follow up on meds mistake

[Jakey67]

I posted a little while ago because I made a mistake with my meds . Having tapered to 9mg, by mistake i took a dose of 7mg for a few days. I became unwell, increased dose to 13mgs as is it was a flare, which I’ve been taking for about 10 days.

My question is when should I revert back to 9mg? I am due to go abroad on holiday for a week from 23rd March. Hoping if I step down this coming week to 9mg it will be OK for holiday? (You can always hope….)

I feel much as I did pre the flare up, mixed. Not good in morning, stiffness and shooting pains easing off as day goes on quite good later afternoon and pm. Some fatigue but manageable.

Your advice would be appreciated thanks.

[PMRpro Ambassador]

You can drop now - but it doesn't sound to me as if the PMR is properly under control. Have you got plenty of pred for the holiday?

[Jakey67 in reply to PMRpro]

I will double double check!

[PMRpro Ambassador in reply to Jakey67]

And don't forget it!!!

[DorsetLady PMRGCAuk volunteer]

I think I might try 10mg - until after holiday... better an extra 1mg than one too little.. and agree with PMRpro doesn't sounds as if your PMR managed as well as it could be..

Enjoy holibobs...

[Jakey67]

I’ll follow your advice and drop to 10 until after holiday. . I’m not sure how my PMR is managed perhaps I’ve been unlucky with flares and my own stupid mistake. I don’t know how much background pain/stiffness there should be….I’ve not had a blood test since diagnosis last May. When I get back from holiday I could get a face to face with GP would it help inform the discussion if I asked for a blood test first /or any other test? I have stopped taking the Diclofenac (which I was told was painkiller) as didn’t feel it did anything plus waiting for a heart check so didn’t feel it was ideal med. thanks for continuing help.

[DorsetLady PMRGCAuk volunteer in reply to Jakey67]

You can add ask for blood tests (CRP/ESR) but they don’t always tell the full story- need to be viewed in tandem with your symptoms - or preferably lack of them once on Pred.

Ideally on the correct dose of Pred you shouldn’t have symptoms or flares. But unfortunately we don’t live in an ideal world and life throws the odd curve ball at us! But you might find you could manage it a bit better sometimes.. 😊

[Jakey67 in reply to DorsetLady]

Food for thought as I am only symptom free (ish) early evening onwards.

[DorsetLady PMRGCAuk volunteer in reply to Jakey67]

Has that always been the way… or since reducing?

[Jakey67 in reply to DorsetLady]

this will sound like a very stupid response but I can’t remember. I was so relieved to get the pain relief when first diagnosed….but logically I have tapered several times and I’ve done that when feeling reasonable, but not pain free. I wouldn’t have tapered unless it felt ok, so best guess this is related to flares and after a taper.

[DorsetLady PMRGCAuk volunteer in reply to Jakey67]

Ok…

[Ann1A in reply to Jakey67]

Hi Jakey, strangely similar to yours ... when i took my pred at 6.00 am, my symptoms (of overwhelming fatigue, no pain) on reducing always came down like a shutter around 9.00am, leaving me torrid all day. It lifted just as suddenly about 6.00pm ... suddenly I would sit up take interest and start life again.The main reason I came on, was to say Where is your holiday?

If you are going west, to Canada, Mexico, South America, Caribbean, USA, then when I did that, I asked advice and was told to take another half a dose of pred in the evening (UK time, as my body clock thought it was) to put me on to the usual early morning ( holiday local time) dose. Coming back was not a problem, as the difference is the other way.

Good luck.

[PMRpro Ambassador in reply to Ann1A]

Some people who have had this problem tried taking pred before bed - very successfully as they slept through the bad period.

[Ann1A in reply to PMRpro]

Thankyou, I am trialling it right now, since reading a post 'Fuzzy Headed In The Morning' alerted me to another sufferer with similar effects.I changed Pred timing from morning to evening towards the end of January and almost immediately felt great improvement. I loved it ! My sleep was already poor, and with the change was no worse.

Interestingly, when i reduced (v slow taper ) tpwards the end of Feb, i discovered that my usual symptoms of total fatigue had changed to a much more workable return to what I remember from almost 6 years ago, of original PMR symtoms... pain in the shoulders and arms, significant muscle weakness BUT NO FATIGUE, and that was always the killer in a reduction.

After starting this reduction ( from 10 mg daily to alternating 9.5mg daily ) the PMR symptoms lingered for 3 weeks, which is good for me, and in the last few days have lessened.

The only problem has been, during this reduction , a sudden and vicious recurrence of Restless Legs , which I have suffered for many years but never to this intensity and frequency, and not noticably in association with a reduction. I read that inflammation can be an exacerbating factor for RLS, so I suppose the shift in pred taking time, from morning to evening, has shifted the inflammation time ?? Am I right ?

I had been planning to report in the Fuzzy Headed post strand, once I had given my trial enough time to be reliably considered a result.... for the first few weeks I was holding my breath, frightened to jinx the situation !

[Jakey67 in reply to Ann1A]

How did you manage the dose for the changeover from am to pm?

[Ann1A in reply to Jakey67]

For my last morning dose I chose an easy day and only took half a dose, then early that evening a full dose, which I gradually eased back to 9.00pm.

[Jakey67 in reply to Ann1A]

Thanks for response. I’m only a two hour flight to Mallorca so should be no problem.

[PMRpro Ambassador in reply to Jakey67]

However good you were on the starting dose is your guide as to what to look for as you taper, You should never feel worse at the end of a taper than you did at the start. Unless you have something you know about - pred doesn't sort everything,