I have given in ,as we all have too eventually,and have stopped rushing to come off of the Prednisolone before the PMR has finished with me.But now I think I might be taking too much because sometimes I am so 'sprung up'. I can work a ten hour shift four days a week followed by one or two exercise classes and still have energy left.I do sometimes get beyond tired mid afternoon but I have to keep working and it does slowly pass.Then on those days of high energy I can not sleep despite being exhausted.
I am on 7 mgs and on the DSNS reduction to six and a half mgs but am getting aches and pain at the base of my skull which always seems to happen when I reduce.I have been on 7mgs for 6 weeks now.
If I do get to sleep ,the muscles running down the back of my thighs and the muscles at the back of my upper arms feel heavy .This strange feeling isn't really painful but it won't allow me to sleep and wakes me up about 4:30 am then I can't get back to sleep.The heaviness stays with me thought he day. Is this another indication of too much Prednisolone .I think my last ESR was about 16.
As always I would value any advice.Thank you .You are all amazing people and it's really wonderful that we can support each other with knowledge ,kindness and first hand experience.A great many of us don't have anyone else to support us.I feel so lucky to belong to this group.
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Dewdrop456
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I doubt you are on "too much" pred - in the sense of the PMR at least and that is what is the Big Fat Controller at present. However - some people are very sensitive to pred and it is a boost of the same type as "adrenaline rushes" and that will probably account for how you feel. In some ways you should be grateful - most of us find we stagger from job to job desperate for a boost.
The aches at the base of your skull are probably withdrawal symptoms - again because you are so sensitive to the pred. I'd put the 4.30am waking down to the release of the cytokines that create the inflammation that causes PMR symptoms - they wake me.
When do you take your pred? Have you tried splitting the dose? 2x smaller amounts MIGHT have less effect in terms of side effects and it MIGHT avoid the "ping" at 4.30am. Just a thought.
Dear PMRpro,thank you ,that all makes perfect sense about the Adenaline rushes and the withdrawal pains.Unlike at the beginning when I used to tolerate the pains in my rush to zero mgs , I now panic about flares and stop the taper too quickly.I have to find a happy medium!
Also I thought I saw something recently on here about the Prednisolone making someone have a 'heaviness ' feeling in their thigh muscles which is the other thing that bothers me nearly all the time.(and of my upper arms).Could that be too much Prednisolone?I understand what you said about the timing of the cytokines which I completely agree with ,but why then does the heaviness never leave me do you think?
I have been thinking of splitting the dose. What dose/timings would you recommend ?I normally work between 8am and 6pm.Followed by exercise classes.I am on 7 to 6 and a half mgs.
I to have the very same symptoms...heavy and painful thighs/legs and upper arm muscles Down from 20 mg in May to 13mg now..getting harder to reduce due to pain if less. Managing half mg per month.I take 10mg evening and 3mg early am this gives maximum relief without too much of a high.....50/50 split not enough to control morning pain and not enough energy in day time. All at night too much buzz but not enough longevity for pain.
The usual split is suggested as IRO 2/3 and 1/3 but everyone is different in their needs and how they respond. Generally, the earlier in the day you can take the bulk of the dose, the better you tend to sleep at night. But some people do best taking their pred immediately before bed. You really do have to experiment a bit.
Like Nick, I'd be inclined to wonder whether your thigh/arm mucle heaviness is just you overdoing it a bit in terms of how you use them. They do remain affected by the actual autoimmune disease process, the dripping tap filling up the inflammation bucket, so will get tired more easily. Pred doesn't do anything to that.
OK.I guess I will have to experiment.At the moment I take the whole dose at 7am.I wonder why I am often 'hyper' in the evening?Surely the Prednisolone should have started to wear off by then.If I was to take any at night won't that keep me even more awake ?
Everyone is different!! Not necessarily - if it takes a while to get into your system, you may well get to sleep first and then the effect will be wearing off by bedtime. I'd have to write for ages to explain it - oh for f2f!!!!!!
