On DL slow taper. Facing people around in a few days. Wonder about upping slightly for a day or two.

[Ebiker]

Dropping from 10mg of pred to 9mg on week 4 with only 1 day to go on old dose. I am having good days and average days but more good gradually. I have not experienced any pain or stiffness but have had some dead head days. I just push through, rest or doze when needed. Currently lack of energy and having to pace.I will have some family for a couple of days and they know my situation. I know DL and others have indicated that an increase for a day or two could be a good idea. I wondered if I should take 10mg (old dose) for a few days.

Thanks as always.

[DorsetLady PMRGCAuk volunteer]

Perhaps just repeat the last couple of weeks from the plan - and as family are aware of your situation, delegate jobs to others as much as you can!

Enjoy…

[Ebiker in reply to DorsetLady]

Thanks DL. I omitted to say that they are coming in 3 days time so thought a boost for the next 3 days might give me a bit more zip and help me to 'engage'. Recently I have not been able to that always. I, however, won't have to do anything if I am not on a good day. I do not live alone.

[DorsetLady PMRGCAuk volunteer in reply to Ebiker]

Up to you - and then are you intending to go to 9mg?

[Ebiker in reply to DorsetLady]

How much of a boost do you think? I thought take 10mg for next 3/4 days. Then back to 9mg. I must add that I am getting more good hours each day, always later in the day so I believe the body is catching up.Worth a shot at 10mg, I guess. I would be on 9mg daily by Sunday if I followed the slow taper. I would stay there at least 2 - 3weeks before starting the next drop to 8mg if I am doing OK.I was down to 6.5mg in October '22 ( after 3.5 yrs) when I had the bivalent Covid booster which we believe reactivated the pmr. Never been good since. Had to go up to 15mg!

Thanks for reply.

[DorsetLady PMRGCAuk volunteer in reply to Ebiker]

Sounds okay…and yes stay put for 2-3 weeks before you try another taper. .. might be worth introducing the 0.5mg tapers if you think you are still struggling a little after covid booster hiatus…

Good luck…

[Ebiker in reply to DorsetLady]

Thanks DL. Yes I thought it would be sensible to reduce by 0.5mg either on next drop or if feeling really good I might risk 9mg to 8mg but certainly I would start 0.5 drop from 8mg. Need to listen to my body!

[loverumba]

Never go up, or you never get off it. Depending on life stress, some times some people have to reduce their taper rate by staying an extra week or two, or reducing only by 1/2 mg, but be patient with your body. Never go up.

[DorsetLady PMRGCAuk volunteer in reply to loverumba]

Never go up.

Whilst we would agree not to go up unnecessarily, sometimes there is a very valid reason to go up! If GCA is involved it could be total blindness..

[loverumba in reply to DorsetLady]

Of course. That's only for PMR.

[Ebiker in reply to loverumba]

Had a good day yesterday and it has started well today.Putting in an extra day or two on old dose is not going up but simply lengthening and slowing down the drop slightly so should be fine.

[PMRpro Ambassador in reply to loverumba]

And if your pred dose for PMR is now too low and you DON'T go back to the correct dose, the inflammation will just build up again until you need a much higher dose again, maybe even start at the beginning again.

You will get off pred when the underlying autoimmune disorder that creates the inflammation has burned out and gone into remission, not before. Forcing someone to stay at a dose that is too low and saying they must not increase their dose is more likely to INCREASE the time they spend on pred. The aim is always to be at the correct dose - to manage the inflammation fully.

[Steal]

Enjoy your family's visit. I just had 5 extra people for 5 days and had a great time. I had pre prepared and frozen the 5 evening meals, ordered various cold lunch things with my online grocery order, and they brought their own breakfasts if they wanted things we didn't have. I warned them I wouldn't be doing the hostessy stuff and that I would probably have to retreat and rest from time to time.. They all mucked in beautifully, did all the table laying, washing up etc. and went for walks to leave the house quiet sometimes. We normally lead a very quiet rural existence.Above all, delegate and never feel selfish or guilty. Prioritise looking after yourself, they will understand.

Good luck, enjoy their visit.

[Ebiker in reply to Steal]

Thanks for that Steal. I am in a similar position....very quiet rural area, nephew and wife fully understand my situation and were even planning to stay in a hotel. However, we have a large house with a part which can be used self contained.....lots of outside space. I can disappear any time and they will all have a good time without me! I am just hoping that I can at least have a run out with them and a quiet cafe lunch!

[ladygigger]

Enjoy your family's visit - I'm also in a very rural small village and my daughter and her family visited late last month from France. Usually they stop with me but since I'm sleeping (or not, as the case may be) in another room at the moment due to insomnia they decided to stop in an Air BnB.

My son and his family are visiting from Spain in a few weeks and will be doing the same so that I get the best of both worlds: most of the day with the family and grandbabies, but none of the stress!