I was surprised (and a bit envious) to read DadCue's post in which he and others say that deathly fatigue wasn't one of their symptoms for some time.
For me deathly fatigue has been a major part of my conditions since they started and long before they were diagnosed. Pred got rid of the pain and stiffness in a way that seemed almost miraculous, but the fatigue didn't change. It did ease somewhat, though not completely, for a few months when I was taking 15 mg of pred per day. However I'm now back at the state where vacuuming the living room necessitates a long sit down and making the bed means I have to lie on it for half an hour. Yesterday I slept on the sofa for most of the day. I've joined a book group which is part of my local U3A, but it's two bus rides there and two more back, and regrettably I think I shall have to opt out. I find all this very depressing and long to be able to do normal everyday things and to have a little bit of social life.
I'm now taking 8 mg of pred and don't think I've reached the stage where the adrenals need to start functioning, but maybe I'm wrong about that. Any comments/advice will be gratefully received.
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Marijo1951
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YOU may have - if you don't absorb as much of your oral pred dose as others the amount of steroid available to your body may be low enough to lead to fatigue. And some people experience more of a boost from the higher doses of pred than others. You aren't the first to start feeling tired soon after 10mg.
Everyone must be different in how they react to pred and how the illness affects them. I was euphoric and buzzy on higher doses of pred, and couldn't wait to leap out of bed in the mornings to get things done. Now that I am on a lower dose - 11 mg - I don't feel quite so buzzy, but thankfully I still don't get the deadly fatigue that often. That might come later as I reduce the pred dose. I enjoy an afternoon nap - up to 2 hours - but in between naps I get lots done and feel well. Stress or over-exertion tends to hit a couple of days later, and I might be in bed and asleep by 8pm for a couple of days. Don't feel guilty about frequent naps, and nap for as long as you need to. On 8 mg you may have reached the stage where your adrenals are thinking about taking over from the pred, and hence your extreme fatigue now. I'm sure other posters with more knowledge of this than I will advise you.
I never had the 'buzziness'. I was euphoric in the sense of being overjoyed not to be in pain and crippled any longer but it didn't make me more active. I think I was still reasonably okay at 11 mg as you describe, achieving a fair amount in between rests.
At 11 mg the pred is still taking over from our own adrenal function, and I realise that on lower levels the extreme fatigue syndrome is likely to kick in until our adrenal function re-awakens. Good luck in riding it out.
Could well be added problem with adrenals needing to awaken, and if you’ve suffered with DF all the way through, you may suffer more than most.
My DF started when I got down to around 6mg, it does vary from person to person, and the only way to get through it is to reduce very slowly -0.5mg at a time, and using a slow plan.
It is frustrating I know, but I’m afraid it goes with the whole illness/medication thing. It does pass, but you do have to be patient.
I'm actually meant to be at 7 mg since last week according to the plan that the rheumy gave me last time I saw her. I think to be at 8 mg isn't too bad. My next appointment is 22nd May. I think I'll stay at 8 or even increase to 8.5 before then.
The doctor I saw last time wasn't my consultant rheumy but one of the registrars. I had the impression that she was open-minded and would allow that the patient knows his/her body. Unfortunately I've no guarantee that I'll see her next time.
No that’s the problem. The younger doctors seem to move every 6 months or so. But it does say in guidelines that tapering should be tailored to individuals and with the agreement of the patient/doctor. Some doctors don’t always adhere to that.
Thank you. I'll certainly feel more confident armed with the knowledge and wisdom I've gained from this forum. I'll report on how the appointment goes.
I agree, It’s quite possible 8mg is not enough for your day’s requirements but the adrenals have still got the do not disturb sign up. I don’t have deathly fatigue and am not old enough for U3A but still couldn’t manage what you do, especially at these lower doses. I felt much better at 10mg and it all went to pot from 7-5mg, soo frustrating. At 5mg lights started to come on and at 3mg I felt much better and less needing to be a hermit. So what with your DF and your AF, your U3A is probably a bit much TBH.
No advice just sympathy. I have to set the alarm if I have to be somewhere, I get myself ready and then need to sit and recover, and fall 💤, the alarm went off fifteen mins. ago, trying to keep awake until I leave in another fifteen.
I had terrible fatigue at the onset. Lie down or fall down. Started at 15mg pred. and before I found this site I reduced as the dr. said. That led to a terrible pmr flare. Once I learned how to reduce, the fatigue is much less. I find, the day after a reduction day, I get awful fatigue that lasts about 2 days. Then it settles down until next reduction. I have needed a daily 20-30 minute nap to keep going for rest of day.,I have done this for 2+ years. If there isn't any pain with the fatigue then I sit tight and wait for it to clear. If I have pain I re-up my pred. for a day or two and try again.
