Thanks to all you wonderful people for keeping me going for these past three years of PMR!
Early this year, I started feeling that maybe PMR was loosening its grip on me. For the first time ever, I was able to reduce from 10 to 9 to 8 to 7 to 6 to 5 mg. (I used the 26-day DSNS schedule.) I'm still on 5. Sometimes I feel stiffness in my hips but most of the time I don't.
During this time, I've been through a lot of stress--caretaking for my beloved dog who finally passed away at age 19 and then caretaking for my husband who had a hip replacement followed by lots of complications.
Despite all this, I was able to keep reducing with no flares at all.
I'm very happy about the tapering, but I can't stand the tiredness. I try to pace myself but I'm still completely wiped out by early afternoon. How long is this going to last?
Thanks to everyone.
Written by
judyb100
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You’ve done very well to get 5mg despite everything else going on, l’m sorry about your dog & hope your husband is improving.
You are now below the dose where your Adrenal Glands should be showing some signs of kicking in to help but they are prone to being lazy.
If your pain is generally under control, then perhaps a nap in the afternoon. I’m still at 12.5mg & l’ve just woken up after my nap.
The options ahead of you now are to consider staying where you are for an extra month & then reduce by 0.5mg as it will be a much bigger reduction percentage wise from now on & factor in a nap early afternoon, l recommend it 😴
Do you actually go to bed? I get severe anxiety when i resort to the bed. Really bad, i feel my life is going to end. I know sounds mad. I cant explain it.
I rarely take a nap anywhere other than on the bed, if it makes you anxious consider having a rest on the bed in the afternoon, take a book or listen to the radio & plan just to have a rest, then if you fall asleep all well n good, but if you don’t at least you’ve been relaxing & resting the muscles.
I can relate to that feeling. I think we are conditioned to keep going in our culture. I have trained myself to let go now. Practicing mindfulness whilst lying down resting your eyes can be helpful. It seems to help almost as much as proper sleep. Give yourself permission to rest your body and mind. You are ill you know. 🌷
I think I've spent this whole time trying to be "cured". I just couldn't accept it. In work muddling through miserable, thought I would be feeling better if I finished work, only to find this horrendous fatigue was going nowhere! You're right, I am going to accept I'm not well and consciously rest properly and not keep fighting it. I think the fatigue, for me, is the constant reminder I'm not better. I need to pick my battles, cos I'm not winning this one!! Hope you're doing ok!
It takes a long time Powerwalk to get where you are now, acceptance, it’s not giving up but realising exactly what you can & cant do.
I’m having a problem at the moment in so far as people just don’t understand why l can only do certain things, why l get tired & how a long car journey knocks it out of me!
Oh I get that. Also the people I left behind in work think I'm having a great time!! I've been blanked by a so called "friend" from work in recent weeks. She obviously thinks I've not been attentive enough to her! I'm having a hard time with that. Another one bites the dust, as they say!! It's been taking up too much of my head space an really stressing me. It's very hurtful. I'm sure I'm not the only one who has lost so called friends through all this.
You know when the tiredness creeps over you. I (as recommended by MrsNails) go upstairs and have a little rest on my bed. The sun shines through my bedroom window in the afternoon and it's glorious, just resting, reading and listening to the quiet breathing of my little dogs who think the idea of an afternoon siesta on my bed is absolutely brilliant. It usually takes about 30 minutes, maybe an hour max but the difference is makes is amazing. Please try it.
I’m thinking of treating myself (no change there, then 😉) to a Crystal Sun Catcher for our bedroom, l’d left a pair of sandals out the other day & the prisms of light dancing on the walls from the crystals on the sandals were beautiful 💎
Thanks for the good advice, MrsNails! I've been taking naps sometimes, but I feel so groggy when I get up. I've noticed that I start waking up if I do some sort of activity (even something really easy). I've never been a napper before, but I'll try to get the hang of it. Also I'll stay at 5 mg for a month and then try 4.5.
Just went to my rheumy. He's glad I'm down to 5 mg and is not pressuring me to reduce quickly any more. But he doesn't know one half or one quarter of what you wonderful people here know.
Experience is a bitter teacher unfortunately but at least we can share our collective knowledge & help others along the way.
You must be sleeping too deeply if you feel groggy when you wake up, so aim more for a rest, listen to relaxing music or read or both.
