Still flaring after increasing Pred ? what do I do next please?

[Tiggy70]

I started a pred reduction from 8.5 my to 8mg on 25 June using DL’s 5 week tapering schedule. I was doing ok but on day 19 day I started to get the tell tale signs of a flare. I continued for a couple of days but was getting no better so I posted for advice. It was recommended that I go back and repeat week 2 which I did. I added paracetamol to the mix for 2 days which didn’t help so on the 18 July decided to up the pred dose. I tried what someone on the forum called a Pred burst which had helped her and only took 5 days. I have a lot going on at present and doses around 14 mg make me feel rubbish and a bit spaced out . So far I’ve done a 13, 12, 11, and 2 days at 10 and today I’m still experiencing aching arms, shoulders and hands and just feel generally unwell. Also my blood sugar keeps spiking (16.4 half an hour ago) and I’m on insulin.

My question is where do I go from here? Do I revert to the full flare protocol and add 5mg for 7-10 days and then drop back to 8.5 mg. I haven’t let myself get into this situation before in the 4 years dealing with my PMR and don’t know what to do for the best.

PMRpro and DL you have helped me so much in the past. Your advice would be much appreciated thank you, Tiggy.

[DorsetLady PMRGCAuk volunteer]

Not sure you have a lot of choice - if previous version didn’t work, then try the the other. Sounds as if 5 days at higher dose was not enough for you.

The fact that you ‘have a lot going on at present’ probably isn’t conducive to getting a flare back under control … but such is life. We can’t always pick and choose what life throws at us. 😏

[Tiggy70 in reply to DorsetLady]

Thanks. I’ll start the increase tomorrow. I’m reluctant as I don’t function well on the higher doses but I’m not functioning with all the aching at present. My son arrives from the US with my granddaughter this Wednesday then we’re all off to Centre Parcs on Friday for a long weekend with my daughter and her family. Also I’m currently having my bathroom completely refurbished which has gone on longer than expected😩. It should be completed tomorrow 🤞.

[DorsetLady PMRGCAuk volunteer in reply to Tiggy70]

Can understand your apprehension to increase… but it’s rather Hobson’s choice isn’t it? If you aren’t functioning at current dose, then you need to bite the bullet.

Hope it works, and enjoy your family get together…

[Tiggy70 in reply to DorsetLady]

Thank you🌸

[Tiggy70]

Thank you🌸

[Tiggy70]

I’m talking to myself now!!🤪

[DorsetLady PMRGCAuk volunteer in reply to Tiggy70]

Happens to the best of us!

[PMRpro Ambassador]

I agree with DL - and really, however much you dislike it, you are where you are and if it needs more pred - that is what it needs!

Feet up at Centre Parcs and no racing around. Everything goes on longer than expected! Just been discussing a project with an architect who asked time scales - I don't have one and he said, that is good, no pressure, no stress!

[Tiggy70 in reply to PMRpro]

Grandchildren and younger adults have a few energetic activities booked. I’ll stick to floating around in the pool and knitting/reading! Thanks as always for the advice 🌸

[Raewynne]

If you have family coming and extra activities I would be staying on the increased dose where you are comfortable. I have been having flare up issues and Increased by 5mg.Stayed there at least 2 weeks before reducing.Even then I still couldn't reduce further so I'm just taking it slow.Keeping the stress levels down.!

[Tiggy70]

Thanks. It’s so hard to find the right balance isn’t it?

[krillemy]

I know how it is, sadly. I have been flaring since mid-June, and only now taking it very slowly (difficult with grandchildren—I know) and staying on 13.75 mg for a week I am feeling better. I am still stiff though and tired and do not have a lot of muscle strength, so we (husband) drive to the beach to have our dip. It's only 450 m, and in May I walked 5 km per day in Greece... It seems to happen a lot to me in early summer. I take the pred I need but try to keep it under 15 mg as that tends to get me agitated and all worked up. Good luck