Lost and somewhat despondent, avid reader but first post!

April 2015 I attended my GP with a drooping eyelid, tender RH side of my face, general fatigue, stiffness and pain. I was put onto 20 mgms of prednisone stat and a large dose of Vit. D. My condition improved. I attended for a Temporal Artery biopsy in June which was negative and my blood tests have remained fairly normal all the way through. I was able to work [relief carer] and was reasonably ok apart from the odd but unpleasant infection until January 2016. I felt really good and was able to decorate! and wanted to turn out drawers and cupboards whoops! I was advised to start reducing the steroid dose which precipitated eye problems [checked out but threw up another issue a squint! but no real evidence of CGA] and then further infections. All last year I felt mostly unwell and the steroid dose was put up and then reduced. I have been under the care of a rheumatologist but that has been intermittent and we don't seem on the same wave length! Since Easter I have been impersonating a limp rag and this week very limp - it's wearing out. The rheumatologist says she cannot help me. I have followed the advice of pacing, spoons and variable exercise including taking up ballet. I have been unable to work and struggle with other activities such as book group, playing bridge walking and socialising so what next. I went to the great meeting in Leeds with difficulty and asked Sarah Mackie in principle were 20 % of patient without positive tests she said yes! So what now folks - My prednisone dose is 11 mgms and the rheumatologist said stop the SC methotrexate 25 mgms weekly so any suggestions? Ps there was a merlin in my garden today and there are newts in my pond so pecker there but failing

28 Replies

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  • Hi Ankara,

    What a sorry tale!

    As for your Rheumy, well she needs reporting - what an attitude!

    Can you get referred to another one, even if it means travelling further afield, to get a second opinion from someone worth their salt?

    Your facial symptoms may be GCA, but if you haven't had any further episodes I would guess they were something else entirely, but it certainly sounds as if you have PMR. Your bloods should be okay provided you are taking enough Pred, so that's not prove you don't have PMR.

    Your infections obviously haven't helped the situation, but you really do need to see somebody who is going to take notice of your situation, so suggest you see GP, and insist you really need to see another Rheumy. I know you really don't want the hassle, but sometimes we have to make a stand, and step out of our comfort zone just to get things done. Shouldn't have to, but sometimes need to!

    What a lovely sight to see a merlin, lucky you!

    Good luck.

  • Thank you for your support I am having bloods done next week and have a gp appt. it seems difficult to get joined up thinking but it would be good to go to Leeds. There is more to say re rheumy but will contain myself...the blackbirds are arguing and the baby blue tits being urged to fly. Seeing not good this am. The right side of my head and face remain tender I cannot sleep on that side as well as the right eye it did improve on the higher doses of steroids.. Ophthalmologist checked it and said it was ok and not to worry about blurring

  • Hi again,

    If your GP is amenable, think you need to discuss the whole Rheumy situation (they sometimes get a bit non-commital about other doctors) and ask for referral to another.

    Like SJ, I'm not very happy about the eye problems, and certainly if things deteriorate in any way then maybe a trip to A&E is necessary. 20mg would have helped reduce pain and symptoms, but even that it's not enough if the problems are GCA related.

    Please keep us informed of progress.

  • My heart goes out to you for your deeply unpleasant trail of health problems and the unsympathetic Rheumatologist ( outrageous really). I am fortunate enough to have Dr Mackie as mine. It makes all the difference to have a Doctor who is particularly interested in the condition you have. I would try to get a referral to another Rheumatologist.

    The bit of your story that particularly resonated with me was the sudden appearance of a squint. I sent a slightly off colour child ( my son) to Nursery and collected a child with a squint. He had to have corrective surgery. I was told that a virus had attacked the long muscle that holds the eye straight. ( again apologies to our resident scientists on here, for my layman's language)I wonder if something similar has happened to you amidst all your bouts of ill health? Talk about a compromised immune system!

    I liked the joy of the Merlin and the Newts - hope they recover. Nature always cheers me. I've got a very bossy Robin in my garden protecting his nest. He shouts at me if I venture out and is completely fearless.Apparently they summer in Nordic countries and are known as shy illusive little birds. Not this one!

    I do hope you get proper help soon. Your current dose of Pred. Is not doing the job. You need advice about dosage from someone who cares. Be very alert for any eye symptoms pointing to GCA, as I'm sure you are. Let us know what happens to you.

  • I have wondered about a virus as I was very poorly when the dose was reduced and that is when the eye problems developed though ophthalmologist suggests it was long standing. I had a a Botox in injection in the good eye 10 days ago have lost double vision but the eyesight is weird and blurry at times

  • My robin's not shy either! Always the first one on the scene when I go in the garden to feed the birds, and if I'm doing a bit of gardening he's about looking for worms.

