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hi i'm jenny and new to having giant cell arteritis

hi i'm jenny and new to having giant cell arteritis

hi 3 weeks before Christmas i was having 5 head pains on one side of my head each hour ,i went to see my doctor and it all went mad from there as she thought and rightly so that i have G C A she come to my house that day at 9.45 pm after a full days work so i could get the steroids into me that night or as she said i may have gone blind before Christmas -i said no to having the biopsy and i'm glad i did that now as it may not have shown it up any way

i had so many blood tests and a ct scan last week then coming up a full body scan in Feb but its the tiedness that is getting to e you see i do not sleep well and i am up by 5 am each morning wade a wake doing house work -i never get past 9 pm at night now days before i'm in bed and i just cant keep my eyes open in the day time at times it just hits you and you have yo give in to it, i lost my husband with cancer last year so i can rest in the day and be up at night times but i feel i cant go out for a whole day mostly its mornings then home for food and rest then up for 3 hours then back resting again sleeping more then resting. i'm on 40 gm a day and so many other pills one for bones. b p.others to line the tummy est

i do not understand why i get so very very tied will i have this for the rest of my life?

from Jen-i'm 70 years old

i also have bad raynauds

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Hi Jenny .. .that's a lot to take in and process and lucky that go came and dropped pred off. So welcome. Others with GCA will be along to help you work out what to expect..i have PMR so not as bigger doses of pred. But pred head is well known and brain fog. I have seen people having sleeping problems on higher doses of pred. Hope you start to feel a bit better. Fatigue is defo a part of the autoimmune aspects. 🌻

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thank u so much its a help to know u r there

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i should not have gone out today but i drove a friend out to lunch all went well but i have left two home made cards in the disabled loo then took car across the main road near findon black house (not a good place to cross and one cant turn the car and just go around so i backed but hit the brick wall -stoped as soon as the beeper went off -so just marked one side of t6he lower part of my car-i have got touch up paint so that went on as soon as i got home it will not show (well who cares if it did) its not the end of the world-go job my husband was not there-this illness makes you so awhere that nother matters only getting through that day-i think i will stay in tomorrow and recover.

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Sounds like an adventure of sorts!! At least when you feel so bad it's hard to bother about such things. I hope you do give yourself permission to have a rest tomorrow🌻

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Ohhhh Jenny, my heart goes out to you! I too was diagnosed in early December, with GCA, and PMR. It came out if nowhere! It took over 19 days to get an official diagnosis and to be put on steroids. My life too has been turned upside down with unbearable fatigue, sleepless nights, energy-less days, brain fog, and forgetfulness. My med doses were tapered down, but I crashed and burned, so they were increased to 80mg. It's hard. It's rediculously hard... but you're in the right place! There are many smart, experienced, caring, empathetic people in this forum who will help get you though this. I'm 63, I worked and volunteered at the local hospice, up until mid December. The hardest thing for me has been learning how to slow down. I too get so very tired and don't have the energy to do anything at all. I know it's hard, but like eveyone has told me, listen to your body, trust your instincts. When the experts see your post you'll get lots of helpful responses. Hang in there. ❤️

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oh how it changes ones life i started a small art group up last sept 2017 at ny church -no money taken out for any one just running it to help others learn watercolours but it all really started from then as i would do the art class am then all pm have to rest up and sleep the head pains was there but not to bad then but by november it had got bad -yes my lady doc saved my sight she is so lovely and feels for me but had only read about GCA not seen it before but now im in with the hospital team scans are booked and i see the main doc there every month then blood test at my doctors yesterday for diabetis that i did have but not now and for my liver-im having to keep the art group going as really lovely people need my help but as i as doning it as a paint along with me each week this has got to stop as i just cant do that now i will find away to still help them but sit down and them come to me, i have one man he is going to be 103 years old in April and loves to come each week but i get so tied all the time-its great to find this on line help sent to me from god -i know

