Suspected flare - ? When to up the steroids

[Tiggy70]

Hi, I’m posting this query although I think I know what the answer will be.

It’s almost 4 years since my PMR diagnosis. The lowest dose of Prednisolone I’ve managed so far is 8.5 mg. I’ve successfully reduced from 10mg at the start of January 24 (.5 mg at a time) using the DSNS (5 weeks) to 8.5 mg which I achieved in mid March. Since March I have remained at 8.5 mg until 25 June when I was feeling ok and decided to try to get to 8mg again using DSNS.

Last Saturday at day 19 I started with bi lateral aching in my biceps, shoulders and some hip pain. I’ve been ok during the nights but the symptoms seem to kick off about an hour after I get up and get progressively worse.. I’ve taken paracetamol but it only takes the edge off. I’m currently on a second week course of antibiotics for a UTI and have been having episodes of A.fib.

So my question is do I carry on with my reduction for a few more days in the hope that is improves or stop and take 13mg for a few days and then drop back to 8.5 where I was happy. Also can 2 courses of antibiotics (Nitrofurantoin and Trimethoprim) affect how well the pred is working?

I’m feeling a bit depressed as I thought I was ready for this reduction and I have pressure from my Rheumatologist to reduce .5mg a month which I can’t do. Your advice as always would be much appreciated. Thank you, Tiggy 🌸

[CoziNess]

If it was me I'd just pause until the stress and pain reduces. I often get sore whilst tapering.

[DorsetLady PMRGCAuk volunteer]

Don’t continue reducing, but you can repeat current stage or go back to previous one and repeat that.. it does sound as if PMR is grumbling, but whether that’s steroid withdrawal or the start of a flare it’s difficult to say. Obviously if that doesn’t help or things worsen then you do need to treat as flare.

Can you just clarify what time you take Pred… and do things improve when the Pred has had time to kick in? From what you say it doesn’t seem to…which is unusual.

But you are entering the ‘adrenals needing to arouse themselves’ zone , which may not be helping.

I can’t say any antibiotics I took affected the Pred, but it was early days with GCA when on high doses.

It’s never helpful when you have pressure from Rheumy…I do wish they’d be a bit more understanding at times.. some seem to think we like being on Pred!

[Tiggy70 in reply to DorsetLady]

Thank you for your advice. I take all my Pred after my breakfast normally around 9.30 am. I woke today with my arms feeling heavy but the aching didn’t start until around 10.00 am. I’d already taken my Pred so I took 2 x 500 mg Panadol. It didn’t help much and I still had pain and soreness in my arms and shoulders at 2.00 pm. I had a couple of hours (4.00 pm -6.00 pm) when the pain eased a bit but I’ve got it back now and plan to take some more Panadol before I go to bed.

Can you clarify what you mean by repeating the current stage? Do you mean to go back to week 1 of the reduction from 8.5 to 8mg. I’d been ok on 8.5 for 3 months prior to that. I don’t really want to go back to the 9 to 8.5 reduction (the previous one) as that would take me back to where I was in February. Thank you.

[DorsetLady PMRGCAuk volunteer in reply to Tiggy70]

If you’re following the DSNS then return to the step before the one you are on now -so if you’re on 3 days old dose, 1 new-go back to 4 days old dose, I new.. (that’s just an example)

If it’s mine and you’re on week 3 go back to week 2.

Does that make more sense ? Not back to previous dose.

Sounds as if dose isn’t lasting as long as it should -so that could mean it’s not enough.

Some split their dose to help -but don’t try that for time being -if you try 2 different things at once you are never sure which one is working.

[Tiggy70 in reply to DorsetLady]

Thanks, I understand what you mean now. I’m going to go back to week 2 and see how I get on 🤞. If I’m still having issues I’ll treat it as a flare and do the flare protocol. Thanks for your prompt reply, reassuring as always. I don’t know what we would do without our wonderful ‘experts’ x

[PMRpro Ambassador]

I have had exactly the same problem in trying to get from 7 to 6mg and have tried 4 or 5 times now. I'm on Actemra so you would think it should be a doddle but after about 2 weeks every time I start to experience bicep tendinitis which spreads until gripping or rotation of my forearms is excruciating and very impractical as I live on my own. Even driving an automatic is uncomfortable. At 6mg I also feel adrenally-lacking in response to anything remotely stressful like dealing with anything official. At 7mg I set off in the camper for the UK with no bookings of any sort made - and had a great journey without any wobbles.

Long discussion with the rheumy and he's happy if I am stable at 7mg and have actually reduced the Actemra to 2 weekly rather than weekly injections. So I shall try to spread them rather than worry about the pred.

[Sharitone in reply to PMRpro]

Is there a reason for not trying 6.5mg?

[PMRpro Ambassador in reply to Sharitone]

I can't cut my pred - I'm on Lodotra, the delayed release form which comes in 5s, 2s and 1s. I suppose I could try alternate days but I'm happy enough where I am.

