Why so tired?

[judyb100]

Thanks to all of you! I've learned so much since I signed up a couple of months ago.

Since I signed up, I've been following DSNS to get from 9 mg to 7 mg of prednisone. I reduced by .5 mg, and it's been working quite well. Quite well until the last week when I dropped down to 7.0 every day.

I'm a little stiffer than before, but my biggest problem is that I'm exhausted. Every day I'm so sleepy that I take a nap after lunch (and I'm not usually a napper). Often I feel like I can't get anything done in the afternoon. I live in Seattle and we are having the most beautiful summer, which I would like to enjoy more!

I learned from reading this website that I should rest if I need it, so I'm trying to follow that advice. But I wasn't tired like this at the higher levels of prednisone. The exhaustion started while I was at 7.5 mg, but it's gotten much worse at 7.0.

Does this mean I'm not taking enough prednisone?

Thanks again to everyone! Or, as I've learned from reading this website, I should say "Thanks again to you lot!"

[HeronNS]

Oh I remember 7 mg. I felt like I'd been run over by a truck. It's your adrenal glands having to wake up and being slow about it. Don't worry. Keep going VERY slowly with the taper, maybe even drop by only .5 mg from now on, and it should get better. But it takes time. I still have days when I feel really flat, but other times nearly energetic!

[DorsetLady PMRGCAuk volunteer]

Hi,

As Heron says it can be a very difficult time. You come through all the other bigger reductions relatively easily and then, when you think everything is going okay - wham!

The only way for some to awaken their adrenal glands is to go very slowly, personally I had the fatigue you describe almost all the time I was reducing from 6mg down to 3mg in 0.5mg tapers using a slow plan. It seems to come on for no apparent reason which makes it more frustrating. At first it was very worrying, but after a while it just became a drag, but eventually I got there. Unfortunately there isn't a great deal you can do, just endure it.

Some Rheumies keep their patients at 10mg for 6-9 months to avoid this happening, but as you're past that level now, it's just a matter of waiting it out I'm afraid. Sorry!

[PMRpro Ambassador in reply to DorsetLady]

No - 10mg is too high, 5mg is the one to mark time at if you can get there, below the amount the body makes (about equivalent to 7.5mg) but not so low that you are totally flat.

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Why do some plans stay say at 10mg then- or has that changed recently?

[PMRpro Ambassador in reply to DorsetLady]

The Kirwan plan keeps patients at 10mg for a year on the way down once the patient has got to 10mg in the first place - they think it saves flares happening. It certainly is likely to prevent them in that first at least 15 months by which time the disease activity will have calmed down a fair bit for most patients.

It's Dr Rod Hughes who likes to keep people at 5mg for up to nine months to let the adrenal function stage a graduated return to work. According to his patients that seems to work too even if they are horrified at still being on pred so long.

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Okay thanks - got that!

[PMRpro Ambassador]

In a way you aren't taking enough prednisone - but at this level you adrenal glands have to wake up. Above about 7 or 8mg your body gets the message there is enough corticosteroid present and they don't produce the body's own natural version, cortisol. It is essential for correct function of the body. It is a complex feedback system and takes time to settle down. In the meantime - slow the reduction right down. Might even be a moment to stopp for a couple of months.

Seattle having a wonderful summer? No wonder you're not a happy bunny!

[judyb100]

Thank you so much for your comments! I think I'll stay at 7mg for a couple of months, as PMRpro suggested. My rheumatologist always encourages me to get to a lower dose, and yet he doesn't give me very specific advice. I have osteopenia and fell and broke my hip about two years ago. I believe my doctor is worried about my bone density deteriorating while I'm taking prednisone. I worry about it too, but at the same time I have to deal with this PMR. I've had PMR about 9 months.

The knowledge and advice I've gotten on this forum are SO wonderful!!! Since I'm on my own with few visits and not much help from my rheumatologist, I don't know what I would have done without your help.

[PMRpro Ambassador in reply to judyb100]

If he is so worried about your bone density deteriorating - has he given any specific advice about that? It is possible to improve bone density by diet and exercise - Heron is the expert there. Have you been on calcium and vit D? Or any other medications?