🤣🤣🤣. I’m in East Anglia - so LOW! Grey skies and a modest 6°! Two thermals and thinking of buying an Oodie! Grandchildren love them! Thick fleecy tops with a hood! Keep warm!
The heaviness that you feel is most likely inflammation in your muscles or tiredness as a result of your high activity and that would indicate that you may be too low ( not too much) of the dose of prednisone. As far as splitting the dose, since you start your work relatively early, I would try 4mg late in the evening ( just before the bed time) and the rest of the dose in the morning. Keep in mind that everyone is different and you may have to experiment with splitting the dose and timing until you find what works for you.
Thank you. It's so tricky.Apart from often being unable to go to sleep and then being woken about 4ish with the heavy muscles ,I don't get any actual pain at night.I'm worried that if I took the Prednisolone before I go to bed I'd get even more 'hyper'. What do you think about that?
Is the idea of splitting the dose supposed to spread it out more evenly?
As I said before, everyone is different. YOU have to try and find if it works for you. Don't be afraid to experiment; as long as you keep SAME dose over 24hour period, you are going to be OK. For me it was magic when I split the dose. Morning stiffness was gone and I can start the day fresh. You already know that body naturally sheads cytokines about 4-4:30 AM. The closer you take meds to that time, more effective they are. Since it takes 2-3 hours for pred to get to max concentration in the blood, ideal time to take non-coated version is 1-2AM, so when the cytokines "show up" pred is ready to neutralize them. Or you can take meds when you wake up at 4ish.
As far as heaviness that you feel in you muscles, I thought about it and I think it probably is related to your exercise. My guess is that it is done at too high level for your condition. I am also very physically active person, but it took me almost a year of gradual increase of intensity to get back to pre-PMR level. If you went back to gim and picked up at where you left before you were diagnosed with PMR, then that would be a reason to feel heaviness in the muscles ( just guessing).
Several factors are at work. PMR is limiting blood supply to muscles. Predinisone has changed chemistry on how proteins are rebuild in your body. They both impede recovery. On a top of that, pred will numb muscle pain while you exercise, so it is easy to overdo it. Bottom line, drop the intensity to "easy" level until you recover and then try to gradually increase intensity over long period of time. Good luck and post here if you have more questions.
Thank you very much for your time and thoughtfulness.You have reassured me about the timings of the doses.I was worried about only taking part of the daily dose in the morning in case my body thought that was IT for the day and decided to stage a flare! I am normally awake quite a bit in the night so I will start my "Split experiment " in the morning.Perhaps I will take 3 mgs tomorrow morning and 4mgs during the following early morning about 2ish.Although I was wondering if the Cytokines just get released once a day in the 'wee hours'? If so why would I not take my full dose then to hit them with?I would really appreciate an answer to this point if you have time.
Regarding the exercise,I rarely go to the Gym.I take part in exercise /dance classes .Any number from about 3 to 7 each week .They are all different styles so different muscles are used. I can put in as much or as little effort as I want (but it's hard to restrain) I used to take more but my work hours have increased.The muscle heaviness could possibly be due to the exercise but it doesn't seem to vary according to how many classes I take.Its just mostly present.Anyway thank you for your advice.Take care.
about the cytokines.. Yes the body shed them at 4-4:30, so the perfect time to take non-coated pred would be 2-3hours before. The problem is that some people get too wired up with that pred, so they cannot sleep. Compromise is to take 1/2 of the dose before going to sleep and the rest of it in the morning.
If you are taking pred currently in the morning, the way to ease into split dose is to take your normal dose in the morning, then that evening take additional 1/2 dose and the following morning take again 1/2 of usual dose. Then you keep taking split dose. In spite of your concern about taking too much pred, it is safer ( as in this example) to take extra pred then to take less then you need.
Dancing is good exercise, but keep in mind that you may not be able to do as much as you did before PMR. Try more "tango" and less fast dancing :), see if it helps muscle pain/heaviness in your legs.
