Hi everyone, once again lowered to 31/2mg predisolone but feel absolutely shattered walk round too shops and I have had enough. Think it must be my adrenalin gland thats a bit lazy
Asked for test too test it told no. Not much pain at all really just a bit stiff in morning. Would love to have more energy any advice most welcome
Been on predis alone 20 months. Thanks in advance..
Oh dear, yes that sounds familiar. Until my adrenal glands were able to cope I had to take things very slowly. Do you drop from one dose to a new dose or introduce the new dose in slowly over weeks? Did the doc give a reason for no Synacthen test?
Hope they have a good reason for refusing the synacthen test!!
Don't think so. Thanks for replying
Not good enough - you are a level where it should considered!
What is a synacthen test?
A test to assess whether the adrenal glands are able to produce cortisol. A baseline blood test is taken at 9am to measure the cortisol level, an injection is given that should stimulate the adrenal glands to produce cortisol and then more blood samples taken after 30 mins and a couple of hours to see if that has happened.
Thank you. So is this something that you get when you start to tail off prednisolone?I'm learning so much from this forum! So glad I found it early on in my diagnosis.
There is no point doing it until you are AT LEAST down to 5mg, preferably 3mg, Most people would say if you aren't experiencing extreme fatigue there is no need but there is a lady on the forum who was at 2mg and felt fine but her doctor automatically did a test and found her adrenal were totally unable to produce more cortisol. It is necessary in emergency situations - illness, accident, operations for example - and without it you can become very ill. It is relatively easily dealt with but you need to know if the precaution is needed and you only know by testing.
Wow, thank you for that.... nowhere near that low dose, but very good to know all the same .
Adernal problems started to hit me going from 5 to 4.5 and was full blown when I tried to get to 4. None of my doctors picked up on the reason I was feeling so ill, I had to ask them if it was adrenal insufficiency and then they got worried and sprang into action immediately.
I think it is neglectful of your doctor to flatly refuse a Synacthen Test at your low dose. Potentially dangerous too, to allow you to become Cortisol deficient. Second opinion?20 months is short for the duration of PMR. You may need more Pred for all of the above reasons.
If you are just dropping by 0.5mg one day and staying at that new dose, I suggest that is too much change in one go and could be causing your problems. At these levels I found 0.5mg was very noticeable. Try introducing the new dose in slowly so your body gets used to it without such a shock. There is a good plan on this link.
healthunlocked.com/pmrgcauk... at less than a year you really need to slow right down anyway because of the risk of a flare up. At this low dose level sometimes an increase of autoimmune activity can seem very like low adrenals or you can have both.
Now been off pred for 3 weeks. The Rhemy dismissed me as a patient yesterday. Told him I am so fatigued and achey. Said all my blood work was good and to take Tylenol for osteoarthritis . No more blood work. What more does one do so I can share your fatigue. I am in bed at 9pm and stay there till 7am. Just hoping for improvement as time passes.
Fingers crossed hope we improve.
GPs often manage PMR themselves. Don’t hesitate if you feel a return of symptoms or the fatigue becomes unmanageable. I have to have a nap after lunch. I think my night time sleep is poor quality and this of course adds to the fatigue and aches. I have asked for Amitriptyline 10 mgs again. This taken 1 hour before bedtime really helped me to sleep in the early days of PMR. There has been a return of disturbed sleep since my GCA diagnosis. If I very occasionally have a good night or I sleep in, I feel like a new woman. A walk round the block helps me too.
The fatigue could be your adrenals still not up to speed...it can take up to a year for everything to return to "normal" after Pred. It does vary - depends on all sorts of things - time on Pred, dose of Pred, and how slowly you reduced the last 5mg (I think).
I suffered from sleepy adrenals for about 9 months between the reduction of 6mg down to 3mg, but then took another 9 months to get to zero - no fatigue!
In fact it took me 2 years to get from 80mg to 10mg - and another 2.5 yrs to get from 10mg to zero.
just keep an eye on the achiness- make sure it's OA or the passing of the years - and not PMR.
I do not find your time in bed unreasonable. I am in bed by 8p.m.and get up between 5 and 5:30
Time, that's what is needed. Your adrenal glands are catching up with the reduction and that, I hate to tell you, can take up to a year. Provided the PMR symptoms themselves are under control I recommend you NOT increase your pred as this will only slow down the adrenal recovery. At least, this is what I found. An ill-advised attempt to taper to 1 too quickly at the end of my second year triggered a flare, an increase in dose eventually to 7 and a fairly quick taper back down, eventually to 2 where I stuck, but also I am sure made it much harder for my adrenals to recover. Except for temporary fatigue at 7 and later 4, I had not had much trouble with fatigue until after that episode, and I have to say, three years later, I am still not as energetic as I was before that flare. And I still take 2 mg despite numerous attempts to get lower.By all means increase your dose to deal with PMR, but not to deal with fatigue unless after some time you are diagnosed with permanent adrenal insufficiency. You probably only need more time, and an excruciatingly slow taper, from now on.
I upped my dose a bit for a while and the deathly fatigue improved, when I reduced again things seemed a lot better.
Opposite of my experience. Glad for you. 
Oh no, is it still bad?
Not "deathly fatigue," but lack of energy seems to be the way I am now. The osteoarthritis hasn't helped because for months, basically since late April, my ability to exercise has been rather sporadic, I can't take long walks any more. 
I live in hope that things will improve, but it's a long process and may end in a few years with knee replacement(s). I hope not, but.... So I do something and then I chill. Mostly I chill. 
