withdrawal or flare

[Skier321]

I have just reduced from 5.5 to 5 mgs of prednisone. For awhile I have been experiencing jello or rubbery legs but nothing else. I was at 5.5 for a month. When I reduced to 5 this week I felt a sore wrist, back of right knee and stiff lover back. I have been going back and forth from 5.5 to 5 this week. Today I have a stiff back only now in the afternoon a little rubbery legs. Trying to decide what to do. Treat as a flare or as withdrawal affect. I have been reducing .5 mg since getting to 10 mg. I had a flare last year at 8mg when going down 1mg per month. Until now I have experienced no stiffness by reducing .5 per month. Your thoughts are greatly appreciated.

[HeronNS]

Do you use a slow taper method, one where you introduce the new dose gradually over the month or six weeks of a taper, rather than overnight, or, as it sounds like, alternating? The lower the slower - so it's great you've been tapering by .5 a month. But you may have to slow it down even more. Not necessarily by cutting the tablets even smaller, but by lengthening the time of the taper, or stayimg longer on a newly achieved dose before the next taper.

You are at the level where your adrenals have to start working and it can take some time before your natural cortisol production is up to par, which explains "jelly legs" and other symptoms of fatigue. You may find a gradual introduction, not alternating old and new doses, but gradually increasing the days you take the new dose, will work. If you still experience PMR-type pain and stiffness, then it would be wise to stay at 5.5 for a few more weeks then try again. But if it resolves to be only the fatigue and weakness, then carry on with the taper, but perhaps ask your doctor to test your morning cortisol, to see if you are producing natural cortisol.

[Skier321 in reply to HeronNS]

thank you for your thoughts. I have only been reducing .5 mg per month only this week have I been alternating. Between 5.5 and 5 I don’t want to flare again

[HeronNS in reply to Skier321]

If the discomfort worsens and becomes more like PMR then you do need to stop the taper and go back to where you felt your symptoms were still well controlled. If they diminish and go away, then it was pred withdrawal. You are the only one who can judge that, but if it were me I think I'd go back to 5.5 for a bit. The dose you are at now has very few side effects so it won't hurt ot go very slow, In the end you may end up taking less pred if you go really slow and avoid a flare. I've never been able to get off pred. I started in 2015, and in 2020 had a brief flirtation with zero, but had to start again after about six weeks. I take about 2 mg most of the time, and it is hard to believe that such a small amount of pred can make so much difference in quality of life,, but there you are!

[Noosat in reply to HeronNS]

I am tapering from 5 to 4.5, slow rper. but do recognize the percentage is larger the lower I go. I take a large dose of Tyleolenol to see if that helps, usally does

[HeronNS in reply to Noosat]

If Tylenol is helping then it's unlikely to be PMR itself causing pain symptoms, but maybe it helps with pred withdrawal? I don't find tylenol particularly useful for anything, and it can cause liver damage.

[Noosat in reply to HeronNS]

I know it does not help with PMR not that naive or uninformed. However we sometimes rend to relate all pains o PMR when it is not te case

[Skier321]

thank you makes sense. Much appreciated

[DorsetLady PMRGCAuk volunteer]

This link explains the difference -

healthunlocked.com/pmrgcauk...

—are the symptoms you describe your normal reaction to flaring? They do seem a bit odd, but then everyone is different….sure they aren’t old war wounds resurfacing at a lower dose?

Suggest you return to 5.5mg as suggested by HeronNS and then maybe use a slower tapering regime - see here for examples - personally think they are better than an alternative day approach to tapering -

healthunlocked.com/pmrgcauk...

healthunlocked.com/pmrgcauk...

But you must also consider that 5.5mg is the lowest dose you can achieve at the present…won’t always be, but maybe just now - 18 months in, is not that long for GCA….

[Skier321 in reply to DorsetLady]

The stiffness is a lot like the first flare I had a year ago. But I have not let this get that bad. Yesterday and this morning I took 5.5 and feel a lot better. I guess I just have to tip toe through this minefield. Thank you for your help

[SnazzyD]

Have you done anything different with your time? I mean a different activity, however insignificant.

[Skier321 in reply to SnazzyD]

no nothing different. I still golf, ski and do yard work. This sounds like a lot for PMR but I have always been active except, when I was a day away from a wheel chair, when diagnosed with this disease

[PMRpro Ambassador]

I suspect you are skating on the borderline of barely enough. I'd go back to 5.5 and wait a month or so and try again, maybe even wait for a touch of spring.

[Skier321 in reply to PMRpro]

thank you very much, appreciate the help