Advice on tapering needed PLEASE

[Footfairy-1]

I've been tapering gradually and got down to 8mg and was ok, but when I went to 7mg it all went wrong!

Usually when I start a taper the first 5to7 days brings some pain then it goes. So when I tapered to 7mg I thought it would be the same but I was in pain for 3 weeks - why I left it that long I don't know.

I went back on 8mg on Sunday 29th April but I still have pain in my groin, buttocks, tops of legs and especially bad in neck going into upper back and shoulders. It's not as bad as on the 7mg as I'm able to get out of bed more easily. But the neck pain is horrendous.

My question is do I go to 9mg and if so for how long - I know everyone is different but should I wait til the pain has gone. Then do I start at that dose and gradually taper down again?

[SheffieldJane]

If that happened to me I would go up, maybe to 10 mgs then if it settled back to 8. Then when I was sure everything was calm I would try 0.5 reductions using a slow taper and stopping at the first sign of trouble. I hope you don’t have to go higher than 10 mgs but it does sound like a proper flare. I am sorry, I’m at the same level and I would be gutted. It’s tough around 7 mgs.

[Footfairy-1 in reply to SheffieldJane]

Thanks SheffieldJane.

It is upsetting, but I can't stand the pain any longer. 😥 I can't even wear a handbag - I've tried it all ways and with lightweight bags but still too painful.

Maybe I should go to 10mg tomorrow morning and then go forward as you say.

I'm going wedding dress shopping on Saturday with my daughter. Her weddings in October. Only a few shops. So hope I've improved by then.

[Hidden in reply to Footfairy-1]

If you are having that much pain you definitely need to go up. When that happened to me I took an extra 5mg once I decided that action was required then the next day I went back to the pre-taper dose. I haven't found that it rollercoaster me as it's once extra bit of pred to quash inflammation. I am so relieved from pain that the extra is worth it and I am in charge of tapering ....rheumy may regret saying that 😁.

[SheffieldJane in reply to Footfairy-1]

All the more reason to be at your best! Happy days are coming. I really haven’t had the handbag thing since the beginning. I stopped taking one and put some little odds and ends in my husband’s pocket. The Queen has a point never carrying money, saves a fortune!

Good luck! Take it slowly. Weddings are stressful to plan for, as well as joyous. I got snarled at a lot ( ingrates).

[Footfairy-1 in reply to SheffieldJane]

My daughter likes to do all the arrangements so I let her! It's her wedding and we have very similar tastes so I'm sure it'll all be good. Think I might need a bit extra pred just before though. 👰

[Debbiecoops in reply to Footfairy-1]

I've started using a bum bag ( remember those) you can get some lovely colourful ones online 😁

[Footfairy-1 in reply to Debbiecoops]

Haha. Yes bump bags. I remember them. I'll have a look for one. Thanks 👜

[Rugger]

I know we're all different, but when I've flared - twice - I've needed several weeks at a higher dose to clear the inflammation. If you've been in pain for 3 weeks, you could try 3 weeks at the higher dose - just an arbitrary idea? I went from 4mg to 10mg last year and stayed there for a few weeks before reducing to 9, then 8 and then 0.5mg / month. At Easter I flared again when I'd reached 5.5mg, so I'm back up to 8mg for the last month and beginning to feel the benefit. If the disease is still active, a day or two probably won't be long enough to relieve your "horrendous" pain. At these low doses, when you're ready, maybe taper in 0.5mg steps using DSNS - anything to smoothe the drops.

This will take as long as it takes - "patience" is the key word!

[Footfairy-1 in reply to Rugger]

Hi Rugger

Thanks for replying.

Pain has lessened this morning and I've upped my dose to 10mg but this won't kick in til early evening as I'm on the coated tablets. I'll see how it goes. ☺

[PMRpro Ambassador]

Try at least 10mg for a few days - you can drop back to 8mg without tapering. If you need more - the same applies.

Rugger has said the rest! If I flare I need a few weeks to settle - all the more reason not to let one happen!

But then wait a couple of months before rocking the boat again - by which time you should be thinking "I'll just wait..." Don't do silly things while preparing for a wedding!

[Footfairy-1]

Thank you all for your advice.

I suppose I was just hoping that someone had found something miraculous, just today, so that we could all come off the Pred without problems or had found a cure for this terrible condition. As that doesn't seem to have happened (not yet - there's still a bit of today left) I'll take the advice given and let you know how it goes. 🌷

[Hidden in reply to Footfairy-1]

We all wake up with that hope. Hope you feel better today.

[Nerak12]

Hi Footfairy. Hope you don’t mind me crashing in on your thread. I’m new to the forum and a relative newby to PMR - diagnosed Nov 17. Same thing has just happened to me. Got to 8 mgs following the traditional 1mg a month taper plan, but took it much gentler going from 10 to 9 to 8 in .5 mg increments. However should have listened more closely to body as even at 9 not doing so well. Had a flare after few days at 8 so went back to 10 on Monday of this week and felt better Monday pm and Tuesday. Unfortunately, have had to spend last 2 days at stable with my horse who has had bad colic, so used all my “spoons” (see spoon theory) and more. Feel like I’ve done a couple of rounds with Mike Tyson this morning, so going to take it very easy today and stay on 10 rest of week. Going on holiday Sunday so not taking any risks.

