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Polymyalgia Rheumatica and GCA

Also known as GCA - Giant Cell Arteritis, Temporal Arteritis

Can you help? Discussions needing a reply

  • ? On headache and gca

    I have headaches due to sinuses and high sugars so I am confused on when to tell my rheumatoid doctor. She said if it is different or trouble with my jaw. On a post their was a gentleman who lost her vision before anyone could diagnose him. I am so worried I will miss the symptoms. My pmr is …

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    RESEARCH: GCA & PMR. We need YOU…………….. to be one of 500.

    WE ASKED PATIENTS TO PARTICIPATE IN THIS RESEARCH PROJECT: ‘YOUR EARS’ May 2017 we asked you to take part in the above research: April 2018, only 155 have taken part in this study and the target is 500. We need the 500 so we are well short of the target. Preliminary findings show that there is …

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    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 …

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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/ …

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  • ? On headache and gca

    I have headaches due to sinuses and high sugars so I am confused on when to tell my rheumatoid doctor. She said if it is different or trouble with my jaw. On a post their was a gentleman who lost her vision before anyone could diagnose him. I am so worried I will miss the symptoms. My pmr is …

    Posted
  • moderator

    why have i been monitered please, and why am i not getting any mail 

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  • Medical Info Alert Bracelets/Tags

    I think there was a discussion re these and Steroids for PMR/GCA but I can't find it. Does anyone wear one or simply rely on Blue Card (UK)?

    Posted
  • CRP/ESR and pain in right temple

    SInce July of this year my CRP has been 5 and ESR 5 my query is that i am having pain in my right temple on a daily basis. Sometimes earache as well, I have mentioned this to my doctor and rhymatologist but both don't seem bothered, should I be? i know steroids can cause this, but not sure …

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  • Prednisone taper....

    Hello everyone, well I started my taper. After 16.5mg for 3wks ( and fairly pain free), I started 15mg 2 days ago. It is 1:09am on Friday and I can barely move my rgt arm! I've got so much pain in my shoulder that when I reached to pick up a cup just a minute ago, I almost dropped it. If I …

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  • Can’t get my rheumatologist to give me enough medrol

    Was diagnosed with PMR about 3 months ago and started on 16mg. He had me reduce too fast to 8mg and I had a bad flare. Went up to 24mg and was fine, but he wants me to reduce every week which I refused to do. I now reduce by 2 mg every two weeks and am OK on 18mg. I have to practically beg …

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  • Flu vaccines?

    There's been quite a bit of information re shingle's vaccine. Is there any general consensus on the flu vaccine? Was just listening to our local news, and word out is to get our vaccinations now as they're anticipating an awful flu season. This is my 1st flu season with pmr, so I'm …

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  • No more blood tests says GP

    So I had been asking for CRP test every month, results have been between 8 and 18, the last one was 3, because of that good result my G.P says I don't need anymore tests. Is this right? Does anyone know? I still have pain at such a low result, not sure what to think about that.

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  • My apologies....

    Sorry folks. At some point this train went off the tracks. I'll take the responsibility for this. Please understand, I'm struggling to make sense of all the recent changes to my life. Lots of questions and concerns. Trying to be patient (struggling with that too!) As always, my best wishes …

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  • Working with GCA and Polymyalgia Rheumatica

    I was just diagnosed Monday with both GCA and Polymyalgia Rheumatica on Monday and turned 60 two weeks ago.  Needless to say I am still working full time and will be until retirement age of 67 here in the states.  Can anyone share their experiences working with these conditions and …

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  • This may be "gross" but....

    Has anyone else experienced bleeding from the rectum from pmr/prednisone? I know this sounds insane, but it started happening to me a couple of hours ago. Never happened before! I DO have Crohn's disease as well, but I've had that for 2-3yrs and not experienced this! Advice?

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  • Rheumy #3

    I've had PMR for 2 years now.  My first rheumy moved after about 8 months and my 2nd rheumy retired in late May.  Today I had my 1st appointment with rheumy #3.  At first I thought things were looking pretty good.  He listened and said it sounded like I had a good grip on …

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  • Prednisone - Miss dosage

    What should I do if I accidently miss a 1/2 dose of Prednisone one day. Should I take the 1/2 dose the next day with that days dosage or do I just skip that 1/2 dose all together?

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  • Flair up

    After being diagnosed with GCA and PMR last November I have gradually reduced my 40mg steroids down to 7mg Last week I got a terrible headache and jaw pain which just won’t go! I visited the doctor today who has said I need a blood test tomorrow but as it’s the weekend I need to go back to 30mg of …

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  • Need support

    I’ve been told I need to go from 7mg of steroids to 30mg as I have had a flair up  with bad headache and jaw pain! The doctor is sending me for blood test tomorrow but says I need to up the steroids, just in case!!  Is my doctor over reacting of should I follow her suggestions?

