I was diagnosed with GCA on April 15th and started with 60 mg pred ( no visual disturbances) and reduced to 45 when I had a flare so back on 50 mg straight away. I am worried that 50 mg for two months is quite a long time. Will it make it harder to reduce. I am still experiencing symptoms. I am also on Azatroprine 200 mg per day ( 4 tablets). I am finding it very hard to come to terms with the whole illness. I have really tried to rest the last few days as before I was my own worst enemy - doing too much. I have also not been helped by my husband who gets himself involved with numerous causes ( he is a town councillor and works from home) which mean our house is like Piccadilly Circus - coming and goings with the doorbell ringing and I just long for peace and quiet - don't sleep much at night and I cannot get enough sleep in the day - or any. I have had rows with him about this which also doesn't help as stress is bad for GCA. Today he did say he will try harder but I don't hold my breath. Sorry to moan on but I feel I need a moan. A hug would be a good thing too. Going on holiday to Cornwall on 9th July which I am worried about but looking forward to.
Many thanks to all the wonderful people who reassure you on this site.
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christine2715
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Staying on a dose for two months won't necessarily make it any more difficult to reduce. Most people do drop every month, but that's not written in stone, and you should only do that if everything is okay. Much better to stay on a dose for longer than to risk another flare - that's much more demoralising I think.
Your husband obviously doesn't understand the effect GCA is having on you, but I guess that's not him being deliberating uncaring, as you say he's very involved with other things, and sometimes others don't realise just how rotten you actually feel u less you tell them. As you say having a row about it does no good, but I think you need to try and sit down quietly with him and explain how you feel. That may not be easy on a number of counts, but unless you clear the air things are just going to stay the same.
Perhaps on your holiday when he's away from his town council demands and you are both a bit more relaxed you can have a good chat about things. Try not to make it too heavy with too much info (they do have a habit of switching off!)
Enjoy your holiday, and try and relax as much as you can - don't be dashing around all day! Good luck.
Hello Dorset Lady, you have been such a help to me and others and I thank you. Sometimes, a bit of old fashioned wisdom is a good thing. Problem is its not easy to get through to him. Hopefully the holiday will help. Thanks again.
Know what you mean! Much as I loved my late hubby, sometimes I could have crowned him! Trouble is, they all have selective hearing at times. And, I think sometimes they don't want to admit that their loved ones are unwell, so it's a bit of 'head in the sand' syndrome - but I suppose we're all guilty of that at times.
Maybe go through some of the posts on this site and tag them as favorites, or print them out, and then show them to him as real world examples of what you (and many others) are going through. If there is plenty of 'evidence' to present of this being a very real and nasty illness you might get the message through.
Of course I am coming from the context of being a bloke, but I am sure, like many of my type, I am capable of not listening (domestic deafness I think it is known as) - but this is serious - not having full support increases the stress which increases the effects of the illness. A bad combo.
Good luck with it and enjoy the holiday and maybe chose a good time to have that quiet chat - or, divide and conquer - introduce a few bits at a time over short sessions over a couple of days. Easier to digest all that is going on in small chunks (there I go again, thinking what men are like and knowing that we can turn off something chronic....).
Just a thought but if you have children perhaps he/she/they could intercede on your behalf. I've always found that my parents listened better to us than each other
Sending virtual hugs and best wishes for a relaxing holiday. I think some of the replies above are useful info. Sometimes I think family find it most difficult to comprehend that your mum/dad now can't do what they used to prior to diagnosis, and it's not just hubbies. I don't really know what the answer to it is, but some of the suggestions above (like I said) might work.
If you're having sleep problems perhaps this need to be discussed as well with your gp. Lack of sleep doesn't help for sure.
I'm all for alternative treatments and wondering if you have thought about meditation - there are plenty of tapes available for this and classes to attend. Yoga, Thai Chi might be worth a thought.
All the best to you and I hope the sun comes out for you all down in Cornwall, this miserable English summer doesn't help either.