Hi Marijo1951 I am back up on 50 Mg (not for the first time having to increase). Regardless..high or low on Pred I have had the deadly fatigue throughout. What has helped me was some of the advice I received on this site. It really does seem to be an individual thing. Having read many comments I have to agree with Pinks 33 in that everyone must be different in how they react to pred and how the illness affects them. Having lived a very healthy lifestyle with little or no real health problems throughout my life to speak of this past 8 months has floored me. I am so grateful for the advice I have received on this site and feel less isolated since I joined. Like you every small task feels like I am attempting to climb a mountain but I make myself stop have a short rest and then try again. I was advised at the start of joining this site that I was in for a long journey, I realise that now and know through the responses I received from my initial contact on here I am not alone. Sorry I cant be more helpful but felt a connection where you said 'I was surprised (and a bit envious) to read DadCue's post' and wanted to make a response. Hope you too find some relief on site.. all the best
Thank you so much for the fellow-feeling. One thing that I must do is to make sure my diet is healthy at all times. Come 6 o'clock I feel the Deliveroo temptation coming on - so far I've been very good at resisting it.
Thank you all. I've just had a lovely 3 hours with my friend Clare, who cheered me up and kept me awake, followed by reading your very helpful comments. It's good not to feel alone.
When I was on higher doses I was in that paradoxical state of being exhausted but insomniac. I still wasn't really active. I collapsed for the night in front of old films on You Tube and knitted like crazy. At least now I've got over the insomnia for the most part - I probably have one bad night per month.
I have experienced the Fatigue of different types and the extreme Tiredness / Insomnia paradox.
I think it is so variable from person to person for lots of different reasons , just like GCA , PMR or both are experienced very individually too.
It's not just the condition but the person .
Age , past medical history and the present medical situation , e.g : other illnesses , stress , injury , what other medications you are on etc., etc. that make a difference to wether this affects you and when .
It is a matter of resting after activity but also making sure you do some forms of activity on the worst days too , even if it's a little pacing about and light stretching to prevent more physical issues occurring.
You have been doing so well recently with dieting and exercise classes etc. that you should not feel bad about a little blip. Keep positive about the things you do keep up each day.
I was interested in what you said about the book group you have joined and how the journey ( which would be tiring ) is what might make you leave.
Could I suggest a brave solution?
I know the U3A folks I have met are a really helpful , friendly bunch and they would never want someone to miss out for want of a bit of transport.
Why not let them know your situation and see if there is anyone coming from your direction who could give you a lift.
I bet there will be someone happy to help.
When you have an offer let them know how things are with PMR Fatigue and just ask them if you can call them on the day , because you are up and down , to let them know you are well enough to go too.
With any luck , you won't need to miss out after all , and that sort of social group will add to the positivity that helps you fight the Fatigue.
Take care , we know you are a trooper and will get past it in the end , hugs , bee xx
Thank you for the encouragement Bee. Actually I'm feeling less down about everything this morning. I think it was finding out that some sufferers don't experience fatigue to the same degree that set me off, and all the kind responses that have made me feel better. Nice suggestion to ask for a lift, but I live in London where parking is always problematic to say the least and the book group I mentioned meets in Stoke Newington which is particularly difficult, so I doubt if anybody goes by car. There are other groups closer to home that I can join, indeed have already joined, including a short story reading group which I am enjoying. The meeting in Stoke Newington is next Thursday - maybe I'll feel more able to go by then. Thanks again for the encouragement and support - it means a great deal.
Thank you for the suggestion. I take a calcium, vitamin D and vitamin K2 supplement every day. I think I have an adequate supply but I'll bear what you say in mind.
Has your doctor done blood work to test for all types of anemia, not just a hematocrit. there is a specific type of anemia that goes with this disease. it is called anemia of chronic disease or non-binding capacity anemia. the iron is in your body, it just does not bind with the cells because they are under attack by inflammation. I had two iron infusions and it helped the fatigue, but getting the inflammation down is the key.
It has occurred to me that it might be anaemia, as I've always been borderline anaemic and was very anaemic when I first went down with GCA and PMR. However I didn't know about 'anaemia of chronic disease'. I'm seeing the rheumy later this month and will raise the subject with her. Thank you very much for this suggestion.
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