Trying to taper dose

[Kazm04]

Morning everyone. Realisation of how awful this illness is , I was trying my best to taper by one mg over last few days and yesterday it was like the beginning all over again so took my usual 8mg this morning . I'm really struggling with my mental health and my dad has recently passed away so just not great at mo. Please tell me it will get better .

[Koalajane]

sorry to hear this about your dad.

If you are on the correct dose of steroids you should not be in so much pain.

Yes it will get better. I think you need a chat with your doctor.

[DorsetLady PMRGCAuk volunteer]

Sorry to hear about your dad, my condolences.

Would say the stress caused by that and the fact you are at the level when your adrenals need to think about working again comes into play

Some links which may help - one about adrenals ,one about dealing with a flare and another a slow tapering regime - all which may help - but you may also need some help from GP and/or counsellor to help with the bereavement process and your general mental health -

would also suggest once you have your flare under control you only try and reduce by 0.5mg a time - get a pillcutter for tablets -

Adrenals-

healthunlocked.com/pmrgcauk...

Flare-

healthunlocked.com/pmrgcauk...

Slow taper -

healthunlocked.com/pmrgcauk...

[Kazm04 in reply to DorsetLady]

Thank you for the links . Just read them very informative and useful thank you again .

[PMRpro Ambassador]

It will get better - it really will. But it won't be overnight and you need the dose you need to manage the symptoms. Sorry to hear about your dad but if you are struggling with bereavement it may also mean you need a bit more pred as your adrenal function becomes a factor at this level.

If you are struggling with mental health too, do speak to your doctor sooner rather than later. Are you feeling better on the 8mg? You may need a few days at a higher dose to help with the flare before going back to 8mg.

[Kazm04 in reply to PMRpro]

Thank you for all your suggestions I am on waiting list for help with my mental health and bereavement support. I didn't realise how the adrenal glands work so it makes more sense now .

[SheffieldJane]

I am sorry you lost your dad, it does knock you for six, I know. I wouldn’t even try to taper at the moment. You did the right thing returning to 8 mgs. When you do resume, it should be very slow and tiny increments - or decrements is it? Of half a mg. Stopping like you did at the first sign of trouble. These diseases and their treatment can predispose us to anxiety and depression, on top of this you are grieving which can be complex. I have found talking therapies have got me over humps in the past and have given me strategies to cope in the future. Take care of yourself and stick with us. 🌷

[Kazm04 in reply to SheffieldJane]

Thank you im on waiting list for mental health support and I have learnt so much today about how this illness can affect you in so many ways.

[123-go]

My condolences, Kazm04. 💐

[Kendrew]

Hi Kazm04,

You've already received some excellent advice so I won't focus on your steroid management, but I will say that it does and will get better.

You're still fairly newly diagnosed and going through what most of us did in those first few months... disbelief, shock, alarm, fear, anxiety, and a total feeling of losing control and being overwhelmed with facts, information, choices and questions.

Stop!.... and take a deep breath. As ever....the fear of what might be to come is worse than what actually does come.

Obviously there will be some challenges along the way, but almost everything that the steroids or the condition will throw at you can be dealt with by some intervention or another.

I felt exactly like you are feeling at the beginning of my 'journey' but I decided to learn as much as I could about steroids and PMR so that I was better equipped to make choices and decisions that were right for me.

As time has gone by I've let go of the things I currently am unable to do but embraced all the things I can still do, plus some new hobbies and activities I've taken up since.

I had to take medical retirement because of 3 unsuccessful attempts to return to my teaching job, but what seemed like the end of my very 'reason for being' has become the very reason my health is improving and my PMR is more stable. One door closes so another can open.

(Read my bio)

Try when possible, not to focus on the negatives.... it's one day at a time and as soon as you're able to accept that for a little while anyway.....you'll be living with a new 'normal', you'll find things don't feel quite so stressful. You have to rethink your expectations and all this means a period of adjustment.

You'll get there, and the more you educate yourself, the less scary everything will feel. It just takes a little while to understand what's going on and then 'manage' it all effectively.

There's lots of reliable advice & support here so never feel there's ever any question you can't ask. There will always be someone who'll respond.

Wishing you well and hoping you feel a little more reassured now.

[Lclmlbls in reply to Kendrew]

Thank you so much for writing this. It really does give me, and I’m sure many others, hope. I am only a few weeks since diagnosis and have found so much information and support - it’s like a comfort blanket! Knowledge is power, they say, and there is an abundance of it here.

[MrsPractical in reply to Kendrew]

Thank you for writing this. It’s what we all need to know as we travel on this journey together. You have given me a new sense of can do as I am currently on a low dose and struggling a bit. Thank you again

[JAC1947]

I am going to start to taper down from 15 to 12.5 on Doc’s orders. Have good and bad days tho. Sorry to hear about your Dad, but stay strong, have lovely memories and take each day as it comes and the daffs are out.

[lkcreedon]

So sorry for your loss. I'm tapering right now from 6.5mg to 6mg. I'm very happy to be here at this point. I started on 15 mgs in May 2020 and have been up and down several times. In the last 6mths I have been using the DSNS tapering plan of 7 weeks. I realize it's slow but it's working for me. As they say slow and easy does it. I reduce by 0.5mgs at a time. You however must be suffering from quite a bit of stress with the loss of your Dad and everything else going on. I'd leave it to the experts here to advise on the way forward for you. If I have learned anything, it's to take it very slow and not reduce if ur under too much stress. This site is now part of my daily routine, I check the e-mails every day. I don't post too often but I do take the advice given.

