Yesterday I felt the nearest to 'normal' I have felt for a very long time, even my legs felt like my own but I didn't overdo things at all. Today I can barely walk, have already nodded off this morning and now having a long think about whether to make the effort to get out of the chair to go in the kitchen and get some lunch. Is this what it feels like with adrenals? I am on 6mg Pred reducing to 5mg on Monday. If it is I assume I just have to take each days as it comes.
Yesterday I had wings, today I'm grounded. Adrenals? - PMRGCAuk
Yesterday I had wings, today I'm grounded. Adrenals?
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HappyDiamonds
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know exactly what you mean by legs feeling like your own. Unfortunately no knowledge of adrenal restart as on 27.5mg. Sure someone will be here soon. sounds like toughing it out . It's nice to feel almost normal though.
Yesterday could hardly stand up, was so weak..today a bit easier...have got to almost everyday at 6.5mg from 7.....will stay at this for at least a month if I can....but definitely a struggle.....I hope you aren't dropping 1 mg at a time....too much, I wouldn't function at all if I did that!Good luck
Hope tomorrow is even better Longtimer and yes this is my last 1mg monthly taper down to 5mg with the help of Actemra for GCA. Seeing Rheumy on Monday to get instructions for how to taper from now on as I guess I'm entering a tricky stage.
Don't let them forget that the Actemra doesn't replace adrenal function - that still takes time!
Thank you for the information as I had sort of thought it was going to be the solution to all my woes. What is the recommended tapering from now on please or can you point me in the right direction. I do feel that they are going to pressure me though simply because I am on Actemra and have 6 months of my year left on it.
I suppose you have to keep reducing at a sensible rate and know what to look out for - Snazzy is your source for that as she has been there - and accept that it is likely to be a bit rough at times like today. At least you have a 50/50 chance that any symptoms are less likely to be GCA/PMR
Got a pretty good idea why I felt so awful yesterday, Im sure I'm having a GCA flare luckily I'm seeing Rheumy tomorrow. Today would have been my last day on 6mg. I did miss my Actemra injection last Tuesday (because I had such a bad eye infection and on antibiotics), wondered whether not having Actemra could have contributed and to take it today instead of waiting until Tuesday. The left side of my face is giving me original symptoms sadly.
Boo - have you taken more pred? I keep saying it - but TCZ only gets half of patients entirely off pred. The rest need a much lower dose but still some pred.
No, I have taken a couple of soluble paracetamol just to see if they work. Felt slight symptoms yesterday afternoon but they faded after a nap so I thought I was imagining it. Same thing again this morning after falling asleep but more persistent this afternoon. Thought I wouldn't take an injection or extra Pred as I shall be at Rheumatology and having full blood tests tomorrow morning and CRP will be checked. Its also the same eye that has a macular hole and I'm seeing someone at the eye hospital for that on Thursday.
Is there info on here about TCD
TCZ/tocilizumab/Actemra you mean? Try the FAQs, not sure what is there. Or try the search HU option and narrow it to PMRGCAuk - should be a fair number of posts there. Depends what sort of info you want
I'm seeing Rheumy this week too, as stuck on 9/8.5 feeling nothing like myself ..but that'sGCA. Good luck and I will swap experiences with you after appointments...just in case one of them has a magical remedy! 😉
“a magical remedy”? Don’t hold your breath 🤔
Good job we have a sense of humour DL! 😉🤣
What does „normal“ feel like ? I‘ve forgotten.🤔
It's certainly NOT what I knew a year ago. This is my first anniversary of this disease. Normal for me now is feeling good on the day despite having little energy. some days the legs have much less fluid and more mobility. they feel like they will do what I want them to do. Bear in mind that before this disease I would look at what the day promised weather wise, get on my bike, ride 100 miles in 6-7 hrs depending on the hills, come back, walk the dogs, do some fence repairs, or other work till 7pm supper, work on house until 11pm, bed. That was normal.
