Hi I got my diagnosis today and feel crappyheadaches and the n loss vision in bottom half left eye.
1st told it was NAION but then had 2nd scan and Biopsy 2 weeks ago.results today....prednisone calcium D omeprazole and one pill for blood pressure..GCA....
Tomorrow I have occie health talking to me about my work...I'm a support worker on a mental health unit..
I just feel so Alone
hi and welcome,
Sorry hear about your GCA and partial sight loss -been there… and it is very scary early days.
What dose of Pred are you on? And if you’ve still got headaches you may a little bit more…
Maybe have a look through this for general info -
healthunlocked.com/pmrgcauk...
And maybe these stories from the FAQs re others with GCA -
healthunlocked.com/pmrgcauk....
It is a lot to get your head around, but there is always someone on here to help -anytime -so please make the most of us . Why we are here.
As for work -you need time to adjust and find out what you can and cannot do -so don’t be pushed into anything too soon.
🌸
I'm on 45mg prednisone they started me on 60 but at 5ft she said it was too much
Not sure that GCA respects what height you are.. 😏 I know where your doctor may be coming from…but retaining what sight you have overrides slightly too much Pred… and 60mg or above is recommended dosage in that scenario.
She stated she spoke with a specialist so..I'm hoping..but am awaiting rheumatoid clinic appointment..
Okay, hopefully it is sufficient, but obviously if you feel any deterioration you must get medical attention… and good luck with Occ Health meeting today.
hi and don’t feel alone. There is always someone on here you can talk to and ask any questions of. Please do not be in a hurry to return to work. I only have PMR and was off work for 6 months. Let yourself get used to being ill, you have a chronic illness that will last a couple of years(maybe more) and you need to get your head around it. Take it easy while it sinks in and you learn about how it affects you.
Keep in touch and hopefully you will feel not so alone x
Thank you . it's just hard my hubby is like ..oh it will be ok when I'm still in the Wtf mode..I'm 58 and although ..rounded...I'm fairly fit 3 dogs but I feel restless and exhausted all at once
I really don’t think anyone who hasn’t got these illnesses understand how hard it can be on the body and mind! We look okay most of the time
Hello Alliekat65🤗I'm very sorry you are going through this. It's a big shock to you and you have so much going on. And on top of that work stresses. Hopefully your GP will support you with your job and your health care.
Folk on this forum are so supportive and caring. Please don't feel alone💐
There are support groups dotted around the UK that meet once every 2 months (I think) and its a great way of meeting folk like yourself with GCA and like me with PMR. I'm sure PMRPRO or Dorsetlady and other dear ones on here will point you to your nearest one if you feel this would help you.
Sending very best wishes
x
thank you so much
As per Hidden comments, see this for local groups…. And if there isn’t one close there is a zoom meeting that might be useful.. Have a look, and if you need more info - just come back as ask.
So sorry about your diagnosis and that it didn’t come earlier. You are not alone. You have a global family of fellow PMR/GCA folks. There are the experienced pros and then folks like I who offer “you can do this, kid” thoughts. I am in the middle of a flare now and trying to work out the right dose of methylpred to bring inflammation back down. Everyone has something to offer. Expect to feel fatigued, and sometimes shaky from steroids, but in less pain and knowing you are doing the right thing. Best of luck.
You must be in shock. I am really sorry about this and glad that more of your sight wasn’t lost. I am glad your occupational health people are on this. You will need a period of adjustment with managing seeing differently and with GCA, you are going to be quickly tired and feeling unwell. You are not alone, this has happened to other people on this forum. Please ask any questions as they arise. Is there any counselling available at work to help you come to terms with this? I can imagine feeling scared, angry, sad - the lot. It would be really helpful to express this in a space just for you. Of course we will always be here for you, I can’t emphasise this enough Allikat65.. you may love your job and wish to stay on, it might be helpful to explore the benefits you could claim so you know where you are. The RNIB used to run courses that may help you and to be amongst other people in a similar situation. A friend who completely lost his sight went to a residential training centre in Devon and found that his confidence increased a lot - especially accessing technology to make full use of the benefits of new technology. He managed his job with an assistant and speaking technology in the end and is still doing well in his career, when he’s not being dragged out to do talks to Civil Servants. He is one of the funniest men I have met at work. Work is obliged under law to make reasonable adjustments to retain you, if this is what you want. They should design your job with your help, so that it suits your requirements and to enable you to do a full job. But sick leave may be needed initially.
