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During PMR can GCA be forestalled?

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karenjaninaz
karenjaninaz

i have been diagnosed with PMR and had 4 weeks of 15mg prednisone with great relief. We reduced the dose to 12.5 with good results.. I feel  very subtle but noticeable "head symptoms": little, transient pains around head, pressure in left sinus, funny pulsating feeling in temples. Can this be psychosomatic because I am watching out for  GCA? I spoke by  phone to my rheumatologist who suggested we go back up to 15mgm and see him in a few days for an exam and a decision to do the tabx. 

My sed rate went down to normal but my CRP though down, still elevated. I have no other incriminating symptoms. I started out with a significant anemia(I read that a positive indicator against eye problems).

Can anyone relate?

0 likes, 28 replies

28 Replies

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  • Silver49
    Silver49 karenjaninaz

    Posted

    I think you need someone more knowledgeable than me to answer because of the possibility of GCA. I did find that I had headaches nearer the beginning of my diagnosis which appeared to be related to the steroids and which eventually stopped. I did not, however, have anaemia. It was slightly unnerving as I didn't know if it might be a sign of GCA.
  • constance.de
    constance.de karenjaninaz

    Posted

    About three months into PMR I had very similar symptoms to those you describe.  My doctor sent me to an Opthalmologist.  He did special tests and looked behind my eyes, but everything was OK.  At the time my ESR was over 100 and the CRP very high (can't remember exact figure).

    Over the next few months I often had pain along the right side of my head, but never a real headache.

    I'm only telling you this because all that was four years ago and I didn't develop GCA.  I still occasionally get a quick pain in my temple, but I don't worry about it.  If I should suddenly have blurred vision, or jaw claudation I would be up at the hospital within minutes.

    I think you will get a lot of answers to this post, but I just wanted you to know that not everyone ends up with GCA.  

    Good luck!

     

    • constance.de
      constance.de

      Posted

      PS.  Sorry 'claudation'' wrong word (don't know where that came from).

      Anyway, a locked jaw when chewing.

  • elizabeth20640
    elizabeth20640 karenjaninaz

    Posted

    Just watch for all signs of GCA, I was diagnosed last Feburary with PMR Started off with flu like symptoms, pain in neck and then pain in thighs until I couldn't walk, I was on 20 mg and felt fine until I reduced down to 12.5 mg pred, and developed jaw pain, arteries at side of temple very visible, and pulsation pain at temple area, pain in neck got worse ( which is what I started off with) and then bad headaches,

    I was admitted to hospital had biopsy and it was positive, my dose was increased to 60mg pred, was in hospital for 4 days felt fine leaving.

    But next day severe headaches a week later I lost sight in right eye for 15 mins had 3 episodes of this, very frightening, doctors say it was tempory, my dose was increased to 80mg , but down to 10mg. But neck pain came back in last 3 months it's not bad and goes as day goes on, but take care

  • Anhaga
    Anhaga karenjaninaz

    Posted

    if you have any concerns (other than an emergency, which I think you would recognize), make an appointment to see a good eye doctor.  I had my usual headaches and never knew if this one or that one was the onset of GCA.  Also had a tender scalp which made me more concerned, but now I put that down to a coincidental change in shampoo brand!  Anyway, I went to see my eye doctor, an ophthalmologist, and his thorough examination turned up no signs of GCA, although the ocular pressure is elevated enough to require a return visit in 4 months (glaucoma, pred side effect).  This lovely man also told me, without prompting, in the course of the visit all I would need to know about eyes, prednisone and tapering, had I not already become a bit of an expert over the past few months.  Quite refreshing attitude on his part, reminded me of my old GP, now retired.
    • jon02168
      jon02168 Anhaga

      Posted

      Anhaga,

      ​You have raised an interesting question here is your reply to karenjaninaz. I have been diagnosed with PMR for approx 2.5 years and have been on Prednisone since the DX. I am currently on 6mg daily. I was having vision problems and went to the Eye Dr last week. Much to my surprise I was told that I had high pressure in my eyes and have glaucoma. I asked the cause and the Eye Dr said most likely from the Prednisone. I asked my Rheumy who said that 6mg was not enough of a dose to cause the glaucome. I have another appointment with the Eye Dr in six months. I was wondering if it is common for Prednisone users to develop glaucome. Any comments would be appreciated. Thanks.

