1mg and exhausted still...

[kezzybabes]

After 2 years on pred I am finally down to 1mg. However I am very tired and lacking in energy and have stiff joints. Is this normal before heading to zero? I have just taken early retirement but recently my father died and there has been family friction. I am reluctant to head to zero feeling like this but not sure if fatigue increases the nearer you get to 0. And once you are at zero do you feel back to normal soon after? I seem to remember reading ages ago here that it takes a year?

[Zampalion]

Best wishes to on your reduction and being able to get to 1mgs after 2 years took me over 5 years to get to 3mgs have been at zero for 3 months I do get slight shoulder stiffness but maybe due to tunnel syndrome , you are one of the fortunate People that can get over pmr in two years best wishes.

[kezzybabes in reply to Zampalion]

Yes maybe I am being too optimistic!

[HeronNS]

You have more than one issue going on here, don't you? If I were you I'd hold off on any further tapering for a while. Wait for the fatigue to improve and also see if the stiff joints also improve. Stress is the other factor of course, and for that reason alone it would be a good idea to delay attempting zero pred. Make sure your body is stable at 1 first. I'm speaking from experience, actually. Last year I felt really well, got to 1.5 mg and wondered if I was finally in remission. But several attempts to go to 1 mg caused a (relatively minor) flare, and I'm only just now getting back to 2 mg, not sure even yet if that's enough, although last year I was fine. Had a slightly stressful summer last year, and this new taper to a low dose seems to be somewhat confused by the fact that I also have osteoarthritis and for some reason it seems more active these days. Really at these low doses we shouldn't be concerned at all about side effects. In fact my doctor encourages her patients to keep a supply of 1 mg on hand even after they've tapered off in case they need the occasional dose from time to time as the body adapts to not getting a daily dose of additional cortisol.

Is it only now that your fatigue is getting bad? I'm beginning to have a bit more energy but have struggled with fatigue really since achieving 7 mg way back in 2015! In your case you might have been a bit more active recently and dealing with a stressful family situation isn't going to help.

And retirement itself is stressful - such a change in one's life!

[kezzybabes in reply to HeronNS]

That’s interesting to hang on to the 1mg tabs even at zero. I was hoping to be off pred by summer but think this may be wishful thinking. Ok I shall keep on at 1mg till I feel stabilised and things calm down in my life even if it is for a few months. Thanks heron. By the way I am loving retirement!!!

[HeronNS]

I'm glad you are loving retirement, but if you look at a list of life events that cause stress even the happiest do - getting married, retiring, moving to your dream house.... It's the life change, so it does add to your total load of stress and that's important to know because our adrenal function has been compromised by longterm pred. On the other hand because it is a pleasant change for you I'd think the stress load from retirement would be minimal. It's #10 on this particular list of most stressful life events:

paindoctor.com/top-10-stres...

[PMRpro Ambassador]

If you also have stiff joints - are you sure you are ready for 2mg? When did you last feel good? It really isn't unusual for people to stay at such low doses for a long time and the aim of many doctors is to get their patients to 5mg and below - then they stop panicking as much. There isn't much to add to Heron's posts.

Remember - if you push it you may end up flaring and having to go higher. And as Heron has found, often the next time round it is harder!

[DorsetLady PMRGCAuk volunteer]

Hi,

Couple of points -

Only 2 years, so PMR may still be quite active (despite what some doctors think - that timescale is minimum!)

You’ve had a lot of upset recently which has increased stress levels - not good for PMR!

You are at very low dose, so no point in reducing if you still have symptoms, it’s not a race to get to zero, if necessary go back up to 2mg, get things under control and then try tapering again,

Try reducing by 0.5mg - easier on body,

It can take up to a year for your body to return to normal after you stop taking Pred.

Finally, yes I think you are being over optimistic and pushing yourself to reduce when your PMR is not ready to let you.

[kezzybabes in reply to DorsetLady]

Thank you - will take it very slowly.

[SheffieldJane]

I am sorry that you have lost your father. This is a huge blow and may well be making you want to sleep. Family friction at a time like this is awful. I wouldn’t go lower, I might even take a couple extra to get me through all that must be done. Sending you a hug. 🌸

[kezzybabes in reply to SheffieldJane]

Yes sleeping a lot. Thank goodness I have time to sleep on now!

[sondya]

Sorry to hear that your dad passed away. Not an easy time.

I am on 1mg (GCA) and I thought at month's end that was it. Felt wonderful! But as I hadn't been officially given the all clear from the rheumatologist, my GP said I should continue on 1mg. Damn. Not that it made any difference. Such a low dose. I've got morning stiffness but had that pre-pred. It's winter and par for the course. Not worried as I know it's not a flare.

[Dream21]

GCA PMR....I think tapering the last 10mg was the hardest. I was extremely tired during the taper and for about a month afterward. Personally, it was not a drastic change to go from 1mg to zero. Your adrenal gland should be making Cortisol by now. It is just a very exhausting time. Be gentle with yourself and feel proud you are almost there. My doctor said to give it at least another month and sure enough I gradually got my energy back.

[Telian]

Having read all the replies so far don't think there's much to add so another thumbs up for you to take things a little slower I would say. Commiserations for the loss of your father.

[kezzybabes]

Thanks folks. Always great advice here. The journey still continues!

