Lowering prednisone making me fatigued
Posted , 8 users are following.
Hi,
I am from Australia, and I am in the 23rd month of my PMR. I am now 60 years old. This forum has been more help and reassurance to me than any other site I have looked at.
I have been llike many others - spent ages on 10 mg, then ages on 5 mg, thinking I would never decrease any more, but at last it is starting to burn itself out now.
I have been dereasing 0.5 mg at a time over weeks and weeks, and now I'm at 3mg, and ready to drop to 2.5 mg. However, I am suddenly finding myself feeling very tired and exhausted. Fatigue has always been one of the symptoms that affected me a lot, but it was getting better. Now, although my aches and pains have reduced to a bearable level, the fatigue is really kicking in.
I am wondering if my adrenal glands are perhaps a bit tardy in making up for the reduced prednisone dosage. I understand that 10mg of prednisone is about the same as our body's natural cortisone levels, and I just expected that any lowering after that would be fine if it was done very very slowly - which is what i have done. It's been just fine until I got to 3mg.
Does anyone have any suggestions as to what it could be? Maybe I just have to get through this, and I might have to stay with 3 mg for a few weeks more to let my body get used to it.
On an interesting note: My PMR started with a stiff neck and shoulder pain which gradually sprerad to my upper arms and legs. Then it worked down my arms and legs to my elbows and knees and calf muscles, and my neck was OK. Now that it is getting better, it's following the same path in reverse - my arms and legs are getting better, and the sorest part of my body is my neck, where it started. I think PMR is an insidious animal with an agenda all of its own !!
Neralie
0 likes, 6 replies
carolk
Posted
EileenH
Posted
As carol has said it could be simply that your adrenals haven't caught up yet in which case slowing down and hanging about at 3mg for a couple of months might deal with it. On the other hand it is possible that the underlying autoimmune disease has reduced a lot but not gone away altogether - but the same thing applies. How long did you stay at 5mg? MrsO's doctor recommended more than 6 months at 5mg and we know that one expert group in the UK approaches it a bit differently and keeps their patients at 10mg for a year before then continuing reductions at 1mg at 4 weekly intervals. They achieve a flare rate of 20% by doing that - other reduction schemes see a 60% relapse rate so that long gap does achieve a lot.
When you are reducing - how do you do it? By that I mean do you just go from 3mg/day every day to 2.5mg/day every day, for example? It is recommended by top experts not to reduce more than 10% of your current dose at a time (no doubt you have seen that in other posts). At a dose of 5mg/day you are at 10% when you reduce by 1/2mg but below that the percentage is increasing each time you drop. Some people are very sensitive to that and 3mg does appear to be a hurdle for a lot of patients.
I realised the other day that a very simple scheme for reduction which makes the percentage drop very small is to take your new dose one day and then take the old dose for the rest of the week - taking the next NEW dose on Day 7. Start counting again - and take the new dose on Day 6. The next time, take it on Day 5. Continue in the same way, taking the new dose a day earlier each time - until you get to the new dose being on consecutive days. This morning I mentioned it to a friend on the other forum - and that is exactly what she does!
It takes 6 weeks to drop 1/2mg but if it doesn't hurt and is successful - does that matter? We keep saying - remember the tortoise and the hare, who won? Once you have got to the new dose every day and you have no worse symptoms - you're ready to start all over again!
As Carol suggests - getting your haemoglobin checked to see if you are anaemic and also your vit D checked is also a good idea - low levels of both can make you feel tired. And I bet you are doing a lot more now your pred dose is going down aren't you? Plus it is summer with you - hot makes tired!
Where do you live? Hope you haven't been drowning as well ;-)
Eileen
MrsO-UK_Surrey
Posted
I'm sorry to hear you're struggling a bit at the moment but that can be so common at the very low dose when the adrenal glands are trying to get back to their normal production of cortisol (natural steroid) having been suppressed by the Prednisolone for so long.
As Eileen has said above, I was kept at the 5mg dose by my rheumy for between 5-6 months (it would have been longer if he'd had his way, I'm sure!) This followed a flare at 3mgs which resulted in me having to increase back up to 10 to get control of the inflammation. I managed to get down quite quickly again to 5mgs and following all the months at that dose I then reduced at a snail's pace, taking 4.5 on just one day of the first week, on 2 days of the second week, on 3 days of the third week etc, taking 7 weeks to reach 4.5 every day. After a couple more weeks, I started the routine all over again to 4mgs. It was successful and I eventually reached zero Pred last July.
Yes, you're right - PMR does have an agenda all of its own, and it can be a slightly different agenda for each person too!
Neralie
Posted
After reading your posts I realize that I am simply getting too impatient. I can see the end in sight and I want to get there as quickly as I can, but you have all emphasised the foolishness of being impatient.
I have been reducing my 0.5 mgs by simply alternating between the old and new dose for a few days, then straight into the lower dose. I have decided that I will now sit at 3 mg for at least a month before I lower again, and I will definitely do the one day then two days a week method. Who'd have thought 0.5 mg of pred would make such a difference !!
And Eilleen, you are correct about my increased activity. Two weeks ago I started brisk walking for 40 minutes early each morning with my sister - I come back perspiring and totally exhausted, but I was thinking I was doing myself some good - maybe I need to take it a bit slower. After all, 3 months ago I couldn't sit on the floor because I couldn't get up without help. Now I am doing much more physically, which is great, but maybe too much too soon.
Yes, it's summer here, and it's been a hot one - I hate our summers. I live in Queensland, but in the city of Toowoomba, which is on the edge of a range and our climate is much milder than the rest of Queensland, thankfully. I find the worst weather for me is approaching storms. I am a weather barometer - even if the rain is not forecast, I can feel it coming. Toowoomba had a terrible unprecedented flood two years ago, and two people lost their lives here, and we have just had very heavy rain again last month, but no damage done.....one of the advantages of living in a hilly city. However, there were horrible devastating floods in the districts surrounding us. That's Australia for you - fire restrictions and tinder dry vegetation one day, and two days later everything is under water.
Thankyou again for your help and your reassurances - I feel better already.
Neralie from Australia
carolk
Posted
MrsO-UK_Surrey
Posted
The brisk walking can be good and I certainly increased both the length and briskness of my walks as I felt more able and comfortable on the lower doses and approaching remission. However, I found it preferable for me to walk later in the day once any early morning stiffness had worn off and the daily steroid dose had got into my system.
I do hope things go more smoothly for you now with the slower reductions - do keep in touch and let us now how you get on.