During PMR can GCA be forestalled?
Posted , 9 users are following.
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
Silver49 karenjaninaz
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constance.de karenjaninaz
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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
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Anyway, a locked jaw when chewing.
elizabeth20640 karenjaninaz
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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 karenjaninaz
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jon02168 Anhaga
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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 jon02168
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Silver49 jon02168
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jon02168 Silver49
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Anhaga jon02168
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karenjaninaz
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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 karenjaninaz
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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 MrsO-UK_Surrey
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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 karenjaninaz
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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 MrsO-UK_Surrey
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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 MrsO-UK_Surrey
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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 karenjaninaz
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MrsO-UK_Surrey karenjaninaz
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constance.de MrsO-UK_Surrey
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Constance
karenjaninaz MrsO-UK_Surrey
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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 karenjaninaz
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Regards fr Constance
MrsO-UK_Surrey constance.de
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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 constance.de
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Anhaga karenjaninaz
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MrsO-UK_Surrey karenjaninaz
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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