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As I was told when I found the forum...it does get better. Have a good rest to and let pred work on inflammation. If the art class helps you just don't do anything else on that day or few days. No housework shopping etc. Save energy for pleasurable things. Wonderful that 103yr old learning new things!!🌻

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yes i did blood tests yesterday so no food till ten ish then i went to a card making club in afternoon but i leave when i get tied but doing the two things in one day hit me hard and i feel u r right just one thing a day

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thank u so much -i do feel as if i am in a fog and just cant clear my head

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Welcome to our little gathering place. Glad you found us! You can’t possibly know it yet, but finding this forum is a blessing. I, too, have GCA (diagnosed in May, 2017). First, what a great thing your doc did with delivering the Prednisone to you. That’s encouaging in that she caught it and acted so fast!

I’ll leave the medical explanations to the experts AKA the Aunties, but do know that exhaustion is normal (due to the disease?) as is the inability to sleep soundly (due to the high dose of Pred). Don’t try to fight it -it is what it is - just get sleep and rest in when you can.

Others will be along soon with welcomes and information. Take gentle care of yourself.

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yes u cant fight this just give in to it the doctor said just go with the flow but i did not think it would change my life so much -two hours up and doing small bits then two or more hours rest or sleep then hours awake at night time -i read or write myself nots one night i painted a wall in small bedroom but it did not make me sleep any better after doing it just made me more tired the next day

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I am so sorry about your diagnosis and the loss of your husband. Sadness and sickness can really make you tired...and then the prednisone and the auto-immune disease certainly add to it. I do .not have GCA ..but do have PMR and am on prednisone and get also get very tired. I am fortunately bone lazy and love lying around watching your British Crime Shows and reading books... so I have no great disappointments in my new found guilt-free laziness.... But I also do love to exercise and see friends so have found great comfort inthe Spoon Theory is a good way to look at your fatigue. If you plan for your exhaustion..and go with it... you can have energy when you need it! For example we had a HUGE snow fall today. I love snow and more than anything love to shovel it...which I knew could really beat me up... so I did NOT go to the yoga class this morning but instead waited for the snow to fall and then was able to go out and shovel!!! Now I am resting again.. shoveling takes a lot of spoons!!!! (I think you can find it here: ) butyoudontlooksick.com/arti...

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yes i now think it was all the stress i have had over these last two years of my husbands illness (cancer) that has made my body do this illness to me -i could write a book on all that iv been through fighting to get the right treatment for him - but he has gone now and i was doing so well friends said i was getting out there again even went 6 months once a week to ballroom dancing (not to meet any one) just to have fun well i had to stop all that as my head pains

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Hi Jenni, and welcome.

I had GCA for best part of 6 years, and I unfortunately the fatigue is a bit part of the illness. Added to that, the high doses of Pred you are on are playing havoc with sleeping. I found that if I took a Nytol every 4th or 5th night I could at least get a good night sleep without becoming addicted to tablets.

Have a read of the attached, it may help you get your head around things a little better, it’s all very bewildering at the start.

healthunlocked.com/pmrgcauk...

You may find there’s a local group near you, just a chat over a cup of coffee makes you realise you are not alone- and that helps especially as you are widowed. (Lost my hubby during GCA), if you tell us where you live (roughly) we may be able to recommend somewhere.

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hi thank u its all so new to me i even find going to my church each week hard at times but iv told my lovely lady minister about it and she understands if im to tied i cant go

i love in worthing west sussex

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Hi again,

See attached list of pmrgca groups, hopefully there should be one close enough for you to attend. Just ring person named under whatever group you’re interested in, and you’ll be sure of a warm welcome.

pmrgca.co.uk/groups/

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thanks again

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Hi Jenny,

Just to let you know that there's a PMR/GCA support group in Worthing. Our next meeting is 13th February at the Durrington Community Centre , beside the Tesco complex. Hope you can make it.

