I have medicine anxiety, and I’m afraid I’m developing GCA! I can’t take it anymore, after 2 years…I’ve only taken ibuprofen from time to time, I have a high pain threshold, but it’s the severe possibilities I can’t handle! I’m an artist and fear blindness, but my anxiety about meds is freaking me out just as badly.
I have issues with my heart and that’s another reason I don’t want to take prednisone! 😟
Sorry to hear this, but why are you so worried about Pred ! Or is it all medication?
Pred gets a very bad press, but it’s not as dreadful as many people think..and what do you mean as “severe possibilities” . Do you mean of the drug or the illness?
As for eye issues, tired eyes aren’ usually a sign of GCA, and as you have had them tested and no issues found then I think you are worrying about that unnecessarily. I don’t say that flippantly or lightly as I know all about sight loss and GCA.
As you have also coped with cancer and those drugs , I can understand your reticence to take Pred, but again you are maybe overreacting to them.
With PMR you need a much lower dose than if you leave it and it becomes GCA (not a given) - so perhaps give it a try and see how you get on.
Have you fully discussed your anxiety with your doctor? And have you been offered any assistance such as therapy - obviously not medication. If not, please do.
Hi GivenUp24,
Just to add to DL's comments, I too have some very mild heart issues, mainly regarding arrhythmias, and I was diagnosed with PMR five years ago.
I was initially most adamant that I wouldn't take steroids, mainly because of all the negative and scary information I'd already discovered about them.
However, I eventually had to accept that for a while, steroids were going to be the only way I was going to be able to live my life pain free, mobile and in a reasonably normal fashion.
Five years on and yes!.... there have been a few side effects from time to time, but nothing that hasn't been manageable and nothing that's been as scary as I expected.
Treat steroids with respect, (and by that I mean do as much as you can yourself to prevent or minimise the possibility of any side effects occurring.) and you'll find that for most people, they're not as scary as you'd imagine
You have been through a lot and I wouldn't insult you by even beginning to understand exactly how you feel, but I imagine that almost all of us here would not be taking steroids had we had a choice.
Your feelings are perfectly understandable but try and think of the steroids as your ally and not your enemy, in the fight against PMR.
I wish you all the best and hope you can find the best outcome for you.
I do remember bursting into tears as I said hello to my neighbour having just had my diagnosis for GCA. Like you I had also had had a go with cancer previously and was rather averse to any more poison as I saw it, feeling somewhat broken by the many meds I’d had already. In a way, the cancer stuff was more doable because it had timetables, plans, people to help, understanding from all, and had an end. PMR/GCA is more a case of how long is a piece of string, here is the side effect list, nobody’s heard of it, you look fine, bye.
Pred really does have a bad rap. Yes it is potent, but so is the effect of being in constant discomfort and despair. It can feel like getting life back judging by the comments from those who have had to struggle for a long time due to slow diagnosis. Some have spoken about cardiac issues that cleared up once inflammation was under control. Pred is your safety blanket from inflammation.
People don’t tend to have tired eyes with GCA and I can say mine were doing odd things that were quite different. But before going down that slippery slope of fear and what ifs, how about just trying the Pred to help that poor body deal with the immune system that has got a bit haywire and take each day at a time. As DL suggests, discussing your fears might be a good idea.
I have GCA, it was a big shock when I was first diagnosed, I have tried over the years to come off pred and did manage to for a while, however it returned again, I only take 2 mg now, it’s enough to damp it down. My rheumatologist told me taking a low dose 5mg or less does you no harm. I was on a much higher dose before but I’m happy to stay on 2mg if it saves my sight. I understand that you have been through a lot but pls don’t worry about the pred, there are other drugs that they can give, I tried them bit preferred pred.
take a breathe, step back, and see how far you have come surviving cancer, that must have been a road you weren't expecting to walk. Does your art give you peace? So many things whirl around in our head on a daily basis it can get very noisy and finding something that turns that volume down can really help. I don't have GCA but LVV but had/have a lot of head/eye symptoms and can appreciate your fear.
But pred is your friend not your enemy, if you look at it like a friend helping you through a bad time, then we are all lucky to have that friend.
Do you have an understanding medic that can talk you through your heart concerns?
you can always try is for a couple of weeks and see how it goes, it would still be ok to stop after a short time, but I feel you might find you feel a lot better and can enjoy your art which I am very envious about. Finding something that gives you pleasure is most certainly good for you and envied by others.
Honestly I too have heart issues and have had problems with pred but I really believe it's the only thing that will work, and that it is working. Can you give it a go? You could always change your mind and taper off but without trying it you won't know.
