Happy New Year. I've suffered with RA most of my life, and had cutaneous vasculitis. Now progressed to Giant Cell Arteritis in my temple area. Fisrt signs were tender scalp when hair drying and brushing. That night a sudden headache like no other. Nearest equivalent pain was a sudden bone fracture. Immediate prescription for 40mg per day urgently given to preven permanent blindness and stroke. No blood thinners (why not). On day three since medication. I dithered. My mistake. Anyone else, please do not hesitate to take the med. I am full time carer for my autisic son who has a higher level of autism than normal but very very aspergers and dyspraxic.
anyone else out there can talk about this from their own experience? I am fully up to scratch on RA but not this effect of my auto-immune system.
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daphne_retired
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The risk of stroke in GCA is more due to the swelling of the blood vessels leading to less blood being able to flow through them (a bit like standing on a hosepipe slowing the flow of water) rather than the risk of your blood forming clots which lead to a blockage. So it isn't stopping your blood clotting that is important, it is reducing the swelling, hence the high dose of pred.
If you would like more information about GCA here are some links:
There is also a new National Organisation PMR GCAuk which covers England, Wales & Northern Ireland - now has a website pmrgcauk.com.
rcpe.ac.uk/sites/default/fi... (this is a paper by the Bristol group which is aimed at GPs to help them diagnose and treat PMR and GCA more confidently and using a scheme that results in fewer flares due to reducing the pred dose too fast or too far, which is the primary cause of flares).
and there is also information on this site, both a forum and information pages which have reliable medically approved information
Oh, thank you thank you. I will sleep a little tonight after reading this. I feel calmer. This is the first time in my life that I am woried about my health. Previously I have cared about it but not worried. So thanks for helping me to understand his part of the subject.
Hi again PMR pro. I am posting this as there has been a big breakthrough today. Here are the events of this Sunday from this morning.
Briefly:
Sunday morning I decided the action to take. I chose, first phone 111. Mistake. Waste of time.
Next move. Out of hours GP. Now success. Come and see me, he says. When I get there on my bicycle, it is a different GP, a lady. We have a long chat and I explain everything and answer all the questions. Alas....she repeats what my own GP told me. Essentially no more pred and I am to relax and go home.....I was upset by then having fought my corner for three hours. Tears came and I was shaking with frustration because I KNEW THE GP'S WERE NOT BEHAVING IN A WAY THEY SHOULD. She realised the state I was in and said she would call the registrar of the hospital. She repeated most of what I had told her to him as best she could and I listened. He immediately explained that she was wrong and that I should be in Secondary care and still be on PRed at 40mg per day until the time I see a Rheumy and that he/she will then take over. When I heard this I burst into tears with relief. I was so pleased, at last someone who immediately knew what I was talking of. The GP's attitude melted to one of sympathetic cooperation. She gave me a prescription for 40mg pred with an anti-ulcer stomach pill. A fast track letter to my GP to get me to a Rheumy. Exactly as the registrar told her. She was so kind and so caring, and so totally different. Soooo, I now have the pred med and an appt in the offing. Of course now I have the three to six months wait, unless someone cancels+the task of talking to my own GP in a way that keeps my relationship in place. (As I left, the GP, she was also going on about osteoporosis as a new long term concern caused by the pred).
No Daphne - a fast-track letter means it is an emergency so you should be seen within the next couple of weeks at the very outside. A proper fast track service sees the patient within days, Bristol aims to see the patient within 3 working days, Southend did a study on fast-tracking patients in the same way stroke is done and tried to get it implemented all over the UK but for some hospitals it simply doesn't work as there aren't enough GCA patients so they accept phone calls to the department and fit the patient in. The problem in the past has been that GPs have referred patients as "urgent" which means probably 2 months instead of 5 or 6. The significant word is "emergency" or "fast track".
Hallelujah - what a lovely registrar! And I hope too that the OOH GP has learnt something today so when she meets another GCA patient she knows what to do. There is plenty of time to worry about osteoporosis - your bones won't crumble overnight...
You are a brave and resourceful woman Daphne! And I love your photos!!!!