Hi I was diagnosed with GCA and PMR in Feb and was on very high dose like you for the first couple of months but I am now down to 13mg reducing 1mg every 2 weeks at the moment
The side effects were awful and I was a monster crying or shouting all the time sleep was very difficult especially during the day as I live in a very busy house too!
I found it very difficult to explain the illness and how I was feeling to my family and close friends so I got them to read the spoon theory which really helped them to understand what it was like for me not being able to do everything I wanted to do they have read up on the illness and they are an amazing support to me which I am so very grateful
I still have really bad days but I am now having more good than bad
The hardest part for me was accepting the illness
I hope you begin to feel better soon enjoy your holiday and rest as much as you can xx
Hi, thank you very much for your feedback, its good, in a way to know others have similar problems and are now making some headway. Problem is that there seems no definite course to this illness so you just don't know where you are heading or how long it will take.
I know this is 2 months on - I was on holiday and ran out of steam catching up on about 300 posts I'd had notifications for!
How are you doing now? Was the holiday good and has your husband started to get the idea that you need some peace and quiet? If not, there is a DVD from the northeast support group that was compiled by healthcare professionals and patients to explain about what these dratted illnesses do to us. Everyone has said how useful it was - and they're into thousands of copies now I believe.
Hi PMR pro, have found holidays have to be short for me. The first one week one was exhausting but have just come back from two nights in our old camper van followed by one hotel night of luxury and that worked well. Husband was really helpful and he too is beginning to twig that we now have to do everything in the slow lane. I just worry I will never get over this illness. Much of the time I am really ill and can do so little with all the awful symptoms. I think in my case I get ill after taking my meds so it's more the meds than the GCA. Many thanks for all the he you give. Best wishes
Are you really pacing yourself - you have a serious illness, you are on a very high dose of pred. You MUST treat yourself as a poorly person. If you rest it gives your body a better chance to heal - it doesn't matter so much if you don't sleep well providing you take it really easy. If you had had major surgery you wouldn't expect to be up and running in 2 months - or if you did you would be totally unrealistic! This is a chronic illness and if he doesn't understand that GCA lasts at least 2 years, your husband needs some more education I'm afraid but it does sound as if he's getting there. Mind you - I only have PMR and my husband was a medical professional at consultant level in the NHS and HE didn't get it for a very long time!
You are in really early days and worrying about not getting over it will just make things worse - it's stress and GCA and PMR feed on stress as you know. In a year you will look back and see how far you have come - almost everyone does and says how surprised they are. But tiny steps - trying to make big ones just doesn't work.
Hi, I am really not doing all that much. Just a couple of small jobs can wipe me out. Walking a 5 minute walk from the harbour to town left me exhausted, head pounding etc. and I had to sit in a cafe for some while. Preparing dinner and emptying the washing machine can be enough . Fed up with the whole thing but know that you are right that you just have to slow down. Some days seem better than others. Thanks again.
YOU may not think you are doing much - but that all sounds very familiar. Most of us can identify with a couple of small jobs wiping us out. I used to do my ironing in 5 min bursts (more staggers really!). I couldn't do getting dinner AND emptying the washing machine - one or the other. In fact, getting dinner often wasn't an option. I said on a post somewhere the other day that lack of enthusiasm started with cooking - if there are more than 4 ingredients I lose interest! It isn't that different now to be honest - food has to be simple and quick. More than 15-20 min in the kitchen at a time and I'm flagging.
Did you try to walk at your normal pace? Is it on the flat or is there a hill? Was that after a few days being poorly? You lose muscle mass very quickly when inactive and even more so when on pred. You need to do that walking - but in tiny snippets so plan it around park benches and cafes!
Quite often only prepare dinner and get husband to finish it off. Wasn't walking quickly but must confess that my idea of not doing much might not be sufficient to prevent problems. I know that very quiet days are best. Thanks for your help.
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