[JD4pmr]

Hi kezzybabes,

this sounded familiar. I was at about the same place a year ago - managed to get down to 1mg and was ok for a while, so when the fatigue and pain started and continued I put it down to stress/moving/low vit D and other factors, during the previous autumn etc IT DIDN'T ACTUALLY OCCUR TO ME [!] that I was in the middle of a full blown flare. [Really after 4 years how could I have been so blind?] I had to go back up to 15mg which caused the immediate euphoric trip to normality and relief ... that was almost a year ago and I am now down to 6.5 and treading slowly and gingerly to wherever I need to go. I had such determination to stick at 1mg last year come what may, but now if I manage over the next months to get below 5mg I'll stay with whatever works. Stress is a real factor and I'm so sorry to hear of what you have been going through, I wish you well and hope a little increase will get you back on track.

[kezzybabes]

Oh hell that sounds awful☹️ I’m going to have to go up to 2mg for a while then. Just when I thought I was near the end ......

[PMRpro Ambassador in reply to kezzybabes]

You are at the end relatively speaking - you are at such a low dose it isn't causing long term side effects but it is enough to manage the symptoms. That's what matters - not that the dose is zero...

[ConventCassie in reply to PMRpro]

Why is it “harder” the 2nd time round? I would think the opposite. Of course some of us didn’t know DSNS.

[PMRpro Ambassador in reply to ConventCassie]

Because for many people allowing a flare to really get hold often makes it harder to get under control. No-one knows why but it has been noticed and mentioned even by doctors.

[Sandy1947]

So sorry about the loss of your father. Stress related to family difficulties is sure to make you tired. As others have said, stick with Pred dose that makes you feel good. This is not a time to win the race!

[ConventCassie]

I’m sorry you’re facing these challenges at such a vulernable time. Loosing a parent is difficult and sad. But you are strong because you have made it this far!

I read somewhere that fat intake in the diet helps fatigue. (I'll let you know, because I’m depending on that to head your way.) All best.

[Sandradsn]

I got down to 1mg at Christmas but was flaring ,gave up work,saw a different GP,went on 5 mg and currently on 4. I have no pain but jelly legs and woolly head🙄and fatigued😴

[Katheryne in reply to Sandradsn]

Your experience sounds so familiar. After a flare and up to 10, now down to 6, but jelly legs and fatigue. I sometimes think I've always been woolly headed. No pain though.

[Sandradsn in reply to Katheryne]

It's a strange feeling like flu like🙄I do try and go for a walk everyday ,feel better for it

[Katheryne in reply to Sandradsn]

Until the flare I was going to Clinical Pilates once a week, then infection, flare, up and down pred and all the time those jelly legs at 11am on the dot. I have an appointment with an endocrinologist in early July and hope she can shed some light on all of it. Does anyone else have night sweats? Drenching-change the pj's- bedding night-sweats? My GP looked blank, another one asked me what my wishes would be if I had cancer and my rheumy told me I must be off pred by August. Go figure.

[Purplecrow]

Hi K. Sorry to hear of your loss. I was at a similar level of pred when my son died last Sept. my PMR decided the stress of all the life changes needed an increase in pred. After enduring several months of disbelief, I finally tried a 10 mg dose of pred...and the pain went away. I reduced quickly to 7 mg, where I remain for the time being.

Lesson to myself...my PMR does not tolerate stress, good bad or otherwise... flares happen when the stress + life continue. Extra prednisone at these lower levels is life-quality saving.

I suggest an increase of 5 mg pred for a week, see if it helps...if not, return to your lower dose...no harm.

Kind regards, Jerri

Diagnosed PMR 2013, currently 6-7 mg pred.

[kezzybabes in reply to Purplecrow]

Thank you Jerri- so sorry to hear about your son. To lose a child must be the hardest thing in the world to endure. Sending love

[Purplecrow in reply to kezzybabes]

You are right😢, my heart is broken... thank you for your kind words.

💜💜💜 to you. j

[Sandradsn in reply to Purplecrow]

So sorry😢Can't imagine how tough it's been for you purplecrow,sending you a big hug x

[Purplecrow in reply to Sandradsn]

🙏🏽

[Sandy1947 in reply to Purplecrow]

My heartbreaks for you. So sorry for your loss.

[Purplecrow in reply to Sandy1947]

🙏🏽

[navejasjoe]

I commend you for being down to 1mg after only 2 years. Were you feeling much better at 2mg? My wife has also been on Pred 2 years, and she has only been able to taper from 15 to 11.5. When she went down to 11.0 recently, she experienced all the symptoms she had at the time of her diagnosis.

Joe

[kezzybabes in reply to navejasjoe]

Yes I felt better at 2mg. I’m just racing to zero but realise I can’t! So back up we go!!!

[karools16]

So sorry to hear of your Dad's passing. xx

[kezzybabes in reply to karools16]

Thanks Karools. Hard enough dealing with dad’s death and family conflict but now my 90 year old mother is going a bit crazy and is looking for him in the house as well as trying to find her parents who both died 40 years ago. It’s Groundhog Day every day at the moment trying to make her understand they are all dead.

[Lee1945]

So sorry to hear of the loss of your father. This may well be the cause of the increased tiredness!! Grief is exhausting in itself, let alone all the meds.

Try to find time to have a short nap as and when you can.