Well, now I know, thanks. I will pop down and talk to my Gp tomorrow. I will explain to her of my involvement in your website, and see how she comments. Also on your wonderful progress with fast tracking and hospitals. The last time I saw a rheumy was 2008 having waited six months from onset. (the flare finished after two months). The flare was the loss of use in my hands and wrists with almost zero strength in my hands and arms. However, we mutually agreed that RA was not the cause. From this site I am wondering if it was PMR at that time. The vasculitis came in 2012. Arm, tummy, foot. all at seperate times. MRI (done privately_ showed spinal damage but no RA. Anti-ccp blood test showed normal, but RF was consistently +ve. It will be interesting to review 2008 to 2015 with a rheumy. I hope she's a good one. Thanks for spending so much time with me. It is all soooo good after years of being 'on my own'. D
Hi again PMR pro. Not sure if I have overused my allocated text to you. Hope I have some left. May be duplicating. Apologies if so
Here I am writing to you, three hours after visiting my GP. I will share what I was told. My GP has never heard of fast tracking to the rheumy. However, she will refer me (grudgingly). She appeared to disbelieve my story of the registrar and what he told the OOH GP. That is: my condition is a medical emergncy and I should be on 40mg daily until I see a rheumy, which shoudl take place asap.
My GP says her other case is blah blah... (confidential), but obvious to me irrelevant.
Incidentally my GP's blood test was simply ESR and did not include CRP. Which you and I and the rest of the polywotsit people know is rather an important measurement to make with onset symptoms of GCA.
Thank goodness I am eddificated! Thanks to you and the websites you have passed me on to.
Naturally, I am now transferring to another GP. I have traced the one that I saw in the OOH clinic yesterday, and am registering with her.
Finally, on Thursday I will finish my five days at 40mg. I know it will be dangerous to stop. I will and must ensure that someone gives me more and chase the rheumy appt.
Mavis, you and your site members have and are doing, a wonderful job. If you had not been there......well perish the thought. Please feel free to share my words with others that you may think it will help.
Remember though, that my symptoms have built up through negligence over a decade at least. and GCA is only the latest manifestation. It is a difficult systemic auto-immune, currently identified as an unusual form of RA affecting cutaneous and medium size blood vessels and causing joint prolbems that move around and flare to becoming disabling. I have not seen a rheumy since 2008 when 'conventional' RA was discounted and I was discharged with a flea in my lovely ear. (The flea is still there) So my disease may or may not be Polywotsit, or may include it. another contender is Lupus. A rheumy hopefully will get to the bottom of it.
BTW, the vein on that temple was enlarged and moderately swollen as I went to the emergency clinic on Sunday. Pain was returning as was my other symptoms of joint failure and pain in those. I knew I was entering a major flare due to immediate cessation of Pred from 40mg to zero. This is my opinion only. Not discussed this with anyone, except sunday GP.
Take your pred ,I developed GCA last September like you started on 40mg .Hope you have a nice GP it will help just remember most GP`s have no knowledge of this illness think of it as a joint learning curve .
You must be on the 40mg for 4-6 weeks . You will be very tired so if you can get extra help with your son in fact demand it .phone the helpline they will send you some info and also tell you if there is a support group in your area
Every one on here is great with a wide knowledge and most of all a sense of humour and no question to daft
Thanks for this, Olive. My son is a member of an autism group. He also gets PiP. I am due to chat to my GP tomorrow. She is a very nice person. She recognised the sympoms immediately. I found what you say to be true with other GP's when I have had the vasculitis and RA flares. I am on no meds for those. I have suffered with it all since childhood. It has been very very slow to develop The rheumatologist tells me that the prognosis is good as I am over 60!!! Meaning it doesn't matter as I am old. However, they do not realise I am an official full time carer. That is really why I am worried. I am getting help from experts though, since last year. My son is mature now and I have been a single parent for most of his life. Thanks for the chat.
Welcome to this site, you will get lots of good advice, and good wishes from everybody.
I have had GCA for almost three years, and although life is not easy, it is made easier knowing that lots of others are going through the same as you.
You will find it difficult looking after your son if you get some of the Prednisolone side effects, but hopefully if you talk to your GP you may be able to get some outside help.
