Aunty Bees Advent Calender . Dec 8. To taper or not to Taper ?Please, Share you views on our most important choice this Christmas.

[Blearyeyed]

❇❇❇❇❇❇❇❇❇❇❇❇❇❇❇❇❇ IMPORTANT DISCLAIMER❇❇❇❇❇❇❇❇❇❇❇❇❇❇❇

Not just a disclaimer but my genuine recommendation. Always check that anything you read or consider when making Medical Choices is appropriate for your individual Health and Medicinal Need.

No medication should be stopped without seeking Professional Advice.

New Patients should not begin a Taper of any medication without approval and discussion with your Health Provider.

If you have severe side effects , allergy or intolerance responses , or increasing symptoms despite medication seek Medical Help immediately.

If you have difficulties with Symptoms or Side Effects while on a Drug Reduction Plan approved by your Doctor you should seek their help and discuss a change in the Plan and inform them that you intend to return to the Previous Dose. No big changes to the way you take your Medications or Use Supplements should be done without informing your Care Provider.

Your Doctor or Specialist should prepare your Tapering Plan with you and will give guidelines of both how much they want you to reduce by and how often to do this. This is based on Standard Guidelines and your Individual Health Issues but usually involves no more than a 10% decrease of dose per reduction , unless it is Medically Necessary for you to reduce your dose quicker. Tapers can be weekly at the beginning of your Reduction Plan , and Monthly once you are on a Regular Tapering Plan , but often the choice of Method to Taper can be your decision.

If you wish to use one of the PMR/ GCA Tapering Plans recommended on our forum , and feel it differs from the Current Plan your Doctor has given you , print off a copy and discuss it with your Doctor . It is much better to have approval and support from your Doctor for your Health Choices .

Advice , is just advice , and each Patient needs to take responsibility for their own Choices and take into account their Individual Health Needs and Medications , making sure that advice given is suitable for their Personal Use before following any recommendations .

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To Taper or Not to Taper ? My choice is to decide working with my body .

After over twenty years on some form of Medication , both short courses and long term combinations , for various linked Diseases and Syndromes , I have done a lot of Tapering and seen a lot of Drug Changes.

I only began reading Health Forums about five years ago , and only started contributing a view online since joining this amazing supportive group on PMR/ GCA UK.

I got no help from my Doctor's or Specialists for all those years about Methods of Tapering and learnt what worked for Me for all types of Drugs and Supplements from Trial and Error. So , it was very reassuring to Me when I started using this site , to discover that I was following a Plan virtually the same as DSNS and those endorsed by the experienced and sensible regular advisors on the forum like PMRPRo , Dorset Lady , Mrs Nails and members like Jinasc .

I hope that these real Disease Experience Experts will help me by providing extra information in the replies below , to useful links and Tapering Advice that may help you as well as their own opinions , so that Stress Free Tapering could be a gift you give yourself this Christmas.

What I have learnt from them , and my own experience , is that you should only start a Taper when your body is able to cope with it. If you are struggling to Taper your dose , or have increased symptoms of any of your Chronic Health Issues , an infection , injury or are recovering from a surgery you should not start a new taper or continue a difficult taper until your Health issues are controlled.

There is also agreement that you if you are about to Travel , Go on Holiday , have a Big Family or Work Event or are involved in something which involves a lot of Physical or Mental Activity , or Stress , outside your Everyday Routine it is better not to start a New Taper during this time.

Stress is any Activity that affects your Body or Mind at a level it may not be used to.

Stress can be Negative Activity like Bad Health , Injury , Overwork, Moving House, or Grief.

But , Stress can also be Fun, Positive Activity like Holidays , Nights Out , Exercise Activities and Big Family Occasions.

Weddings , Birthdays , and especially Festivals like Christmas can fall into both Stress categories , and not just on the Day itself but during the weeks of preparation before and extra Parties after them.

So what does Aunty Bee do ?

Well she takes the best advice out there on PMR/ GCA uk , looks at her own Health Issues , and how well her symptoms were managed the Month before . She looks at how much her Activity is going to change in the weeks ahead before she starts any new Taper in her Drugs, especially the ' Biggies' like Steroids and Opioids , then decides on that Months Plan.

I never start a new Taper of two drugs or supplements in the same week , unless it is a Medical Necessity to do so ,and, Never start a new Taper in the first two weeks of taking a new drug . For example , if I got a UTI tomorrow and got a course of antibiotics I would not try a New Taper until a week after that antibiotic course had finished. I find too many chemical changes in the body at once slows down my success.

Over the years I have worked at starting my Steroid Taper at the beginning of the month . This is partly because my Personal Choice is not to be on a New Taper for the two weeks before and during Christmas . Luckily most of my families birthdays are at the end of the month so it means I am never on a new Taper for these things too.

