Sharing my experiences tapering from 6mg to 4mg..

[Hindags]

Tapering from 6 to 5 and now to 4 has been "interesting" to say the least. I worry less these days about a flare. That might or might not be rational. I haven't had any stiffness to speak of since starting to take delayed release Pred at nighttime. These days I am more worried about energy, memory, and emotions. I'm interested in what other people have experienced at these levels.

I know we all are different. I have had some paradoxical reactions to Pred in that I slept better when I started on Pred (at 20 mgs.). I also felt I had better recall for some things than prior to starting Pred. Now here I am at lower doses sleeping less well and having more brain fog.

At 6 mg. I was still getting my late afternoon weak wobblies that wore off in the evenings. My body still felt pretty loosely knit with a fair amount of random aches and pains. Some felt a bit like PMR, but mostly I began to get a return of some of my arthritic aches. My right shoulder, hardest hit by PMR seems to be permanently susceptible to aches and pains if I use my right arm the "wrong" way.

At 5, the weak wobblies stopped but I was an emotional basket case. PMRpro suggested I was probably having some adrenal and HPA issues. I stayed at 5 for two months and finally stabilized. I felt like myself. My body also began to feel more normal. But I gained back 4 pounds of the 25 pounds I lost. I think this had to do with re-addicting myself to carbs when I had to go on a low fiber diet due to the dysentery I got in Mexico. I'm struggling more with maintaining weight in the last 3 months than at the higher doses since I have more carb craving. I also noted at this dosage that I began staying up later at night, so getting less sleep on the average.

As I started the taper from 5 to 4, I hit a bit of what I hope is temporary brain fog and not the onset of dementia. Quite suddenly I am less able to multitask simple strings of tasks. Senior moments are coming up like, where I put something down, or what my intention was for walking into a particular room, or going into the garage and coming back with only one of the two items I intended to get because I got myself involved with something else. It feels more like a distractibility issue than a short term memory issue, though I am checking my calendar more. I am not having any problems at work where I need to concentrate and remember things I'm told. But around the house I'm feeling like the proverbial absentminded professor.

Are these "symptoms" likely to go away? How long should I plan to stay at 4 to see if they abate? Should I wait to see if they abate before starting a taper to 3?

Just wondering what others have experienced at these doses.

[SheffieldJane]

That’s an interesting analysis Hindhags. I make all sorts of compensations for myself because I know that I won’t remember to do things. I can’t discuss books, plays, music and films because I cannot retain the names of Directors, Actors and musicians. Fortunately my OH of 32 years seems to know what I am talking about. I cared for my mum during the last 7 years of her life, she had “ frontal lobe” Dementia. I feel the cold shaft of fear that this is my destiny, sometimes. I am always reading and I take a real interest in current affairs. My iPad rings with reminders. I really hope that we come back from this symptom.

[Hindags in reply to SheffieldJane]

Was there a particular dose that you associate with this?

Names are hard for me too, but never a strong point. I fell hard and hit my head about 8 years ago. Since then names have gotten harder. I haven’t sensed any worsening with PMR or Pred.

[SheffieldJane in reply to Hindags]

I was diagnosed in March 2016. I would say that this symptom began during the second year of PMR and is quite noticeable now at 6 mgs, due I think to sheer fatigue and Adrenal gland struggles.

[Hindags in reply to SheffieldJane]

Have you had any tests of adrenal function? My Rheumy says they do not test for adrenal function at my health plan.

My father died of Alzheimer’s at age 74. My Mom developed it at 94 and lived to 100. I’m 77 now and it is always a fear lurking in the background.

[SheffieldJane in reply to Hindags]

Yes, I had the Synacthen Test last week and my Adrenal glands are under-performing.

[Hindags in reply to SheffieldJane]

I thought the synthactin test measured whether the adrenals can be stimulated into production but not whether they were functioning properly in a regulated manner in response to stressors.

Am I mistaken?

Have your physicians offered any advice or treatment?

[SheffieldJane in reply to Hindags]

I was given figures and told what a normal response should be, my numbers fell short. I will have to be proactive with my GP to discuss the implications. Currently I am continuing with a dsns taper from 6 to 5 mgs. I have a chest infection and as we only get 10 minute GP appointments in the U.K. I am discussing that and will see the best doctor in the practice at the end of October about Synacthen Test results. I am not aware of anything that will help the Adrenal glands along.

[PMRpro Ambassador in reply to Hindags]

That's right - it is like your car: the tank may be full but if the battery is flat, or the spark plugs dodgy or a fuel pipe blocked it will won't start. The production of cortisol needs not only a functioning factory, all the deliveries from the hypothalamus and pituitary must be right too.

[Hindags in reply to PMRpro]

Wonderful analogy. Thank you. Now I must start talking to my pituitary and hypothalamus as well as my adrenal glands. I have been remiss.

[DorsetLady PMRGCAuk volunteer]

Hi,

Forgetting things is quite normal as you get older anyway, and if you know you are forgetting things ...then it’s not dementia! But it one thing we fear I guess.

Nudging the old adrenals into working properly again does cause a problem I think in lots of aspects, but as we’re always saying - that just a matter of time, unfortunately.

As you are at such a low dose anyway, it really is the slower the better from now on ....just give your body all the time and space it needs.

If you haven’t seen this, or even if you have, it might help to remind you of the need to take things slowly-

healthunlocked.com/pmrgcauk...