Wishing you the best of luck and hoping things will work out for you.

Stay strong 🙂

[Missus835]

So sorry to hear about your Dad. Mine moved on in 1984 and I still miss him terribly. Could possibly the stress of this and also adrenals kicking in be causing your pain? Just the stress of the disease, and other daily stressors is enough. I truly hope your get it sorted. In the meantime, there's no shame in adding on a few mg. to alleviate the pain. Have a chat with the GP (if you're lucky enough to have one). Grief counselling may also help or just a talk with a dear friend. Hugs to you Kazm04.❤️

[Orange_2022]

When something else gets to you, having PMR just seems much worse than it is. A family bereavement is going to make that even more so - very sorry about your Dad.

I did really well on tapering down until about 8mg when I started to feel some of the aching and stiffness but nothing like it had been so I continued slowly to 7mg and then started to taper to 6mg. However, things felt so much worse again despite the slow taper plan, that I'm back to 7mg and have stayed there an extra 2 weeks... might try 6.5mg later this week. Despite what rheumatologists and doctors tell you about the standard 1mg a month taper, it doesn't seem to be the case for most of us! But the great thing is feeling SO much better even if it takes some steroids to get there.

Best wishes to you.

[PMRpro Ambassador in reply to Orange_2022]

Remember - you are NOT heading relentlessly to zero, you are looking for the lowest effective dose at any given time and that will reduce at differenting rates depending on the patient. I think 8mg is where you needed to slow down a bit You should never feel worse at the end of a taper step than you did at the start.

[Orange_2022 in reply to PMRpro]

Thank you.... maybe I do need to go up a bit although many days 7mg is enough to make me forget I've got any issues! I was wondering because of that...

[PMRpro Ambassador in reply to Orange_2022]

Have you tried keeping a diary relating activities, diet and how you feel? Often you do a bit more on a good day - and the result is a bad day next day or sometimes 2 days later.

[Orange_2022 in reply to PMRpro]

That's a good idea... I hadn't really thought about the delayed reaction to 'overdoing' things! I'll give that a go. Much appreciated!

[Lclmlbls in reply to PMRpro]

How true that is. I did only a 10 minutes Joe Wicks work out yesterday which resulted in me feeling exhausted and lightheaded causing me to need to lie down for 2 hours. Today my thighs feel tender. Wont be doing that again!

[PMRpro Ambassador in reply to Lclmlbls]

I know it sounds crackers - but start with the warm up, just 2-3 minutes. Have a day off to assess, if you feel OK next day at 1 or 2 mins to the time - assess next day. You have to start from the bottom of the ladder and the rest day is as important as the exercise day. If you can feel it next day, DON'T add any time until you can do it and feel OK next day. It sounds slow - not slow if it works.

[Lclmlbls in reply to PMRpro]

Thank you, I should have taken heed of your earlier warnings - but I thought 'I've got this' - but clearly I haven't!

[PMRpro Ambassador in reply to Lclmlbls]

Almost everyone does! Everyone wants to think they will be different ...

JW does the things for the relatively healthy - and you will probably be able to do it eventually but you will have to build up slowly, VERY slowly, over weeks, not jump in the deep end.

[Bluey-1 in reply to PMRpro]

Mmmm…this is what I need to do. Patience, patience. Thank you

[Bluey-1 in reply to Bluey-1]

…with my daily walks. I think I’m pacing well then get fed up if there’s a dip. It’s the rest days that are missing which my body is then telling me that I need!

[PMRpro Ambassador in reply to Bluey-1]

An essential in living with PMR ...

[Bluey-1 in reply to PMRpro]

and GCA

[DorsetLady PMRGCAuk volunteer in reply to Lclmlbls]

hmm... JW doesn't have PMR... 😏.. need to find something a bit more akin to what you CAN do...plenty of other videos out there..

[Lclmlbls in reply to DorsetLady]

You're right he doesn't - but it all seemed so low level and I was probably trying too hard!

[DorsetLady PMRGCAuk volunteer in reply to Lclmlbls]

Yes to all your comments..😏

[Mewy]

Sorry for the loss of your dad. I just wanted to share that I reduced from 8mg to 7mg this past week. I have been very fatigued and depressed since then. No muscle pain. I am wondering if this is because of the PMR or part of the winter blues.

So I too hoping it will get better. You are not alone.

[PMRpro Ambassador in reply to Mewy]

Alterations in mood are common in adrenal insufficiency which may become a factor as you reduce the pred dose until your body catches up

[Mewy in reply to PMRpro]

Thank you. There is so much to understand. Your reply eases my mind. I am so grateful for your efforts in this site.

[PMRpro Ambassador in reply to Mewy]

As we keep saying - it's why we're here

[HeronNS]

I don't think it was mentioned in this thread that once heading below 10 mg, and especially from 8 or 9 mg, many of us find it much easier to taper by 1/2 mg at a time. Using one of the slow taper methods is also easier on the body than dropping overnight from one dose to the next.

[Singr]

so sorry to hear all this. Hope it gets better for you.