Tapering causing different symptoms

Hi all, hope yr all staying safe and well, this is day 8 of 12.5, 1st day I could start to feel pain returning but seemed fine for next 2 days, but the last 5 days has been strange for me, morning are awful taking over hr just to get out of bed due to stiffness, pain, 1 limb at a time (it like doing 3 point turn in a car) no different til lunch time, afternoons seems better no pain, stiffness then from about 5- 6pm it starts again. Neck, shoulders, arms, hips, legs are painful, especially legs and arms they feel like I'm carrying blocks of cement around with me. I've been walking up 430ish last few days, so was thinking I would take pred then and try go back to sleep, but then cause I'm taking them 3 hrs earlier is pain going to start earlier in the day? Is it cause the lower dose is starting to wear off? Didnt have this on 15mg

[piglette]

Dropping from 15mg to 12.5mg can be a bit much for some people, including myself! If I were you I would go back to 15mg, stay on that dose until you feel good to go, then reduce say by 1mg this time. I would also contact your doctor and tell them you are having problems.

[Cosmos22Marigold]

Oh dear!!! Doesn't sound good and like yourself I am starting down to 12.5 today as suggested by my Dr. I haven't had any pain on 15 mgs for 2 weeks now so did you have the pain with that dose. I am new on this. Pmr so can't advise but it doesn't sound right to me. Can't you ask the Dr again if it should be so drastic. DL says do it slowly and I have followed that and it's working for me. Don't let the pain continue like that as it's a lot to put up with. Good luck.

[DorsetLady PMRGCAuk volunteer]

Ditto to piglette’s advice!

[Tamtan2 in reply to DorsetLady]

Tapering..........Hi It’s tamtan here I’m wondering if you could help me I changed my rhuemy to Newcastle and have been tapering from 20 mg to 2 mg for the last 6 months. I was fine till I got to 3 then all went downhill my symptoms are head pain which is getting worse and worries me so much : hallucinations, dizziness poor balance ,sinuses very painful,painful shoulders ,soles of feet, legs, can’t walk very far without my husband’s help the symptoms sometimes change hourly/daily. I am awaiting appointment at Newcastle but haven’t received one as yet. I try to keep positive and my husband is so supportive but I’m getting scared of my symptoms just had both cataracts done 13 December recovering well. Would you have any insight into these symptoms and are they common. 🙏🏽

[DorsetLady PMRGCAuk volunteer in reply to Tamtan2]

Hi,

20mg to 2mg within 6 months is very rapid .....can I ask why that quick?

I would say some of those symptoms will be adrenal related..

...going so quickly you haven’t given them time to start working again.... which is usually around 7.5mg. Plus some are PMR related, some probably both.

You may have felt fine until you got to 3mg, but I’m guessing things were brewing without you realising, and finally it all went to rats! (Technical term).

The problem is, because you shot down so quickly, it’s difficult to know exactly what dose you really need to control illness etc.

If it were me, I try 10mg for 5-10 days to get a proper grip of things, and then drop back down to 5mg...in 2 steps .. 10-7.5-5mg....staying at 7.5 for at least a week, but 2 may be better.

Then stay at 5mg for 3-4 weeks before thinking of reducing again...0.5mg every 4-6 weeks.

Hopefully, before you get to the latter stages you will have a new Rheumy on side.

Obviously if any more issues contact, but I suggest you raise a new post rather that add to another’s post.

Not sure if I’ve sent this before - but if I didn’t, please have a read through - healthunlocked.com/pmrgcauk...

[PMRpro Ambassador]

And a third wise monkey says the same as Piglette and DL.

It sounds to me as if the underlying accumulated inflammation hasn't been cleared out properly before trying to manage on a lower dose. So either your GP needs to leave you at 15mg for a lot longer or they need to allow a period at 20mg to do it faster. There are other possibilities though - that the disease activity has increased for some reason OR you have tried to do more (too much) for the present.

If taking it earlier prevents the build up of new inflammation in the first place, then it is possible the evenings will also be better. If not, you may need to try spilitting the dose to allow its effect to carry over to next morning. But wait and see first.

[SandraLinks]

I had the same problem early on I’m my diagnosis. I started splitting my dosage up. Half in the morning and half in the evening. It worked for me. I have been on methylprednisolone for 15 months, starting out at 8 mg. in the morning and 8 mg. 12 hours later. I am now down to 4 mg. in the AM and 4 mg. in the PM. I have had two relapses in that time, because I was descending too quickly. I have since come to the realization that this disease takes much longer to recover from than I had hoped, but I’m usually pain free. I would check with your doctor before trying this.

[Jackoh]

Don’t know too if you have gone from 15 mg one day to next day 12.5mg. Personally I always have to do the DSNS method to try to trick my body to accept new dose. The DSNS method I think is pinned on this site. Like others too when you’re stable again just try I mg per month. Some of us are a lot more sensitive to drops in dosage. Let us know how you get on. 💐

[PMRpro Ambassador in reply to Jackoh]

healthunlocked.com/pmrgcauk...