Busy week ahead, should I increase my dosage slightly

[Billiebobdog]

I have a very busy week ahead which involves quite a lot of driving and activity, thankfully leaving home mid morning so I have time to wake up and get moving.

I have just done my first week at 12.5mg of preds and whilst it has not been problematic a couple of aches have resurfaced which eventually go away by the afternoon. I was wondering if it would be prudent to increase the dose a fraction e.g. 13.75mg to combat the extra stress and activity that next week is going to involve and then go back down to 12.5mg once I can rest more

[DorsetLady PMRGCAuk volunteer]

I personally wouldn’t take extra as a matter of course, what you describe could be steroid withdrawal….but if it becomes necessary during particularly difficult day(s) maybe an extra 1mg could be considered. Others may have different ideas.

[jinasc]

I noticed you profile and it looks like you have been diagnosed around a month ago. It would be helpful if you could add more info.

You are fairly new to this and there is a lot to learn, mainly pacing yourself. You need to learn that a 'busy' week with a lot of driving (sitting in one position for a long time) and then 'activity' is asking a bit too much of your body which is having to cope with a drastic change.

To take a drop to 12.5mg and then a 'busy' week, does not give time for the body to adjust.

This might just be a hard lesson learned so try to avoid any extra pressure during that week and be prepared for 'bite' back. PMR has a mind of its own, unfortunately.

DL has given good advice.

[Billiebobdog in reply to jinasc]

Not sure what extra information is needed but I did a month on 15mg Prednisolone and have dropped to 12.5mg now. My diagnosis was based on the blood results by my GP who originally said to me that the inflammatory markers were high but we need to wait for the rest to come in but within an hour she rang me to say that she didn’t know why she was waiting as from the symptoms and bloods I had PMR - symptoms were ongoing extreme pain, shoulders, lower back, arms, thighs that normal painkillers just didn’t help apart from making it a bit easier to function once they kicked in, plus the fact that in the mornings I needed to sit for an hour just to get going. This had been going on for months.

The drive I am doing is about 1hr15mins each way, or should be but it’s the M5 so who knows, with 3-4 hours there. I plan to get to my destination with an hour or so to spare so I can rest before the training (with the dogs) starts

I was managing before diagnosis to do this but it was quite hard

But really I was wondering if upping my dose a little for the week would be sensible or just ride it out and be careful to rest efficiently

[MrsNails]

Hi, at 12.5mg you won’t be experiencing any issues with Fatigue but maybe a few more aches. You will need to factor in some rest, are you doing all the driving yourself?

I started on 15mg & was still buzzing along at 12.5mg - 11mg was always my sticking point….

It’s not good practice to add in extra Pred ‘just in case’ as your body will get to ‘like’ that extra buzz.

How long have you had PMR?

Kind Regards

MrsN

[Billiebobdog in reply to MrsNails]

I’ve probably had PMR for 6 months but was only diagnosed at the end of of July when I finally went to the doctor as I just didn’t want to hurt anymore

[HeronNS in reply to Billiebobdog]

It sounds like you maybe tapered by too large a dose. Given that it's done, I agree with the others that raising the dose for the day is not in itself a good idea. If you find as the days go by, however, that you continue to feel the onset of symptoms, it would be wise to reconsider the amount of that taper. Many people manage better with only 1 mg taper from 15 mg. More than 1.5 at that level is actually over 10% which is our rule of thumb for amount we should taper by to avoid pred withdrawal symptoms. And please try to taper by 1 mg steps next time, even if your doctor still advocates 2.5 down to 10.

You may also be pleasantly surprised that you manage the day better than you expect. But be extra kind to yourself the day after!

[piglette]

Personally I would not increase just because I am going to be busy. I would just try and be as careful as possible. As the others say steroid withdrawal can happen for the first couple of days or so. Paracetamol can help.

[SnazzyD]

That was always a complete no no for me other than for emergencies, never in order to fit in with lifestyle. The reason being that it can become a slippery slope as to what is deserving of a little extra and it could be easy to fit the Pred to the activity rather than fit the activity to your disease. Also, Pred is great but I wouldn’t pop extra unless it was clinically indicated because it has its faults and some accumulate. In addition, on these dose levels it is easy to feel energised which makes one the worst judge of what is too much for your body which is still going through autoimmune stress. The Pred is not stopping that. Finally, you could get into a mess if it becomes a regular thing because your body is having to deal with new excess and then withdrawal, which for some isn’t good.

[PMRpro Ambassador]

If I understand correctly, you were managing it with untreated PMR? I would have thought you will manage it better with pred, but you WILL find it tiring and you MIGHT find you hurt more. But I don't think taking more pred "just in case" is the right way to go. If you are doing too much then pred is unlikely to stop the delayed onset muscle soreness which is very common and to be avoided if possible - only pacing will do that. Unfortunately we sometimes have to accept that we can't return to our normal favourite activities. The only way to find out is to try.

[Billiebobdog in reply to PMRpro]

Yes, until diagnosis I was ‘coping’ but I felt so awful some of the time, I think I was lucky in that there were not too many really bad days, more just generally feeling awful and hurting, maybe it was waxing and waning all that time

[PMRpro Ambassador in reply to Billiebobdog]

I had 5 years like that - constant pain and stiffness but nothing totally disabling until one morning the myofascial pain syndrome struck and I couldn't get out of bed. I'd say each of my real flares has started like that - total immobilisation with low back muscle spasm as the characteristic sign,

[S4ndy in reply to PMRpro]

Me too! Managed 4 years or so without pred. I am now on 5mg and I would find what you are going to do would fire me very quickly. I wouldn't take extra pred but would make sure to have a complete rest day following your excursion. I am off on my hols in Friday and have at least a 5 hour journey. I know the first day of my holiday will be resting up and likewise on my return. It's all about pacing

[Billiebobdog]

Thank you everyone, I will just take it carefully and not increase my dose, and take the advice of tapering a bit slower when I next go down, which would be in about 3 weeks