Suggest you read Kare Gilbert's book; although it deals mainly with PMR as apposed to GCA it does contain lots of good advice. Available from Amazon.
Difficult though it may be, you now need to concentrate on your own health, and try and get as much rest as you can.
Good luck and look forward to hearing how you are progressing. DorsetLady
Hi Dorset Lady, tanks for this. The replies I have had have really helped me. Please enlighten on me on which side efects may reduce the help I can give my son. At this stage of his life, my help for several hours a day is really boiling down to several phone calls a day lasting up to an hour each and much house work. He is managing to live independantly. I cycle the mile or so, there an back every day, so physically I need to be good. Interestingly, the pred has reduced significantly my other pain; ribs hands wrists, but the burning feet and toes are still there but not so strong and my a-fib has generally been worse. I run out of my pills today and will phone Sarah my GP to see what happens next. Thanks again.
If you mean you will run out if pred - you must always keep a good supply to hand and don't go away anywhere without a day's dose in your handbag in case for any reason you can't get home. You should also carry a steroid card in case of an accident or being taken ill to inform the medical services. The other pain is probably PMR pain which can also be a symptom of GCA and also responds to pred though at a lot lower dose if you only have PMR.
The high dose of pred may make you tired because of poor sleep - or it may make you hyper. But the illness is a serious one and the medication is a powerful one - one, other or both may leave you feeling quite poorly at times but only time will tell. Everyone is different and responds differently. You may find concentration a problem. Most of us with PMR struggle with housework - maybe not so much with GCA!
Thank you PMR pro. The development to day came as a surpise and I would like to go over everything with you. The GP called, and she told me that my markers are low. Esr of only 10, not over 50. I trust my GP, and I was pleased. She then said that as the markers are low, it could not have been GCA. I am not to be on prednisolone anymore. All she could say is it must be a variant of the auto-immune system disease I have had all these years.
Please let me run through the events with you: Thursday night I used a Nytol, sleeping aid to help my brain to rest. I was physically very tired, but mentally very alert, and when like this, every couple of weeks, on one night I use one Nytol. It rests my mind for about 8 hours. At 2am, four hours after taking the Nytol, I was in a deep restful sleep when I had a very sudden acute pain in my left temple. Such a pain in my head I have never experienced in my life. Bear in mind I have a cervical problem giving me regular problems with neck and scalp pain that spread over the head. These come on when active, and corrective exercises alleviate them. This occurrence was when at complete rest and very sudden. The closest pain condition I have experienced was a broken toe and a broken finger. Both of those gave the same level of initial pain. However, this pain subsided in a few hours and settled to be moderate with pressure on the temple and I observed some slight swelling on the blood vessel. Also the previous few days that week, whilst brushing my hair in the morning I noticed that my scalp was very tender to my soft hairbrush, I tried three types and all were the same.
I had no prior knowledge of this condition and had no mental worries of it. The GP and a nurse both diagnosed GCA that day.
I am now left with a temple which still has some pressure all the time, as though I am pushing my thumb into it. I am a little concerned my GP is wrong, but also, what do I do if/or when it happens again.
Please give me your opinion. Thank you for spending your time with me. It is very much appreciated.
If your ESR was raised and is now lower - that will be because of the pred, not because it "isn't GCA". If this the first time your ESR was measured and it is low - that does NOT mean it is not GCA. About 1 in 5 patients with GCA (or PMR) have ESR levels that are within the "normal range". On that basis your GP is mistaken.
GCA should be a clinical diagnosis - that means on the basis of the symptoms. The blood test can only be a bit of supporting evidence. To be more sure you need a temporal artery biopsy although that isn't 100% conclusive either: if it is positive it is 100% correct. If it is negative - it could still be GCA. The best test would probably be something called PET/CT - a special sort of computed tomography scan that shows inflammation. The scalp pain you describe is something very suggestive of GCA - do you have any jaw or tongue pain? Or anything else?
Well, this is very inmportant. Thanks. I have had jaw pain. I am now worried. But need to be sensible. I have a recent history of jaw pain. Also acute pain in the tongue. this occurs occasionally and is very disturbing. Usually at night whilst I am asleep and wakes me up. So thanks for this. You obviously know a great deal about this subject. Shall I write this all down for the GP. She may get upset that I am querying her ability. She is very very good as a GP, and I would not want to upset her. Please advise when you can.
