GCA -What were your first few symptoms ?

Posted , 13 users are following.

I am 67 years old. I was diagnosed with PMR 2 years ago. For the past few months my health has been changing/deteriorating again. I know something is happening but I do not know what. In the past couple of days I have had a few eye incidents - my first thoughts of course are GCA. I had several incidents of pain in a line vertical thru each eye (at different times). It was extreme pain, the extreme part did not last long, but it did take a while to return to normal. It has mainly happened at night and has woken me up. Last night my eyesight went very strange for about an hour - like water designs on glass. My entire head was aching in a way it has never done before. Today my head is still 'thick', my scalp/neck is tender in many places, my shoulders sore. I have had severe head sweats for about 3 months - like I did have before PMR diagnosis.

?At first I thought I was having a flare, then I blamed wet winter weather, but over the weekend the new eye incidents have scared me. I have a Dr's appointment tomorrow. My Dr is really lovely, but very casual about the whole situation, so just wondering what other people have experienced.

 

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  • Posted

    I would suggest booking an appointment with an optician as well. The doctor will not be set up to do the eye checks required. Better to be safe than sorry.
  • Posted

    I agree with Floramac - get thee to an optometrist (an optician who can do all the eye checks, not just prescribe specs) asap, today, don't wait. If that isn't an option - go to the ER/A&E.

    It isn't JUST GCA you need to be aware of - your eyes are precious.

  • Posted

    Hi,  I am 59 years old, was diagnosed 2 years ago with polymyalgia.  My experience with GCA was 2 months ago.  My rheumo said to me to watch out for bad headaches.  I had a headache for 3 weeks that wouldnt go away and then it got very painful at back of head, over the top of head , forehead and a feeling of swelling around and behind eyes.  Also the veins on the R side of temple were very swollen.  So we headed off to the local hospital and the dr in charge diagnosed me with GCA.  I was given a very high dose of Prednisone (80mgs) and stayed overnight.  By the afternoon of the following day my bad headache was then a dull ache.  My rheumo set the drs straight re how to treat me as my inflammatory marker can't be relied on to show a high level of inflammation.  Now I am still lowering my prednisone.  I got down to 2.5mg am & pm, but the bad headache and swelling around my eyes came back so now I am taking 5mg am & 2.5mg PM.  I seem to cope better on this formula. The dr in ER said it was very important to get to the hospital before losing my sight - if you lose your sight then it cant be fixed, its permanentI reckon you should go to the ER or ring your dr re what is happening in your situation.  Hope this helps and good luck.

  • Posted

    Hi Flutterbie - my first symptoms were severe headaches and visual auras. The latter scared me so much (though they were quite beautiful - colourful flashes, changing colourings that lasted a few seconds) I knew it was not just the 'flu, as I first thought it was. My doctor immediately put me prednisone and placed me under the care of the diagnostic department of our local hospital. In quick succession, I had ultrasound, CT scan, blood tests, Xrays, eye tests, temporal biopsy, talks and physical tests with various consultants - vascular, cardiac, eye. Diagnosis was swift and a regimen of prednisone, omeprazole and enteric-coated aspirin, fozamax (for bone mass) was started plus regular assessments by the rheumatologist that will go on till the end of next year. Now, nine months later, the headaches have gone, there is no pain in temporal area (and it didn't spread anywhere else) and it's just a matter of dealing with the (decreasing) side-effects of the steroids. And my straight hair has gone curly!

    All the medical consultants have said GCA is treatable, manageable and in many cases, curable. That's good enough for me to be totally positive.

    Please see your rheumatologist. 

  • Posted

    When you were a diagnosed with PMR, the medic is supposed to tell you what to watch out for in relation to GCA 9the big sister).  Unfortunately that does not always take place.

    I would not wait till tomorrow, I would be off to A&E right now and if met with 'blank looks' ask to see the Consultant in Charge of A&E, tell s/he you have PMR and why you are here...........so no more looking for an answer here - off you go............you have nothing to lose by going and everything to gain, you have something to lose, either partial or total and it is called your sight' and once that happens it is gone.  Please get going...............

  • Posted

    Hi Flutterbie, it sounds serious enough to me to go to your dr today, not tomorrow. I had very slow onset PMR first too. For about one year I was gradually getting stiffer in my shoulders and hips, especially in the morning getting up was getting more and more difficult. Then I could not lift my arms to wash my hair anymore, without the other arm pushing the first up. I also began to have absolutely terrible night sweats. When I finally could not get out of bed I went to my GP, who gave me a test set of prednisolone. In one hour I was completely cured! Total miracle. Over the following weeks, I exerted myself too much, moving my kids, driving for 12 hours etc. Then the prednisone dose of 10mg was not enough anymore, went to 15 and a month of 20mg. Still headaches, low fever (37.5- 37.8) and night sweats. Then I had a first eye problem, no pain, but like you (I believe) a scattering of the image, fluttering in some spots. I found out it is called scintillating scotoma. Wikipedia has pictures of it. It went away after a couple of minutes and we (rheum and I) did not react to it. The next week I had an almost complete black out of the same eye. I was immediately diagnosed GCA and put on 60mg prednisone. This was September 2016. Then too quick lowering of pred led to a flare-up in December. Sinc then I have been following the DSNS method and am now going from 17.5mg to 15mg.  hope to be below 10mg by end of this year. Luckily I seem to have few of the nasty side effects of pred.

    Check out Wikipedia. If it was what I had, I would go to your dr immediately for a higher dose of pred. You do not want to lose one eye.