Hi Givenup,PLEASE do not think you are alone in all this,everybody here is sending you a great big hug I am sure of this!I too have issues with taking meds but once I realised that after losing my left eye through not being diagnosed with GCA ,I have come to be very grateful for the massive dose of steroids given to me in hospital and am now still taking at a greatly reduced dose.THEY ARE YOUR FRIEND as I have heard on this site many a time.Dark days are bound to happen,I had many,many of them in the early days,and some now,but I busy myself,and know that If I have ANY worries that I cannot out to bed so to speak,I call for THE A TEAM,namely DL ,PMR PRO and others.Have faith in yourself,you will overcome this fear,be aware of the symptoms and you are half if not more there!Sending you a big reassuring hug, xxx💐
Not being a sufferer of medication anxiety I can only empathise with you. I have taken prednisolone since 2016 for PMR and suspected GCA.
Prior to that I was adamant to manage without it and from age 46 to 48 I did and the condition went into remission. However when I was 54 I got to the stage where it was difficult to get out of bed and I kept falling asleep. I ended u having a micro sleep whilst driving my car. Luckily there was no damage to me, the car or anyone else but I knew it had to be addressed. So I took the prednisolone offered 35mg a day initially and 50mg for 2 weeks when I got as some headaches, jaw and vision problems.
So now it's 2024 and I am down to 4mg a day. I am forever grateful for the prednisolone as it's helped me have a life. Without it I would have been bedridden.
As for side effects there's been some weight gain but that stabilised and I am slowly losing weight these days. At higher doses I couldn't sleep but now get about 7 hours a night. At higher doses I did get some stomach problems but below 10mg that stopped.
You mentioned ibuprofen that you occasionally take. Well my late hubby took loads of ibuprofen for his cluster headaches. Eventually he started to get damage to his stomach and colon and so had to stop them. He eventually was diagnosed with metastatic stomach cancer. The doctors think his ibuprofen use may have contributed to this. My hubby thought that as you could buy ibuprofen at the supermarket it was safe!
Everything comes with risk. If the reward outweighs the risk and improves the quality of life then it's worth considering. I would rather take prednisolone than lose my sight that's for sure.
Those little white pills have enabled me to have a life and not be stuck in bed or confined to the house. It's scary stuff but there are worse things that's for sure.
Reading your bio...the words "I am not me" really resonated with me. To be honest, I hardly remember who I was...and I certainly have found it difficult to adjust to the new me. BUT you (and I) have had to face many challenges in our lives and somehow we did get through...being older doesn't make it easier. BUT we can get through this and we can preserve elements of life that are important to us...for you painting...for me working. I have continued to work (job is online) almost every day...hours a bit reduced on some days...but that does get better...we can get through this ...and IT DOES IMPROVE. sending you every good wish
Please don't give up! I was diagnosed with GCA last September and put on very high dosage prednisolone. At first I did feel quite disorientated but as the dose reduced I began to feel "normal" quite quickly. I did feel like I'd had PTSD when I realised how close I was to blindness but, trust me, prednisolone is a small price to pay to save your sight. I too have had chemo for cancer and I have not found prednisolone as challenging.
I too have cardiac problems - actually CAUSED by the autoimmune part of PMR. The pred not only gave me my life back after 5 years of not being diagnosed but it also improved the cardiac issues.
Have you discussed your medicine anxiety with your doctor? Perhaps a 'talking therapy' would help you sum up the courage to try a short course of prednisone. You say you felt "great" after that shot of steroid for the migraine - how wonderful if you could feel that good again and free of the PMR pain and worry about developing GCA.
You are obviously strong enough to have coped with cancer and its treatment. PMR & GCA are conditions that should go into remission and for most people they do. Many of us on here do not see them as such "hideous diseases" as you do. Any side effects of prednisone can be dealt with, if they arise. Ask your doctor if prednisone would affect your "heart issues" - it could be that you are worrying about that unneccessarily.
Think about what you would say to your best friend if they were declining a treatment that would make them feel so much better, after 2 years of suffering...... 💐
Cancer was actually a walk in the park compared to this, there was a plan and action and hopefully a cure.
With PMR or GCA there is a plan and action and although you cannot “cure” either, both go into remission for the vast majority of patients. 😊
It was in regards to concretely diagnosing GCA. There are a lot of false negatives in the testing we have available.
Not denying that.. which I why we say symptoms are the key. But Pred can and is part of the diagnostic process.
All I’m saying is try the Pred -wish I had been offered it in time to protect my eyesight - but I wasn’t. Due to misdiagnosis- I’d lost sight in one, and it was a rearguard action to save the other.
I was going to reply with the exact words that DL has used!
I realise we are all so different in the way we think and respond to what life throws at us, but I fear cancer far more than PMR & GCA.
Good wishes.
