AM poorly ....by noon better...every day !!?

I have had PMR for 4 years now ( symptoms started 5 years prior to diagnosis). I have been taking prednisone since diagnosis by Rheumatologist July 2013 approx. I have tapered down from original starting dose of 20mg. to 5-6 mg. at present. Every morning for years now I wake up feeling like "rubbish", stiff and have moderate pain. As the hours pass on , I very slowly start to feel human again and more flexible by 11am to Noon. These Morning symptoms happen exactly the same way almost every day. By 3 to 4 pm I get very fatigued and stiff again and wish to be able to go right to bed. ( I usually do not though). I take my full dose of Pred. between 5- 6 AM with milk and crackers and then back to bed for an hour.

I am curious to know from other PMR " persons " if this daily experience of symptoms occurs with them also. I especially would like to know what the medical / biologic dynamics might be as to why this happens. I would really like any input .

I appreciate everyone who participates on this Forum. Where would we be without your faithfulness to help all of us who are in need. Thank you so much !

Suzanne

40 Replies

oldestnewest
  • Hi Suzanne, my symptoms follow a similar pattern. It doesn't seem to matter when in the morning I take Prednisalone, although I've never managed 4 am when the body is apparently shedding the inflammatory substance Cy something's.

    I feel properly ill in the morning like a viral feeling and often think the day will be a write off. An hour or so later after Pred.I feel better. Then at around 3pm I have to lie down, if I possibly can, with a kind of woozy exhaustion. I can then feel almost normal in the evening.

    It doesn't make sense to me either. It must be PMR poking through.

    Interested in any replies you get on this.

  • SJ,

    Cytokines 🤦🏻‍♀️ I always want to spell them incorrectly!

  • Cytokines Cytokines Cytokines. It's one of those words for me like Unicorns......oddly.

  • Pray tell about the unicorns, they never appeared for me during GCA - hate to think I missed something! 🤔

  • Hi Shelfield Jane... Thank you for sharing with me your PMR symptoms, which closely resemble mine. Hearing the description of your day is very helpful . Not feeling alone in this often perplexing illness gives me some comfort, hopefully for you as well. Best wishes during your PMR journey.

    Suzanne. ( I'm in Calif. , so just starting my Sunday AM)

  • Suzanne,

    3:00 is my worst time of day. I too take my meds around 5 or 6 am. I am on 60 mg with GCA and PMR and literally can't stay awake. I need to nap. It was tired before the prednisone at this time, and it does seem worse now that I am taking the prednisone, yet that could still be the progression of the disease?

    Hope you feel better and listen to your body!

    TJ

  • HelloTJ.... thank you so much for sharing with me your daily journey with PMR /GCA. We all seem to have similar symptoms during the day even while taking pred. ( I guess that can be a whole different "story" ....quite personalized as PRM pro has presented). You TJ...have to be on such a high dose of Pred. because of GCA. I always feel guilty of my complaining when I JUST have PMR , at least so far ( knock on wood)! Your struggle is probably quite great. Sending Best Wishes to you on your journey with PMR /GCA.

    Suzanne

  • Hi Suzanne457,

    If the symptoms had been fairly recent I would have suggested that it's your adrenal glands not kicking back in, but as you've had them a long time time maybe not. Maybe you should request Synacthen test to check your adrenal function.

    It does sound as if you're taking too little Pred for your symptoms, or perhaps you're one of the unlucky ones whose body doesn't process the medication as well as others. Have you spoken to Rheumy or GP about this?

    Sorry can't be more positive.

  • Thank you D.L. , your comments are very helpful . I am an avid Forum follower and find your suggestions always so very useful. I will ask my Rheum. about a Synacthen test when I see her next in two weeks. I do wonder sometimes though, if my Adrenals could be forever asleep?! Best Wishes to you ....

    Suzanne

  • Think mine will never wake up !!! Lol

  • Hi Margaret....I guess we both feel the same about our very soundly, asleep Adrenals . I hope we are BOTH wrong about that though. I quess lots of patience is needed now. Thanks for your reply.

    Suzanne

  • I think mine will never wake up lol lets hope we all get better one day or specialists find a solution. (Some hope )

  • SJ has mentioned the cytokines that are shed in the body at about 4.30am - it is they that cause the new dose of inflammation each day that makes mornings worst. All the pred does is relieve the inflammation - it does nothing to stop the autoimmune disorder that makes these cytokines attack our bodies and cause the symptoms we call PMR so that part continues and when you reduce the dose of pred you are looking for the lowest dose that manages them successfully.

    A study found that the optimum time to take the pred to avoid the morning stiffness is about 2am - the peak blood level is achieved then just before the cytokines are released and they do not get to cause the inflammation in the first place. There is a form of prednisone that you take at night and it releases at 2am - I use it and I never have any morning problems, I feel as good them as at any time later in the day. Unfortunately it is only available privately in the UK and it is pricey.