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oh thats just the day i have my full body scan -i would have gone if it was not for that when will be the next one please

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Usually the second Tuesday of the month from 10.30 - 12.30.

Contact at worthing@pmrgca.org.uk

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no i have a full body scan on that very day not till noon but if i went to the meeting i would be to tied for the scan i may even drop asleep as it was being done but i will be at the march meeting and love to make friends with u all

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Hi. I feel for you. I have GCA and had a couple of months of awful pains on both sides of my head before I found small raised bumps both sides of my temple. Like you I had a wonderful Gp who looked at them, rushed me to a nurse for a blood test and by that evening I was on 40mg of Pred. This all happened March 2016. I suffered a foggy head, extreme tiredness and sleepless nights for a year. I feel I am on the right road now and take 12mg each day. I have learnt to pace myself and accept this horrible illness.

I have joined a support group which meets once a month between Rustington and Worthing and I feel you would get a great deal of information and, perhaps, comfort if you could join us. I can let you have the details.

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oh yes pleaee i want to go to any group where i can learn more about this

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Sorry to see you cannot make February meeting, perhaps the second Tues in March.

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Lucky you have a doctor who was on to it, Jenny. Yes, had she not put you on steroids you could have lost your eyesight!! Hey - it's a long, hard journey, frustrating, frightening but the assurance from all health professionals is that it is very treatable, very manageable! Mine was diagnosed in Dec 2016, GCA over, now on 3mg of prednisone. Back to feeling 99% well which I never thought possible. And loving my curly hair that was one of the nicer side-effects!

Warm cheers from Auckland, New Zealand.

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The tiredness is part of the autoimmune side of the illness - it attacks your body and it is as if you have permanent flu. That must be managed by pacing. You will find this post

healthunlocked.com/pmrgcauk...

has links to several articles that help explain.

There is a very good support group in Worthing

pmrgca.co.uk/group-pages/su...

which I see meets every month.

If you have bad Raynauds have they not considered it MIGHT be another vasculitis? Though the scans should show that.

No - you shouldn't have this forever - 2 to about 5 years is the usual. Doctors may say 2 years but that isn't common. Most people I have known with GCA over the last 8 years have got off pred in under 5 years - and for most people they were at relatively low doses after about a year. It is the start that is hardest and as your body gets more used to pred you will feel better. In a year you will look back and see how far you have come - I promise. That is providing you don't get rushed to reduce the dose when your body isn't ready. But it sounds as if your doctor is a good one. They are rare!

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the meeting with the main doctor at the hospital weeks ago now he said he wanted me to lower the steroids as soon as poss as no good for my body and now im to see him on the 9th feb to see how i am doing on 40g a day - how many do these lower u to to give it a go do u know?

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If you have GCA then lowering pred too fast and letting in a flare that could still cause loss of sight is peanuts compared with what pred may do.

But you can lower it as long as you don't have symptoms again - if you do, stop reducing and go back to the last dose where you were happy. Down to 40mg shouldn't be too bad - and hopefully your rheumy will be happy with that.

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i have know of two men that have GCA one said to a friend he has it but is not taken or offered any pills for it she said it was true yet he has it for sure i cant understand that at all and he is not tied like i am most of my days the other man was in my art group today but no time to chat with him yet but he said he has this illnesx and is on steroids for life -he is lke my self a member of our church so i hope to see him there for a longer chat soon

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do men have GCa less then woman?

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The second I might believe - there are doctors who will tell patients they will be on pred for life. It isn't true, many GCA patients are able to get off pred although it may take up to 5 or 6 years.

The other? No comment - but I don't believe he was given a dx of GCA and was not offered steroids.

About 2 to 3 times as many women as men develop GCA and PMR. That is similar to the ratio in many autoimmune disorders - far more women than men.

