    I have needed to be on a split dose of Pred because taking just a morning dose would never last until the next morning.  Splitting has worked great for me.  In late August and most of September I was at 10 mg morning and 5 mg evening.  End of September I got to see my new rheumy (previous...

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  • Has anyone taken L-Glutamine with Prednisone?

    I'm so worried about my stomach and muscle wasting with the Prednisone for my PMR. I've only seen one author write about it, but that was in 1994. I don't see any more recent studies.  Seems a lot of benefits from it from what she said, but... I was was excited to read about Betaine...

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  • Maybe a silly question but......

    I am in lots of pain, (all over) with fatigue etc...have had PMR 6 years and cannot get below 10mg without the latter....I have posted on here many times....but my question, (which maybe pointless!) is when I see my doctor on Monday...is there any point in asking her for an adrenal stress blood test. ...

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  • too much pain - PMR plus GCA.

    Hi - have had Ankylosing Spondylitis for 7 years, PMR for 2 years and GCA as well now for 3 months.  Was hospitalized for 2 nights recently with PMR flare and new GCA symptoms - my Rheumo warned me to watch out for severe headaches previously.  Got down to 5mg prednisone since 2 years ago,...

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  • O M Goodness!!

    Just been on holiday. Done lots of walking everything hunky dory. Then I looked in the mirror .... My lower lashes and half my eyebrows have dropped out !!!

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  • The Shingles Vaccine debate and Polymyalgia Rheumatica

    I had totally forgotten that I found this bit of info well over a year ago when the usual question about the shingles vaccine was asked and wrote a post about it: "I can't give you the direct link but on a site called "virginiahopkinstestkits" There is a quote from Merck ( the makers...

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  • Tingling in calves and feet

    I've had PMR for several years, and up until the last year was mostly controlled by prednisone down to 5.  The rheumy added (one at a time ) 4 different meds to try to help me get off pred.  None worked .  A year ago I had to increase my pred. And now I'm up to 27 ( down from 30)...

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  • Can stress make make your pain worse?

    I don't feel stressed but there is a stressful situation happening at work and I knew about it coming about 3 weeks ago. I had got down to 12mg but the pain in my shoulders and upper back increased. I went up to 13mg and no change so have jumped back to 15mg yesterday. Not really feeling any different....

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  • Diet as an adjunct to PMR Treatment

    For years on and off I've struggled with a plant based diet that eliminates animal fat, oil, and as much sugar as possible.  I've fallen off of it more than I've been on it, but I have stayed on it for nearly a year at a time.  Why?  Because such a diet can halt and even reverse...

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  • Shoulder and Neck Pain

    Hi all, I need some advice on what to do next. This journey started  3yrs ago pain all over but NOT in my neck and shoulders, about 7weeks ago I started getting pains in my collar bone, neck and shoulder, I was on 3mg. I carried on reducing on the dsns method hoping it would go away but it...

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  • Living with some pain and less Prednisone. Good idea?

    I was diagnosed with PMR in March 2017 and my starting dose of Prednisone was 15mg. I am currently on 7mg. and feel much better as far as side effects. ie; sleeping better, less anxious, less hot flashes. However, my pain has increased and I am still very tired. Any thoughts? I feel like I am willing...

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  • I have been diagnosed with polymyalgia

    Hi. I was diagnosed with polymyalgia two weeks ago and my gp started me on 15 mg steroid tablets doctor said that I would be pain free in 48 hours but I'm not 8 days later and the pain is so much better I am able to get out of bed in the morning get dressed quite quickly not so stiff after sitting,...

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  • Achy hurting joints

    I really don't know if this is PMR related but the last two days I have been suffering from joint pain in many joints in my body. I have been taking my pain pills that I take for my back and that hasn't helped to relieve the pain so yesterday I took an extra 5 mg of Prednisone and I got no relief...

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  • Veins have appeared on my chest

    Suddenly 2 days ago lots of large blue veins appeared on my chest, one running across the left side more or less from my shoulder across my clavicle and down a bit. But lots appeared on my breasts. They were there in the evening and much less visible in the morning. Back again at night tonight although...

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  • Coping with Giant Cell Arteritis

    I was diagnosed GCA in October last year. CRP level was 76. Immediately put on high dosage prednisone and within weeks, CRP down to 4, currently on 7. Every test possible was conducted, cardiac, vascular, optic. Biopsy of minor temporal artery confirmed diagnosis which was first mis-diagnosed as TIA...

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  • Cataracts due to prednisone

    Scheduled for cataract surgery next week. I've never had problems with cataracts before medrol. Now they must be removed, both eyes. I'd be interested in other's experience with lens replacement.

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  • Small pimple like rash

    i have been on preds for 3 months and successfully reduced from 20 mg to 10 mg.  Now a new symptom.  Small pimple like rash appearing mostly on my arms and legs.  Itchy and swollen then subsiding into red spots.  is this something  to do with pred withdrawal?  has anyone...

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