    My hubby always used to say the robin is the first bird up, and the last to bed! And thinks he rules the roost!

  • The birds in my garden are like a following a soap opera. I have Robins, Chaffinches, Bullfinches, Blackbirds, Sparrows. The Robin is patiently teaching his big fat fledgling about life. There is a twilight battle for a good roosting spot in my Laurel tree each night. Sometimes they queue politely for the seeds. They unite angrily if a Magpie appears. Better than the telly.

  • Yes quite agree. Although my garden is quite small it's very bird friendly - could watch them all day! Do have a sparrow that gets a bit angry if I sit out for too long - he obviously doesn't appreciate "the hand that feeds him" factor!

    Very therapeutic as well.

    Have got a pigeon with a battered wing at the moment, not sure how things are going to pan out there - but that nature!

  • My garden used to be bird-friendly, but the neighbour bought the strip of land behind, and cut down almost all 6 trees - couple of weeks ago - middle of nesting season. Sacrilege! When I realised what was happening I rushed out and did a bit of last-ditch tree hugging - managed to save the upper crown of the last tree - nearest to my tall hedge. Better than nothing. Amazing what you can do in extremis! OH rushed out too (bless him - v uncharacteristic) pleading that his wife needed the shade. Neighbour hasn't spoken to us since, but we do still have a couple of blackbirds and a robin.

  • Oh dear that's a shame! Lots of birds are having a bad time of it in so many places, need at the help they can get.

  • When we NEEDED to cut down a tree (before it fell down) we had to get council approval - you don't have the right to "just do it". Mercifully though our obnoxious neighbour removed the line of leylandii that put us totally in the shade. But cutting down trees for the sake of it is evil...

  • It was a little patch of mixed woodland. Neighbours bought and got rid because they like sitting out in the sun. (Could have moved seating area. Why not? Search me.) We didn't ask if they had permission - too late to change it anyway. Haven't been on top of things lately. Sigh.

  • Ah but pat yourself on the back for doing something take care and fettle up it's a hard slog

  • It's amazing how the wild life adapt the tree sparrows around here go from house dependant on who is tidying their garden! Am trying to make a scarecrow for open gardens on 4th June not arty!

  • I want the option of both - but I do have to say, the tree we had to cut down - and REPLACE by the way - made our garden too dark.

    Maybe if you asked the council they would be told to replant????

  • Will consider.

  • PS - my tall hedge at bottom of garden - not next to neighbours. Does not affect them.

  • I wonder if your GP would refer you to Dr Mackie? In theory we are supposed to be able to see a consultant of our choice. You can't take risks with your eyesight, please go to A and E if you think your eye problem is becoming acute. Of course we don't know your whole medical history but from a PMR/ GCA perspective it is worrying.

  • I have been on Sarah Mackie's waiting list since January and just received my appointment letter this week for July. So it looks as if her list is six months long, unless she has priority slots for ?GCA - my diagnosis is PMR. Her secretary told me they could do with more than one of her! I do hope you soon get the care you deserve.

    We had a jay on the fence yesterday - he swooped down for something - I hope it was a slug!

  • I've been seeing Dr Mackie for a year or so now. She is still sceptical I have PMR so young (51 when diagnosed) but she has sorted other things out including dignosing sleep apnoea and realising I might have adrenal insufficiency when reducing steroids (it's sorted now). She has been fantastic at repoonding to my GP's queries. Hopefully now I'm off steroids I'll be signed off next time and somebody else can have my slot.

  • Thank you for that i am seeing my gp tomorrow so will se what happens

  • You are all wonderful it's great hearing about the avian life you see we have time to observe it...lots of great peckers

    Will try for a referral to dr Mackie

  • Once you have found a rheumy who can be bothered to investigate a patient - report the other one.

  • Sheffield City Council has employed Amey to cut down the beautiful mature trees that line the streets of Sheffield because it is cheaper than maintaining them. On one street residents were woken at 5 am to move their cars to allow the carnage to begin. Never been more upset about anything like that happening before. There is quite a protest movement over it.

    Sorry Ankara, your post has been hijacked by the birds and the trees but with this condition you notice and appreciate nature more I think because we are unable to rush about maybe. I hope your difficulty is resolved soon. We often find ourselves at the mercy of idiots.

  • I used to live in Endcliffe and worked all over Sheffield the trees are very important and with what we have we need distraction

  • Endcliffe is a lovely leafy area ( for now) I live in Kenwood. All the trees along Rustlings Road by Endcliffe Park were felled one awful dawn. 😥

  • Dreadful you'll have to chain yourselves into Kenwood...

  • We used to live in Woodhouse, S13 until we moved oop north to West Yorkshire for OH's job. We still have several friends who live on your side of the city.

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