A day without tears ! Is that too much to ask for ?

Recently diagnosed with GCA November - awaiting urgent biopsy but took myself off to Spain for a week.

Enjoyed the rest and found that taking meds at 0530-0600 I managed everything .

Returning home I'm a quivering wreck !

Tears daily, awful taste in my mouth , palpitations dry skin and hair.

I put about half a stone on in a a week - I've only been home 2 days and I've lost 4 lbs !!!

I'm on 40mg pred till my next appt on January 14 - going for a slow reducing.

Will all these side effects ease ??

Pamela60

7 Replies

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  • Morning ,It will get better honest ,pred is a bitch ,be kind to your self let the family/friends step in use the words I need help . Try to have cotton clothes next to your skin lots of body loition ,any one who comes to our house makes there own drinks plus mine. I know it's hard giving over control

  • Wrote this in bed - blummin Eck I get up and who is this round faced woman looking back at me ? It wasn't there when I went to bed !

  • It WILL get better - though it may be a while. If they decide what you have IS GCA then you will be at above 20mg pred for some time and high doses do generally have more side effects, especially the weight problem and the hamster cheeks. I was at my fattest for my daughter's wedding - I managed to keep out of sight for all except the big group photo! I hate looking at it but since then I have lost 16kg - a lot due to being very strict with carbs and others on the forums have found that helped too, some didn't put on weight, others lost weight they had gained. I don't have a proper mirror in my flat - the bathroom one was more than enough! Going to the hairdresser was awful - but at least I had to take my glasses off!

    As Olive says - leave things to others! Cotton is cool - but probably the most comfortable underwear in winter is sports stuff that wicks any sweat away quickly. But layers are essential - so you can take the top one off for a sweat. I had a fan on the desk and would turn it on me when I felt a sweat coming on.

    Diagnosed November - and you haven't had an "urgent" biopsy yet? After a month on 40mg pred the chances of them finding any giant cells are falling by the day - so do check if they feel there is any point when they say they'll do it.

  • My letter from the consultant states " probable Giant cell arteritis " but I wondered about the need for a biopsy .

  • Having a biopsy can be quite useful when it turns out positive - no-one will ever be able to argue about the diagnosis in the future and it provides a criterion for inclusion in any drug trials for GCA.

    However - only about half are positive and then the diagnosis is a clinical one. If the rheumy feels that it IS GCA then they will continue with the pred as if it were because of the risk of blindness if not giving pred and it really is GCA is far too high. It is thought that the likelihood of a biopsy being positive decreases by about 10% for every week of high dose pred - so after a month it is pretty low.

  • Hello Pamela60

    I had my Christmas hair 'do' yesterday and was saying to my hairdresser about the 'straw' effect of my hair, particularly at each side of my head. Ah, she said you need some ' hair serum' . I had been using conditioner. She produced this little bottle and said you only need a drop about the size of a small pea. She then rubbed it on her hands and put it through my hair. Even this morning my hair feels better. I am off to the shops to get some. She has a daughter in her teens who is on steroids for a different problem and so knows a lot about steroids.

    On a different amusing note. I was looking after my grandsons last weekend. My daughter was saying she needed to lose some weight. She is about size 12! Her job is mainly sitting. She said she needed to address the problem before........... And then she looked at me - and stopped. I knew what she was thinking- I don't want to put on weight like mum has. As it happened I had brought the little booklet I had bought from PMR northeast. I gave it to her and said perhaps she would like to read it to understand my PMR condition. I am going there for Christmas and will be interested to see what she says. I have now reduced to 9 mg and recently somebody said they thought I had lost some weight, certainly my trousers feel more roomy. I am forever hopeful that I may be on the way down weightwise. I live in hope.

    Merry Christmas to you all and all the best for a healthier and happier New Year.

  • Thanks for replying - I do have some serum for my hair to try - so will give it a go.

    I face timed my daughter last night and asked if my face looked bigger - she didn't think so but I think ' it's in my head ' if you know what I mean .

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