My Journey.... when will it end??

Hi

These things are certainly sent to try us, and keep us guessing..

Saw GP on 13th August having been experiencing headaches which I thought were migraine, but had not had the aura thing which has happened previously. He felt it was likely to be GCA and commenced me on 60 mg pred, plus pain relief. Eyes checked on 15th - thankfully at that stage, and still now - no problems. 16th artery biopsy. Reduced pred on 17th to 50mg - headache back with avengence - back up to 60mg! GP again 24th - change in pain relief, still not really resolving. Weight loss - 9lbs in 10 days - great, but probably not the best way..

Consultant today - biopsy none conclusive, ESR still up even though on 60 mg pred - reducing pred by 5mg for 2 weeks - change of pain relief, (fingers crossed this works) - head scan asap, poss referral to neuro for advice, not ticking the boxes for it to be totally GCA, nor conclusive link with RA, which I have had for 12 years. I rattle with so much medcation - they think some levels are masked, such as ESR, due to methotrexate injections I have been doing for 4 plus years, and sulph ++. Also, apparently issue re my jaw - it's clicking and causing problems when eating, this should not be happening either..

Now it's just waiting... Took this afternoon to drink tea and watch rubbish tv to get my head around all this - everyone is so caring and asking how I am, but I do not really know!!

Back to work tomorrow - need routine and distraction.. Would just like a decision and a way forward.... please...

Anyone's thoughts and observations greatly received - it's fantastic to see the support given to all on this sight. Sometimes you can feel so isolated, and it's not always easy to talk to those who are close to you - they often get emotional etc, especially my hubby...

Thanks for reading x

6 Replies

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  • sorry can't help with advice but know what you mean with rattling with medication.

    Glad your hubby is looking after you, mine is also pretty good especially when it comes to prising my fingers off the saucepan lol.

    I am sure you will have lots of help and advice follow my post.

    Keep smiling or you will only cry. :)

  • Hi Nuttynana,

    If I call you a star, believe me, I mean it! When I was on 30mg of pred I would have been completely incapable of going to work - even an office job would have been far too much.

    If you are having problems with your jaw then why not visit your dentist. After all, they are the real experts in this department. Perhaps an xray of the area might show up any abnormalities.

    Pats.

  • Dear Sue8 and Pats

    Thank you for your comments. I was thinking about the blog last night, when yet again was having several hours of not being able to sleep, and you know I think I might give it thought to write in more detail - it can demonstrate what we as individuals go through, and maybe informs others 'we are not alone', when sometimes we might be feeling so isolated!

    The jaw thing - the consultant feels is all linked with the GCA/RA, so would rather now wait and get everything sorted by as few poeple/services as possible. The more opinions there are the more difficult it appears to be able to diagnose.

    Work for me is hugely important, and I get stressed when I am not there - I know it would all go on without me... but guess it's my focus.

    Well time to try to eat something and then take round 2 of breakfast 'PILLS'...

    Have a good day, whatever it is you might be doing - try to smile and have some fun, at least at work I have very lovely people to work with (most of the time!!).

    Hazel x

  • Dear Nuttynana, Yes! Go for that writing about your illness in more detail. I read that someone (Freud?) said you develop a relationship with the story (or something) which can relieve feelings. Think I might join in - anythings better than Come Dine with Me - although the voice over really makes me laugh.

    Well done for pressing on and getting back to work. Thats my aim. Having finally and successfully sorted out what I eat: no sugar after a lifetime of chocolate, no vino collapso these past 5 months, only sugar allowed is Manuka honey, learned on this site, and I feel better in myself because of the foodstuff change. When I sort out the pain, next thing is back to exercise which I so miss. PMR/GCA/RA are great Dictators and life changers but we won't let them get the upper hand. At least thats the theory. Have a really great day at work.

    Jani

  • Hazel

    I, too, am in awe of you continuing to work in spite of your problems.

    Firstly, many biopsy results come back negative for GCA as the enlarged cells might not show up in the tiny portion of artery examined.

    Secondly, by the time my GCA was diagnosed, I had lost almost a stone in weight (in just under a month) and although I had lost my appetite along the way, if I did try to eat, found that my jaw was very painful on chewing.

    If the initial dose of 60mg Pred relieved your head pain, then it could just be that the reduction to 50 after just 4 days was much too soon - my initial starting dose wasn't decreased for just over 2 weeks. It needs time to really get the inflammation under control before that first reduction, and repeat ESR and CRP blood tests should also be carried out and used as a guide as to whether the symptoms are responding to the initial dose before that reduction.

    Do hope things get better and soon.

  • Dear Nuttynana, my mum's symptoms included headaches and jaw pain, so severe she could not eat. Her diagnosis was PMG and GCA, medics started her off on Prednisolone 80mgs in December last year and her Rheumatologist reduced her dose really slowly. She has just got down to 9mgs in the past two weeks, and it was brilliant to hear her tell me yesterday she felt the best she has done for over a year. It has been a long haul for her, and she has had to learn to pace herself, even though she is 79! She has found this really tough as she was very active but overdoing it left her feeling unwell. I link into this web site and share information with mum's agreement and feedback information that other people post on the website, it really has been invaluable, it is one of a number of things that has helped mum to adjust to living with her illness.

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