Introduction suffering from gca

[Tinaberkhauer]

Hi I am new to the site,was diagnosed in August with temporal arteritis started on prednisalone 70 mg at first terrible side effects feeling like my legs were spongy,hot sweats palpitations and various other side effects.Now have been gradually reducing the dose and am at present down to 15 mg a day and I thought I would feel a bit stronger however I barely have the energy to get showered and dressed and going out and about is wearing me out I was wondering how long it takes to turn a corner any advice greatly received Tina

[DorsetLady PMRGCAuk volunteer]

Hi Tina,

If you were only diagnosed in August, then I would disagree that you have been reducing gradually. In fact .I would say, much too quickly!

I assume you have been following a plan that your GP or Rheumy gave you. During that time have you been having regular blood tests to check your ESR and/or CRP?

What is not explained to patients very often - GCA and PMR are not like other illnesses - it's not a matter of taking tablets for a few weeks/months and everything is okay. They arrive without notice, sometimes after stress, but not always, and also go when they burn out, and that can be anything from 2 -5yrs or longer - there is no cure. What the steroids do is control the inflammation in your blood vessels that is caused by these illnesses, that's all, control not cure.

After the initial dose of Pred (particularly high in GCA because of chance of sight problems) gets the inflammation under control, the aim is to reduce slowly until you reach the optimum dose that keeps that inflammation under control until it goes of it's own accord.

I guess you have reduced too quickly, and have therefore passed the dosage where your inflammation is controlled, and although you may not have pain (you don't say) you have a return of the fatigue which is a symptom of PMR/GCA. Unfortunately it can also be caused by the Pred itself - so a double whammy.

Think you need to go back to your GP and discuss your dose to get yourself in a better place. You need to be taking enough Pred to be able to function, otherwise you are getting the worst of both worlds - side effects and no relief.

Good luck.

[PMRpro Ambassador]

Couldn't agree more with Dl - 70mg down to 15mg between August and now is NOT reducing gradually! I know some doctors will reduce 10mg every 2 weeks to start with - but it is very hard on the patient. 70mg would normally only be used for a patient which visual symptoms - and then a speedy reduction like that is risking the symptoms returning. Have you been monitored while reducing?

[christine2715]

I have reduced from 60mg to 19 mg over 8 months and also feel awful most of the time. It is so hard to know whether its a flare up or Predisilone. My Rheumy seemed to think it is the Pred and I must continue to reduce but slowly. I was reducing at 1 mg per week and he has said I should reduce 1 mg per fortnight. I am going on holiday to Ireland on Wednesday and am tempted to put my dose up in the hopes of feeling better on holiday.

[PMRpro Ambassador in reply to christine2715]

There's one way to know I suppose - if you increase the dose a bit and feel better it suggests it isn't the pred!

[Willowherb35]

I'm a newbie to the board too. What a kind and helpful place it is.

I was diagnosed with GCA in early June. I hadn't suffered the symptoms for more than a week or so but a perceptive young woman GP (recently qualified and on placement with my GP practice) suspected GCA. She said nothing to me but had bloods taken including ESR. Good on her! By the time i was in the hospital 3 days later the ESR result was on file and was up at 60. !mmediately given 60 mg preds.

I had severe side effects within a few weeks. Interestingly they were mainly psychological. I was manic for some weeks - sleeping about 3 hours a night and firing on all cylinders. I smiled at people in the supermarket, chatted with strangers and laughed a lot. Then came the paranoia... I was convinced that they were all out to get me one way or another. I kind of knew how I was behaving but couldn't stop myself. My husband died over 3 years ago and I live alone, but our son (aged 50) is a few minutes away. He bore the brunt of my state of mind, poor man - and was due to be cut out of my Will and it was all going to the dogs' home!

I am now rational (I think!) and on a maintenance dose of 10 mg. Dr Dasgupta referred me to Dr Val Kyle at Bristol Southmead hospital and said emphatically that all sufferers of PMR/GCA should be automatically referred to a rheumatologist. Since early August I go to her monthly clinic. and am encouraged to call the helpline if I have a flare up or have questions.

Well, that's my history. I'll come back tomorrow with some queries. This is clearly the place to come for reassurance. Thank you.

[PMRpro Ambassador in reply to Willowherb35]

You were lucky - but unfortunately Baskhar Dasgupta isn't living in the real world! GCA definitely should be sent to a rheumatologist but even that is associated with a wait of weeks in many places because the GPs often don't go about properly, even if they recognise the symptoms of GCA. But for PMR you can wait MONTHS for an appointment. Or, as happened to me, GPs don't recognise it and class it as fibromyalgia or depression, offering antidepressants. Not that rheumatologists are always much better - as plenty on the forums will bear witness to.

Bristol was one of the first places to organise a fast-track means of getting a patient to a specialist - and it does make a difference.

[Willowherb35 in reply to PMRpro]

Thank you PMRpro, I certainly was lucky. First by having a bright young GP suspecting GCA and requesting ESR test. Then a good A&E doctor who gave me 60 mg pred on the spot. After internet searches and a few weeks after diagnosis, my concerned (and bossy!) son made a private appt with Dr Dasgupta and spent a day driving me from Glos to Southend and back. Armed with Dr D's advice he then demanded the GPs refer me to Dr Kyle in Bristol. One young GP was very offended and tight- lipped about this, as he saw it, slight. I haven't been to him since! Different health authority situation has to be carefully monitored for some reason but it all seems to be in place now.

As you say, Southmead has a rapid response and fast track system and a 24 hour advice line where one can leave a message and get a call back from a nurse. Excellent system. I hope it will be taken up by all H Authorities. It certainly should be.

This is a wonderful forum and I'll be back to it later!

[PMRpro Ambassador in reply to Willowherb35]

Yes I had a GP experience like that but not over me - over first my husband and his cancer and later my daughter and depression. But not a baby one, it was the senior partner! I learnt a lot through that - and more importantly switched to the best doctor I have ever had! Hubby came too eventually - why he stayed with the former practice when they had nearly killed him by their dilatoriness was a mystery to me! However - it hadn't been me but his medical colleagues who got things moving. I just got the blame.

You really would think they would be grateful for the homework patients do on their behalf really...

[Willowherb35]

I suspect that GPs fall in to two categories: those who sigh and think 'oh, here we go, another one who's surfed the net and think they know better than me'.

The others are pleased that you've done your homework, informed yourself and know what you should do or avoid or eat and look out for. Those are the ones to visit!