I know how you feel. Having dislocated my hip recently plus having lacerated my leg does not help. I had a PRP injection in my knee the other day. It was a booster. I had the injection initially last year and I was very sceptical afterwards as I still had a lot of pain. I then realised the pain had gone after a few weeks!
I suppose aging is a learning process as well as a time of disintegration. It seems there is always some new thing, usually small, sometimes self-inflicted (I've always been a klutz) sometimes not, which adds to overall sense of unwellbeing. Today I learned our train booking to visit our daughter in January has been cancelled by the train company, to my mixed relief as we were going to have to cancel anyway as the pandemic is currently very poorly controlled in Ontario and not much better in intervening Quebec where we have to change trains. But the little one starts with daycare in January as my daughter is going back to work in February and we knew we wouldn't be able to visit once their household bubble was popped that way until after we all get vaccinated. So even if the train starts running in February or March we won't be able to visit that soon after vaccine roll-out. It's almost exactly a year since we visited and had a little time with our then four-month-old and only granddaughter, not to mention our daughter and her partner. So to the physical aches is added the emotional ache. I guess that's what pandemics do, but it feels like it's been getting a lot harder the last few weeks.
What is a PRP injection?
PRP is sometimes mentioned as the vampire injection. You take your blood out of you, centrifuge it to get the plasma, add something then inject it back in and they reckon it helps the cartilage to rejunivate. It seems to work particularly well on tennis elbow!! They say it works in 80% of people and can put off a knee op for eight years. They have been using a similar technique for Covid by taking blood from people who have had Covid and have antibodies then injecting it into people who currently have Covid.
Interesting. Something to ask my new doctor when I meet him. I imagine the covid thing is more similar to the rhesus factor thing I was given after my children were born, as I'm rh neg. In that case, as with covid antibodies, one is getting the benefit of someone else's blood. The PRP sounds a lot safer as it's one's own blood.
Edit: Ah, it's platelet rich plasma. Just did a little reading. It is available in our area - from naturopathic doctors. That gives me pause. And supposedly more effective for mild to moderate arthritis. As mine is apparently moderate to severe I may be past it, even if our insurance were to cover part of the cost.
I think mine was definitely moderate if not severe. I had pain round the knee area in bed even and that seems to have disappeared, perhaps it is all in my mind!!
I have x-ray confirmation of the level of OA, which is one reason why it's so hard for them to find a brace which will be truly helpful to me. I've just ordered a new kind of walking pole, a variant of Nordic poles, which make it easier to apply pressure to the poles and relieve pressure on the knees with each step. I'd sort of started doing that automatically with my poles, but it's hard on the hands, so I'm looking forward to having the new ones. Have to stop wearing the brace for a few days as the material it's made of gives me a rash. When I start wearing it again I have finally been given a "sleeve" which should be small and tight enough that the brace doesn't easily slip. I doubt your experience with PRP is all in your mind. My pain has been so bad at times I've had to resort to crutches although only for a short period of time and while I'm at home. It's like knives stabbing my knee with each step. And then it goes away. I do have to stand up with caution, making sure the knee is in the right position before I put weight on it. 😆
I had the knife stabbing feeling. I hear a lot of people speak highly of Nordic poles. I have severe tricompartmental degenerative change according to the xray. Looking it up it sounds severe, but not sure.
I completely understand your frustration. I can't get anything done. Every room in my house is a mess. I work for awhile and then have to sit and do nothing. Then, it takes forever to get motivated. It's just so much easier to sit on my bed. I won't hurt that way either. The most irritating part for me is not being able to be a good grandma with my grandkids. I just can't keep up with them and am really to exhausted to have them over very often. My daughters don't understand we really have a disease that causes this, I'm not being lazy!
Hi Amber. I totally understand the lack of motivation. I am currently on 5mgs after getting down to 3mgs and feeling awful for a week. My house has never been so messy - and I don’t really care!! There are lots of things I could be doing but I don’t. Like you I care about being able to keep up with my granddaughter but lockdown and Covid has put paid to that. I long to be able to spend time with her and share hugs and kisses as we used to do. However as the say, ‘all things must pass’ and I am forever telling myself to be patient. I am happy to ring up old friends to see how they are coping with lockdown etc. and we are all the same and they don’t have pmr!
My experience after 2 years and down to 2.5mg is that tired and little energy at every step. Now after 2months at 2,5 am feeling a little less lethargic. I keep going slowly and hoping for the best. I think it is the nature of this disease to tell us to be patient. Frankly, even if I were to get to zero, I don't think I would ever be as I was before onset. I am thankful that I can move without pain, even though still have much discomfit
I am at 4.5 mg prednisone and am really frustrated at the lack of energy/motivation to do normal stuff. Some days I find the task of preparing meals downright annoying. I need a nap after lunch; plopping down on a soft chair more appealing than anything else. Every time I try to go down 1/4 mg it gets worse. I have absolutely no PMR symptoms though I get assorted aches after overdoing a task. So I am “parking” at 4.5mg until this improves. Afternoons are better and I can then do a little more.
I spoke too doctor about mine said too go back up too 5mg feel so much better been on 5 for 4days now doctor ringing tomorrow so see what they say. The low energy is an awful feeling I can sympathise. Hope you get sorted. I still think it's my adrenalin but will have too wait and see.
Big Dick Energy!! WHAT THE!!
When will energy return?
Blood test results 
No antibodies update