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My thoughts are with you Jenny,l too love painting and you were doing such a lovely thing getting people together to teach them watercolour painting. I hope that you will eventually begin to feel better,it will take time but l hope that everything will work out for you ,all the best,please keep us informed how you are getting on xx

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thank u i love art but i really do ot know how im going to keep on going as i get so tied -i get to my church at 8.30am to get set up (only me to do this) it takes one hour hard work to do chairs tables est then get tea items est set up then all come in and its mad all wanting my help with there pictures -i will not let them down -i will tell them more about this illness this week and see how i can change the club so work for us all

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I, too, volunteer - we color for 2 hours each Saturday. I’m also totally exhausted when I get home. It’s not the coloring, but it’s the set-up and getting10-12 elders in wheelchairs down to the room and then back. I couldn’t keep doing it if I didn’t have an assistant. She carries more than half the load now and I’m so lucky to have her.

Jenny, are there people in your church that could do the set-up for you? A youth group perhaps? The young men could set up the tables and chairs and the young ladies could get the tea service ready. That may allow you to keep your energy to paint. The problem is now you’ve used all or most of it before the main event.

I hope you can get it figured out. These illnesses sure make us rethink how we do things, especially those that are important to us.

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i do get the tables up 4 me most weeks we just have to miss the school holiday weeks but iv asked the minister today if the chairs can be put out as well u see most people want to see me and i tell them what colours to use est but things have got to change for me and u to as we get to tied i will just say to them all this week i'm here for you if u really need my help but i will be doing some of my own work in between i think that way if i'm seen doing work i will get a bit of a rest

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i did a demo today i thought it would be my last one as i get so very tied at the moment but i got to club early and sat with my eyes closed till other come in i found by painting then others went and did what was shown -that gave me another sit down -i did get some one each week fro the church to put the chairs out so that will help a lot and two ladys stay to pack up each week so i can keep on with the paint along with me club it is still working well but i got home and layed down all afternoon

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Hello Jenny - My thoughts are with you, GCA is not an easy condition to cope with and it's certainly quite a shock to start with. I was diagnosed 18 months ago, and in fact was in hospital for two weeks as so poorly. It was never explained to me for months that the overwhelming fatigue was due to the inflammation, don't fight it but rest and take it very gently and don't worry you will have good days and bad days. Also learn as much as possible about the reducing of the steroid dose, some people find it much easier to reduce than others, I had a nightmare with it and my body was very steroid sensitive, but not everyone is like that, and I could only reduce in small drops. However am now at 9.5 so you will get there, but still very, very fatigued. Perhaps it might be a good idea to ask your doctor for an appointment with a Rheumatologist, but it sounds as though you have got an excellent doctor. Good luck

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thank u

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yes im under this kind of doctor now -thank u so much for all your help

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My sympathy to you. I was diagnosed ar 75 with GCA and also had to adjust to a “ new normal “ . If there is a silver lining ..it is that you had a caring doctor who saved your eyesight. For that....bless your lucky stars. You wiill adjust I am sure. Just remember ...you are sick and treat yourself accordingly. I found that a Benadryl at night time helped me sleep. Sometimes I cut it in half. You will find invaluable help on this forum. Welcome aboard.

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yes i have a very good doctor and i must be glad i can still see thanks be to god

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Hi Jennytheartist,

I describe the excact same symptoms has I have and still experience ever since I was diagnosed with one in Jan 2017.

All was going good on 15mg of pred managing to omg but then the pain started again and put back on 15mg of pred again.

But Christmas 2017 taken quite ill again getting head aches so my gp on the side of caution has increased my pred which I had just got down to 10mg up to 3mg

And an emergency referral to specialist to see if gca is cause of head pain etc.So now waiting gor appointment to come through.

And like you I get very tired very lethargic and can't get my mind to settle the only difference is I'm male 58 and still working so finding life difficult has retirement is out of the question and still have a young family dependent on me.

Jura1959

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oh i feel for u i know im much older but i have a job just doing to work around the house -i use to gdn put my own veggies in but not this year it will be bought ones and get some one to do the rest in stones not grass i need all my energy right now u to i think

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