Hi. In addition to the advice and support already given I would suggest you ring the helpline…pmrgca.org.uk/get-support/h.... You won’t have time to do this before your interview with OC but during the meeting please don’t agree to anything you are not comfortable with or are unsure about. You should be given time to think about things. Please let us know the outcome of the interview. Very best wishes.
Thank you
Hi and welcome - nothing for me to add to DorsetLady's reply. But any questions - just ask.
Hello and welcome to our community. We all understand how you feel and what it's like to get a diagnosis of GCA and/or PMR. Like you I was in my 50s when I started this journey. Your life changes so much. All those things you used to be able to do might now be challenging. My own coping mechanism is to try to stay in the present. Don't torture yourself by thinking what you used to do but accept what you can do now. It's a big shift in thoughts, especially if, like me, you are an active person who always kept busy. I've learnt to slow down and enjoy the small things I can do and don't fret about what I cannot do!
As for work, there was no way I could carry on my business. I used to teach exercise and run activity sessions for elderly people in care settings. I fell asleep at the wheel one day, luckily it was only a micro sleep but enough to make me reassess working and I decided to give up. Please do not let yourself be bullied into doing anything at work you cannot cope with.
I am sorry to hear you have lost some sight. Please listen to others here and get emergency treatment if you get any deterioration in your vision.
So I hope your meeting goes well and you get to see a good Rheumatologist. Welcome to the club no one wants to join. Here you will find love, laughter, compassion and kindness. You are not alone xxx
All of you are so amazing. it feels good to know I can vent without judgement and laugh which is prob the most important. mThank you
Laughing -definitely the most important-as you'll find out! 😊
So LOVELY occie health lady stopped the call. she said she didn't think I was in right frame mind to talk about going back to work so has put me off for 2 weeks
Well done that lady, very sensible.. and bodes well for future discussions. So good to hear that she has your state of health/wellbeing at the forefront of her decisions.
Hopefully you can now concentrate on YOU for next couple of weeks, I'm sure you were a bit concerned about today.
Being diagnosed with an autoimmune condition, along with partial vision loss and high dose pred is enough to unnerve anyone. Please be patient with yourself during this challenging time. Remember you are also grieving your life (and abilities) that you had prior to your GCA diagnosis while adjusting to your new life with GCA. This loss involves many emotions such as anger, frustration, fear, sadness, etc.
Although you may feel very alone (most folks around us don’t “get it”), we are here for you and understand given our lived experience with GCA/PMR.
Eventually you will get your work situation sorted, and as you lower your pred dose (slowly), some of the unpleasant side effects will likely lessen. Although we can’t control our conditions, there are aspects of our lives we can control such as when we rest, what we eat, who we reach out to for support, what activity we engage in, etc.
I was only 55 years old when I experienced my first painful PMR symptoms. I had just retired 18 days earlier, was a newlywed, and had just moved into a dream house we were renovating. Being constantly stiff and in severe pain was NOT the retirement I had worked hard for and dreamed of. One thing is for sure however, things did get better with a diagnosis, treatment (medication), good medical care, and the support of this forum.
We are here for you!
Oh hun that must have been awful. Thank you for reaching out.
you're right abt don't get it..my boss sent such a flippant email..ya know the type bare in mind i work on a mental health ward for NHS...I literally wanted to ring her up and yell......but I didn't.
today this forum has been brill. so happy to have found it ☺️
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