I think we should all be singing that Mary Hopkins song - "Those were the days my friend we thought they'd never end". 🎶. that's if your old enough to remember it! You will improve Cycli as you have the right mental attitude 😀
Thanks. I do remember it well. Old hits somehow remind me of Russ Conway the pianist with a missing finger. How the hit parade has changed in the intervening years.3 weeks ago fell downstairs because leg didn't move properly. Damaged ribs and lost a lot of skin. Just recovered. Feeling good. 2 days ago splitting logs the maul snagged overhead, lost grip, lurched to right to avoid being brained by maul but leg didn't respond fully so fell over on low brick wall. Another set of ribs damaged and more skin to repair. I won't stop working and despite trying to anticipate what could go wrong it is just impossible to foresee everything that could go wrong. Glad I don't have osteoporosis. Life goes on and we heal but it make one a little miserable when things don't always go to plan 
Oh indeed yes. Every time I think I learn what’s going on, I realise I know even less. I too long for non jelly legs, proper normal shortsighted vision, and no leakage., and ballet classes. Oh well
Hi Frewen1 . Keep hoping. 2years in and you will have learned much. I see you are still high dose like me. I refused methotrexate. Hoping for TCZ soon. Now reducing for 3rd time . I've hoovered up all the info. I can from here and still learning. GCA seems to be the bugbear one but alongside PMR it is often difficult to work out which is having what effect. Aside from this, the accidents and consequent damage takes its toll on energy and repair setting things back. Can't be helped though as life must go on, good and bad. Keep smiling as it could be worse. We are still in the fight despite the pandemic and all our problems
Goodness me....wary just reading it!....envious!
Oh Constance, I do appreciate you have been struggling for a very long time and Im a relative newby of 2 years, but I love that you haven't forgotten your sense of humour and share it with us 😀
I wonder that too, have always struggled with every day being different, and not being able to plan anything....will never get used to that....
Its a difficult one. My grandson is getting married in 20 minutes time in London and I live in the South West so sadly couldn't make the journey or do the hanging around that happens at a Wedding. Yesterday when I was feeling good I did wonder if I had made the right decision but today I know for sure that I did. Waiting for the photos to come through later and they know I am there in spirit.
Look forward to the photos....you have made the right decision...he wouldn't want to make you worse for attending....and don't waste your time expecting others to "get it"...have struggled for 10 years, my OH still some days and doesn't understand....
A ‘trouble’ I haven’t had. My husband is unbelievable.
Mine is unbelievable too !
Mmmm - but that emotional excitement could also be the cause of the rough day.
Well I will just have to tell him not to do it again 😂
God no!!!!!
The worst thing for me is not being able to travel.
a sadness indeed. I'm blessed by buying this farm which was my dream with its own river. A view for 80 miles of upland natural scenery . We have to work to keep it working but I don't have to travel and friends envy my situation. I do hope you have a similar ability to access beautiful landscape and wildlife where you are Constance.
I do! We live right on the edge of the Spa Gardens and we have a beautiful view from all our windows - no other houses in view but massive facilities, stream, pools, ponds, restaurants , masses of greenery, etc.
that sounds wonderful.
We too bought a magnificent acerage with a view , then PMR struck .
Me too Constance . If only we could chat about all the magnificent places we have been on here .
No such thing as ‘normal’ eh Constance . Every morning is a new day - good , bad or terrible . I have an amusement to cover every situation . Watching old rocks stars today from YouTube😂😅🤣
Reading and sleeping for me today.😂🌞
Yes, good days and bad days. Bingo you got it with, take each day as it comes. When you say you didn’t over do it, can you say you did nothing different in any way with your day? I found at times it could be enough to over do it just by doing a tiny bit extra of a chore or halve my nap time. Going out for a coffee could be the gateway to a tired day the next. Between 7 and 5mg was the worst for energy for me.
I don't think so but thank you for making me aware of just how easy even the little extra things can make the following day difficult. Hopefully I can look forward to more good days than bad in time and I wish the same for everybody.
They do come but I do agree with PMRPro that you might hit bumpy road dropping by 1mg now. Actemra does nothing for adrenal function. Anyway, if you do and feel rubbish, you’ll know likely why and not panic.
I soooo agree Snazzy . I am there for the second time , and now I understand a little more than I did the first time . Just rereading again about the lazy adrenals .
PMRproAmbassador
Very likely - and while you think you didn't do much extra, even the excitement of feeling better can push you sideways!! I'm well above your dose and you would think I shouldn't have a problem - but a short fight with bureaucracy or even just discovering something isn't the way i thought it would be is enough to make the next day rubbish.
And no way would I drop by 20% of your dose on Monday!!! 1/2mg at most and using a slowed taper - or you are likely to feel even worse or even more often! It isn't a race - or at least, if it is, then it is the one the tortoise won!
Each stage of tapering seems to have its own way of surprising you doesn't it? Seeing Rheumatology Monday morning so will take my usual 6mg instead of dropping and see what they say, but hold out for 0.5mg drops. I get what you say though because family, friends and neighbours all who have been very good to me still think I can do for them what I always did even though they can see me struggling to walk. They tend to think, she can't walk but she can still do such and such.....
No, you can't! Though how you get through to them I have no idea!!!!
