Tempola Arteritis a week ago today after having severe head pain so much so that it hurt to lay my head on the pillow. I was given an emergency hospital appointment at a good hospital on Monday whereby my head was scanned and I was confirmed with this condition. The doctor told me I was a complicated case as I have fibramyalgia, poly arthritis, osteo arthritis plus trigeminal neuralgia and now this. I am 54
I was put on 40mgs of predispose and then on Wed my left eye became more blurred so I was immediately advised to go to an eye hospital where they found the left artery in that eye was swollen.
The prednisone was upped to 60mgs and i feel so tired, couldn't stop eating etc.
My right eye by the way i have stigmatise and can hardly see out of that eye anyways.
I feel like I'm falling apart. I was told I would be on this high dose for two weeks and would be eased off after 8 weeks totally.
now i am going to have an injection of 120mgs prednisilone which should last for a few weeks then the steroids will be taken down gradually and was told i should be off them by July next year!
Reading on here I hear otherwise also can you get a relapse at any time. I was scanned again on Monday and my left side of my head was clear but my right side isn't.
I'm scared plus there are so many side affects to steroids but I don't want to go blind or have an aneurysm either
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shekinah66
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Hello. Yes, it’s a shocker. I was 54 when GCA flared up and like you I had Fibromyalgia at times but the pillow made of rock feeling was nothing like it.
There is a lot to learn at a time when you are reeling from the shock and Pred. High doses really are a rollercoaster but it will pass so just buckle up for the ride for now and be so easy on yourself.
Eating- get on a super super low carb diet now, you will thank yourself when you are not 3 stone heavier or on a blood sugar boom and bust or diabetic. I didn’t put on weight at all because I did it from the start, though people who have not, do lose weight and regain control of blood sugar. The good thing about low carb diet is that you can eat plenty. By low, I mean no pasta, rice, potato, flours and of course no sugar. The fat in the diet keeps you more sated.
So, for a while you may feel out of control, weak, exhausted (also from GCA) but jazzed up, a little bit mad and emotional. It is temporary and hang on to the fact your sight is being saved. As the dose reduces and you become more accustomed to it, you’ll even out. This is the hardest bit but they don’t tell you so it can freak you out. Some people have stopped their Pred because they’ve read this as a severe reaction rather than par for the course.
You are only a short way in, you’re getting the right treatment and it’ll take time for the GCA to fully settle. Try not to worry.
A year and off the Preds, um, I’d be surprised and hope you aren’t hurried off Pred because a relapse is more likely. However, in a year and at a much lower dose, you’ll not be feeling like this!
Stick with this group, you'll find lots of support and a wealth of information and experience from people who really do know what they are talking about. Please don't be scared, be cautious. I think the plan to taper you off steroids so quickly is ridiculous. I have GCA and was told initially by my family doctor it would take minimum 2 years to recover. Well, it's now 1 year 11 months and I'm still gradually reducing my steroids. My rheumatologist has told me I have probably another year at least. However you feel start to feel better over time. Just take it easy and be kind to yourself. I'm sure our trusted experienced friends will be along to talk to you, they can offer expert guidance. X
Guidelines are if you are on 5mg or more of prednisolone for more than 2 weeks and have other issues, not sure of all of them now, but if you ho onto the govt website there is a questionnaire you can fill in and if it calculates you need help it will register you. Sorry can't give more details but using phone and useless at multi screening !
Shielding is probably finishing soon - my daughter is rejoicing she can go back to work on August 1st. In the NHS, just as the second wave arrives probably!
Well, if it was me on high dose now, I’d be shielding. Yes, the steroids might help stop the cytokine storm they talk about with Covid19 but your immune system will be rather gagged, so secondary infection is a real risk.
I think they are a bit optimistic at you being off pred in a year! However - time will tell.
Snazzy has told you the basics - above all, cut your carbs, especially processed ones and fruit, Don't worry - you are on pred, that is protecting your sight as long as you are on enough and if symptoms return it probably means you need some more. Aneurysms are usually a late problem and they should be checking you every couple of years so one would be caught long before it is a problem,
I was diagnosed with GCA in January this year after becoming unwell in December.
It sounds like your medical professionals have acted swiftly to safeguard your vision and to reduce the inflammation.
It is natural to feel scared. I felt like this for the first 3 months or so. Just be assured that you have a treatment plan in place and it seems your doctors are being proactive.
I was on 60 mgs of pred for a little while. Over the last 4 weeks I have tapered from 40 mgs to 25 mgs as I am now on Methotrexate a steroid sparing drug. I feel ok at the moment. You are likely to have ups and downs but our friends on this site are so knowledgeable and supportive.
I agree with others when they say be kind to yourself. Rest when you need to and have some gentle exercise. Diet is important too.
Yes it's complicated , but it sounds like you've had a very good hospital experience and your doctor(s) are on top of things.
It took me 6 days on 60mg Pred. To get relief from the head/scalp pain. It happen...bear with it.
I have every imaginable side effect from the steroids some of them settled after a while but I still have some and they affect me every day.
It's something we put up with in order to aow the steroids do their job of getting the inflammaton under control.
Speak to your doctor about your side effects. There may be something that can help.
Coming off steroids us a long slow , careful journey don't be tempted to rush it.
The relapses you speak of are akso known as flare ups.
They often happen when we are too impatient and rush the journey down the doses!
Don't be afraid of relapses. Seek medical advice straight away and kep on touch with thjs forum. The support offered here is wonderful and can allay your fears and worries however many times you need to post!
It's very good that you're under a notable opthalmic hospital. I'd be continuing to shield if I was on a high dose of Pred. Wishing you the very best over the next few weeks.
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