Hi everyone- I haven't written for a long time but feel the need to do so today. 4 years ago on 14/4/2020 my life changed forever as I was diagnosed with GCA. I hadn't been feeling well for some time and despite repeated trips to the GP with the symptoms I now understand constitute GCA, was not diagnosed until today 4 years ago. I had been very ill night of 13/4 and rang the surgery before leaving for work- the surgery phoned me as I was driving to work and asked me to come in for an emergency appointment in 20minutes. I turned the car around and drove there- it was a locum doctor who saw me and told me I was a text book case of a rare autoimmune disease called GCA- I had never heard of it. He discussed it with me but also made an urgent appointment with a hospital consultant 1 hour later. The GP would not let me leave the surgery until I took a liquid dose of Pred. By 1pm I had been tested and a temporal biopsy arranged for the next day - I was put on the shielding list as it was the start of Covid and my immune system now compromised. I was terrified. The diagnosis was life changing- I am so grateful that a locum saw me that day and saved my eyesight. My treatment programme began and for the first 18months my reduction went smoothly - then I had my first flare. I also realised with the first flare that I had not fully accepted my disease ie that it will be with me for life. A total shock all over again. Several flares later with increased / reduced doses I start on 1mg. on 16/4 for 2 months and can only hope that my current feelings of wellness continue. I think I found the mood swings as hard to deal with as all of the horrible physical symptoms/ side effects of the Pred. I also blamed myself for developing GCA and for not taking better care of me at different stages in my life.
I am still working full-time and hope to- no - will retire this year. It is my time now.
I read the posts everyday - I can feel the shock / distress/ confusion of all newly diagnosed members like it is my own- I know/ accept GCA will be with me for life. I am so very thankful for all the advice and support provided on this Forum - I think only those of us with these diseases (GCA/ PMR) can really understand the ups/ downs regardless of how well meaning people / family/ friends are. I feel very well at the moment and am lucky enough to be on holidays in Pompeii with views of Vesuvius ( which I went to the top of yesterday to see the crater ). I know there will be dark days in the future but I also intend to do everything I can to stay well. I feel very emotional today - can't explain why. I think I have lost something of me to this disease- perhaps my eternal optimism or positivity or the love of a challenge- maybe the feelings of being in control of my life will return when I can manage to stay well without the Pred. I feel very emotional today. Thank you for reading my story on my 4 year anniversary.
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Uisce58
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hello 😊 I was diagnosed 2&half years ago..by a locum.. My own GP had never heard of GCA. My story is similar to yours although I had already retired. When I think back to the early days of the illness I was in a bit of a state especially coping with that high dose of steroids. I had a relapse, tried Methotexate but no improvement, am now, reluctantly, taking Lefluomide and I do seem to be getting somewhere and learning how to manage the steroid reduction, ie a week or two with fatigue and then picking up again. Lucky you being in Italy, my favourite holiday destination, especially the Amalfi Coast and the historic sites. Go to Herculaneum if you can. Maybe I will get back there one day.
I too get emotional at times. I live alone which doesn’t help. But remember how far you have come and hopefully you WILL eventually rid yourself of this pesky illness. I believe it is possible.
I hope I haven’t gone on too much. I felt I just had to respond to your message. Good luck and very Best Wishes, love to you 🥰
Not really sure what you mean it will be with you for life … yes you will always remember you had GCA, but other than that, you will move on from it… if you let yourself.
I lost sight in one eye, so the ramifications of that will be with me for life.. but that hasn’t stopped me getting on with life any more than 3 joint replacements have.
Eight years in remission, I can still do almost all I want… I’m widowed so live on my own, but I can still drive, I have friends to meet and family I visit [including New Zealand].
Everybody has dark days, and many much darker than GCA… and no one can say what the future will bring.
So don’t let the spectre of what’s happened in the past affect today or tomorrow… . 🌸
Can I take you up on your second paragraph please saying you will move on if you let yourself. I would dearly love to not have to take pred but after eleven years am still on two and a half mg per day. I've had three relapses so where am I going wrong?
I meant in mindset as much as anything…..and almost everyone with GCA [although I agree it can be more difficult with PMR] do go into remission.
I’m not dismissing the fact that on some days in the midst of both illnesses it does seem never-ending and you cannot see light at the end of the tunnel. Nor was I implying that anyone who still has either illness after many years is a failure or it is their fault. If that’s how it came across then I apologise.
But whatever you have gone through or are going through in life, you do have, at some stage, to let yourself move on, and yes some part of it stays with you, but it doesn’t define you. That’s all I was saying.
Unfortunately it sounds as if your PMR is the kind that isn’t going anywhere, and I’m sorry about that. Has your doctor offered any useful advice on helping to manage it?
