temporol arithritis

the doctor thinks ive have temporol arithritis and iv been on steriods for 3 weeks now but i dont feel any better, the doctor has faxed to the hospital asking for an urgent appointment for biopsy that was 10days ago and im still waiting. im in more pain on the left side and my left eye is blurry .

can any one tell me how long this goes on for.

20 Replies

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  • Hi Steph

    Temporal arteritis is a very serious condition. My advice is to go to your nearest A&E dept at your local large hospital. If your doctors are right then this could cause you to go blind. If they are wrong then no problem, no one will tell you off, so don't let that stop you. You must not risk losing your sight!

    Pats

  • hi pats ive seen a doc at the hospital this afternoon he said ive got a bleed and inflamation behind my left eye and put me on steriod drops four times a day for three week and ive got to see him again 18th sept, he thinks ive got temporal arthritis but said it needs to be confirmed my the arthritis doc when o get to see him.

  • Hi Steph

    Well it's all coming together at last. I hope the doses of pred per day add up to a dose that will keep the inflammation under control. If you saw an opthalmic specialist then thats OK. Looking at what those that have GCA have advised, it should be between 40 and 60 mg per day. I see it's not too long before you see the rheumy. If your symptoms do not settle soon, i.e. in 2 to 3 days then forget your GP. Go to your local A&E and demand to see a specialist. You cannot take risks. We are talking about your sight! Very concerned,

    Pats.

  • Steph

    You don't say what dose of steroids you are taking but perhaps the dose isn't high enough to control the inflammation. It is vital that such inflammation is under control in order to protect your eyesight. I definitely echo Pats advice to seek urgent investigation at A&E. Hopefully all will be well - you have nothing to lose but everything to gain.

  • hello celtic

    the dose im on is 20mg my esr is comming down but i still have the other symptoms,

  • Hi again Steph

    What was your starting dose - it's usually at least 40mgs or 60mgs for temporal arteritis, sometimes even higher? It is reassuring to hear that your ESR is coming down and I'm wondering whether you are also having CRP blood tests as these are generally considered to be the more reliable marker in temporal arteritis.

  • Your starting does should be at least 60 mg and you should go to A & E immediately or your Opthalmic department. Please believe me. I don't want to frighten you but I did not have the proper treatment soon enough and lost the sight of my left eye. Because you are already on 40 mg this will start beinging the inflammation down.

  • hi i was started on 20mg and still on 20mg im back at docs this afternoon as ive still not heard from the hospital

  • I echo this exactly as it was over Xmas/New Year when I got GCA which was not diagnosed 'til Jan.8th, by which time my left eye had lost all vision over 3 days, each progressively worse, but when I finally showed up at the Eye Hospital they admitted me straight away on IV steroids 80mg/day! Now down to 7mg/day and waiting on DVLA approval to begin driving again, as you will see on another post. So DO NOT DELAY is the best advice!! Good luck, raymck

  • Hi

    I had issues with left sided head pain which ran into my jaw, at first thought it was a migraine, got worse on Monday and went to GP. Thinks I have temporal artiritis and commenced on 60mg prednisolone, had eye check yesterday - thankfully all clear, and having biopsy today. Think you need to chase this quicklu, if no joy with GP go to A&E. Feeling a little easier, but far from feeling completely sorted.

    Nuttynana

  • hi

    i have tried to chase this twice , i am seeing the doctor this afternoon as i want this sorted , is there any risks to having the biopsy ?

    i carnt do much without being worn out and from hips down hurting , i went to our town the other day only to the bank and one other shop by the time i got back to the car park i was shatterd .

  • how did you get on with your biopsy ?

  • I had a biopsy 2 years ago, and it was fine. Nothing to worry about. Local anaesthetic, a few stitches which came out in 10 days, and it healed beautifully. No risk whatsoever, in fact it is essential that you have it to give a true diagnosis and therefore receive the correct treatment. Good luck. I hope by now you have had your biopsy. If not you must chase it up.

  • Hi Steph,

    Thank goodness you are seeing your GP today. I hope it goes well and you get the help you need. I have not heard of any risks when having the biopsy. Please try not to worry about it.

    I 'm sure you're doing the right thing even though it's so hard when you're in pain. Good luck.

    Pats

  • the reason i havnt heard from the hospital is because they lost the fax from my doctor, i was at the doctors for one and half hours while she spoke to them they have doubled the steriods so that now make me on 40mg, and i should have the appointment for next week, she is also faxing 1st thing in morn for me to see someone about my blurry vision. i will say i wont hold my breath.

    i need this all sorting as she has signed me off work again and ssp is rubbish money.

  • Hi Steph,

    At least the dose will knock the pain out. It's a step closer to you seeing a specialist, but I know it's not just me who is concerned about your treatment so far. I do hope the eye check will be at the hospital as you need a full investigation as soon as possible. Do keep us informed if you can.

    Pats

  • thankyou pats i will do

  • Steph

    Do not wait to see your GP or ring him and tell him you are going to the nearest A&E. Explain the situation and do not be fobbed off. 20mg will not hold GCA, You are in danger of losing your sight and once it is gone, it is gone. 40-60mg might hold it.

  • Hi Steph

    After having these dreadful pains for 5 months and my Doctor saying he didn't know what was wrong with me, in February 2011 my Daughter took me to Aand E, my blood pressure was sky high and I was diagnosed with Temporal Arteritis, the viens in my forehead were so swollen the Doctoe said I could have gone blind that weekend. I was admitted and put on 60mg steroids, the pain subsided within 24 hours, what a releaf. two days later I was diagnosed with PMR/GCA. I had a boipsy a week later when it was confirmed.

    The biopsy is nothing to worry about ay all, I was awake all the time but felt nothing and the Doctor and nurses were so kind to me, my ESR was not reading very high so you can't always go by this. My treatment at Ipswich Hospital has been first class, because of the steroids my cateracts increased and for 5 months I had blurred vision. I have now had two cateract operations and can see perfectly. I am also under the Rhumatology clinic for the PMR, I have managed to get my steroids down to 6mg with the help of Methatrexate. I am not saying it has all been plaie sailing, quite a few aps and downs, I have a disabled Daughter who is in constant pain and a Husband with severe Arthritis, I keep telling myself my pain will get better and for most of the day it does.

  • Hi All

    These things are certainly sent to try us! I think I have been particularly lucky with my treatment. I have had rheumatoid arthritis for about 12 years, and have had a fantastic consultant and services at Christchurch Hospital. Drug regime quite intense but keeps me active and able to work, so a small price to pay.

    Then I get this issue with GCA - saw GP Monday - commenced 60mg Pred, with pain killers - a little reprieve, eyes tested Wed, thankfully just mild double vision in left eye. Thurs had the biopsy - told would take 20 mins, took over an hour, but better to take the timee and get it right. Pretty sure it is GCA as trouble finding pulse as blood flow restricted, had to use a doplar several times. Very sore and painful as they had difficulty finding artery, hence emailing at 4 in the morning, can't sleep, this is because of pain and steriods!! But what a fantastic service... GP tomorrow morning, and appointment booked for rheumatologist in 2 weeks - due to start MabThera by the looks of it. Such is life, but just got to keep smiling, have a weeks holiday next week, but not now going away - should have been camping with 11 Girl Guides - bit too risky.. So do I take it as sick leave?? Have manic job - may well be in the office instead!! Anyway maybe need to try to get some sleep now.

    Nuttynana

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