    • Posted

      I forgot a couple of symptoms. Before pred my ESR was only 35, but my CRP was about 10x normal max. During the last months before being diagnosed with PMR I lost 5kg of weight. And I had increasing fatigue until I got the high dose of pred.

      In general all of my symptoms were mild, if I read all the problems of others here. I was stiff and had limited motion, but not in terrible pain. My strange headache in the front upper part of my head was mild. No or minimal jaw pain.

    • Posted

      I have just reread your answer, as I have the severe head sweats and my little episode really sounds like scintillating scotoma. However we never know what else may develop, but I am certainly more aware of what to look for again. Thanks

       

  • Posted

    1st symptons for me were aching shoulders and shooting nerve pain from elbow out to end of 2 middle fingers. No eye pain thank god, Press that your very concerned with your Dr. And need some immediate attention. Sounds like something else going on other than PMR.  My Dr. Has tested for about 30 dif. Blood tests in relation to having PMR as to seek out any possible underlying causes.

  • Posted

    Flutterie57, I hope your doctor questions you about GCA, mine does each time I she her. Plus always ask when next eye exam, schedule next month for me. I would schedule an eye exam ASAP. Good luck!
  • Posted

    Hi Flutterbie,

    I have GCA and your symptoms sound a lot like GCA to me. One of my first flare symptoms is random tender scalp areas. Before I was diagnosed and the horrible headaches and neck ache began, I went to the ER with a shooting pain through the side of my head. I also recognize your comment about something not right and unable to clearly define it. Please let us know what your doc says.

    Best

    Karen

  • Posted

    I forgot to mention that one of the early symptoms was jaw claudication which made chewing painful.
  • Posted

    Thank you to all people who answered my question. I  got something from all of you and I will react quicker if I have any more symptoms/changes and  get myself off for medical help immediately.

    ?I saw a different Dr today who asked all the GCA related questions. She did numerous blood tests, sent me off to the Lab with my own blood immediately and gave me a letter for Optometrist and told me not to leave until they did all the required tests.

    My blood tests came back 'ok' but like Denise my inflammatory markers have never been significant.

    ?My eye checks all looked promising with no hints of GCA.

    ?At this point in time they are thinking I may have had the scintillating thing/mini type migraine like koen and the severe pain thru forehead/eye/cheek may be a neuralgia.

    ?Both Dr and Optometrist have given me instructions, like you all have, to get myself in for immediate medical care should I have any symptoms again.

    ?Tender areas on scalp, face and neck have continued to move around and bother me all day and I still have my 'thick' head.

    ?I live in hope that the new problems will all disappear overnight, but thanks again for all your reminders in case they don't.

    Here is hoping that all will subside over night

    • Posted

      Try this........my long time hairdresser told me when I first started with GCA many moons ago...

      Spread your fingers through your hair and gently tug and do this all over your head  You can repeat it once or twice and do it whenever you like.

      Because each hair has a muscle at the bottom of it - below the skin - this gently tugging relaxes that muscle.  Think about what are called 'tension' headaches.........

      It works and I still do it  long after GCA went into remission if I feel a headache coming on, like last night, which is I remembered about it, I gently tugged my hair all over my head.   Bliss............'.

      I also asked my hairidresser why did it work, the reply was, remember how we ask if when washing your hair would you like it done 'Shiatsu' way.  So give it a go and see if it works for you as it has for many others I have passed this 'Tip' too.

      We also added it to the two pages of 'Tips & Tricks' in the booklet 'Living with PMR&GCA'

    • Posted

      Hi - I'd love a copy of this but can't see it on the North East site. Is it out of print? Thanks 

    • Posted

      OOps that will be deleted by the moderator, I though I was on the pm link.
    • Posted

      You are a star. Thanks for this and for all the work and support you give so freely, lightening the load of this sometimes overwhelming and life changing condition for others. 
    • Posted

      We have been added to the list of approved sites biggrin - I was told the other day. After I complained directly when a link to the site was not approved by the new moderators and they removed it saying it "was not suitable for inclusion on the forums". If a link to the disease charity isn't suitable - one is left to wonder what is! 

    • Posted

      You have no idea how pleased I am to see this and so will you be how nice after 19 years that they now trust us and it will save me much time.

      I had emailed our Mate to see if he could get the link to Eric Matteson's paper on.................now I can do it when I get my caring duties over for tonight.  Joan has had an anxious and confused day and I am trying to work out why and she needs my attention.  Currently I have slipped in here whilst she is having tea and is quiet.  I know this will sound odd, but GCA was a doddle.   

    • Posted

      Doesn't sound odd at all. Give her a hug from OH and me xxxxxxxxxxx

    • Posted

      Thanks for this tip. I am very pleased you were able to pass on the information about the booklet. It will be helpful.
    • Posted

      I agree with Celia. Out here on the fringes, we don't realise what people like you and Eileen are doing behind the scenes for all of us.

    • Posted

      Just a bit of info 'Living with PMR & GCA' was written by patients for patients and medically checked. Where we could not get agreement, we printed it on the heading of the article concerned.

      Yes, Eileen co-wrote it.............and we are into the the 3rd re-print so well over 700 copies have been bought and posted all over the world. The DVD was successful as well and we still distribute that as well.   Without our paying members and people who donate to us, none of this would have been possible. We are small and run by 7 volunteers - all 'silver surfers'.  I just wish I could put a photo on here of my 'guest' bedroom and garage.

      If we ever win the lottery then everything we do can be free of charge.

    • Posted

      Oops  - stil no edit button, that should read 10 years not 19,...............

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