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Concerned still on 15mg after 8weeks

Posted , 7 users are following.

julia85224
julia85224

A belated Happy New Year to you all.

I feel I am always asking for advice but contribute very little in return, due to my lack of knowledge.

However, I have been on 15mg pred after a major flair following the loss of my Father.

Advise would be appreciated on whether to start reducing now, or wait until I see a new rhematologist at the end of the month.

My main concern is my depression is worse and wondered if starting a lower dose may at least lift the black clouds a bit.

Any advice would be welcome, and I hope you are all as well as you can be.

Julia

1 like, 15 replies

15 Replies

  • margaret89358
    margaret89358 julia85224

    Posted

    Hi Julia, the loss of your father is contributing to your depression, I am quite new to this site, I can honestly say Pred has not made me depressed, the side affects get me down. You did not say how long you have been on 15mg. You don’t say how low your dosage was before your flare. If you think you could go down to 14mg then there is no reason why you should not try it, if you are unsure wait for your appt with the Rhmy. 

    Be kind to yourself and don’t beat yourself up. Let us know how you get on. There will be more experienced people on this site that can advise. 

    • julia85224
      julia85224 margaret89358

      Posted

      Hi,

      Thank you for you're quick response.

      Having suffered from depression I just wondered if it maybe making it worse.

      My previous dose was  10mg, never seem to cope at 9mg and this has taking 18months.

      Hence why I am seeing a new rhematologist as the last one said it was very disappointing I hadn't reduced further.

      Not seeing him anymore.

      Thanks again,

      Takecare.

    • EileenH
      EileenH julia85224

      Posted

      I hope your previous rheumy takes an interest in the ACR meeting in San Diego where a top Mayo Clinic PMR expert was presenting his recent paper where he found that most people require up to 6 years to get off pred although they may get to a lower dose in 2 years or less. Which is what I've been saying for the last 8 years but was criticised for not having references to back it up! Got it now!!!!

      There is a video on rheumnow - where a rheumatologist is saying she will be telling this to her patients! Hallelujah!!!!

    • EileenH
      EileenH julia85224

      Posted

      Should have reminded him that if he was disappointed what did he think you were? Prat - they need a good dose of PMR themselves and then they might be a bit more sympathetic!
    • julia85224
      julia85224 EileenH

      Posted

      I couldn't agree more, he made me feel like a naughty school girl who hadn't done her home work.

      Twit.

      Won't be seeing him again, only hope new rhematologist is a great improvement on him.

      Takecare

    • Michdonn
      Michdonn EileenH

      Posted

      EileenH, is this paper on the website, I went to the ACR website, too many papers. Thanks again for the info. Still too warm and dry here. Went north yesterday and skied with some friends on man made snow. All of the southern Rockies ski areas or having the same problem. Bad year here. Hope the New Year is treating you and yours well. Still smiling 🙂

    • EileenH
      EileenH Michdonn

      Posted

      I have just sent you a pm with a link to the HU post I put up - when I have time I'll try to get it up here too.

      Up top there is a good metre plus - but yesterday it rained all day - or slushed! Really rather yucky and today's promised sun didn't appear...

    • Michdonn
      Michdonn EileenH

      Posted

      Thanks for PM, I will read the article, I am still battling with my Rheumy, but if I can give her new information she seems to leave me alone.

      Thanks, keeping positive and smiling. 🙂

  • EileenH
    EileenH julia85224

    Posted

    Are your symptoms as good as they are going to get? If so - then you could try a 1mg reduction and see how you get on - if it doesn't work, you can go back.

    PMR can lead to depressive mood all on its own. In some people pred can cause depression and other mental health effects. And you probably have some reactive depression to your father's death. So it could be one thing - or two or three all clubbing together. And on top of that there is some degree of bereavement for the loss of your normal life through PMR. 

    There is no reason why you cannot ask your GP for help with the depression. Pills may help in the short term - talking therapies are also recommended, especially in terms of the bereavements. It is all natural enough and it can be helped. But you have to take that first step and ask for help. You have taken the first really - you have expressed it here. Now take it to a person who can provide the needful.

    Once you are aware you are taking responsibility and taking back some control you will start to feel better - but it isn't going to happen overnight. You can also take some control in terms of the side effects - most can be managed when you know how - just ask.

    • julia85224
      julia85224 EileenH

      Posted

      Hi Eileen,

      Good to hear from you and you're advice and knowledge are such a comfort.

      I have seen a Dr and meds prescribed have helped a bit.

      You're point of loss of a normal life with pmr,  or as we say a new way is so very poignant, as I have struggled with this a great deal.

      I will try and reduce by 1mg and see how I go.

      I hope you are well.

      Julia

  • Rimmy
    Rimmy julia85224

    Posted

    Hello Julia

    PMRpro and the other forum members here have pretty well said it 'all' and so just to also say the grief which follows the loss of a close family member is bound to make you feel depressed regardless of anything else. This is quite normal and apart from anything you might do to alleviate it - 'time' is - as I'm sure you know - the 'best' healer and grieving is necessarily a process.

    I have recently had my first flare after nearly a year with PMR/GCA and had to go back up to 15 mg where I have been for 5 weeks now. The waves of fatigue I was having were really overwhelming - so I have maintained this dose for a while assuming this signified the disease had amplified again. I am now starting to feel more human and will start to reduce again by 0.5mg to start with. Of course you could taper by more but if there is no hurry you could try a couple of weeks doing such a mall reduction and then the same again - just to enable you to also deal with everything else but still feel you are slowly heading in the 'right' direction. This would be as much a psychological as a physiological approach - which are both very relevant when we are trying to stay or get better.

    All the very best - and I hope your 'clouds' start to lift soon.

    • julia85224
      julia85224 Rimmy

      Posted

      Hi,

      Thank you so much for you're kind words.

      It is such a horrible time and frame of mind to be in.

      Keeping busy isn't that easy when you do an hour and then have to have coffee and sit down.

      I am sure the clouds will lift eventually.

      Spotted a daffodil bulb popping up so spring in the UK can't come quick enough.

      Takecare.

    • Rimmy
      Rimmy julia85224

      Posted

      Spring IS on the way .... at least sooner for those in the UK than us for in OZ. 

      Keep your eyes open for a flood of flowers before too long.smile

    • julia85224
      julia85224 Rimmy

      Posted

      Many thanks for you're kind words and lifting my spirits.

      Takecare.

      Julia

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