    • Anhaga
      Anhaga jon02168

      Posted

      My understanding (from the beginning of this journey) is that increased ocular pressure is as common a potential side effect as diabetes, cataracts or bone thinning.  Which is why I was surprised when recently browsing through this site to see that it was not listed as a potential side effect of oral steroids, although cataracts are.
    • Silver49
      Silver49 jon02168

      Posted

      When I had my last eye test recently, I was told that the pressure at the back of my eye was raised. I have never had this problem before. At the end of my eye test they repeated this particular test and it had gone down! They did say that the drops can sometimes cause raised pressure hence the repeat test but I think as it hadn't before the only explanation is the steroids.
    • jon02168
      jon02168 Silver49

      Posted

      I have never been told that I had high pressure either. I do have an eye exam every year so was surprised that this manifest itself over the last one year period. The Eye Dr also told me I had cataracts but I knew those were developing over the last several years. I guess they are at a point that it is time to do something about them. My vision has been cloudy and I have terrible night vision. I am always curious about the side effects of any medication I might have to take but did not make any connection between eye issues and Prednisone or eye issues and PMR for that matter. Thanks.
    • Anhaga
      Anhaga jon02168

      Posted

      My pressure must have increased in the 7 months I had been on pred before my last eye exam, as my doctor said my eye pressure reading was always the same before that, so it can happen quickly.
  • karenjaninaz
    karenjaninaz

    Posted

    Went back up to 15 of pred and actually feel better. No headache. I was only down to 12.5 about 5 days when the head discomfort began. Seeing my doc Monday in any case. Not sure going down soon is a good idea.

    Does anyone go down from 15 mg by  1 mgm at a time instead of 21/2? I have 5mg tabs so breaking them in half seems easiest.

    • MrsO-UK_Surrey
      MrsO-UK_Surrey karenjaninaz

      Posted

      Karen, I developed GCA after a year with PMR remaining undiagnosed, therefore untreated, so that left me at much higher risk of GCA.

      ​It is possible that your head pain was a response to the the withdrawal of steroid following your first reduction.  If it was me, I would find a good ophthalmologist and ask them to examine the back of your eyes thoroughly for any changes.  However, if you experience any problems with your vision then seek immediate expert advice.

      ​Starting out with anaemia is quite common around the time of diagnosis - it was one of my first symptoms with the undiagnosed PMR, but it righted intself without intervention.

      ​If your return to the 15mg starting dose has resolved the head pain, and if your CRP has further reduced at the time of your next blood test, then you might find it more successful to reduce by just 1mg next time around - less of a shock to the body. 

      ​Don't attempt to cut the tablets if they are coated - the coating is designed to protect the stomach.  Only uncoated tablets may be cut

      I hope you continue to feel better now you're back on 15mg.

    • karenjaninaz
      karenjaninaz MrsO-UK_Surrey

      Posted

      Thanks for your input. Having learned that pred and poss. Gca can affect eyes I went for an exam. Everything normal; I have had dry eyes for years and use effective drops for that. 

      My tablets are the plain, scored prednisone. I am taking a generic ppi I used before. The recent stomach endoscopy show chronic gastritis/esophagitis- this from Naprosyn over many months --- or from PMR?

      I think I wasn't on the 15 mg even a month when we reduced. I had an earlier appt. because I had questions.

    • MrsO-UK_Surrey
      MrsO-UK_Surrey karenjaninaz

      Posted

      I would think it is highly likely that the gastric problem was caused by Naproxen.  NSAIDs can be hard on the stomach, liver and kidneys.  But I can so understand that pre-diagnosis you were desperate to take something for the pain.  I took Ibuprofen for 7 months, albeit at a low dose, just to get me off the bed to the loo during my first year with undiagnosed PMR.  At the end of that year, I was diagnosed with chronic kidney disease - it could have been from the untreated inflammation but equally it could have been from the Ibuprofen, and I was probably more vulnerable due to only having one kidney.

      ​Have you tried eating a 'live' yoghurt with your breakfast and before taking the steroids - it's a good tummy liner?  Also, Manuka honey may help with the esophagitis.

    • karenjaninaz
      karenjaninaz MrsO-UK_Surrey

      Posted

      Yes, I eat the yogurt and have no stomach pain now. 

      I was desperate before my diagnosis and took naproxen to get moving. When I tried to do without it- before my diagnosis , I just cried in pain. 

    • karenjaninaz
      karenjaninaz MrsO-UK_Surrey

      Posted

      I was feeling totally well on 15 mg. and on my last Doctor visit we decided to go down 1 mgm at a time. I emailed for permission to go down 1/2 mg for a few days. I noticed a slight increase in aches but also subtle head "feelings", specifically very transient discomforts, not real pains, at my temples and very transient slight temple pulsations. Other than that I feel really well: good appetite, decent exercise tolerance, no problems chewing or any other pains. but I am paranoid about going down to 14 mgm today. Fortunately I have very good access to my doctor by phone. I wonder if PMR is always accompanied by this temporal stuff to greater or lesser degree. My rheumatologist keeps mention methotrexate as a possible adjunct. 