[Tiggy70 in reply to PMRpro]

Hi, thanks for your response. As I’m ‘only’ 4 years into this journey I hope I will eventually get lower but none of us know how the disease will pan out do we? Today I thought things were going a bit better but mid afternoon I could feel the pain starting and slowly creeping up my arms. At 4.30 am today I woke with a jolt and could feel the IL-6 rearing its ugly head. I just can’t believe how half a mg of Pred can make such a difference. I’ve just been re reading the tapering plans in FAQ’s. I now realise that I’ve been confused and I’ve been using DL’s plan when I thought it was yours. DL’s plan has worked for me in the past but I think I now need a longer taper. I hope to creep down without the PMR noticing!😛 I’ve just taken 2 Paracetamol in the hope that it takes the edge off. It sounds like you have a really good Rheumy who listens to you - I wish mine was like that! I hope you are enjoying your stay in Scotland. Unfortunately summer has skipped the UK but hopefully we’ll get some sunshine soon 😩😩

[PMRpro Ambassador in reply to Tiggy70]

Early September probably - when I leave!!!! The alternative at home is over 30C and thunderstorms - lousy year there too!

[Tiggy70 in reply to PMRpro]

I’m so fed up. During the miserable days of winter I so look forward to warm, sunny days. My garden hasn’t risen to its usual heights and a wild rabbit has moved in and eaten a lot of my flowers and lettuces!

[PMRpro Ambassador in reply to Tiggy70]

That's not fair! Mind you - my daughter is pleased the garden here hasn't become any more rampant! The former veggie plot is rather overgrown though - and not with veg! 2 years of neglect hasn't done it much good

[DorsetLady PMRGCAuk volunteer in reply to Tiggy70]

Mine comes in three variations - -5 weeks,b7 weeks and 14 weeks - and anyone can be extended by just repeating each stage. As explained previously.

[Tiggy70 in reply to DorsetLady]

Thanks. I knew you had a 5 week schedule which I’ve used successfully on a couple of tapers but wasn’t aware of the 7 and 14 week ones. I will look in FAQ’s and re read them all🌸

[PMRCanada]

I encountered the same challenge at 9mg, stuck for almost two years. Despite 5 attempts during that time to drop to 8.5mg they were all unsuccessful despite only dropping every 7 weeks. Eventually on week 3 of my taper I would get a sore neck, shoulders and biceps.

I ignored those symptoms once for a few weeks resulting in symptoms getting worse which required a 10-day pred burst to stop a proper flare from fully blossoming. The other times I was able to get away with a 5-day pred burst upping my dose by 5mg for one day, then 4mg the next and so on, landing back at 9mg where I was comfortable. For example I would start flaring dropping to 8.5 so add 5mg = 13.5 the first day, 12.5, 11.5, 10.5, 9 (hope that makes sense). Was grateful not to have to go back to starting dose with each failed taper down to 8.5.

I’ve been on two types of antibiotics for diverticulitis and it didn’t interrupt my taper (but I did have to stop my Methotrexate while on them).

Hope you find that dose which provides you some relief sooner than later. Is there any way you could take your dose earlier in the morning….that may help with morning stiffness.

[Tiggy70 in reply to PMRCanada]

Thank you for your reply. I’m currently repeating the previous week of my taper to see if things settle down a bit but if it doesn’t improve I’ll have to consider upping my dose. Your 5 day Pred burst sounds like a good plan as an interim measure. I’m stuck at the moment in the ‘do I don’t I’ increase the Pred. I do so want to go lower because of the side effects but I can’t function like this. We are looking after 2 of our grandchildren in the school holidays for a week soon and I need to be ok for that. I note that you are taking Methotrexate, how have you got on with it? Do you think it has helped you to reduce? My Rheumy’s pressurising me to go on it but I’ve resisted so far as I’m worried about the side effects (hair loss , gastric issues as I have IBS). Re taking the pred earlier I could try that. Thank you 🌸

[PMRCanada in reply to Tiggy70]

I’ve had no side effects from taking MTX except some hair thinning, and at the beginning my dose was too high so once lowered no problems. I’ve dropped my pred dose from 9 to 5 ( eight tapers of .5 each). It’s been slow however part of that is due to slowing down/repeating my taper the last two drops due to adrenals sputtering back to life. I had been stuck at 9mgs so felt I had to try something. I have diverticulosis/itis but it is not bothered by MTX.

My rheumy and I are pleased with my progress and the plan is to lower pred dose as much as I can, SLOWLY. I have not flared once in the 2.5 years I’ve been on MTX, even when I was out of the country dealing with my mother’s sudden death all by myself, and when our step-dad fell down the stairs and broke his neck and died. Both events were within 3 months of one another.

You really wont know how you’ll get on with MTX or any other steroid sparer until you try.

[Tiggy70 in reply to PMRCanada]

I think I will have to try MTX and see how I get on. I’m worried about adding another drug to the 9 prescription meds. I already take plus I have type 2 diabetes controlled since January with insulin.

I’ve had a really bad day today with aching and stiffness so I’m going to try your suggestion of a 5 day pred burst tomorrow to see if it stops it becoming a full flare.

Thank you for your support, Tiggy 🌸