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  • Suspected PMR & Prednisolone dosage query

    My Rheumatologist suspects I have PMR and has prescribed a course of prednisolone for 4 months.....15mg, 12.5mg, 10mg - each dose for a day for 4 weeks each and reduce to 1mg a month......this is a massive drop and I am truly suffering again and have dreadful pressure headaches, fatigue etc..... …

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  • Constant sleepiness!

    When I first started on pred. I had dreadful insomnia, literally was only sleeping about an hour or so every night. Now, about 3mo in, I can hardly keep my eyes open throughout the day! I tend to take 20m cat naps frequently during the day and early evening. I've fallen asleep while trying to …

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  • HRT and GCA/PMR

    I was asked to reduce my HRT patches last year as I’d been on them for many years! As I was reduced from 75 to 50 then to 25 I started to have sweats, aches and pains! Is this a coincidence or is there a link? I’ve asked my doctor if I can go back to 50 but she says wait until we’ve got the other …

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  • Trying to do the DSNS...

    Hi I have been on 20mg of pred for 3 months.  I was feeling pretty good, comparatively speaking!  I was told to start to decrease.  I started on the DSNS. I am down to 17.5 and pain is returning to both upper arms and hips. I hate to go back but I am afraid of the pain as well. Seems …

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  • Thin skinned??

    Hi all, I keep reading about many who've experienced thinning of skin. I'm a bit unclear as to what this means. Showing of veins? Prone to more bruising? Over the past month or so I've been experiencing very soft and Very Smooth skin, almost like a babie's "tookus"! Lol.... …

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  • Cryotherapy for PMR

    I have been reading about the positive effects of whole body cryotherapy on inflammation. Wondering if anyone has had any positive or negative experience with it as it relates to PMR?

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  • Problem with my eyes

    Hi - have been taking pred for approx eighteen months now for pmr. Am currently taking 11mg daily tho have been down to 8 mg on two occasions whilst trying to taper dose and have now started dead slow stop method . Problem started in my right eye a couple of months after starting steroids. Blood …

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  • lbh lbh

    Blood test and time of day

    I wonder if the time of day makes any difference to the blood test results. I've managed to get to 10mg at the second attempt using dsns and thought it was successful. I've decided to stay here for a while but after a few weeks I'm beginning to get morning stiffness. I'm due a blood …

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  • Vanity

    Eight months ago, writhing in crazy pain, I never thought about anything other getting out of this nonsense.   Amazing pain relief from prednisone, followed by ups and downs.  Flare ups and not being taken seriously. New diagnosis on the way. Large doses of prednisone have left me with a …

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  • Polymyalgia and RA

    I am 65 year old female. I e had PMR for over 5 years. On my 65th birthday I was diagnosed with RA. I’ve been on prednisone for over 5 yrs. I was able to stay under 10 mg the first 4 years but now find it difficult to be under 15 mg.  My Rhumy wants me to start Embrrl or Humera injections asap. …

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  • Another vaccination question

    Greetings from the Texas Gulf Coast! Recently the group responded to a Flu vaccination question. What about the shingles vaccination I've had PMR since April and I am on 14 mg pred. Thanks

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  • Lack of sleep

    I recently split my 7mg dose of prednisone to 5mg at bedtime and then 2 mg at lunchtime. I am now waking at 4:00am 😫 I did take the 7mg at bedtime and had no problem sleeping but found I was in pain during the day.  The pain has gone but the sleep pattern has been disturbed. Should I …

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  • AVERAGE LIFE SPAN OF PMR ?????

    In the past, I know the Medical (team) believed that PMR had an expected life span of around 2 years, but I remember someone (probably Eileen) posting on here, in recent times, that most Doctors in the UK now think that around 5 or 6 years is more realistic. I think they posted an article to read. …

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  • No longer PMR it’s Fibromyalgia

    So I had PMR for four years and then reduced to 0 uses DSNS and this site, I started having problems again. I asked GP for referral to rheumy. Bloods show normal CRP and ESR and low Vit D. So I started on a loading dose of Vit D and felt better after two weeks. Next I had MRI of my hips and …

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  • ....just curious

    As I've told you all, due to my own ignorance (and stubbornness!), I kinda screwed things up in the beginning of this journey by wanting to be on prednisone for a short of time as was possible. The bottom line to all my and my doc's poor decisions was that I had to start from square one …

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  • Aches and pains

    I have suddenly gained a headache and my neck is really stiff! My arms and shoulders are also really uncomfortable! Just ironing or carrying long got objects and my arms and shoulders ache! Not sure why! My pain is usually in my legs! That’s gone! 

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