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Symptoms worse as day goes on

Posted , 15 users are following.

veronica81435
veronica81435

hi all again , can I ask if anyone's symptoms get worse as the day goes on?  . Because even though I do get stiff in the mornings it's seems from late afternoon pains get worse as day goes on and I struggle with day to day chores which I only can do in the mornings , thank you . 

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  • diana21296
    diana21296 veronica81435

    Posted

    Hi, I have just joined this very helpful site and would like to relate my experience with PMR hoping I can help others too. Thanks everyone. On 30th Nov I started to get very painful hips just from 5pm onwards and all night.  Take paraceptamol said GP. With Christmas approaching and with all the symptons of PMR upon me, on 22nd Dec we went to A&E where I had 35 bloods tested plus hip Xrays and chest Xray and was there all day.  Al lnormal apart from 2 raised bloods, ESP and a shockinly high CRP level (normal 0-6, me 63!) Later my GP said she has never treated anyone with such a high level as most people are only  slightly raised if at all.  I felt glad I went to the hosp as they were so thorough and I was put on 30mg for 4 weeks. Felt much better for Christmas week as could then sleep pain free till 5am. Rheumatologist told me to always take the Pred with breakfast as otherwise could disrupt sleep at night but I see some people actually do successfully split their dose. Now the pain in the night is starting at 1am when I take 2 paraceptamol and another 2 around 5am.  My GP is very helpful and has recommended Amitriptyline, 10mg taken before bed to help me relax and go straight off to sleep as I had been lying awake most of the night on my back in bad pain all over.  For the last 3 nights this has really helped me get a better nights sleep.  She said sleep is important to fight the inflammation in the blood. The other thing I have researched is Diet and self help with this horrendous condition and although each case is totally different, I believe that to a certain extent the body can help itself.  My son rang a friend in New York who had PMR 24 years ago in her fifties and the first thing her Reheumatologist said was No Sugar (apart from naturally in fruit) to avoid diabetes, No Added Salt (to avoid getting high blood pressure), No Alcolhol, No Caffeine and drink plenty of water and stick to a low calorie diet.  I have cut all these baddies from my diet and now drink the odd decaf coffe, herbal teas and pints of water.  He also said it is important to keep to a low calorie diet so avoid putting on any weight if at all possible. I have kept to this regime  as having such high CRP levels I want to do all I can to try to beat this and improve my quality of life which is nill at the moment.  With 3 friends being pain free and back to their normal lives within 48 hours of taking Pred, I felt quite desperate to be leading such a life full of lethagy and virtaully housebound.  I have now started to ask different friends round for coffee for an hour or so some mornings to keep me cheerful and by 12 I am moving fine and look completely normal although really tired, so I think they find it hard to believe I am so crippled when I get out of bed and can hardly walk. It is now 4.30ish and I feel fine after a sleep on the bed for 1hr 20 mins with the electric blanket on low.  I am lucky in having a good house husband who will do anything I need doing to keep the home running smoothly but I find the Pred make me very snappy in the mornings as the pain is so bad.  I am always apolgising to him, poor man.  But in the evenings I am quite back to normal and look forward to cooking the evening meal. On Wed I have my first blood test with the GP and I get a telephone consultation from her on Thursday whe she will ask if there is any improvement.  Answer NO.  I think I will have to stay on 30mg until I become pain free?? before starting to drop.  One of my local friends was kept on 30mg for 3 months, then dropped very very slowly completely successfully, he was still working full time and was off Pred within 2 years.  So if I have to stay at 30 I won't mind as I am using him as my inspriration!  I also looked on Amazon and have ordered a paperback Self Help book by a Dr who herself suffered PMR for a number of years and the reviews were great. When this arrives, I will read it and will put the title up on site if I think it is really helpful. I want my life back but know it will be a very long time before I do.  The Rheumatologist  said I would eventually be totally pain free on Pred but he had no idea how long it would take, so for now I have to be grateful for the pain free hours that I have. Thank you for reading all this twaddle but a problem shared is a problem halved!
    • EileenH
      EileenH diana21296

      Posted

      Why not try taking your pred earlier in the morning if you are wary of splitting? Many people wake early (sometimes because of the pain), take their pred and then settle down for another couple of hours, by which time the pred has started to work. Also, the inflammatory substances are shed about 4.30am, the longer you leave them alone the more inflammation developes, catch it early and it doesn't get so bad, less for the pred to do in the first place.