I also choose that my December Tapers for all my drugs are half that I do at other times of year , because with my individual needs , I know a full 10 % Taper may not be successful while I'm doing a lot more activities which may cause more symptoms. For example , if I was due to reduce my Dose in December from 15 mg , I would personally choose to reduce to 14 or 13 mg rather than down to the usual 12.5mg that I might have chosen in any other month .

So when do I Taper ? I do not Taper any drugs or supplements between 12 the Dec and 4th Jan . Any new Taper of a Drug like Steroids or Opioids on my list happens before the 10 th.

This December Method allows Me to return to a previous dose if I struggle with symptoms on a Taper and get my Pain under control well before Christmas itself , or means I am well adjusted to my new dose well before I start a lot more Activities.

But this is what works for Me , it may not suit you and I hope the advice of others ( especially our more knowledgeable advisors ) will help you find a Method over Christmas that suits you too and that you can be 'New Taper Symptom Free' over the Holidays .

So my answer to the question To Taper Not to Taper over Christmas ? Choose the option that works for You . Don't Push on if it isn't working for you.

Take care and always follow advice with Care , prescription of hugs , Aunty Bee x

[Hidden]

I was looking for todays post and ended up having to go through the skeleton!

I think negotiating the taper is very important. Sometimes Dr's don't like you presenting something that feels like you are taking so much control. It can be their lack of knowledge or their ego. So despite hating typing these words and expending energy doing it.... You may need to massage their ego a bit. I found there was much more support of my own decisions on tapering when I flared badly on the initial reduction. Then I was able to provide evidence that the faster 1mg per month didn't suit me. So I asked if I could do 0.5mg, then a slow taper then by 6mg the rheumy just left me there for 12months saying I may not get below 5mg as most of his patients struggled. My gp doesn't get involved just prescribes according to rheumy feedback. I had to increase to 7mg during a very severe stomach issue which lasted months and will not consider tapering until mid January. 😊🤗

[Blearyeyed in reply to Hidden]

Oh! I wonder what was happening there!

I thought I felt something funny early , must have been you going through my skeleton , as if I don't have enough going on without a case of the Poopadoops!😋😂😂😂

I agree with you about having to broach discussing your findings with Care and politeness as many Doctors instantly become dismissive if a Patient dares to have an opinion on their treatment especially early on in your case.

They wrongly believe that treating Chronic Illness should be a Dictatorship not a Partnership.

It's such a great shame that more often than not we can't feel confident enough to just go in and discuss our recommended Tapering until we are forced to suffer a Quick Taper Flare and prove that for most of Us a speedy descent is not the key to Stressless Success.

My GP doesn't get involved , and often is quite an obstacle to me getting new medications on my prescription list that have been prescribed by my Specialists.

They at least admit they know nothing about changing my doses or medications , unfortunately , it takes months for Me to see someone that can make these decisions , which is probably why I had such a steep learning curve working out how to take care of Myself over the years.

I wish I found a forum like this one with those recommended Plans for my other conditions years ago I think many of my problems would have been easier to tackle if I had done.

[Hidden in reply to Blearyeyed]

Yes. My saving grace for manoeuvring my approach to getting other things sorted that normally I ignore think Dr won't do anything.

[Hidden in reply to Blearyeyed]

Ps. I don't know if it just got busy so there were loads of messages above it but I went down a bit. Couldn't find it..

[PMRpro Ambassador in reply to Hidden]

Isn't it interesting that your rheumy sees and admits what Matteson and co found and we all know - lots of people get stuck at a low dose. So why do so many try to force us off it?

[Hidden in reply to PMRpro]

Yes. I wasn't sure at first about him but actually he has been flexible. I have a pre-Xmas appt next week... So I hope it continues.

[Pixix]

Very very helpful info to a newbie, many thanks! Fits with my plan for Christmas and our January holiday. So far my doctor and I have been in complete accord as regards to treatment, which is great. I’m not good this week, overdone things, and assume that’s why the shoulder pains are back and I couldn’t lift my arms up yesterday evening! Rest day not apparent until Thursday... poorly car, dental appointment, hair cut etc etc first!

[Blearyeyed in reply to Pixix]

Glad you find it useful , as I say it works for Me but do check out the Taper Plans that our written by our Disease Experience Experts and other Tapering advice too when you get to your time to Taper.

If you look on the right side bar on this post you will see links to DLs Simple Taper in the Related Posts list and the Dead Slow and Nearly Stop Reduction Plan in Pinned Post.

Tapering Steroids is also in the Topics List. All important reads .

