Tapering

[Devoid]

When do you feel any side effects from a lower dose ?? Day 3 following a 1.5 drop to 16 mg , have been okay days 1and2 but today legs wobbly, heavier feeling and needed a lie down after breakfast!! No Gca symptoms just these odd bits

[SnazzyD]

Hello, at higher doses it was typically day 3 or 4. Lower doses tend to kick in earlier but below 2mg it tends to be the next day. However, others may well beg to differ.

[DorsetLady PMRGCAuk volunteer]

I always found steroid withdrawal hit on day 1 of new dose and lasted for 2 to 3 days - with a general feeling of malaise and irritability, so maybe it’s that. Give it another day or perhaps two and see if things improve.

Although I never actually had a flare, through others experiences I would say it probably starts anywhen between 3 to even 14 days, depending on how sensitive you are and the size of reduction. Plus the effects are likely to be similar to your original symptoms pre diagnosis.

I think it might be a case of wait and see, but don’t let it go beyond 6-7 days. By then steroid withdrawal should have ceased, which only leaves a flare in the offing!

[Blearyeyed]

At lower doses , unless it involves the onset of PMR Pain and the distinct PMR symptoms , the wobbly , Fatigue can be your body still adjusting to the new dose , and the side effects of you needing more adrenal function but the adrenal gland still being sluggish when it should be helping you. It will vary to some degree for everyone depending on their all round health needs.

But broadly :

Days 1 to 5 Fatigue side effects can literally be from dose change at any dose if they don't involve increasing Pain and distinct PMR symptoms and only involve steroid induced side effects.

Unfortunately , Fatigue and Nerve/ Muscle related Joint Pain and headaches can be an ongoing symptom while you taper even if the PMR does not Flare.

PMRPain and symptoms =Flare , Fatigue and No Pain = Rest , Pace , Watch and See.

On lower doses this can often happen.

Days 6/14 can bring a reduction in these drug change related symptoms but a more obvious display of PMR Pain and PMR symptoms . If the Fatigue and PMR Pain and old symptoms start to reemerge , and the Pain is not helped at all by Paracetamol , other pain killers or Self Care then PMR is more likely to still be active and your previous dose may be the one that you need to rest on for a while before doing the final steps down to zero.

Days 14/ 28 if you start getting the PMR symptoms and Pain now as sudden onset and /or it worsens by the day , even if you didn't have problems in the first few weeks , it is beneficial to have your inflammatory markers checked and / or you may need to increase to the previous dose anyway , as any of the effect of a higher dose a few weeks before will have worn off and the Pain or PMR like symptoms and no pain relief from other Pain medications show that your dose is not high enough for your needs.

Hope that helps , and the Fatigue improves soon.

[PMRpro Ambassador in reply to Blearyeyed]

Though to be fair, if the drop is taking you below the dose you need, PMR pain can return very quickly.

[Blearyeyed in reply to PMRpro]

Yes that's why I said if they don't involve increasing PMR Pain and symptoms .

Pain and PMR Symptoms can come back from Day 1 and beyond . They are the signs to look for rather than Fatigue and wobbliness , mild headache , joint pain that clears with standard pain killers or weakness in the first few weeks / months.

People often forget that the Pain can come back quickly a month on too.

[Devoid in reply to Blearyeyed]

Gca diagnosis rather than one , not that I dare speak too soon !

[Blearyeyed in reply to Devoid]

Yes , if GCA symptoms and Pain begin to pop and worsten the same method , check with GP, but on the knowledge of the way your own GCA symptoms manifested you again may need to increase to the previous dose . Any increase in GCA visual disturbance the same thing . With GCA, checking with the GP and getting careful monitoring during treatment is very important .