How much to increase steroids?

I'm struggling a bit here and would appreciate the advice from you lovely ladies. I had been doing very well on my dsns reduction and had got down to 3.5mg almost symptom free, having first been diagnosed with PMR in December 2014.

Three months ago my husband had a diagnosis of probable pancreatic cancer and I have been supporting him through the ensuing whipples surgery. He has come out with a positive diagnosis although only stage 2, an indwelling catheter which now requires prostate reduction, highly unstable blood sugar and an oncology referral. I have held myself together through some very difficult times but now find my polymyalgia rearing its head. I wouldn't say it's a full blown flare - just niggling pain in shoulders and arms, particularly at night, and hip stiffness. I upped my dose to 4mg and this seemed to help but now it's niggling again to the point where I am avoiding some tasks. Do I hold out at 4 and hope for improvement, go up to 4.5 or hit it with a higher dose and hope to reduce again soon? I'm in for the long haul with this and know I must take care of myself. Your advice and support would be so much appreciated.

9 Replies

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  • ~Hi MaryWR - my diagnosis PMR was January 2015.

    I take hydrocortisone due to side effects of pred.

    I had been using dead slow method of reduction and have needed to step it up after a recent sudden onset migraine - it was only .05mg reduction but obviously enough to trigger this nasty bilious migraine. This was totally left field for me as my previous migraines disappeared once post menopausal.

    In March my husband was diagnosed with rare aggressive cancer in nasal pharynx & sinonasal region. Two surgeries in quick succession have been successful thus far but wonder if my body was reacting to the stress - I was not consciously aware that I was stressed as thought I coped well but think you sound in a similar situation.

    My Rheumie suggested I step up 1mg which I did and is holding me well. I don't require a big dose to notice the benefits but I would not hesitate to even step up another .05mg to 1mg if I noticed more changes. My husband is not out of the woods yet.

    I would suggest if 4mg doesn't quite cut it, then to up to 4.5mg or 5mg - you don't want to go back to square one again.

    Abundant blessings to you both in meantime.

  • Thank you Megams. That seems sound advice and kind of what I was thinking. Abundant blessings also to you and your husband.

  • Hugs Megams xxxxxxxxxx

  • You actually know what you should do, you just need re-assurance and I am so pleased you reached out. We are here for you always.

    I would hit it hard with 10mg for at least 5 days, and then follow the DSNS for as long as you can and you feel OK.

    If you miss the 'comfortable' place by 1mg, then you will know and go back by 1mg and wait again.

    You have done wonderful to cope with all that stress and it is ongoing, so do not beat yourself up by going up, in the great scheme of things, another few mgs to keep you going is no big deal. Don't spoil the ship for a mg or two.

    Good progress is wished for your husband.

  • Thank you for your supportive and helpful response jinasc. You keep going and don't really realise the toll it's taking all the while thinking you are in control. Then lovely people say such supportive things and you get all misted up and realise that the control is skin deep only!

  • Don't mess about - take what you need to manage it. Worry about reducing afterwards.

    It's a horrible diagnosis, Whipple is a horrible procedure - but mercifully life-saving for so many. No wonder you are struggling and the rest of the journey isn't going to be motorway either - so take what you need. I refuse to compromise, I take the dose I need to manage the symptoms. I'm lucky, I have doctors who take a realistic view of using pred. But then, I'm not in the UK or USA!

    Been there once, 23 years ago and it was a "VERY interesting year" (not pancreatic ca, what is usually testicular cancer but it was in his chest and very advanced when it was identified). We got there, and so will you. Now we have a mini-re-run, prostate ca and radiotherapy - not what I'd planned for my autumn holiday but there we are. This is an absolute doddle in comparison.

  • Thank you PMRpro. I've upped another .5 mg but not much difference yet. I'll try going up to 5. It feels like such a backward step but you are right, I have to do whatever I have to to get through this. Sorry to hear about your partner/spouse and I hope all is resolved successfully.

  • Hi Mary, you can increase by even 5mg and then go down over a couple of weeks and not need to taper.

  • Mary

    I hope today is proving a much better day for you and you have upped and are feeling more pain free.

    Please don't be afraid to take more.............PMRpro has said 'take whatever you need' and that is sound advice from my friend.

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