[Constance13 in reply to DorsetLady]

Like that - “then it’s not dementia”- will keep that in mind. It’s obvious that is the worst thing that could happen in old age and we are all afraid of it one way or another.

[Valnvaughan in reply to Constance13]

My step mother in law lived to 92. She always said she wanted to be an " old mad woman". Certainly was into her late 70s then got odd. Cut herself off from all family and friends. Social services moved her to a care home and she told them not to tell any of us where she was. She was cremated without ceremony and it was a month before we knew of her demise, when a package came by post of items she had instructed should come to my husband, like his dad's flying records from WW2 and his 'wings' as a Spitfire pilot.

I just want to be brave enough to do wild things and not care!

Valerie

[Constance13 in reply to Valnvaughan]

Wow Valerie - what a sad story! I might be old (79), I couldn’t be a mad woman - was always on the serious side, good sense of humour though!😂 Now want to “grow” old gracefully. With a little less pain, please.😏

💐💐

[PMRpro Ambassador]

I'd suspect it is still adrenal-based - every time you change the pred dose the whole swing set up wobbles again. Can you slow the taper down even further? Repeat each step a few times not just once. And stick for a while between each step as you have done with 5mg.

[Hindags in reply to PMRpro]

Thank you for your reply. I will have to revise my idea of how this tapering affects the system. If the whole swing set setup wobbles again with each taper, then that changes things. I had, simplistically , thought that there were thresholds of tapering that depending on individual circumstances and constitution would set off somewhat characteristic sets of symptoms and physiological adjustments. I thought that perhaps what I felt and 7 might happen to others at 9 or at 5 for instance, but that there might be some commonality of symptoms nonetheless.

What I didn't figure was that at this point each taper will bring a readjustment of parts and that I will be re-experiencing many of the same symptoms at each level with some new ones to boot.

Over the weekend I began to feel "emotional" in a way that felt familiar to what I felt last June going from 6 to 5. Too sensitive to the news, feeling indecisive about some big decisions again, feeling overwhelmed by what the decisions would require of me in the near future. etc. ( It didn't help that I was coming down with some kind of intestinal bug which added a sense of weariness and depletion and which thankfully has passed.

OK. Now that I know the swing set-up will require readjustment every step of the way, I'm forewarned. Bring out the lug nuts and the wrenches!!

Luckily I suspect my Rheumy will let me take the lead.

One other question, from another post about when to take Pred. As you know I'm taking DR Pred. so in effect a 3-4am dose. Would it make sense to switch to morning dosing as these dose levels? Any reason to suspect that it would make it easier on the swing set to adjust?

[PMRpro Ambassador in reply to Hindags]

Some doctors might say so - I'm not convinced. Just SLOWLY.

It is a very complex set-up with several organs/glands and hormones, all of which have to be right for everything to work properly. Shove one sideways - and the others have to accommodate it. That's why tiny changes and lots of time to settle down are less disturbing.

[Hindags in reply to PMRpro]

Thank you again.

[Hindags in reply to PMRpro]

Had a phone call appt with my rheumy. She wants me to hang at 4mg for a while. No rush. Slower is better. We check in again in 2 weeks to decide what plan to follow next.

I asked her about morning dosing. She said she considers Rayos, DR Pred, to be a form of morning dosing. No change needed per her perspective.

[DorsetLady PMRGCAuk volunteer]

Hi,

Further to my comment yesterday about forgetful being normal...thought you might like this episode from today -

Boiled the kettle to make a cup of peppermint tea (last one in the glass jar, and the bag is in its own sachet)*** note!

Already had a cup out ready, so while I’m waiting for kettle got another full packet of tea out of cupboard. So far, so good.

Took teabag out of sachet, and promptly put it in the glass jar rather than the cup, just about to pour in boiling water when I realised......🙀😲.....oh my, I’ve finally lost it!

Thought you might appreciate. And I’ve got no excuse 😏

***why does everything have to be double or triple wrapped nowadays?

[PMRpro Ambassador in reply to DorsetLady]

And require those special instruments to get into them?

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

My theory is the nicer they are, like chocolate 🍫etc, the more difficult they are to get into!

Some less determined folk might give up, but they haven’t reckoned on us, shall we say resourceful people!

Now where’s that corkscrew 🍾 - at least they haven’t b#££&£Ed about with that!

[Hindags in reply to DorsetLady]

I keep scissors scattered around the kitchen and bathroom to deal with those packages. Box cutters and razor blades too. Also Goo Gone to remove the adhesive labels that leave a residue of sticky scum.

What are they thinking? My pet peeve is the plastic encased object that requires gardening shears to get through.

[Hidden in reply to Hindags]

And then we get blamed for the sea of plastic!

[Bamber99 in reply to DorsetLady]

Hi I’ve boiled kettle and poured water into the coffee jar instead of The cafetière. This was many years ago, pre Pred pre ‘older age’ . Sometimes our minds are just elsewhere when doing every day things. Hope this makes you feel a bit better x

[DorsetLady PMRGCAuk volunteer in reply to Bamber99]

Actually it made me laugh out loud 😂! Well, what else can you do?

[Pym1]

This won’t help much. But after diagnosis a year ago I’m struggling between 6 and 5 with almost ALL the same symptoms.

I took up yoga a while back and it definitely helps.

Good luck.

Pym 👍🏼

G

[Hindags in reply to Pym1]

Thank you it does help.

[Celebrant]

well, you just made me feel better.