Gca newby

Hi all. I have had headaches on n off for the past 4 weeks n attended doctors who after examining me n listening to my symptoms told me he thought it may be gca n it was serious. Straight away I had bloods taken n was given 8 steroids to take n told the hospital would ring me next day to go to hopsital for tests doing. Up until then I had never heard of gca n was now panic stricken after going home n reading up on it. The next day the hospital told me that gca had shown up in my blood test n more bloods were needed n i would also need a temporal biopsy within the week. I would have never even gone to my gp as I had suffered migraines on n off all my life but what made me go was the pain in right temple n head on right side tender to touch. Even touching a strand of hair hurt so much. I still didn't believe them when they told me. I'm not a person who is ever poorly. I'm now trying to understand it all n it still won't sink in as the pain now gone with the steroids I'm having to take. 12 daily for a week then 10 for week n 8 for two weeks .. its only been since 21st Aug 2014 I went to gp. Still shocked scared n going into the unknown. Terrified of the op too. Any feed back to bring me light n hope on gca will be appreciated. Will I have it for life. Could I still go blind. Also read on other problems that can arise from gca n thinking about that now also. To top it off I just dieted n lost 2 stones n now I'm gonna get fat again with steroids. Do I need a special diet now. Can I drink alcohol anymore. I feel lost n confused n still coming to terms with it. I have always been healthy n well n yet I still feel that way but apparently I'm ill. Thanks

13 Replies

  • What a shock for you! But it will get better, just takes time.

    However you are feeling, you are still ill. The Prednisolone is doing what it should - relieving and managing the symptoms to give you some quality of life - but that is all it does. It doesn't cure anything. Both GCA and PMR go 'into remission' when they make up their minds to do so and the steroids are there to help until then. So yes, you will find you have to take things easy and not overdo it at all, otherwise it will overcome the dose of steroids you are on and be back to biting you again.

    Don't quite know what you have been reading up on, but you have a lot of pluses on your side. You have been diagnosed early, treated early and both those are real bonuses. Many people have to wait weeks, even months for a diagnosis, you have been very well treated.

    The biopsy is truthfully nothing to worry about. Most people don't even know they are having it done (I'd much rather have a biopsy than a tooth out, but I'm a wimp at the dentist) and hopefully it will aid the diagnosis. The treatment plan you have been started on is normal for perceived GCA of the head and while weight gain is one of the side effects, not all get it - a lot of people lose weight on steroids - but if you do get it, then it should disappear as the steroid dose decreases.

    Have a read round this PMRGCAuk website, there's lots of information for you to read and it is reliable. You might find you have a support group in your area to go to.

    I could write reams on this, but I don't want to bury you under a pile of information, it is difficult to take it all in. If you are going to ask Dr. Google (not recommended) then please find reliable sites for info.

    There's also another site PMRGCA North East which is affliated to this one and which has lots of information specially written for it.

    But do ask! There are so many of us here who have not only earned the T-shirt, but have worn several out and we can tell it 'like it is'.

  • Wow thanku so much for the input. I had the biopsy this morning n feeling drained now but have no pain n that's good enough to start with. I have decided to just take each day as it comes n try to accept what happens. Hope I keep feeling this way. Thanku xx

  • Hi. I had the artery biopsy in July urgently too. I had black eye for few weeks which is normal but it does heal quickly. Your feelings are very similar to mine. Head all over the place and so many questions. I was diagnosed with GCA and PMR and only 49. Bit of a shock all round for me. On 40 mg Pred for 6 weeks now but having big problems not sleeping dizziness blurred vision high blood pressure and very high blood sugar levels. I guess these are all side effects of the steroids? I have been to optician twice lately re concerns about blurred vision and he thinks I could have optical nerve damage. That worries me a lot. So glad to have found this site as my GP and Neurologist just don't have enough answers for me on trying to live and function with these 2 conditions.

  • Hi do not worry to much biopsy is OK you are in and out in 4 hours,I had the same symptoms as you but my headaches were mild and my head ached when i brushed my hair and i felt a little tired had this for a few weeks,thought i had a virus but GP give me 60mg,s of prednisolone immediately and sent me to hospital next day for the biopsy and it was confirmed i had GCA, i new of this as my friend up in Newcastle had this 7years previously.

    I was diagnosed in February 2012 and after some grueling months i am starting to see the light at the end of the tunnel,am now down to 5mg.s of steroids and trying to get my old life back.

    This forum is brilliant and i most certainly would have gone to Austria and taken the pill if not for this forum i hope you go through this illness a lot smoother than most of us as it can get very nasty.

    go with the flow try not to fight it when you feel the fatigue rest listen to your body and if you have not got a good diet then certainly get one do lots of research on what foods to eat that will help the inflammation.

    Do listen to the advice from this forum as the people on here are more informed than most of the Doctors and Rhemys.

    Good luck and kind regards Anne

  • Hi,

    Can understand your shock, much the same happened to me, although a bit too late, I'd already lost sight in one eye.

    Bad news - Your world seems to be turned upside down, and you don't know which way to go or what to do.

    Good news - GCA has been diagnosed, you are on steroids which will preserve your sight (most important - just remember that fact!) and yes you will get side effects, some of which are not very nice, but you will get through them. It does get rid of the wrinkles on your face (if you have any)!

    Some days are rubbish (for want of a swear word), some days are good. Yes you can still have a drink, not too much! But you need to look after yourself, and take it easy especially on the good days when you think you can do what you used to! You cannot.

    Suggest you read Kate Gilbert's book PMRGCA _ A Survival Guide, can buy on Amazon either in hard copy or for kindle. Although Kate didn't have GCA she had PMR and therefore on steroids etc, and you can relate easily to it.

    Keep in contact with this forum, as polkadotcom says some of us have had the Tshirt much too long, but we always help when we can!

    Good luck, and please try not to worry too much, now GCA has been diagnosed you ARE on the road to recovery! DorsetLady

  • Excited about the chance of a possible wrinkle free face. Sure cheered me up lol. Xx thanku xx

  • Glad you're feeling more positive! Keep at it. Life will be a roller coaster, but we are always here to help you through it. Good luck and keep in touch, DorsetLady

  • Thanks for the reply. Yes the fatigue is getting to me n it's not something I'm used too. I'm always on the go so I will now have to learn to slow down a little bit when I feel that way. Will be difficult tho.. I'm edgy now n wondering what I can do. My brain tells me to do something n not sit still but at the moment by body is telling me to rest. Thanks for ur reply xx

  • Hi, so glad you have found this site early, I daren't even begin to tell anyone how I felt listening to everyone after feeling so alone for years. However small your worry there is some one to help you and make you feel cared for. Big hugs for today and all your tomorrow's. Bye.

  • Thanku so much. I still have a lot to learn n understand but im taking it slower now. Thanku xx

  • Hi, I Can echo all the replies, now in Club Zero on 1 eye, but back driving and getting back to near normal! Keep on the regime and it will be worth it all in the end, honest.


  • Thanku. Biopsy done this morning n just resting up now. Thanks for the reply xx

  • Thanku everyone for ur kind replies. Had the biopsy this morning n feeling tired now. Going to have to learn to rest more when my body tells me. Excited if prednisolone helps lose weight instead of putting it on n also if it helps with the wrinkles. Those made me jump up n cheer n laugh. Something I needed these past few days. Have appointment on 18th set to see consultant so will wait n see if anything else shows up. Gonna think positively n not worry if I can. Thanku all once again for the kind words n support xxx susy xx

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