As you know seeing a Consultant when needed is difficult but originally she had it confirmed with a biopsy. My CRP when originally admitted to hospital was over 400. There does seem to be a tie up between that and my migraine with aura and the number of migraine attacks I had was unbelievable until the pred worked this last time. Now she wants me to stay as I am on two and a half. I last saw her in September but have regular blood tests.
Professor Dasgupta told us in a seminar during Covid that he often keeps patients on 2-3mg long term as he finds that reduces the risk of relapses. If he thinks it is a good idea and acceptable, who is anyone to argue?
Moving on doesn't necessarily mean stopping pred. I've had PMR for 20 years and been on pred for 15 of them - maybe the dramatic difference between before and after pred is so clear in my memory that it helps me accept it happily.
Do you take any other medication? I class the pred as just another pill that improves the quality of life I have and it is the least annoying of mine as it doesn't interfere with anything else I might want to have as a treatment for something. Anticoagulants are a particular pain - but they are protecting me from stroke or heart attack so on balance, a decided plus.
If your relapses have been at similar doses, then it is telling you that you have arrived at the dose you need. If they have been at various doses - either you are trying to force reductions (never works) or you have the form of PMR I have, a long term version that waxes and wanes more than average. It is what it is - take the pred you need and know your body's warning signs.
Thank you for your reply. It is GCA though that I have. Each of the three times I have tried to come off pred I seem to have been OK for anything up to eighteen months and then back to problems again. Last time when I saw my Consultant she encouraged me to stay as I was and not reduce the pred.
The dominant thing last time seemed to be the tie up between my migraine with aura and GCA. Last time I had so many migraine until the pred worked it was unbelievable and got me very upset.
I think that sometimes doctors get very confused by whther it is migraine or GCA flaring up - but at least you now have a doctor who leans towards the GCA concept. And pred is used in migraine.
I am just coming up to the 2 year point since my diagnosis of PMR and can totally relate to you saying some days you just feel emotional and a little overwhelmed about such a big change in your life. It sounds like you were very lucky to have been seen by the doctor you saw and to have had that all important biopsy when you did in order to catch the GCA in time to avoid damage to your eyesight. Every day is a challenge with the varied symptoms of PMR and the feeling that we once had of being somewhat invincible which is the blessing of good health but I feel best if I set a certain amount of goals for each day and just do them to the best of my ability. As the saying goes there is always someone out there being more challenged than I am so it helps just to hold your head up and carry on and if every now and then you need a good cry it is best to let it out and start again.
Wishing you the best in your travels and remember there are a lot of us out here that can totally relate to how you feel!
I read and then re-read your post and just felt I had to respond.
I was diagnosed with PMR five years ago, and like yourself and many others, both the onset of PMR and the diagnosis came as a big shock.
Coming to terms with PMR and learning to live with all that it entails has been quite a journey, involving many periods of feeling frustrated, angry, confused, bewildered, uncertain, scared, and quite poorly at times.
My life had to change & adapt to accommodate this condition and making that transition has not always been easy or straightforward.
However, I'm aware that for many people, both PMR & GCA can & probably will diminish and disappear altogether and I always remain hopeful that I'll be one of those people and always keep that in mind.
Over the five years I've been living with PMR, I've educated myself as much as possible about both the condition and living on steroids and I've felt for some time now that I do have a certain degree of control over which direction my health and well-being moves. For instance:-
- I know that certain actions might trigger a flare & therefore know how to potentially avoid one
-I know my physical limitations.
- I know the things that will help my condition rather than hinder it
- I know how to manage my steroid tapering more effectively.
Don't misunderstand me.... I too have also experienced some challenging times when I've felt despondent and low but during these periods, I've turned to close family & friends, and not least of all, this forum, for the support I've needed.
I feel gratitude every day for the things I can still do, including new activities & pastimes I've explored and enjoyed that I'd probably never have discovered had I not developed PMR.
We all have felt at some point that this disease has either stolen a part of our life, or 'taken away' some essence of our 'being'.....and to some degree it has, because we've all had to adapt and go through a transition, but for me it has also given me so much:-
I know exactly who my true friends are now.
I've learnt some new skills and discovered some new hobbies
I've re-evaluated what's important in life.
I've learnt I can feel so much joy from nature and wildlife and I love my garden.
I can't go walking for a whole day, but I can for an hour, and there's just as much joy to be had in that.
My life hasn't stopped, it's just changed a bit.
I had to medically retire from the job I absolutely loved and at first I found that incredibly hard. Now, I fully embrace the time that now affords me to really take care of myself and focus on new priorities.
Living with PMR, GCA or both will always be challenging, but it's not life threatening, and I for one would rather be living with my PMR than certain other more debilitating conditions.
I'm so pleased you're feeling well at the moment, and you're in such a beautiful place too.
You've come so far, so on your 4th anniversary, try not to look back with sadness.....look forward, and celebrate it and the 'wellness' you're feeling right now. You've achieved a lot.
