Fatigue is getting no better the lower I reduce
Posted , 9 users are following.
I am currently on 6 days at two and a half pred ,I am in no real pain just the aches of getting older I reckon ,I manage to get out of bed ok but the tiredness is really getting me down , I just don't seem to have the energy to do anything at all , I've suffered with fatigue pretty much all through this journey but now it seems to be getting worse . I still wake up through the night sweating but this could be menopause the sweats have never stopped for me and I've just gone 60 and lately my nostrils have been very dry on and off even though I haven't had a cold or anything, it's quite frustrating. I enjoy reading people's discussions on this forum as I realise I have a lot of things they are talking about , I've recently been suffering from sore feet when I walk especially first thing in the mornings so was interested to read other people suffer from sore feet too this illness certainly has a lot of things I'm sure the rheumatologists don't know about or they don't tell you ha ha , I just want to feel normal again though I have never been as wiped out as this before .
Thanks for listening best best wishes everyone
Molly
0 likes, 22 replies
Michdonn molly1957
Posted
molly1958, I do not have the fatigue, but I push myself every morning wether I feel like it or not that seems to set the day. Night sweats are another story 2 or 3 T shirt every night, never had anything like this before prednisone. Tapering to 17.5 now and the side effects are less than when I was on 30 mg.
Hang in there the journey has a few bumps, smile it helps. 🙂
dan38655 molly1957
Posted
Without fail, when my pred dosage is too low and the muscular-skeleton symptoms of pmr are evident, fatigue appears around the same time.
Lately, I've been taking my 6pm pred a couple of hours early, and my evening jog is more pain-free plus I feel very much more energetic.
This at only the 3-4mg/day dosage level for me at this time.
nick67069 molly1957
Posted
amkoffee molly1957
Posted
When your feet hurt upon getting up it is a symptom of planter fasciitis. You need to buy some inserts for you shoes and try not going barefoot or wear flat sandles/flip flops. If they start aching as they probably will eventually you can use a tennis ball and roll it around under your foot. It's like a massage for your feet. If the pain gets really bad you can buy a contraption that will force your foot to stay up in a flexed position when your in bed.
As for you dry and bleeding nose try using saline spray several time a day. It will help to soothe and moisturize the lining of your nose.
julian. molly1957
Posted
I found it to be a sort of downhill spiral if I wasn't careful. No energy led to inactivity led to lost fitness led to no energy. At times it took a bit of effort to make it an uphill spiral. Really had to force myself some days .... while also pacing myself so as not to over do it. A bit of a tightrope I fell off occasionally. Generally, the fitter I am the more energy I have. But still much less than before PMR.
EileenH molly1957
Posted
In PMR and taking and reducing pred there are a lot of different aspects of fatigue. Autoimmune disorders are almost always accompanied by fatigue - it is a part of the damage your immune system is doing to your body.
This is different fatigue - the fatigue now is because you are now at a dose of pred where your body has to start producing cortisol again to function properly. At doses above about 8mg your adrenal glands produce next to no cortisol because the feedback system tells the body it doesn't need any more - like the heating boiler shuts down when the thermostat says it is warm enough. Once you get below that dose - the system has to get going again but it is rusty and doesn't operate smoothly so the production of enough cortisol is a bit hit and miss. Too little cortisol causes the symptoms of adrenal insufficiency - fatigue is a major symptom there.
https://patient.info/health/addisons-disease-leaflet
This leaflet doesn't apply in its entirety for us - we are getting almost enough steroid from our steroid dose. But that is almost certainly the reason your fatigue is increasign rather than decreasing.
Stay at the dose you are at for a bit longer each time and let the body catch up. One top UK PMR doctor likes to keep his patients at 5mg (if they can get there easily) for up to 9 months to do just that. Then they find the rest of the reduction often goes better.
molly1957 EileenH
Posted
So once I get to two and a half using the dead slow method I should stay on that dose for about a month or more to let my body adjust . My Rhuematoligist is one of those that thinks you can reduce by 1 mg a month and pmr only lasts 12 to 18 months I haven't been back to see him for almost a year as I've had more beneficial help from yourself and others on here who know more about the subject .
Twopies EileenH
Posted
I too am having bone crushing fatigue. In early June I started to reduce from 6 mg. to 5 mg. using the dsns method. Then I went right into the next reduction of 4 1/2 mg, but almost immediately some of the stiffness and soreness returned so for the past 3 days I've been back at 5 mg. last night and this morning the fatigue is so bad I can barely move. So...do I stay at 5 mg, with the hopes I will eventually stabilize? Or increase to 6 mg?
and I have one more question: when you complete a cycle of the dsns method and you feel ok, do you stay at the newly achieved lower dose for a month at least (which I did not). I read what you said about a prominent Doctor keeping patients at 5 mg. for 9 months. Obviously my body wasn't ready for the next reduction but now could I have known? Thanks so much!
nick67069 Twopies
Posted
When I tried to reduce below 5mg ( and I would suggest to do that in 0.5 steps) first time, I had problems. I went back to 5 and stayed at that level from October until May this year. Then I reduced from 5 to 4.5, waited 2 weeks and then reduced to 4.0mg... I plan to stay at least 2 weeks at this level, and if I am symptom free, I will start next reduction.
Since everyone is different, you have to listen to your body and based on symptoms decide if you continue reduction or not. There is no rush, or better yet, rushing reduction does not change underlying PMR activity. If you don't have enough pred + your own cortisol in the system, inflammation will come back and even higher dose may be necessary to handle it.
Twopies nick67069
Posted
nick67069 Twopies
Posted
I think from my reading here, that the lower the dose, harder it becomes to reduce. It makes sense. When we are below 7-8mg level, our body needs to supplement the shortage of cortisol. It is a complex mechanism and it takes time to balance it out and provide proper amount. Some reading indicates that body is still going thru adjustment even one year after we stop taking prednisone.
I plan to take my time, reduce in 0.5mg steps and stay on each whole number dose (4, 3 , 2 , 1) maybe for month or two before attempting next reduction. Slow is better then rushing.
I am OK with experimenting, paying attention to symptoms and always be patient.
EileenH molly1957
Posted
If you feel well there is no reason not to continue - if you feel good at this level then it is a sign your adrenal glands are functioning fairly well. If you are fatigued - don't be in a rush. Obviously you have a decent GP since he supplies your pred I assume.
EileenH Twopies
Posted
I wouldn't reduce further for the moment until you feel less fatigued. If you can manage at 5mg for a week or two and the fatigue lifts it would be good - it is a trigger to your adrenal glands to wake up and do something. If you stay at too high a dose that isn;t present.
Otherwise I don't think there is anything to add to nick's analysis.
molly1957 EileenH
Posted
It's really the exhaustion that's the problem , yes GP just prescribes pred as prescribed by hospital.
dan38655 molly1957
Posted
I found this new article today dealing with fatigue having to do with auto-immune illness and cytokines.
Soas not to get moderated, I'll just state the title below and let anyone thats interested google the title.
Blood Proteins Linked to Severity of Chronic Fatigue Syndrome
EileenH dan38655
Posted