[judyb100 in reply to PMRpro]

Yes he has. I'm taking calcium and Vit D and doing some weight-bearing exercise. At first I overdid it on the exercises until I learned from the experts here that we PMR sufferers have to take it easy on exercise. He also wants me to take Fosamax, which I'm afraid to take because of possible side effects. (I think you have different bisphosphonate drugs in the U.K.)

Thanks again to all for your help. There's no place else in the world to find all this valuable information!

Judy

[PMRpro Ambassador in reply to judyb100]

No same stuff - just we call things by their substance names and not their brand names. So Fosamax is alendronic acid to us.

[j-e-a-n]

I have managed to reduce to 11 mgs at the moment. It has taken me a long time as my husband died just after Christmas, and just recently I have had to have my 2 old dogs put to sleep. I have GCA and alsoPMR and now I am down to 11 mgs there are days, a lot of days, when my joints hurt so much, but worse still is that I am exhausted again, just as I was when I first got this disease. After reading this post I wonder if It is possible that my adrenal glands are already protesting. Thank you everyone for all your help over the last 2 years. Jean

[PMRpro Ambassador in reply to j-e-a-n]

I think it is much more likely that you are at slightly too low a dose to manage your inflammation at the current level. But if you say your JOINTS hurt - that really isn't typical of PMR.

[j-e-a-n in reply to PMRpro]

My muscles hurt as well but unless I do too much I can manage it. I am also having hot sweats every evening. Simce my husband died I am trying to look after his cousin who we looked after before. She has now moved into a residential home but I am struggling to empty her flat as she was a hoarder and am also responsible for her financial affairs as I have an LPA for her so am getting so much paperwork to do for her that I am stressed to the hilt. I am going to the bank tomorrow and hope to get some help there as they are very good. I just feel that I am going under slowly and can do so little now..Jean

[PMRpro Ambassador in reply to j-e-a-n]

You aren't fit to cope with a task as enormous as that - I'm not surprised you are struggling. The bank should be able to help - although they aren't what they once were are they!

There are companies who sort out houses - must you sort through everything yourself to know what is there?

[j-e-a-n in reply to PMRpro]

Yes I have to sort everything before I can get in a house clearance. I have a neighbour helping me on the days I can get there, and I will get in touch with the Council to ask for extended time to clear the place. She can afford to pay rent for an extra month. I am still trying to sort through my late husband's things as well at the same time but the priority is his cousin. Once everything is sorted it should be a lot less stress and I think I will get an accountant for her and he/she can do the accounts instead of me. Feel a bit better for putting it down on paper. Thank you

[PMRpro Ambassador in reply to j-e-a-n]

What about getting someone in to help box it, put it in storage and take a few boxes at a time to your house so you can spread the agony over more than just a month?

[j-e-a-n in reply to PMRpro]

We are doing just that and taking loads of bags and boxes to the re cycling place, decent stuff here to be gone through, some things for the charity shop and most of the bedding and towels to the dogs home. There will be loads of boxes here eventually - to give you an example, there at least 30 brand new watches, still in their boxes, probably a lot more as I go through the drawers and cupboards in the bedrooms !!!!! I will have to do a car boot sale or sell them as a job lot suitable for a boot sale. On a funny note, when we took her out for a meal she always secreted the paper napkins at the end of the meal and she has hundreds in the flat just waiting to be thrown out.

[HeronNS in reply to j-e-a-n]

Hoarders seem to come in all kinds! My daughter in law has been helping her parents downsize. They've already moved into a new apartment and their home is gradually being readied for sale. Her father saved things like newspaper clippings of his favourite sports teams. Not only did he save them, but he carefully preserved them in plastic sleeves. Now that he's agreed to get rid of them they have to remove the paper from the plastic so each can go into it's appropriate recycling stream! He was a very organized hoarder (unlike my husband who merely accumulates things in random piles).... Irrelevantly, he's also the only person in my immediate circle who has PMR.