Diagnosed with PMR 12/3016. I have just arrived at 3 mg and plan to stay here for a few weeks before starting another 52 day taper. Since about 7 mgs, I find taking an arthritis strength 8 hour acetaminophen aka Tylenol at bedtime really helps me sleep better.
I don't think I'm underdosed on Pred. I do think that old bits and pieces of age related arthritic changes and my tendency for developing myofascial pain when I overdo are resurfacing. It is so hard to know when doing is really overdoing. For me acetaminophen helps a lot.
Thank you.Its all so complicated isn't it? So many variables,what with constantly altering the dose,flares,withdrawal pain,other physical illnesses,stress and even the weather!
I'll bear your suggestions in mind thanks.Take care.
Hi Sorry to hear that you are having a tough time. I found that the only way I could reduce my pred was to go down half a mg at a time. And stay on the lower dose until I felt comfortable, then drop another half a mg. But you do sound very sensitive, might be worth bending your consultant s ear to check that it is Ok to split your dose. I got told not to.
Oh OK.I have been reducing by half a mg four to six weekly. This month I'm loosely following the DSNS method. I will ask my GP but I don't think she understands PMR very well.Thanks for your concern.Im alright ,it's just as I said above,there are so many variables to take into account aren't there?
I am sorry to hear you are not well. I would have a doctor assess it. A few things could be going on: stress, another disease, needing something to counteract this side effect of Prednisone, or possibly trying to lower your dose. A doctor would be able to advise you.
I have GCA/PMR and Fibromyalgia. Studies are suggesting that an overactive immune system can lead to Fibromyalgia (not proven, but a possibility). It is worth a check. Fibromyaliga symptoms are: not able to fall asleep, very tired, and pain. Also, it sounds like you have too much on your plate. Be gentle with yourself. We do suffer from a disease. In this crazy, fast world our bodies can only handle so much. I have learned to say “No” when I am feeling tired or overwhelmed. We are our best friend and must take care of ourselves. I hope your doctor can sort it out. I hope you feel better soon!
Thank you for your kind words and understanding .I have thought about Fibromyalgia but I don't think I quite fit it. I do have so much to think about at the moment though : I am starting a new job and will be working 12 hour days but only 3 a week. My divorce is half completed and the house is being divided. I have three of my sons still at home and two lodgers one of whom has had an accident so I am helping him.As well as attending the exercise classes and normal chores.But that's the sort of busyness that I'm used to!
I have definitely had to slow down a bit.But I also have to carry on because it's my responsibility to manage it all.I know I have a disease but don't worry about me as I don't feel ill as such.Its just this muscle heaviness that I was curious about.I will talk to the Doctor but I don't think it's really her field.
An interesting question that- I take my Medication in the morning, as follows, at least an hour before I eat, I take Tacrolimus- my Primary anti-rejection/ immune- suppression Drug. This has a duel effect, it helps me to not reject my Kidney Transplant (that I had in July 3013) and also, in conjunction with other Medications, controls my Vasculitis. After breakfast I take Prednisolone, along with my other drugs. I take no other medication, after this, until the following day. For me this approach, clearly DOES work. However, since all our bodies are different, other people may well find, that Splitting the dose gives a better result. A friend that I had, some years ago now, suffered from 'Dreadful Constipation'. The Medications, she was given, were clearly NOT working....Until she started to take them at Lunch Time, instead of in the evening. Six months later, she was an Entirely Different and MUCH relieved lady!
So really, it is a Case, of finding out what works best For You. I'm sorry that I can't be more help, to you, in this regard.
Thank you Andrew.I will have to start to experiment ,I suppose it's the only way.The trouble is there are so many variables ,see above.It makes it hard to assess anything because everything can change from one day to the next.Nevermind.
Thanks for your advice.Good luck with your extra tricky journey.Here's hoping we all have happy time at Christmas and make a lot of progress toward recovery next year.
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