You can also save this post so you don't lose these quick steps to links by pressing the Save Post option when you use the Tab that says MORE under the post itself.

It's really important if you are already struggling with symptoms at the moment that you get Festive Pacing and feature rest in your Plan of things to do to prevent a full on Flare. The return of your PMR Pain Symptoms is your warning to Take Heed and make some adjustments. You don't need to wait until you get a Full Rest Day to take steps to get some Rest and Relaxation but just make adjustments to what you are planning to do to only do the one important job on your list each day and then make a conscious decision to rest apart from that. Don't be tempted to sneek the odd extra job in , give your body some TLC instead.

Take care x

[Pixix in reply to Blearyeyed]

You are so right! I’m busy trying to put all the baubles on the tree before our hairdresser arrives! My husband is reading the paper! The flu symptoms are back this morning, too! My own worst enemy!

[Blearyeyed in reply to Pixix]

I was rushing out to physio and didn't catch this until now.

If I'd seen it I would have told you to whip the paper from his hands , drop the baubles in his lap , point at the tree and tell him to , ' Crack On!'

You are in need of extra help and you do need to delegate out jobs , even if he's not used to being needed to help with them before.

Don't be your own worst enemy , look at that list of jobs and share out the load equally now.

After your hair is done , you need to be done today and take that rest.

[Pixix in reply to Blearyeyed]

No go, had a dentist appointment this afternoon! But had a chat and he’s doing all my tablet boxes for the next month tomorrow, and decorating the kitchen and hedge. If you saw a Photo, you’d understand. I am married to the real Santa Claus. We have bookings every year...he saw over 60 children at the local school in his grotto, individually, over a four hour period on Sunday. He was tired, too. It’s a very busy month for us and we already had the bookings before I was diagnosed. But tomorrow I am resting, I can’t get those symptoms back...he’s very helpful, I’m lucky. The tree is completed, too!

[Blearyeyed in reply to Pixix]

Wow!! You lucky Girl , you are the ' real' Mrs Claus , and your husband is definitely someone who can get away with the odd break behind a newspaper at Christmas.

But just liked the ' real ' Santa when his Christmas duties are done , rolls up his sleeves up and does the dishes Christmas Day for the Girl he still thinks is his Number 1 , I'm sure your Santa will too xx

Give Santa a big Hug from Aunty Bee and tell him his Santa soup will be waiting for him as usual when he pops in with the presents 😋😂😂😂

[Highlandtiger in reply to Pixix]

He needs to learn how to decorate the tree. It's really not that hard!!

I think a lot of us on here have been so used to doing everything, for everyone, and that's one thing we need to change.....

But I think others are so used to us doing everything that they probably just don't notice we need some help now. It goes against the grain to ask for any, but the time has come!

[Pixix in reply to Highlandtiger]

Yep. I don’t ask enough, he says! I’ve been ploughing through with fibromyalgia for so long, trying to keep our lives at the same pace, but it’s harder with both ‘algias’ and especially in winter with six months of ‘mood swing’ antibiotics and lung issues, osteoarthritis...oh and now the gorgeous Pred as well. You have to laugh don’t you? Thanks for great support today...floundering around a bit here...not enough sleep, either!

[Blearyeyed in reply to Pixix]

You sound just like me , a fragile house of cards of various Chronic illnesses, hiding the Pain for so long that for years they didn't understand just how bad things were.

When I gave up with GCA/ PMR and kindly but frankly told them the truth of how I feel and that I need more help my Family did begin to realise what was going on and Life with Chronic Pain ( and the Pain too!) has got far better than it does with a prescription drug.

[Pixix in reply to Blearyeyed]

You are so so so correct! Time for me to come clean. The fatigue has hit me far worse with poly than anything else I’ve struggled with. I’ve printed off the types of fatigue and the spoons theory but Santa hasn’t had time this past ten days to read them! After the car hopefully gets fixed and the supermarket delivery is here...Wednesday...we may have a couple of days without appointments etc etc

[Blearyeyed in reply to Pixix]

Yep ! GCA or PMR , the straw that breaks any strong girls with many Chronic Illnesses back!

Just try and get a half hour lie down and relax you body each day when you can x

[Pixix in reply to Blearyeyed]

I will try, I promise! Thanks!

[Blearyeyed in reply to Pixix]

Don't forget , there are many of Us here too that know what it is like to cope with having Fibro , RA , Osteo and other Chronic Illnesses at the same time as PMR or GCA too , and will know exactly how you feel when they rage up too , so do contact us anytime you need a pat on the back or a hug . We are here for you xx

[Mstiles]

Thank you auntie B so much for this detailed and helpful advice!❤️