Sorry to come back so soon, I have had an anxious night. I forgot to say that the tongue pain was on the end of the tongue and always woke me. A similar level to that which would occur if I had stuck the end of my tongue in acid. (I should imagine!). Now, for the first time I have thought is this relevant to my inflam pains. I see that it can be linked to depression, which I have. also in my mouth I sometimes have clusters of Herpes or ulcers, the dentist is never sure. I have Herpes around the mouth and nose and inside my lips. Occurs occasionally. It seems that my inflam may be PMR, as although my Rheaumatoid factor is always +ve, the test for anti-CCP is normal. I have no joint degradation, I bleieve. The flares affect different parts of my system, and are usally at their peak, extremely dibilitating. The Jaw pain has not recently occurred and I put that down to RA in the jaw joints. Hoping this helps to complete the picture.
The jaw pain I mentioned is called claudication pain: it comes on when you are chewing and is a bit like cramp, but goes when you stop chewing and starts up again when you start to chew again. I found I had discomfort that verged on pain when singing too - also using the muscles and them not getting enough oxygen. I know tongue pain can also be due to GCA but I don't know any more than that such are where, how and so on.
Always make a note of things to discuss with your doctor - then you won't forget. If you are on pred you will find it difficult to concentrate so your GP shouldn't get upset - not if she is a good GP.
Thanks. If I ever have that pain in the temple again I have decided to call the emergency services. I have had to return my licence to drive due to mobility failing on braking in emergencies. The nhs will do all my tests and I will not leave it days like last time. I may not be so lucky next time around. You have been a great help to me. It is very much appreciated.
Yes - sounds like an idea! You could hardly use your bike to go to A&E could you. There are always taxis - if you don't live in the back of beyond or 30 miles from the hospital like where my daughter is a paramedic! Across the moors...
And no, leaving it days is not a good idea! My mother in law always said she waited 3 days before going to the doctor - so I pointed out that wasn't a good idea if you were having a heart attack or a stroke!
I found when I started Pred, albeit at 80mgs a day, difficult to sleep, or a least I could get to sleep okay, but then wake up about 2.30 and not get off again. After a few nights its becomes very debilitating, for me anyway. Hopefully as your dosage is much lower, then you may not be affected. I also found that although the Pred did take away the pain, I still felt very tired, and had to be very careful not to overdo things on the days I felt good.
I think I may have has quite severe reactions to Pred for a few reasons:
The high dosage obviously,
The fact that I think Ihad had PMR/GCA undiagnosed for about two years, so not sure how much damage had been done,
The shock of the loss of eyesight in one eye, and
Also being carer for my late husband.
However, the good news is, I have just returned from six week holiday to New Zealand, and feel good! Best of luck, DorsetLady
That's interesting I have been in hospital having 60mgs intreveniously, then on 60mgs tablets. I am nervous about reducing Pred tomorrow to 40mgs. The other point you raised was about sleep, the same as you I have no problem going to sleep but I wake 3:00am and I am wide awake with no chance of getting back to sleep. So far I don't think it has affected me too bad. Have you found any solution to it? In the past any change of Pred amount made me suffer quite a bit. Int.eresting read thanks. Tim
I also found Nytol good help when suffering from sleep deprivation. Fortunately as you reduce Pred sleeping patterns usually improve. Now I'm down to 5mg I have no problems sleeping - in fact I have more problem waking up!! DL
As some my know one of the first things I had problems with was sleep stopped getting any never been a good sleeper and used chamomile tea plus word service as a form of white noise to help for years .posted on here and took a bits from a few posts
What I came up with was . No tv computers screens of any kind for 30 mins before bed went back to paper books not my kindle at night still had chamomile and radio cotton t-shirt bed socks ,plus every 3/4nights nitol have gone from no sleep to 5 out of 7 good night's I still wake up but I'm happy to stay in bed for 6hours which has been my normal amount of sleep since I was in my teens.One strange think I am a bit of a coffee nut use only fresh beans have a delonghi bean to cup machine the morning after the nitol I only want tea first thing after 2 cups then I go back to coffee
I will say goodnight turn of tv be upstairs by midnight read drink my tea hubby already a sleeping be up for 7 ready for grandson coming for breakfast. Olive
This is all good, and makes sense to me, except the coffee bit. Also, I have read and found that if you have Wi-FI or an internet transmission like a phone or kindle within a yard or two from you, then the radiation from them will add to your woes with regards sleep. The radiated waves are talking to the base stations or mobiles even though we are not using ours. The levels are quite high. A radio of course does not transmit, so that is ok. Hope this helps.
