How to manage tapering

 I am so very sorry to hear that sad news Glenys and the word 'stressful' likely hardly describes how terrible and shocked you must be feeling.  Others with more expertise than me will come on board soon but it seems very reasonable to at least temporarily taper 'up' to where you at least feel less 'physical' pain. At this point it is best not to worry too much about the longer term - you have far too much on your plate at present - you need to make allowances for such an extreme emotional situation. Down the track you will be able to reassess things in a more measured way.

All my sympathies to you - do take care of yourself 

Rimmy

Heartfelt sympathy Glenys.

As Rimmy says  stress does not remotely describe your experience.

It is true that 20 is a highish dose but certainly not unusual; I was started on 30 when I first had PMR. and it was nine weeks before I got down to 15. I understand from your post you only stayed on 20 for a week. Was that under doctor's instructions, I wonder? If 15 is not controlling your symptoms then perhaps you need the higher dose for a little longer.

I hope you have good support, not least from your GP. What does s/he advise?

 

Dear Glenys - my heart goes out to you.  I can feel your pain in more ways than one - I am in a similar situation - but it was my Mum that passed away two weeks ago.  I was also tapering after a flare up in the summer when I had to increase to 20mgs - I was down to 15mgs when my mum passed away and due to reduce again - that very week  - but my GP advised me to stay at 15 for longer-  I think I will know when I am ready to reduce again. Although I do have a hospital appt this Thursday ( I had to cancel the one I had booked for the day after Mum died) and I am wondering what they are going to say now - they were very keen that I should go on methotrexate if I wasn't on a much lower dose when I next saw them - oh well - who cares - at the moment it is the last of my worries  

?Do take care of your self - have you got any family support?   My prayers are with you at this time.         

 

You're going through a mind numbing experience and the important thing at the moment is keeping pain at bay. I would go back to 15mgs and higher if necessary for the support you need. you will be able to taper down the line. Thank goodness Pred brings relief. Sending warmth and hugs. 

Oh how awful for you. I agree with the others. Temporarily you must do what it takes to push PMR symptoms into the background. There will be time enough to manage in a few weeks. As you say, this stress will not go away for a long time, but your adjustment to it will enable you, in a few weeks, to return to a possibly modified tapering schedule. Good luck.

I'm so sorry to hear of your loss - there is nothing I can say that will help.I can imagine the awfulness you are going through as a German lady here on the campsite I'm staying on here in Italy had exactly the same experience last week - all the complexities of repatriation are mind-numbing when you are already numb.

Were you still OK on 15mg? Don't worry about the dose - it isn't that high, people with GCA spend a lot of time at three times that. New work has shown that the long term effects of pred at PMR doses does not actually cause anything like the side effects that we have been told. You will find a link to the paper "Polymyalgia Rheumatica and Steroid Side Effects: New Findings" in this post, about half way down:

https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316

I am very sorry to hear of your husband's passing. I would increase the dosage to where you you were last comfortable, stay at that dosage for a couple of weeks. If at that point start a reduction, using a conservative modified DSNS method. Take it slow it is not a race. Prednisone is not causing the damage that it was once thought to be doing. Good luck, sorry for your loss.

I am so sorry you are going through this terrible time, I cannot imagine trying to cope with the loss of your husband and managing this disease as well. I do agree with everyone else’s comments. I have both GCA and PMA and started at 50mg at the end of May this year. Under the rheumatologist instructions have begun tapering and am only down to 14mg...but not without setbacks and mild return of symptoms that I persevere with until they ease, then I continue with the next drop once stable. I am in no rush. I am prepared to increase the dose if I have to until I stabilise. The side effects of pred are not my biggest fear, the return of the severe and debilitating symptoms are. And what can occur from GCA is the biggest fear of all. My advice, like Eileen’s and the others, is increase if you have to. Get through this time with whatever help you need, you can always drop later when symptoms and stress reduce. It was stress that “ignited” this disease for me, without the pred I would not have coped at all. 

Heartfelt sympathy Gleny's, so sad for you and your family . Sending you all Healing and Peace : 

Dea