[j-e-a-n in reply to HeronNS]

Had to laugh reading that. The fact that Lucy isn't organised is what is causing the stress as every single thing has to be looked at and she has at least 40 purses, most of which have never been used and just have a receipt in them. Think I may have to get more boxes and just pile everthing up and bring them here until I start, if ever, to feel stronger. I just hope I don't have to go back up on the preds. I was told to do that by my GP and also my Rheumy when my husband wa so ill and then died, at Christmas. I am determined to do everything I can to keep going down on the dose

[PMRpro Ambassador in reply to j-e-a-n]

Don't force to reduce - it really isn't worth it because all that will happen is that you will have a flare and have to go way back up on the dose and start all over again. You have a very sensible GP and rheumy -

[j-e-a-n in reply to PMRpro]

I am due to see my Rheumy at the end of the month.Until then I will just do a small reduction probably just a half mg and leave it at that. Won't do that either if I don't feel better. Thank you.

[SusanEleven]

I felt rather good at 6mg (no pmr pains, minimal fatigue). I've continued to taper .25 or .5 at a time and there are still no pmr pains, just my osteoarthritis being truly awful, and the fatigue hit hard again. Plus the night sweats increase at each drop before settling back to being less intense.

I stayed at 5mg for 12 weeks because I felt like I needed a solid block of time with no changes. When the fatigue settled down a bit I started tapering again at increments of .25.

I've been at 4mg for about 3 weeks now. I'm tired and very emotional, weeping a lot. (I've been on antidepressants for ages, faulty brain wiring on both sides of the family. My psychiatrist says she's sure it's the prednisone reduction and not the need for an increase in antidepressants. She's treated me forever and she's smart and kind so I trust her.) I figure I'll sit at 4 for a while and see if my energy picks up.

[HeronNS]

Dorset Lady mentions being fatigued from time to time for no apparent reason. In my case I've figured out that sometimes it's because I've been stressed in some way. It can be *good* stress, like getting together with friends, but if it puts you over what you encounter in your everyday life it can take a period of rest to recover from what you might have thought was the most relaxed of activities.

[TooSore]

My story - see if anything rings true for you...I've also had the fatigue and teariness at the lower doses. For me it means I've done too much or been stressed. I was told to pause tapering until the tears stopped, call if it lasted more than a week. Starting when I got to 3 mg I was told to stay on it 3 months, then 3 months on 2 mg. Since I won't do a full mg drop, the doctor just shrugs and says to get there by going down .5 and .5 and he'll see me in three months. Then I do a slow taper my way anyway but know I have 3 months to get there. I also know if something happens I can call and he'll adjust. I am finding at first I think I've gone too far or am just on the edge of being ok, but given another 2 weeks I realize I'm ok. I think the closer to zero I go, the slower I need to taper. Good luck, be patient and kind with yourself.

[PMRpro Ambassador in reply to TooSore]

It's the SLOW that does it- you are so lucky to have a doctor that "gets" it!

[TooSore in reply to PMRpro]

He does and he doesn't. He doesn't see the need for a tapering plan and seems to think that given the prednisone, life should carry on as usual. No need to make any changes. I can do anything I could before. But when I say that I got in trouble pulling up a carpet, he says, what! Of course you flaired! But I could do it before... I drive 90 minutes to see him though because he does listen, works off of symptoms and isn't scared of prednisone. He also gets on the phone quickly if needed, so he's a keeper. 🙂

[PMRpro Ambassador in reply to TooSore]

Hmmm - there are a lot of doctors who believe once you are on pred you are back to normal! We have as patients told some of them in appropriate circumstances that er, NO - doesn't work like that! And they are amazed!

[judyb100]

Thank you. I'm going to take your advice and pause in my tapering (at 7 mg) until I feel less exhausted. Also it's interesting to know that you are tapering so slowly when you get down below 3 mg. I feel like I have a better idea of what is ahead of me.

You and other people here have talked about being exhausted, teary, and emotional. So I told my husband that I'm not the only one who's fatigued and emotional in going through this PMR/prednisone tapering process.

My best friend from high school visited last week. She and my husband and I made ourselves sick by talking and worrying about our crazy health care situation here in the U.S. After a few days of that we decided that we had to call a halt to any more health care discussions! I was not the only one who got worn out by this stressful topic.

Again, thanks for telling what you have been through. Good luck to you. It sounds like you're almost at the end of this process!