Advice please

I apologise for being a needy newbie in advance of my question.

I have been unwell since 19/11/16 when I was put on pred 40mg for GCA symptoms. I see the rheumatologist on Friday for my first appointment. I was told to reduce by 5mg every two weeks on my hospital discharge notes. I ran this by the group and the advice was that this was too much too soon so I reduced to 37.5 on 7/12/16. My sensitive scalp has begun to hurt and my temples are sore also.

Should I wait until my appointment on Friday and try not to worry and was it a mistake to reduce at all until I have been seen

15 Replies

  • I am on 30mg daily over 30 days. .1st attempt to titrate down by 5mg I was laid out flat in more pain I could manage. I waited a week to titrate again by 5mg this time it was an ambulance ride directly to the cath lab. Heart is plaque. Going to attempt again..take 2 10mg 1 5mg then 4 1mg to titrate at 29,28,27 etc...I have to attempt something.another month of this.......could do some very dramatic damage. Any thoughts greatly appreciated.

  • Hi Elaine. I am sure other, far more experienced members will reply soon but if it were me I think I would stay at the higher dose until I saw my rheumatologist on Friday and then tell him/her what happened when you tried to reduce. But wait to see what others on here say - I am pretty new myself. Big hugs xx

  • Hi Susy

    While it is horrible for us all to be dealing with this and the stress involved in trying to work out whether a symptom is the illness or not or just a red herring to send us into a tailspin, there is this group. Once again I am grateful to have you guys xx

  • Personally, I would go back to the 40mg until Friday at the very least - and make sure you have documented exactly what happened when you tried to reduce, timeline and order of problems for example. I'm rather surprised that the hospital told you to reduce at that rate from 40mg - from 60mg maybe but the usual procedure is to keep the patient at 40mg for a month or until symptoms resolve. That doesn't usually mean sooner but later!

    I'm also rather surprised that it has taken nearly 4 weeks to see your rheumatologist when the putative diagnosis is GCA. Yes, you were seen in hospital - but you should have been referred to "your" rheumy as an emergency, the same as if you had had a mini-stroke.

    Good luck on Friday.

  • I will increase as you suggest. I was 'lost' in the system at my local hospital and had to chase the appointment. Hence the delay. I forgot to mention I have been laid low with a horrible cold that has knocked me for six. In hindsight I would have the confidence to ignore the instructions from the hospital and leave well alone until I am seen on Friday

  • Ah - NEVER reduce if you aren't well! Basic rule no 1!!

  • Agree with PMRpro - go back up to 40mg until you Rheumy. As I've said in other posts, in GCA the first few months are key, you need to be on enough Pred to get the inflammation really under control.

    Not sure if new policy is to reduce every two weeks, but always used to be 5mg every four weeks, and then reduce only if symptoms and blood markers (if appropriate) were okay.

    Many doctors seem to have this love/hate relationship with Pred - they know it's the only drug for GCA PMR, but they don't seem to want you to be on enough to do you any good!

    Obviously nobody wants to be on more than necessary, but not enough just gives the worst of both worlds - side effects and no real relief from symptoms!

    Good luck with Rheumy.

  • Thank you and I have decided to not do a thing until I have run it by you guys in future

  • I wonder if many A&E people know enough to recognise GCA - but not enough to go beyond handing out the appropriate starting dose. Then they hand out the standard pred reduction scheme which probably is about 5mg every 2 weeks.

    Did you see a consultant rheumatologist while you were in hospital Elaine?

  • I did yes and he said he feels I have it. He said he is here at the start of my journey and he will see me through it.

    I was reassured until they lost me in their system and the appointment didn't come through.

    I just checked the discharge paper and it isn't signed. Not sure who gave the instructions printed on it

  • The discharge summary said under action to be taken by GP, reduce Pred by 5mg every two weeks until at 20mg

  • Oh communication, communication!!!!

  • Oh Jheeze

    I should write a pamphlet.

    How not to manage GCA 😳

  • Join the clan!

    Don't worry we've all made mistakes along the way - not intentionally, but until you do something you don't know the outcome!

    Had many a 'Doh' moment🤔

  • Somewhere along this chain of replies (or was it another?) someone suggested keeping a record of your pred intake. I've had GCA for over two years (119 weeks to be exact) and have kept a daily record of mgs, plus a weekly side note of how I feel: positives and negatives. It might seem nerdish, but it has helped me to keep track of my GCA and whether I'm heading in the right direction.

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