You can't change what might happen in the the future, so don't waste energy on worrying about it, but you can change what happens today. Embrace it and have fun.
Dear Uisce58 your feelings mirror mine😞 GCA is a scary condition with the complication of blindness it can carry, I try very hard not to let that thought stay with me too long.The important process for me is that as soon as I feel a change in my temples I do up the preds, which I seem to be going through again now, I get to a cetain level of predsand then the symptoms of GCA appear, so yes I think acceptance like you I have found vety difficult reaching, so I am trying to focus on management...informed management, thats where I find this forum so helpful abd encouraging at the same time.
Thinking of you today, my road is not that long, I was diagnosed in 2023....although I realise I have had it a while but undiagnosed.....life changing,but hang in there sounds like you have good team with the locum acting so fast as he did once diagnosis was clear.
I too have such mood changes and that too is a challenge as they almost feel uncontrollable, but when I read posts like yours and others I realise we are not alone and can encourage each other to grab this with both hands, take extra care of ourselves, never feel guilty 🤭
Take care hope we both settle to a stage where we can manage our symptoms to an acceptable level. Xxxxxx
just want to send lots of hugs x I am the same I don’t know know who I am anymore xx feel trapped in a body that’s not mine x but keep talking there is plenty of us to hear you xxx
Your holiday sounds lovely, enjoy every minute. We all have our bad days when things seem never ending, especially if there are other medical issues involved. I hope your feeling good phases last longer.
I’m guessing you’ve been lucky enough to enjoy excellent health through your life. To be very honest with you I can say you’re very lucky if GCA is the worst health trouble you’ve had! But perhaps you have other medical issues, too? And anything will change your life, as you describe…but only if YOU let it. So many people here are suffering from worse things, (dare I mention cancer), or lost of a dear loved one while they’vE been suffering from GCA, & some are posting on behalf of relatives who lost their sight through it! Our loved Dorest Lady has only one eyed vision now! I don’t remember what date, & only remember year I started PMR, because it coincided with Covid starting. I’m not sure it’s healthy to have a GCA ‘anniversary’ tbh!! Celebrate feeling well, as you say you do! Enjoy your holiday, my favourite country, we had a wonderful holiday in Sorrento some years ago, & hope to go to Tuscany in June. Experiences, good or bad, give you the chance to gain something, not to lose something…be positive!
Thank you for your insightful post. It lacks two things though and that is hope for the future and kindness towards yourself. GCA does go into remission and nothing you have done or not done has either encouraged or could have prevented the onset of an auto-immune disease. The mood swings can be awful and in the grip of negativity things can seem bleak but the opposite is equally true. For instance I think this disease has made me kinder which is an important quality that applies to both myself and others and adds to the quality of my life. Listen to those mood swings and hear what they are saying to you, especially the positive ones that give you joy such as your amazing trip to Pompeii and Vesuvius and being able to get to and view the crater. You will get through GCA, changed and perhaps better.
Hi U I totally relate to feeling battered by GCA - it is mainly a mental thing, I have lost optimism and confidence, particularly in my future health.
Do you mean that psychologically it will be with you for life? Because obviously you are down to 1mg now, which is a negligible dose, and you are doing well and likely to be over it soon. If you mean psychologically, I know what you mean, but I suspect that within a year of being off pred I will have put it behind me as a temporary set back (everyone gets something!). I hope you will be able to do the same.
Have you considered that how you are feeling is down to adrenals not being up to speed, plus you are working full time which is not easy to do, so well done, but it may have taken it out of you. I'm sure there will be bright times ahead.
Bless you!- and allow me wish you a happy 4th anniversary. You have achieved so much and are currently experiencing the kind of holiday that a couple of years ago you may not have thought possible….that may actually have led to your emotional state. Thank you for being a member of this forum; your experiences provide valuable reading for others. 🌻
Having done the expedition some 50 years ago, I think that if you were able to reach the top of Vesuvius despite having had GCA for 4 years and still on pred - you deserve a pat on the back and a prosecco at least!
I too am coming up to 4 years though thankfully not GCA 'just' PMR, and exactly two years since I had Covid and a major flare which set me back to worse than the beginning as it affected my knee (it has taken me two years to self-diagnose the problem as an inflamed ligament) and severely affected my mobility as a result but there seems to be a common trend amongst us - or at least the people that post which is an optimism and a history of a full and energetic lifestyle, which is, I think what keeps us buoyant. I am aself employed and work from home but do find I have slowed down, not as enthusiastic as I was and not as much of a multi-tasker though I still do more than the average person I think. My mind has remained active and my computer enables a lot of organisation in arts and culture so I am busy. But I do miss the thought that I can go and travel, walk from A-B and then to Z and wander all day perusing the sights but there are plenty of other things to do. However, exercise is key to getting fit again and that is hard and my next challenge. Fingers crossed that you aren't here in another 4 years time!
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