      Always bear in mind that everyone is different, you may never be totally pain-free even though others say they are. Your rheumy is wrong I'm afraid - some of us always have some degree of pain, whatever the dose. What you are looking for at present is about 70% improvement in symptoms overall in a week or two. The highish dose of pred may not help but I doubt it is the pred making you snappy in the morning - the pain does that on its own! Hence my suggestion of taking it earlier. A study found that the optimum time to take ordinary white pred to avoid morning pain and stiffness is 2am - so it is at its peak in the blood at 4am BEFORE the cytokines, the inflammatory substances, are released, and they don't even start to wreak their havoc.

      And men are totally different - in the way their PMR progresses, their response to pred and the rest of the course of their disease and patient journey!

      Is the book Kate Gilbert's? She isn't a medical doctor though.

    • veronica81435
      veronica81435 diana21296

      Posted

      my rhumatologist said the same thing . That I would be diease free . But as I'm on 12 mg i feel really achy . It's a funny diease isn't it . All the best with your recovery Dianna 
    • nick67069
      nick67069 EileenH

      Posted

      Hi EileenH,

      Would you mind expanding on this, please:

      "And men are totally different - in the way their PMR progresses, their response to pred and the rest of the course of their disease and patient journey!"

    • EileenH
      EileenH nick67069

      Posted

      They just are - no-one knows why.

      Far fewer men develop PMR )the ratio is somewhere between 2:1 and 3:1), it tends to be shorter in duration and they often manage with less pred/are able to do more for a given dose of pred. Whether it is they have more muscle tissue and/or it is better trained to do the sort of activities women find problematic or what isn't clear. Or is it hormones? Or expectations? 

    • EileenH
      EileenH veronica81435

      Posted

      Disease-free? If only!

      Some people aren't even symptom-free - and there are rheumies who will try to tell you that in that case it isn't PMR...

    • nick67069
      nick67069 EileenH

      Posted

      interesting... Lots of unknown...Thank you for the information
    • diana21296
      diana21296 EileenH

      Posted

      Thank you for this Eileen. Have only just see this post.  Yes it is Kate Gilbert - I got that wrong about her being a Dr.  Found the book very helpful and interesting.

      After reading in these discussions and being desperate on Monday I decided to split the dose, 20mg at 7-8am and 10mg 5pm.  Worked a treat and now since then have been totaly pain free. If I sleep lightly with no pain that is wonderful in comparison to not being able to turn in bed. and no sleep.  I now do not need any pain killers either so feeling very lucky.  My CRP level has come down from 63 to 38 in 3 weeks and today when I spoke to my GP and told her about the split dosage, she said "what a good idea".  I know it is trial and error but I would not have had the confidence to do it without the suggestions on line. So thank you to everyone re this wonderful tip. I am following a strict but healthy diet and have lost weight and blood pressure is low. End of next week I will ty dropping to 25 splitting 15-10 and see if I get any pain back.I want to do this slowy rather than try to rush it which is what the hosp wanted to do.  And I want my bloods to come down considerably as know that lots of PMR sufferers have only slightly raised levels if at all. So strange.   Many thanks. Diana

    • diana21296
      diana21296 veronica81435

      Posted

      Thank you Veronica.  Well I am now pain free on 30mg but only by splitting the dose since Monday. Best thing ever. Can now sleep and get out of bed in the morning with no trouble. Next week will try 25.  Yes, we are all different.  PMR is horrendous. D
    • EileenH
      EileenH diana21296

      Posted

      I'd suggest doing 2.5mg at a time - 2.5 done twice a week or 10 days apart gets you to the same place without quite as much shock to the system!

      As far as the blood markers are concerned - everyone is a bit different and it also depends how long you have had it and the inflammation has been stacking up. Really, keeping the reductions low until the blood markers are as low as they are going to go and your symptoms are stable is a good idea.

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