1. Community
  2. Bones, joints and muscles
  3. Polymyalgia Rheumatica and GCA

PMR with GCA- somewhat atypical

Posted , 8 users are following.

snapperblue
snapperblue

I just saw a rheumatologist who diagnosed GCA (temporal arteritis).  I have posted in the last 2 weeks about my continued PMR symptoms with 15 mg prednisone and reduced symptoms with 20 mg but with a couple of quite  bad relapses.  I did not think GCA was in the picture because I did not have tenderness at the temples or scalp, headache, or blurred vision.

However, I did have very mild headache, just behind the forehead and unlike my usual headaches.  This was barely perceptible and nothing I'd even have considered taking an aspirin for.  

I also had eyestrain from reading- again nothing I'd had before but no problems with seeing to read.  I had a slight problem with little blind spots where I'd seen something a little bright- like the reaction to a flashbulb, but in response to sun on a white car or even on the floor.  I had one 15 minute event with a large blind spot in the lower left visual field and "swirling" vision and spotty vision in the center of the visual field.

The rheumatologist explained that the temporal artery branches after the temple area, with one branch going to the eye and others to the scalp.  He says I probably have arteritis in the branch to the eye- so no inflammation on the main artery or other branches.  So I did not have the "typical" headaches or tenderness in the temples scalp.

 I'm writing this to alert or remind people that GCA can occur without the classic signs and that even the SLIGHTEST visual disorder or headache should be reported.  Thanks to my GP, I was diagnosed with PMR immediately and he set up an appointment with a rheumatologist right away.  When I had the "relapses" and visual problems, he got them to move up my rheumatology appointment by 2 weeks.

As usual Eileen was right on top of this, suggesting I might have vascularitis in another vessel!

So now I just have to deal with 60 mg prednisone for quite a while!  Ick!  I'll have an infusion of Reclast to prevent worsening of my osteoporosis. The doctor predicts an unhappy several months of side effects.

Thanks very much to all of you who posted in response to my concerns in the last few weeks!  I greatly appreciate your kindness and your willingness to share your experiences and information. 

4 likes, 9 replies

9 Replies

  • tina-uk_cwall
    tina-uk_cwall snapperblue

    Posted

    Hi snapperblue, what a nightmare! Mrs o had GCA so ensure you ask her lots of questions. Also, as you know Eileen is a font of knowledge. Keep us informed of your progress and although you say that you fear you'll be on 60 mgs for quite awhile hopefully it will turn out to be less than you think. Do take care, christina 
  • EileenH
    EileenH snapperblue

    Posted

    Where did you find this rheumy? He can go on the "approved" list - so can your gP too!

    Start as you mean to go on - cut the carbs to try to help the weight ;-)

    Looking forward to updates!

  • constance.de
    constance.de snapperblue

    Posted

    So sorry to hear of your problems.  But what absolute luck that you have "with it" doctor and rheumy.  How rare is that?

    No doubt you will have side effects, there is no escape from them, but, as you have already found out, this forum is tops.  You will never have to suffer alone.

    All the best

    Constance

  • PaddyJoe
    PaddyJoe snapperblue

    Posted

    Hi snapperblue I am so sorry you are experiencing GCA I know the 60mgms will ease the syptoms but you will probably feel lousy. I felt really lousy and had such a puffy face. Eventually I reduced to 20mgms daily but when I go below that both PMR and GCA kick in. I also inject myself once a week with Methatrex this combination has helped but I still have relapses some worse than others. I am not sure whether this helps or not. I also am exceptionally tired I am not sure why. I did have surgery for colon cancer just over 4 months before these two things hit me. Do you be very tired all the time?  
    • snapperblue
      snapperblue PaddyJoe

      Posted

      I was very tired when I had the PMR symptoms before I took any prednisone.  Every activity seemed overwhelming and was exhausting.  Since I have been on prednisone, I don't feel that way.  However, since I have had severe insomnia, I often feel dazed and tired in a different way.  
  • dianthusdoris
    dianthusdoris snapperblue

    Posted

    Hello again, snapperblue.   You may remember I replied to your earlier discussion, saying I too had found that the 15mg Pred did not seem strong enough.   I have been back to my GP and he has increased this to 25mg, which does seem to be having more effect.

    HOWEVER, reading your latest post above, I congratulate you on your GP and Rheumatologist!   My GP has never mentioned referring me to a Rheumi.   I told him that I had headaches across the temples, and often had disturbed vision.   He did feel around my temple area, but made no other comment.   Perhaps I  need to press to see a Rheumatologist when I next report back to the GP in 2 weeks time?

    Thanks for sharing your experience.   It is a great help.

    • EileenH
      EileenH dianthusdoris

      Posted

      There is no real need to see a rheumy if the PMR symptoms are just PMR symptoms - but if you don't respond to the lower doses of pred OR any GCA-type symptoms are present then you should be referred as an emergency, just in case. 

      What visual disturbances? The most common in the earlier stages are blurred  and double vision. In the meantime you could ask an optometrist (optician) as soon as possible if they would examine the back of your eye to see if there is any sign of ischaemia in the optic nerve. GCA that isn't affecting the blood supply to the optic nerve is less of an emergency and 25mg would possibly be enough (the rheumi here is very conservative there) but high doses are essential if vision is being affected.

  • MrsO-UK_Surrey
    MrsO-UK_Surrey snapperblue

    Posted

    Snapperblue, what rotten luck to succumb to GCA on top of PMR.  I can so empathise with you in this, but initially I wasn't so lucky with getting the PMR diagnosis from my first rheumy, so it wasn't surprising when GCA joined in the 'fun'. Wonderful rheumy on the scene finally though - wish we could clone these clued-up ones!

    Don't be surprised if you feel quite hyped up on the 60mg - I started on 40mgs and couldn't sit still for a second.  However, I was lucky in that I had an amazing response to the steroids symptom-wise within hours, and under the guidance of my rheumy was able to taper very smoothly and quite quickly down through the high doses.  Hopefully you won't be too troubled by side effects, but ask away if you have any questions - there will always be someone around who has the t-shirt!

  • dianthusdoris
    dianthusdoris snapperblue

    Posted

    Many thanks Eileen H.   I have an eye test due at the opticians next month, so will follow up your suggestions then.
Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.