Hi all ....I struggled with sleep issues when I was on 40mg pred for PMR and suspected GCA about 10 weeks ago. All tests had come back clear including biopsy so rheumy ruled out GCA . I struggled to sleep as I was tapered down from pred, but discovered if I went to bed earlyish and woke up at 2 to take pred I slept well till about 7.30 with no shakes or side effects. Worth trying....the Tv and computer or phone in bedroom is also a no no ! At moment am at 7.5 mgs and will slowly reduce to 5 in about 4 weeks or so. Woke quite achy today so maybe a bit soon to be down from 10..following Dr thorne taper.
Hi bumpermac.....I hope that is not true, I have watched supersize me dvd. Yuk.
On your issues: have you GCA? According to PMR pro and their websites, the biopsy result of normal may mean that the sample taken has no large cells contained therein. Check out all the lovely info in those web pages. Your pattern seems similar to mine. I found the WI-Fi (BT) is better turned off if I am resting within a yard or four of the router. The other stuff TV etc is a definite no no. I will bear in mind your words on 2am dose, but what about the ulceration as there is no food in your tummy......unless you are having a bumpermac from McDonalds first.......
Hi Daphne...would love a big mac when i waken at 2. I am very lucky no sign of tummy probs with pred. I occasionally suffer with gastritis but strangely enough the pred is not affecting my stomach . I sometimes take pantoprazole if I feel a bit acidy. Take a plain biscuit when I take meds and just go back to sleep. I am not dealing very well with my diagnosis and am so impatient to get off pred .
Had symptoms of PMR for about a year or so and only when I had a constant headache over my eye did I get referred to rheumy. All my inflammation markers were normal, biopsy was too. Then went to opthalmologist had intense exam and he also found everything clear ! Very frustrating, I also suffer with costochondritis which is also pretty chronic.....I still love walking and keep going, by the way Im a youthful 66.
Nice to talk to you I seemed to ramble on on this post !!
That is a coincidence, Madny. Please dont have a big mac. The biscuit yes. oh, how I hate junk food. Here I am, at midnight and as bright as a button. I need to gen up on costochondritis. I still bike, hard to walk sometimes. Cannot drive anymore, right /leg dont work in an emergency. Shame. Still I can hoover and wash up, what else are we for I wonder. I can ramble too. Please ramble as much as you like. Daphne.
PS: now back on 40 mg/day pred and worried. Pain all gone, and temple normal. Scalp normal. Brain abnormal.
I too was diagnosed with GMA Oct. 13. Have been on pred ever sence. My symptoms were; I thought I had a cold as I was mooving a farm and doing a lot of phisical labor then I thought it was the flu, when I finaly went to the Dr. he said I had a sinus infection and gave me antibiotic. The night of the third day the cold air made my sinus hurt and I could not lie down, I went into ER Sun. AM. I was lucky to get a Dr. that was very courious and informed. That is when I found I GMA. I was put on 60mg pred. After 3 mo we started reducing by 10's when I got to 30,(the reduction from 30 to 20 was the hardest) I slept most of the time and had no energy. That is when I got on line trying to find out why I was so tired. I found Dr Lam (he is a adrenal gland spec and has a iot of good info.) I went off coffee and anything that would excite the adrinal glands and started taking Vit. B5 and thyroid helper. (the adrenal gland also affects the thyroid) I am now going down on the pred and am @. 9mg. I have a Dr. appointment Mon to hopefully go down to 8. By the way you know the pred is bad for the bones. If your Dr. is after you to take the bone killing stuff be informed before you do. Please check out " Save our bones.com " I have decided to take her advice and use her program, that of course will be your decision. Best of luck to you Betty
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