Had friends round to dinner and guess what they said,,,, you look well!!! Just smiled and served the Beef Daub wife cooked as she said she had been lazy and uninventive in cooking since I now did most of it. Had a great evening with friends. Nus Torte for pudding with a Chianti and Sauvignon.
Ah. That old chestnut 'you look well'. Looks don't equal how you feel do they!
good company and good conversation helps a lot
I feel pretty uninventive when it comes to cooking!! Thank goodness Italian salad produce is rather fine!
Sounds very much like how I feel with my adrenals complaining about waking up. It is a toss up between extreme hunger and movement!!
We used to stand up and move without thinking about it. Now it requires mental planning and huge physical effort 😌😌
This made me laugh , i went to the cinema with my daughter the other day. Just got settled when 2 people wanted to pass to get to their seats . They had to wait a while !!😂😂 x
I do agree with u . I must look into adrenal problems again .
This made me laugh too, Bridge - it is just so true!! Love it 😂x
I mean it doesn’t help directly.
Happy Diamonds, love your Labrador! I am also between 5mg and 7mg after 18months of this wretched problem. Currently in Yorkshire Dales supporting family with sick son. The scenery is breath taking and so is the walking with our Labrador and grandchildren. Because I don’t look ill they think I’m as fit as I used to be so expect miracles!! I am taking 5mg at around 2am then either 1 or 2 mg after breakfast depending on the demands of the day. Yesterday walked 6 miles( gently) with husband( with bad back) and lively Labrador, today more walking will be involved so taking 2mg after breakfast. They just have to accept I’m not as fast as I was with my jelly legs. Luckily my lovely daughter in law is a slow walker.All the best with your tapering, we all take our individual journeys the best way we can. Thanks to all for your wisdom and humour.
Gosh, GrannyJane, I reckon you’re doing pretty well too 😎x
There’s no way I could walk as you do, so I’ve taken to getting in lots of garden games (basketball, swingball, cricket etc) for when the grandchildren are here. Best I can do, I’m afraid, all a matter of adapting x
Thank you, he is the love in my life. I rescued him 4 years ago when I was really well then when I got GCA he kept me going. Sadly I developed osteoporosis from steroids and a couple of spinal fractures, also arthritis in spine so was housebound for quite a while and he went out with dog walkers. I could honestly never explain how much he supported me through that even though he is a dog. so I consider he rescued me in return. How I wish I could still take him for a long country walks but he loves the sofa and we are growing older together. Enjoy the dales with your Labrador and I hope your family member is better very soon.
I have no idea what it is related to , but suspect it is adrenals . U r certainly not alone .
Oh my goodness. Me too. Had a lot of energy day before yesterday. My legs felt very "normal". Went for a very short walk, like .9 kilometre and then next 2 days went weak in the legs. Pain returned. Yesterday was better, at least I didn't fall asleep at 2PM. Trying to wean. Right now at 12.5 mg, for another 2 weeks, then down to 10. Started at 20 mg. in January. Ugh. All things considered, I think I'm doing pretty darn good for 72 and being inflicted with this PMR thing. Got my wash out on the line this morning. A real accomplishment! Plus, I'm supposed to work for 2.5 hours today at some point. One day at a time it is. Cheers to you!
Not entirely sure I'd class 9km as a very short walk in the context of PMR and being on pred.
LOL not 9 km. , .9 as in almost 1. I could not do 9 km even prior to PMR. 😉
I think its kind of cruel to give us a really good day that reminds us of how things used to be and then along comes a couple of bad days. Almost like good guy, bad guy playing with us. Keep doing pretty darn good 😀
totally agree
you wake up with thoughts of what you could do today and then find you can't. heyho
If you're having pain as well as fatigue I would likely suspect a flare. But if it's overwhelming exhaustion without PMR pain then it might be your adrenals. I have secondary adrenal insufficiency which means it's from taking steroids for 3 years to treat me PMR. The exhausted feeling is like no other that I've ever experienced. I thought it was my heart or lungs until my rheumatologist tested my cortisol level. Good luck! I hope it resolves its self soon.
Poor you. If we are still taking pred of whatever amount will the Rheumy be able to make a judgement as to whether the weakness is cortisol deficiency. I am suffering at 6.5-7 mgs. I now see what everyone is saying about jelly legs. How long does this adrenal phase last per dose reduction? Think Snazzy & PMRpro reported on that. Thanks.
My adrenals took about 8-9 months (from 6mg down to 3mg) to stutter into life -not too bad, only random bouts of fatigue. For SnazzyD it was more severe and somewhat longer .
There is no finite answer…..
I feel just the same! Fine yesterday felt very optimistic - today rubbish. What is going on. Definitely can’t make plans and no one understands other than in here !
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