Unfortunately for most Rheumatologist’s (& us) they can’t see our disease on an X-ray, so it’s harder for them to truly understand, l’m off to see my New Guy next week & hopefully get restarted on the Methotrexate 🙏🏼
Good luck with your new doctor! I changed to a different rheumie recently--he's a very nice and caring young man, but unfortunately he knows very little about PMR. My previous rheumie was more experienced, but he also knew little about PMR. My husband and I have both had great success in finding good doctors in all areas except for PMR!
Short glib answer would be - probably until your adrenals start sparking properly.
How to help them do that - reduce slowly in time (as you are doing with DSNS) and as MrsNails says only 0.5mg a time and maybe staying longer at each dose, before you taper again. It is very often is just a matter of time and patience.
However, it might be worth asking for a Synacthen test just to check they are able to work - doesn’t prove they are working, just they have the ability.
Thanks for the good advice. I'll stay on 5.0 mg for a month or so and then try 4.5. Just got back from talking to my rheumy. You would be shocked to see how little he knows about PMR and cortisol and fatigue. He's a very nice young guy and he writes my prescriptions, but for advice I'm counting on all you wonderful people here. I'd be .lost if I hadn't found this forum. I hate to think of all the PMR/GCA patients who are relying on their doctors' advice.
Oh i was just trying to stay awake, asking myself the same thing! I just cant bear it. Three and a bit years in, it's the fatigue that made me give up work. I search here every day waiting for the magic answer!! You are not alone. Best wishes.
Thanks for your reply. It helps to know that I'm not the only one struggling with this fatigue. I keep hoping for a magic answer, but so far no luck! I'm trying to learn to live with this, but it's not easy.
I go to bed when I hit that slump. It’s horrible being awake feeling awful. It can go on beyond even zero Pred, so I build my life around a nap, if I possibly can. My Adrenals were tested and they were underperforming. They are normal now and my final test will be when I get from 4 mgs to 3. I think I would have been tired anyway.
Sorry to hear that the fatigue can continue even after zero Pred! I keep looking forward to getting to zero, but I guess that's not the end of the PMR journey.
It can take anything up to a year for your body to get back to normal after finishing Pred, but I must admit I don’t really remember the fatigue being a particular problem then. It was a bit of a pain for about 9months when I was reducing between 6 to 3mg - very slowly, tiny steps!
Sorry for putting that demoralising thought in your head. It has been part of my own acceptance and way of life though. Resting definitely stops the stress build-up for me. I like being able to change my head space and improve my mood.
The fatigue gets me down more than anything, apart from the mood swings. I have found audio books and listen for at least an hour every afternoon often on the bed. They pass the time quickly and frequently I rest for two hours without feeling guilty or being aware.
Thanks. Its very interesting to see how other people handle this fatigue. I'll take your suggestion and try audio books. But I'll have to be seated--if I lie down, I always fall asleep.
Completely understand your tiredness. I am down to 4.5, by afternoon I feel definite fatigue. Also being a non napper, it has been hard for me to deal with it. Now I either go to one of two sofas in the house with a book. If I stay there for an hour or two I find that I occasionally drowse a little. Usually when I get up I feel somewhat better. I have joined a new exercise group at the gym which will start in September, and am somewhat apprehensive as to how it will affect me. As othersay, "patience and caution."
Thanks. I should probably sit and read also. I've been lying down and reading, but then I fall asleep and wake up feeling worse. Good luck with your exercise group!
Great that you’ve reached 5 mg. That’s my goal. Keep in mind, can be a comfort or not, that we are older ( I’m 80) and definitely tire more easily due to that , not just pmr, as well. My best to you.
Yes, I think we tend to forget that age can also be a factor ( I'm 81) especially if we have always been very active. I remind myself now and again as I creep down from 6 to 5.5. This forum is a great comfort !
Good point! I hadn't even thought about the fact that I may be getting more tired due to old age. I'm 76, but I remember my very active parents napping when they were much younger than I am.
What i do experience that I guess is pmr , is random waves of fatigue usually in the afternoon. Occurs about twice a week. Seems to have no connection to activity. I just sit , “ veg” and wait it out as I’m not a napper and don’t want to disrupt my hard won nighttime sleep pattern. Now evenings I’m always dragging and ready for bed. 😏
Thanks again. I've gotten so much good advice today on how to deal with fatigue. I know what you mean about not disrupting a nighttime sleep pattern. I know I shouldn't fall asleep during the day, but I'm going to try harder to just "veg out" instead of sleeping. When I nap during the day, it means I don't sleep well at night and also it usually makes me groggier and sleepier than ever after the nap.
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My story so far
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Confused beginner
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