“Hopefully a cure” - Both cancer and PMR/GCA go into remission. With both, a person can be free of it for life for others not so much. At the outset the cancer plans are reassuring and we feel we are doing something about it but there are no guarantees, an aspect that is played down. The big difference is that we can see cancer or have a blood test that tells us it’s worth going through the treatments and we fear dying if we don’t. With PMR/GCA it feels woolly unless you get a positive biopsy or scan. It is easy with PMR/GCA to direct the fear to what we think we know (the doom laden side effect sheet) but turn a blind eye regards what uncontrolled inflammation is doing, some of which can be life threatening or life changing.
Starting steroids isn’t a one way ticket. If you decide it isn’t worth it, you can wean off more quickly and carry on with the suffering that you feel familiar with. If you carry on with a weaning program that suits your condition’s activity you likely end up free of your pain and other nasties.
I was terrified at first to take Prednisone too.It took a year of hell to be diagnosed and after all the pain and suffering I couldn't get it in fast enough.I would rather enjoy my life almost pain free for than suffer like I was.I was useless and to me it was worth the risk.I understand your fears cause I have many but I wanted to live.Prednisone gave me my life back! Good luck with your journey!
I remember well the devastation I felt when diagnosed with GCA and told I needed steroids because of the seriousness of the condition. My mother died at 56 when taking steroids for RA. I had an uncomfortable year managing side effects of Pred and other meds as well as brain fog and not knowing who I was supposed to be now. But actually I am so grateful for the medication and care, and this forum has been so supportive and informative.I've now after 2 years come to terms with my medicated life and am content with how things are going so far, have reduced Pred to 3mg, and am now getting a life back.
I do hope you will be able to get through your understandable fears, to ask for help with that and to take whatever you need to cope with thecondition.
I wish you well on your journey.
bit off topic but I took steroids for 5 years from age 17 combined with RA drug of the time in 1979 for adult onset Stills disease which manifests as rheumatoid arthritis with fever etc. I’m 62 now and never experienced bad side effects from the steroids at all. Wishing you good days.
With the greatest respect, would it help if you considered changing your nom de guerre to something healthier; something that may even bring a smile to your face? Phobias are miserable afflictions surviving on fear and producing anxiety. Anxiety survives as worry about the future regarding the phobic subject. Reflecting your words, "I'm afraid of developing GCA"; "I can't take it anymore;" "the severe possibilities;" "fear blindness;" etc. describe situations which are contemplated but may never arrive. As I re-read this, I'm surprised at my accidentally patronising tone, which I can assure you I am anything but. It's merely reflective of my concern for you. Would you consider visiting a competent EMDR psychotherapist as a possible first step in ridding yourself of this painful pest. An officially estimated community prevalence of specific phobia suggests that about 10% of people in the USA experience the problem. That's a lot of people. You are certainly not alone and please, never give up!
Hiya from Wales, I'm so sorry that you are feeling so low, and have so many worries, I can't begin to understand as I'm not you, however I do recognise some of what you are saying. One piece of advice - go to see an optician, they will be able to tell you how your eyes are. I was scared and went, I wish I had done it sooner. The Optition knew all about PMR and CGA, and put me at ease. Take care my friend.
Yes I’ve been to my ophthalmologist. He seems to think if you have elevated markers, you have GCA. Which I understand from my rheumy is not the case. He told me he sees no inflammation of my optic nerve, but said the blood work would tell me if I had it??
Ophthalmologist seems to think if you have elevated markers, you have GCA. Which I understand from my rheumy is not the case.
Well they are both partially correct…the problem is elevated markers just show you have some inflammation in your body.. but not what is causing it. Which is why we say on here ad infinitum… you need a variety of things to either rule it in or rule it out… symptoms always being the major consideration.
Some people don’t have elevated markers either at diagnosis nor during a flare..
Plus the GCA cells are not spread evenly throughout an artery, they are random, nor are they necessarily present in all arteries….
And some people don’t have the symptoms…. That’s ehh it’s so frustrating…🫤
The doctors told me nothing about the impact of steroids aside pushing other drugs to protect bones and stomach which was probably a good thing ! I arrived at this forum crippled by side affects despite being virtually pain free from PMR. However it opened up a whole new Pandora’s box - I was convinced I had GCA owing to the jaw pain, visual disturbances, headaches and pain going down arms. I learned the steroids were fuelling this anxiety and along with all the other side effects it improved with each dose reduction. Knowing what might happen, being reassured it’s normal and what to do about it will help you get through this. You’ve been through a lot so your fear is normal and would urge you to get some help with the anxiety. This often feels impossible but just focus on the baby steps for now
How long until I can give up the Pred?
So ready for answers!
Never give up if you know something is wrong with you - especially if you're a woman
Scared 😱
Giving In
