Trying to cope with GCA. Fourth week on.

[LazyDazy]

I was diagnosed with gca over 3 weeks ago. I was, I think, very lucky that my gp spotted it so quickly, actually on the first day the headache became unbearable, and put me on 60mg prednisolone the same day. The next day my head was bearable and improved gradually over the next couple of weeks. Since last Thursday the pred has been reduced to 40mg with no recurrence of the headache.

I am not to be referred to a specialist (unless anything untoward happens) as my gp practice say they have successfully dealt with this before. I live on a Scottish island so referrals to consultants are much more complicated than most places. Having said that, our gps are second to none.

Now I am trying to live with this massive dose of steroids. I should add that I already had osteoarthritis and high blood pressure, not to mention having survived breast cancer twice.

As you can imagine, I really didn't need any extra health problems. I am 70, but have always been an active positive sort of person, at least until the osteo slowed me down a bit.

The worst effect of the pred has been the frequent sleepless nights ( I'm writing this in the middle of one) and the mood swings. Also spells of being really hungry, especially for sweet things, which I know I simply must try to control. The 'moon face' is not good either, though I know this should improve as the dose of steroids decreases.

I'm not sure whether some of the aches around neck, shoulders and upper arms are arthritis or a touch of pmr. I'll mention this to the doctor when I see her later this week. I wouldn't have thought that, on this dose of pred, pmr could get a hold though?

When I am feeling positive I am ready to tackle this head on, eventually conquer it, and regard it as just another hurdle to be negotiated, but as everybody reading this will know, on negative days, it's not so simple.

I would be very grateful for any advice from other members experience and knowledge.

It is good to have been able to 'have a moan' here, to people who will understand. My dear husband does his best, but has problems of his own, so I don't want to lay too much on him.

To end on a positive note, one of the things that is keeping me going and cheering me up is that in November I shall become a grandma for the first time. Will need to get fit for that I think!

[steveives]

Hi I have PMR sorry to hear about your recent GCA the Pred problems you have are common with it not very nice all I can say is it gets easier as you reduce the dose of Pred I had all your problems plus when I cut myself I did not know I was bleeding and bled for so long watch out for that hope this has been off some use

[LazyDazy in reply to steveives]

Hi steveives,

Thank you for your encouraging words and I will certainly watch out for any problems with bleeding. That's something I didn't know about.

I hope your PMR is not too bad now.

[Celtic PMRGCAuk volunteer]

Hello LazyDazy

I'm so sorry to hear of your recent GCA diagnosis but how great to hear how positive you sound after such a short time. If you can keep that up you it will help enormously.

The sleepless nights is a side effect that hits most of us whilst on the higher doses of Pred and I found the only way to cope with that in the early days was to try and catch up with naps during the day and to take my Pred as early as possible each day.

As for the side effect of mood swings, I used to try and walk for at least 20 minutes every day in the belief that the exercise and fresh air releases those feel-good endorphins to lighten our mood.

Isn't it so frustrating that the steroids make us feel so hungry yet we know that to indulge ourselves will lead to even more weight gain on top of that already posed by the steroids. I used to try and have something like a bowl of soup mid morning and then something like left over casserole from the previous evening for lunch, trying to eat little and often throughout the day, but always trying to resist the sugary, high calorie foods - it didn't always work, I have to admit!!!!

It is certainly possible to succumb to PMR whilst having GCA, although GCA can affect other arteries in the body as well as those in the head thus producing PMR-type symptoms.

If there was one lesson I learned it was to pace myself and definitely not overdo things on a 'good' day or symptoms would come back to 'bite' the following day.

Lots of good luck wishes and I do hope you will have a smooth journey to recovery - I recently went into remission, and you will too. Lots to stay positive for with excitement of a first grandchild on the way.

[LazyDazy in reply to Celtic]

Hi Celtic

Thank you for your kind and helpful message. I will take your suggestions on board. In fact the weather was beautiful today and I did go for a little walk which made me feel much better. Also took it easy this afternoon to make up for the sleepless night.

Your breakfasts sound interesting and obviously didn't do you any harm as you are now doing so well. Are you still on a low dose of Pred or able to manage without?

I do hope your remission is permanent. It is good to know that there is light at the end of the tunnel.

[LazyDazy in reply to LazyDazy]

Hello again. Sorry , my remark about breakfast should have been addressed to a different member. I think your 'little and often' approach to food sounds a good one though and I will try that.

[LizML]

Sorry to hear about your GCA diagnosis, but what wonderful GPs to be so on the ball. I was diagnosed nearly a year ago and had the sleeplessness. As it was warm at night, I used to get up and do things that I had no time to do in the day - or things like ironing, tidying cupboards, etc., which made me feel good (virtuous) next day! I too started on 60mg Prednisolone and am now down to 7mg. I found that eating as much as possible when taking them first thing in the morning protected my stomach - I would eat very strange things for breakfast - anything I fancied, including left-overs from dinner the previous evening. Then I would have a cup of cappucino and a bun. Not a healthy diet, but I felt I was wrapping the steroids up in a lot of layers of food in the hope that my body wouldn't notice them so much! The rest of the day I tried to be good with salads, etc.

The steroid effects can be a nuisance but, if you try not to get stressed and let them do their job, they really are miracle pills for keeping GCA at bay. I hope you have as trouble-free a journey as I have had. You have a lovely event in November and take heart from the fact that, by then, you will probably feel much better in yourself and able to cope.

All the best, Liz

[LazyDazy in reply to LizML]

Hi Liz

Thank you very much for your supportive message. I find it immensely encouraging that you are down to 7mg from the initial 60 mg in less than a year and I am very pleased for you that you are doing so well. Do you still get any side effects of the Pred at the low dose?