    What you describe suggests to me that the antiinflammatory effect of pred for you is not lasting anywhere near 24 hours. It lasts from 12 to 36 hours depending on the person and to me it sounds as if it barely manages the 12 hours for you. Many people split their dose to manage this better - taking about 2/3 in the morning and the rest later in the day. For you I suspect this approach might leave you feeling better in the early morning. I also wouldn't be surprised if you have reduced slightly too far.

    Are you on plain white pred? I (and a rheumy) suspect that it is possible to use the enteric coated form of pred which is available in the UK on prescription and take it at night so it is working in the morning - because while plain pred starts to work in a couple of hours for most people, enteric coated can take up to 5 or 6 hours or even more to work. If you take it in the morning it can take ages to work. And then there are some people who don't absorb the ordinary pred well and it takes a long time to work for them too. A bit of experimentation with times and splitting often helps.

  • Hello PMR pro......Wow , what an abundance of good information you have provided for me ! Thank you SO much. I am going to print your post out and make some plans from it to try some new approaches for my on going aggravating daily symptoms.

    I live in the US ( Calif.) and I take the ordinary white pills. I never have been offered anything else. I will ask my Rheum. when I see her in 2 weeks about Rayos which you have mentioned in previous posts. I will also split my dose as you have suggested between AM & PM as that makes sense to me. It is quite possible, as you and D.L. both have suggested that I need to up my dose of Pred. to make an attempt at managing these unwanted PMR symptoms . I did wake myself early around 3am for several weeks and took my Pred. dose then. I did not notice any significant change to the bad symptoms except that I "faded" EARLIER in the day. Your point about Pred. not staying in my system long enough seems "spot on " ! Thank you again for giving me a "jump start" into maybe finding some symptom relief for myself .

    Best Wishes in your journey....... many thanks for your help,

    Suzanne

  • The pred stays in the system a similar time for everyone - it is the length of EFFECT that varies and your saying you faded earlier when you took the tablets earlier does seem to confirm my suspicion. You MAY find that splitting the dose you are on is enough - but I wouldn't assume that. But there is no virtue in taking too little pred and being in pain/unable to function. If you need another mg or two I wouldn't turn the option down if I were you.

  • Thank you so much , PRMPro for your excellent words of wisdom. So it is the length of "effect" of the Pred. in the body that is not necessarily the same with everyone . I had not considered that. Hmmmm..interesting fact. I will start splitting my dose between am & pm as you have suggested . If that is not sufficient , I will up my dosage...again. I moved my dosage up 2mg. 3 weeks ago and I did notice some 'inconsistent ' improvement. But I am prepared to move on with a different plan if need be. The whole dynamics of PMR/ GCA /vasculitis condition is very interesting to me....aside from the fact that I am personally involved!

    ( it has been mentioned already many times but I want to add my feelings also of sadness for the families who are suffering from the Manchester killings)

    Suzanne

  • Hello similar to yourself I

  • Hello there. We sound similar. I was diagnosed just over 3yrs ago, now on 7mg, I take them between 7am, and 8, chewing a marie biscuit first, but I have a hip gone which makes the pain worse, not sure which is the worst. PMR is in my shoulders, generating up through the back of my head, really unpleasant, also hip girdle, legs, and feet.

    What I find amazing, why there is not more research on the subject, GPs, are just keen to palm everyone off on steroids, and to hell with the side effects.

    My PMR came overnight, hoping it will go in the same way. I wish you well.

  • Hi Simfionia55....Many thanks for your post about your experiences with PMR ! You have a lot of oochy , painful areas We are all very similar in so many ways during this very unwanted journey, aren't we ?! Yes, I too wonder why our dedicated medical professionals seem to have over-looked this fairly common disease of PMR . I do think it has to do with PMR / GCA mostly affecting Seniors....making the disease seem not so "sexy". My Rheumatologist actually SAID this to me (she is an exceptionally good Dr.) I live in Calif. and believe there are fewer people living here with these diseases ....not sure why....but the U.K. seems way more SAVVY concerning these Vasculitis diseases.

    Best Wishes in your PMR journey,

    Suzanne

  • simfonia55. Can I ask where you live, because outside S.Africa, I haven't ever heard anyone talk about a marie biscuit?

  • karools16, just so you know, we have marie biscuits in Australia too :)

  • I miss them in the UK. Rich tea biscuits are just not the same.

  • They are available in the UK - Tescos list them. They claim to be available all over the world...

  • I will certainly look out for them in Tesco!

  • Sainsburys list them too...

  • I maybe should have said Rich Tea biscuit, but any other plain will do.

