Advice on activity level and tapering pred.

[Blackeye-susan]

I have been reducing my prednisone by 1/2 mg per 3-4 weeks and was down to 8 mg. This past week I traveled by car (11-hour ride) to my father's house for his 87th birthday and Thanksgiving. My sister and I were cooking and cleaning and shopping for 4 days. I noticed on the fourth day a little stiffness in my neck but thought it was from all the cleaning we had been doing. The day after the trip home, my fourth week was up, as I did not want to decrease during this visit, so I decreased my prednisone by 1/2 mg. For the last 3 days, I slowly began to have more stiffness in my neck and now my hips and shoulders and lower back are getting stiffer. I have increased back up to 8 mg but still stiff and painful. Did I overdo and this is why I am flaring or was it just the decrease was too much, too early? I am just not sure what to think and am disappointed and feel sad as I was trying to go slow. Do I need to add the 5 mg to the 7.5 mg or to the 8?

[PMRpro Ambassador]

Too much of everything I'd say - and that is all very stressful.

I'd suggest adding 5mg to the dose for a week and then back to where you have been good - you were already flaring with the extra activity at 8mg so I would take 13mg for a week or so and then go back to 8mg.

And I'd wait until after xmas to reduce again ...

[Blackeye-susan in reply to PMRpro]

Thank you for your guidance. I will follow this. I am wondering if I foresee that I am going to have a lot of stress and physical activity is there something I can do proactively to avoid having a flare up? Something I should watch for in my body signals or should I up my prednisone going into these activities? I am afraid that I am going to have a lot more of these type of weeks with my dad being elderly and needing help. thank you for sharing your experience and knowledge on PMR. I so greatly appreciate reading these posts as they help me a lot more to understand what has worked for others.

[DorsetLady PMRGCAuk volunteer in reply to Blackeye-susan]

Not easy to avoid stress -but limit as much as is possible (not easy I appreciate) - but you have to forward plan as much as possible with these illnesses.

When you need to visit your father again maybe split the travelling so you have a stopover (overnight preferably) -and if possible stay longer so you are not trying to do too much in any one day.

And certainly don’t attempt to reduce when you in such situations.

And although it’s tempting, it’s not really good practice to up Pred “just in case” . Once in a while when it’s really necessary is okay - but don’t rely on it to often .

[Blackeye-susan in reply to DorsetLady]

thank you for your input. I will not try to reduce after I have a busy, stressful week again. I am glad to know that I should not up my prednisone dose. How long should one allow their body to recover before resuming their reducing plan? Do you think if I would have waited a week, few weeks or more before reducing that would work better?

[DorsetLady PMRGCAuk volunteer in reply to Blackeye-susan]

You obviously can up your Pred dose when it’s really necessary- like a flare, and we do sometimes suggest when things are extremely stressful. PMRpro did when her husband was very ill, but she is extremely experienced and a long time user of Pred. But it’s not something we would advocate for most people and certainly not regularly, tgat was what I was trying to convey.

As for tapering, if I knew there was something that might be stressful, then I’d wait a few extra weeks to reduce.

When stress is going to be present for a long time, you just have to bide your time on the tapering front…if you aren’t in control of your illness, then you aren’t going to cope…and that won’t help you or your dad. Not sure whether he will grasp that fully, but your sister needs to appreciate it as well.

[PMRpro Ambassador in reply to Blackeye-susan]

It is difficult to make a blanket suggestion. It's different when you are the carer and live with the person - I needed more pred. Is there any way of there being a carer there? And as DL says, forward planning and splitting the travel of you can would help.

[Blackeye-susan in reply to PMRpro]

I am hoping that my Dad will accept local help. He is a stubborn man who still has every bit of his mind. I will take your suggestion and split the travel up and let him know that I cannot keep this up anymore.

[marionofnorwich in reply to Blackeye-susan]

If he really does have every bit of his mind, he may be able to realise the impact that not accepting help locally has on you and agree to some compromise?

[DorsetLady PMRGCAuk volunteer]

This link gives advice on dealing with a flare -just reiterates what PMRpro has advised -

healthunlocked.com/pmrgcauk...

[Blackeye-susan]

thank you for this link very informative.

[herdysheep]

I have a lengthy drive to my mother (98 still at home). My drive is not as long as yours but I started breaking the journey overnight and it makes a huge difference. Not just to stop being in traffic but to rest and have quiet time to myself. I also stay where there is a comfortable bed! I do the same on the way home although I could do the drive in the day. It helps to mitigate the stress and the tiredness. I realised I was useless being totally wiped out and more likely to rise to the bait when mother is spoiling for a fight. You can only do so much and need your health for doing anything!