What a good idea to use that night time lack of sleep to do something useful that makes you feel a sense of achievement. I will certainly copy that idea.

I might try anything I fancy for breakfast too!

[Hidden]

HI LD,

What can I add to all the great advice you have received today. I can agree with the fact that you have GPs that are so clued up regarding your illness. If only everyone was that lucky.

If you have always been an active person, then your body will be more able to get you through the period when you will have to take it easy.

I do not have GCA, but when it was realised that I might have PMR I was given 30mgs of pred. The transformation in me seemed to happen almost overnight. All pain gone, but I blew up like a balloon, moon face, fat midriff etc. My appetite did not increase that much, but I still put on half a stone very quickly. Later I found out that the weight gain is not just due to too many calories, but it happens because pred confounds our ability to get rid of salt and sugar, therefore, the only way we can store these two is to store the water needed to contain them. MMMM. sugar. Even in normal health, don't most of us just love it, whether we're hungry or not. Why? It's so addictive. Not just to humans, but many other species as well. The same applies to salt. The trouble is that both salt and sugar are extremely harmful if we can't get rid of them quickly. Salt causes blood pressure to rise and refined sugar can lead us down the path to diabetes.

The neck and shoulder pains you have can be related to your GCA. They are, after all, some of the symptoms of PMR. It is well known that the two illnesses are closely related, but it does not mean that you will develope PMR as well. I have PMR, but occasionally have had head and jaw pain during the early part of the illness.

You mention sleepless nights. I remember them well. Up to go to the loo often, and the horrendous dreams. Not to mention the depression which always seemed worse in the early mornings when I just wanted to stay in bed and go to sleep forever. I knew it was the steroids causing it all and that gave me the strength to carry on.

The high dose of pred will make you more susceptible to the side effects, but you come across as a brave, optimistic person. All I can say is try and focus on the things that make you happy to lift your mood. It will get better as your doses are reduced. Prednisolone is a very powerful drug. It will save your sight! All powerful drugs have "pay back", but soon the dose will be much lower and the side effects will diminish, so try and grit your teeth and hang on. After all you have so much to look forward to.

Pats.

[LazyDazy in reply to Hidden]

Hi Pats

Thank you for your very helpful message. The info about the water retention being due to the need for the body to store salt and sugar when on steroids was very interesting and something I did not know. It follows that limiting salt and sugar will have even more benefits than I realised. Limiting salt is fairly easy for me. Having an ongoing blood pressure problem that is something I am careful about anyway. Sugar is much harder, but I am very keen not to develop diabetes on top of everything else.

Do you know if fruit sugar is harmful as well as refined sugar? Grapes, for instance, or bananas are very sweet (and nice), and an acceptable substitute for more fattening cakes and biscuits, but might they not be too good either?

I really appreciate your help and advice, and that I have received from the others so far. Communicating with people in the same situation is wonderful, especially as most of you are further down the road to recovery, which is of course, a great encouragement to someone just starting.

[Hidden in reply to LazyDazy]

Hi LD,

So glad I was able to help. As you have gathered, you are on quite a hefty dose of pred. and, therefore as much as is possible, try and remove all added salt and refined sugar from your diet. Without salt, food often tastes rather bland, I know, but experiment with other things like herbs. You are the only one who can say which ones will appeal to your taste, but do try. Removing salt from our diets can equal the good done by some B.P. meds.

Sugar mmmmm. Such a shame that this one is even harder. Refined sugar is easy to talk about. About fifteen years ago I became lactose (milk sugar)intollerant and stopped drinking milk and any processed foods that contained it. I can still eat hard cheese like cheddar and also yoghurt. I use Canderel as a sweetener, which contains lactose, but strangley, causes me no probs. and I use it to sweeten my tea, and yoghurt which I love. Very rarely, I treat myself to an icecream. I know I must come across as really boring saddo, but carry on if you can bear it.

Let's talk about fruit. This is my experience. If I eat fruit regularly I blow up like a balloon. Even though I am on a low dose of pred. it still effects me. It can't be the roughage can it? Therefore it must be the sugar. I even have probs with honey, so I don't eat it. There's another twist to all this. If I eat fruit that is grown out of season then the effects are worse. Why, I wonder?

Could it be that our bodies are still locked into the "hunter gatherer" lifestyle of our ancestors? They would have eaten fruit very seldomly and only when it was in season. It would have had very little comparison to the overbred, overblown man made varieties we eat today. Loaded with sugar.

All I can say is experiment. Little bits of fruit then wait and see how you feel. If you feel bloated then you will have a good idea if you're retaining fluid to hold the sugar.

By the way, I still enjoy a glass of my favourite red wine----or two. It lifts my mood like nothing else!

Pats.

[Celtic PMRGCAuk volunteer]

Hello again LazyDazy

No I'm not on any Pred, having stopped them completely a couple of months ago after reducing at a snail's pace from all the doses below 5mg (a sticking point for me and for many it seems). So stay positive - you can't see it just now but there's a very big light at the end of the tunne!

[Hidden]

Smoky

0 minutes ago

Delete

Lazyday

As you are located in Scotland, you might like to contact the following:

PMR GCA Scotland Registered Charity. They will supply you with a wealth of factual information on both PMR and GCA.

E-mail: info.scotland@pmrandgca.

org.uk

The website is: pmrandgca.org.uk with contact numbers.

Well worth contacting. The lady who started the Charity has both GCA and PMR.

[LazyDazy in reply to Hidden]

Hi Smoky

Thank you for suggesting the Scottish branch. I will certainly contact them.