Hi, I am now 5 weeks after diagnosis and still on 20 mg pred, told to reduce to 15 mg but pain came back, I am was told to go back to 20mg until after the next blood test. Looking at posts on here I am thinking that the 5 mg drop was probably too much and that I need to get my doctor to agree to a slower reduction.
I am however finding that my mind is constantly worrying about GCA, I have not been diagnosed with this and it has not been mentioned. I have read about it and for all my life I have had problems with my poor eyesight, I am absolutely scared that this will happen to me and that I might wake up having lost my sight overnight. I have read the symptoms and I do not have any at the moment, if it were to occur do the symptoms come on gradually and give time to do something about it? I am only writing this out of total fear and do know this stressing will not do me any good. Will be grateful for information.
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Buderim
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Yes reduction much too fast. 17.5mg would have been better, although not everyone can achieve that either.
If there has been no suggestion of GCA, then really you must try and stop stressing about it - that stress will not do anything to help your PMR.
You do need to be aware of the possibility, but it’s not a given that you get it, and once on steroids the “overnight loss of sight” scenario is highly unlikely.
“Aware of GCA, but not paranoid about it.”
You need to concentrate on your PMR. Talk to your doctor about reducing more slowly and also ask for 1mg tablets as well, in case the 2.5mg drop is too much. You will need them sometime in the future. And remember - don’t reduce more than 10% of your existing dose!
As a “GCAer” I fully appreciate where you are coming from believe me, but no point in worrying/stressing about something that may never happen. Life’s too short....
Hi and welcome to the club, we none of us wanted to be here but well , here we are. First of all very few people wake up blind without having symptoms first. Knowing the symptoms is your safety net not something to stress about, just to be aware and to act quickly is enough. Any questions please ask we are all here in the same boat and there is a lot of help and support to be had. All good wishes.
The likelihood of waking up blind is reduced by the fact your PMR is being treated - not entirely banished but greatly reduced. Many doctors feel 15-20mg is also enough for many GCA patients but the much higher doses are used to reduce the inflammation as quickly as possible. These doses are enough - but take longer.
And anything else I would write - DL has already said
It's not unusual for pmr'ers to worry about GCA - I ended up at the walk in centre a couple of times with blurred vision but it was just increased blood sugar. These worries reduce and as long as you know your symptoms and have some knowledge of key GCA symptoms you can react if anything significant happens with your vision.you have to just live your life without getting too paranoid. 🌻
I am so sorry you have been diagnosed with PMR. I think a lot of us worry about GCA, however you now know what it is and the symptoms, so would do something about it pretty quickly if you had the symptoms, also you are already taking pred. The people who really are in trouble are those who have never heard of GCA and their doctor does not diagnose it.
Like you, I too was very worried about developing GCA in the beginning after my PMR diagnosis, especially because I only have vision in one eye (the other is 20/200). After a few months when my PMR was being “managed”, I worried less as I understood such stress is detrimental to those of us with this condition. I am aware of the GCA symptoms, and live within 5 minutes of a hospital, so that provides me assurance.
Now that I’ve been on pred over a year, I’m doing much better, and my “worry levels” have dropped.
Thanks for this, it is encouraging to hear that others have felt the same fears and have been able to adjust and deal with the worries. I had never heard of PMR until 5 weeks ago and have learned so much from this forum. It has helped me so much. I really thought that the pred was a miracle cure but I know better!
You are not alone in having this health anxiety. It is perfectly rational. You are alert to the symptoms and protected by your current dose of Pred. That means you are forewarned and forearmed. Previous eye trouble is not an indicator, as far as I am aware. Do insist on a slow taper. PMR is far from done with you yet and a 5 mg drop is too much.
Thanks for this, it is so reassuring to hear from people who understand. I am gaining knowledge and will ask to have a greater input into the tapering process.
Personally I think you have to get the inflammation under control before you start reducing. But 5mg is far too big a drop. 1mg per week/ 2 weeks would be more manageable and be more successful.
Thank you, I am determined to have more input into the tapering process after the next blood test.
I’m sorry to hear how worried you are. Like you, I’d never heard of the disease until diagnosed last year. I found ( and still find) the mental effects more challenging than I anticipated. There’s a lot to understand and it is life changing because we have to accept a very different lifestyle in terms of activity, pacing, living with pain, managing steroid plan etc.
I’ve learned virtually everything from this forum; it’s taken a while, but the key word is acceptance. It sounds so easy, but it isn’t. Once I genuinely believed that this would probably be a bit of a longer and bumpy journey, I found it a lot easier. PMR will go when it’s ready, not when I want it to! I’m not wasting energy battling it or worrying about what might happen. I’m enjoying the good days and managing the rest. My personal view is that you’ve dropped too quickly. I wish you well and hope you feel a little reassured.
Thank you for you very good advice. I am sure that accepting the diagnosis and situation must help in the long run (which I am realising that it will be). So good to hear from people who understand through experience.
I too have vision only in one eye and the thought of GCA made me very fearful Now almost a year down the line I don’t worry about it very often like in the early days I hope this helps to ease your mind Take care
My doctor reduced my Prednisilone from 20mgs to 15mgs and I felt I had been hit by a train. Went back up to 20mgs which did not touch it, so went up to 25mgs and now down to 20mgs using 1mg a month. Please follow the experts on this site they know what they are talking about and could fill a boutique with t- shirts.
The only thing you want to concentrate on now is reducing your stress levels and sorting out a treatment plan that always you a slow taper of medication and some personal control over your dose when you know a flare happens.
The stress and jiggling about of drugs in a too speedy way is only going to make you feel worse and not get your pain under control.
To help reduce your stress it might be worth while going in with a print out of the slow tapering plan from the forum and requesting that you can follow that according to the experience of other patients and PNR / GCA Charity guidelines.
If you get the go ahead now , it will give you relief that you won't have to keep fighting in the future , then you can concentrate on getting better.
Just because you have had eye problems through your life does not mean your PMR will turn into GCA.
You need to try and stop worrying about that if you have not shown the symptoms of it and the GP has not mentioned it.
With PMR keeping stress low is key , you know what to look out for in terms of GCA symptoms , but you don't do yourself any good if you keep worrying about if those symptoms turn up.
Take care , as DL says , "be aware of GCA not paranoid about it " , that's more likely to give you a headache.
Thanks for all this information, I am wondering where to look to get the slow tapering printout, I’m not very good at IT skills and would appreciate it if you could direct me to the info. Thanks
I had this problem after the doctor decided that the negative biopsy meant it probably wasn't GCA but told me to watch out for visual disturbances. I have terrible double vision and also take Pregablin for a neuropathic pain condition so disturbances in my vision are not unusual. I was so worried that I would miss a symptom and wake up blind. I didn't know how I would ever forgive myself!
I was referred to another eye consultant who has more experience with GCA and he thinks I probably have it! He told me to look out for actual blind spots and if this happened to go straight to A&E.
I now regularly close one eye in turn and check that I can see all round with no pixels missing as it were and have settled down. You have my sympathy though, I know how terrifying this can be.
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