This forum has been a life saver over the last week. I felt quite despairing and anxious after failing to drop to 8, but feel much more positive now. It’s a marathon, not a sprint. My GP has gone on mat leave and trying to get an appointment with another is more trouble than it’s worth. All the advice on the forum from the PMR experts about listening to your body and the fact that although the steroids make your symptoms better, you still have an underlying disease which needs looking after is invaluable. Spoon theory is a great analogy and really helped me and my partner understand what it’s like living with PMR. He had the same issues after cardiac surgery.

Hope you feel better soon and the wedding is a lovely day. Small piece of advice - if I may be so bold, take the shopping easy with lots of sit downs and drink breaks. 2 short trips better than 1 long one, but probably teaching grandma to suck eggs 😜.

[Rugger in reply to Nerak12]

Welcome Nerak12,

It seems that you've learnt as much in a week on this forum as I have in 2 years! It's an amazing place!

Hoping your horse is improving and you have a lovely holiday.

[Nerak12 in reply to Rugger]

Hi Rugger & thanks. Horse is brighter this morning I’m told and has drunk some water & eating hay - good signs + the other end is working too - even better! Fingers crossed now.

I’ve worked with several patient groups in a former life and PMRGCAUK seems to be a really good one with some very sensible and knowledgeable people providing sound advice and support. Totally invaluable! I hesitated to reveal myself on the forum (I’m not a social media person), but am glad of a space to share with fellow marathoners.

Hope your journey becomes easier now you are benefitting from the forum too. Good luck 👍🏼

[Footfairy-1 in reply to Nerak12]

Welcome Nerak12

Thank you for all the good advice and for sharing your journey so far.

I have been very cautious with my spoons and will continue this as it was working.

Luckily we are only visiting 3 shops with a break in between each, so hopefully I'll be ok. If I nod off they'll just have to wake me up when they're ready to go. Luckily too, I'm not driving so I can even rest in the car. As you can probably tell I'm doing a lot of resting.

I wish you a very happy holiday 🏊

[Nerak12 in reply to Footfairy-1]

Sounds like you’ve got it nailed! Good luck. I hope you find a fabulous outfit. I can’t wait for some warmth and sun 😀

[Footfairy-1 in reply to Nerak12]

We're just looking for the wedding dress. Have to shop for my outfit nearer to October.

[Telian]

Hi Footfairy-1

I've recently had similiar problems in terms of the ongoing neck shoulder and upper back problems. Adjusting pred did nothing so my rheumy carried out an ultra sound as he felt the pains should be lessening by now if it were PMR (have GCA also). The scan showed OA in the shoulders and would cause the ongoing pains - not good news as the OA will remain! Have you had your bloods taken recently, mine showed in normal range so for me OA is the reason for my excruciating pains.

Hope you get some relief soon.

[Footfairy-1 in reply to Telian]

Thanks for the reply Telian.

I do get relief from the Pred so hopefully it's not OA.

So sorry you had that bad news. Is there something you can take/do that would ease the pain? I do hope so. 🌼

[Telian]

I too hope you don't have OA and I'm pleased the Pred is working for you.

I've been given an exercise sheet for the shoulders and neck and hopefully that will keep me supple. Having said that I am quite supple anyway due to having to do exercises following breast surgery x 2 so don't know how much more these will help - it's just par for the course now as I do have OA in my hands wrists elbows and shoulders anyway - had lots of surgeries since 2002, but it seems to be creeping further up now. I take pain killers when it's bad and use heat pads. I'll survive, my grandparents were riddled with RA and lived until 89 still doing for themselves, hope I do too!

It's the restrictions that come with it, I've always been active and still am as much as possible, but really have to restrict what I do now - I love gardening so limit that to light work and employ a gardener. I'm making the necessary adjustments all round to enable me to keep some activity as I don't want to give in totally.

All the best to you and how exciting your daughter's wedding to look forward too, hope all goes well.

[Footfairy-1 in reply to Telian]

Wow. You have been and are going through a lot. I hope things ease for you.

My friend has RA (I realise it's different from OA) and injets herself every month with medication (don't know what it's called) and she's a new woman!

I love gardening too but have to "do and sit,do and sit". But at least I can still enjoyou want I can do. I'll be sitting in the greenhouse later potting on plug plants.

[Telian in reply to Footfairy-1]

Sorry to hear about your friend, but pleased her injections are working.

That sounds lovely Footfairy-1- there's nothing like pottering in the greenhouse, at least you'll be warm in there!

[Occhealth]

I got as far as you November last year i went straight back up to 10mgs and stayed on that until Feb I am tapering again and this time have reached 7mgs 4 days now with no pain.