  • Yes, but it was the Marie that stuck with me.

  • I,m exactly the same, wake up and struggle to get out bed , after a few hours I get more mobile , and of course every doctors or hospital appointment seems to be in the afternoon when I,m at my best and I have to try and describe how I have mobility problems when it would be great to just show them .

    its good to hear it's not just me.

    cheers

    Nev

  • Hi Nevb..... Thank you so much for your reply and sharing your PMR morning struggles with me. I am getting many replys on this Forum from people experiencing similar difficulties....seems to be comforting to know I am not alone....you too ? Always wanting of course , the very BEST outcome for everyone on this journey.

    Wishing you a speedy recovery

    Suzanne

  • I was exactly the same so now take my Pred in the evening between 8-9pm. Am now able to cope in the morning. Good luck on your journey.

  • Hello rlake...Thank you for for letting me know that you are taking your pred. dose in the evening. I am glad that this change has helped you. Taking pred later in the evening has been suggested by many on this Forum , so I do plan on giving it a "go"!

    Wishing you the Best on you PMR journey,

    Suzanne

  • I was the same too, but now take my Pred at 11.30 p.m. and feel fairly O.K. in the morning. Still glad of a short rest after lunch though and then can go on until the middle of the evening. After that my legs, shoulders and arms start to ache, but I don't need to be active then, so its O.K.

  • Hello Joan-E-D....thank you so much for your reply. I am very glad to hear of your success with taking your Pred dose later in the evening. So many people do find that routine successful so I definetly will give it a try . So you now have less of a struggle in the AM with unwanted symptoms by taking your COMPLETE dose of Pred @ 11:30 PM . Best wishes for your continued success !

    Suzanne

  • Hi Suzanne457..wow how amazing that so many PMR/GCA sufferers feel the same as I do during the day..I have tried every way but which way to take my prednisolone at different times so as to not have the brain fog and feel uptight..The morning stiffness is unbearable at times. I have tried taking it in two halves but because I am still on a fairly high dose ..15:05mg after a dreadful winter of awful problems I am taking 14mg with my Breakfast and then late morning the remainder but my new lovely GP is allowing another lmg leeway until I see her again in a months time after having Blood Tests done ..IF ONLY I could have had this lovely GP a long time ago I probably wouldn't have the problems that I have got ,I waited all winter for her to come back from Maternity Leave.. l long for my little afternoon rest and sometimes i do sleep for an hour or so. I saw this GP Monday and she had time and patience for me and said she couldn't cure my PMR but we can tackle the other problems around it to help my quality of Life .I would like to say to you and to All the lovely people on this Forum to keep going to your GP's and Rheumys Not to be fobbed off ..ln the past I never asked questions..I trusted my Medical team but l was never put in the picture on how my PMR may develop even when they saw I was struggling to walk.Thankfully now I am under the care of a Good Rheumatologist and now an understanding GP .. Take care and Good Luck on your PMR journey trish29

  • Hope she isn't having any more infants...

  • Hi PMRpro ..I've just woken from a little nap and you've made me have a giggle ..I said to her on Monday ..please don't leave the Practice and she said her Family is complete with 3 boys ,but she said she might get kicked out because she takes too long with each patient and that 10 minutes isn't enough time..I so trust her and we've already discussed the way ahead. So here's hoping ..trishxxx

  • Hi Trish....so nice to get your reply! I do appreciate you telling me about your PMR day....so much like mine and what others on this Forum experience. Like you, I keep pursuing the hunt for the magic "formula " that may make my daily PMR life more tolerable. There have been many good suggestions on this site that I intend on giving them a go and some I have already tried. Seems that you have done the same. I was just thinking today after my usual morning of feeling yucky, that it must be the actual pure autoimmune illness (PMR) that causes the fluey feeling ,awful fatigue , foggy brain etc and not necessarily the inflammation . The inflammation is what the Pred supposedly takes care of which helps aches and stiffness. ???? I could be way off with this thought . I am sure that someone will come along and straighten my ideas out if I am too far off. So I wonder how much help the Pred is for the more pure PMR / autoimmune symptoms only.

    I am happy and encouraged that you have found yourself an amazing and dedicated Rheum. & GP. Keep us updated on how your Dr. visits are progressing. I will forward to a your report.

    Wishing you only the Best during your journey ,

    Suzanne

  • All the pred does is combat the inflammation - so relieving the pain and stiffness really, nothing else. Like taking Lemsip to soothe the sore throat and sniffles of a cold, but the cold carries on...

  • Thank you PMR pro for your always helpful info. You are providing to us, on this Forum the help and advice that should be coming from our personal medical providers! But no more whining from me....we have you !

  • Hi Trish, oooops...it should have read..... " I will look forward to your report" back to us. (Suzanne)

You may also like...