      In the past ppi stomach medications always gave me a headache but not the one I am taking: rabaprazole. I also started alendodrate(Fosamax). I also noticed that the joint at the base of both thumbs enlarged almost overnight since this began but no joints hurt at all.

      i need to see a blood specialist because one blood protein called: MGUS which means "momoclonal gammopathy of unknown significance". This can be a marker for a blood disorder in the future. Not sure if this is related. I had a battery of ~21 rheumatological tests at a large rheumatology center and those were normal. ❓

    • Anhaga
      Anhaga karenjaninaz

      Posted

      Karenjaninas - Note that Fosamax is only beneficial in reducing chances of fracture for about three years.  After that there is no improvement so you'll probably want to consider discontinuing it at that point.  Just something to keep in mind.
    • MrsO-UK_Surrey
      MrsO-UK_Surrey karenjaninaz

      Posted

      Karen, if a DEXA bone density scan has revealed you are suffering from osteoporosis, then obviously that needs treatment with a drug such as Fosamax to protect your bones.  If you haven't had a scan then do request one.  If your bones are of normal density, you don't need treatment for now.  Far preferable to repeat the DEXA scan in the future than be on Fosamax now if not needed.  In any case you have to have a break from it after 5 years, so better to save until if and when needed.  I am not alone in having been on steroids for a number of years without experiencing thinning bones, in spite of a steroid starting dose of 40mg.
    • constance.de
      constance.de MrsO-UK_Surrey

      Posted

      Hi Mrs O!  I have been advised to have injections for OP but am reluctant to add any more "rubbish" to my body.  Is it 'terribly' dangerous to ignore the medicines?  Your comments woul be appreciated.

      Constance

    • karenjaninaz
      karenjaninaz MrsO-UK_Surrey

      Posted

      Hello Mrs O, my Dexa is borderline and my spine has been decorticated to instill hardware to correct scoliosis. This means my spine is vulnerable to bone loss; if that occurs the hardware can loosen with spinal collapse. I have absolutely no back pain ever since that surgery at age 60. I am 73.

      Another issue: after reducing pred from 15mg where I felt really well to 14.5 for 4 days I got pressure in my temples. I was supposed to go down to 14 but emailed my doctor that I wanted to reduce by only a 1/2 mg. So I just went back to 15. Also the joints below my thumbs popped up out of nowhere. I had about 22 rheumatological blood tests showing nothing other than mgus, sed rate 56 and CRP 111. These came down to better #s.

      I was a nurse for 50 years of which 37 as anesthetist. I never heard of such a crappy disease until it hit me.

    • constance.de
      constance.de karenjaninaz

      Posted

      Crappy is the right word!  Even Doctors and Rheumatologists don't seem to know much about it.  Hope all goes well with you.

      Regards fr Constance

    • MrsO-UK_Surrey
      MrsO-UK_Surrey constance.de

      Posted

      Hi there Constance!  I can so understand your worries about taking any more meds than you really need as I would feel exactly the same but, if you have been diagnosed with osteoporosis following a DEXA scan, you do really need to take something to protect your bones from further thinning​. 

      Whilst on Prednisolone, I did develop slight Osteopenia (the stage before Osteoporosis) but not needing treatment, and my bone density actually improved once off steroids.  I put this down to regular walking (one of the best weight-bearing exercises for our bones), Tai Chi and a good supply of dietary calcium (I was never prescribed a calcium supplement due to a misunderstanding between my GP and rheumy).  BUT if I had been diagnosed with Osteoporosis I would definitely have considered medication.

      ​Sorry, Constance, probably not what you want to hear, but if you don't go down the medication route, do look into all the best natural treatments in the way of diet (including Magnesium, Vit K etc)....and importantly have regular scans to check for any deterioration.

      MrsO 

    • Anhaga
      Anhaga constance.de

      Posted

      I second Mrs O's comments, including her suggestions about the natural protocol.  If you have not had any fractures I'd recommend doing absolutely everything you can without reverting to the OP meds.  All the best.  
    • Anhaga
      Anhaga karenjaninaz

      Posted

      I had a bad incident of extreme abdominal pain caused by naproxen, and later a gastric bleed.  Long before pred and I think long before even my early unrecognized symptoms of PMR.
    • MrsO-UK_Surrey
      MrsO-UK_Surrey karenjaninaz

      Posted

      Karen, if I had been found to be "borderline", I would probably have continued to concentrate on my exercise routine of daily walking and Tai Chi, and my intake of foods known to be helpful to our bones, and crossed my fingers!  BUT for you with your spinal history and now your diagnosis of MGUS, I can understand the need for you to take medication to protect you from further risk of bone thinning.

      ​Our finger/thumb joints can be affected by PMR but can also be due to osteoporosis.  I have swollen nodules on most of my finger joints.

      ​The pressure in your temples may just be due to the small first reduction in steroid dose and hopefully will disappear in the next few days.  I know it might seem impossible for half a mg to make any difference but I know from experience that it can, despite what some medics would have us believe.  I know that you have already had your eyes checked to rule out anything appearing that might point to lurking GCA.  Just remain alert but don't stress about it - PMR loves stress!

      ​I like your description of it being a "crappy disease" - I have heard it called worse!!

      ​There are a couple of good 'reads' available.  One is 'Polymyalgia Rheumatica and Giant Cell Arteritis: a survival guide" by Kate Gibert, an ex-sufferer of PMR and ex-Chair of the Charity, PMRGCAuk.  It is available direct from the Charity or from Amazon.  The other is "Living with PMR&GCA", available from PMR&GCAuk North East Support.  You will find all details on the home page of this community. 

      ​Lots of good luck wishes on all fronts.

      MrsO   

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