1. Community
  2. Bones, joints and muscles
  3. Polymyalgia Rheumatica and GCA

slept a full nine hours

Posted , 13 users are following.

margaret22251
margaret22251

I have found that since reducing my pred i feel more tired, i have had a busy two days, and last night went to bed at 11pm woke to go to the loo at 3, then waoke up at 8.45am never done this before, so i now know TAKE IT EASY when reducing.

3 likes, 21 replies

21 Replies

Next
  • pat38625
    pat38625 margaret22251

    Posted

    Hi Margaret, like yourself I have been reducing down to 10mg from 12.5mg and I am so tired, so tired that I don't have the energy to lift the phone and make a phone call to make appt, with dr.  Unlike yourself, I haven't been busy, I realy don't have the energy to do anything.  No pain as such but zero energy, I am putting it down to reducing that was 1st June.  Good luck.  Regards Pat
  • Sheilamac_Fife
    Sheilamac_Fife margaret22251

    Posted

    Hi Margaret!

    i think dare both at about the same stage. Last I saw you were reducing to 9mg using Eileen's DSNS method. Have you got there?

    • margaret22251
      margaret22251 Sheilamac_Fife

      Posted

      Hi Sheilamac not yet about another 7 days to do at nine, taking it slow as the last 5 days have been up and down.
  • Sheilamac_Fife
    Sheilamac_Fife margaret22251

    Posted

    There's no 'dare' in it!! That should say ' I think that we are both at the same stage' ...
  • carol20979
    carol20979 margaret22251

    Posted

    I am als o reducing from 10 mg am at 9 feel spacey and tired I started taking pred at 6 pm because I could't handle the side effects during the day. I am now in the process of SLOWLY backing the dosage to the morning.I have found from my mistakes that any incremental change you make while taking this drug has a huge impact  on how you feel.Slow is always the way to go.If you research the adrenal gland and see all that it controls in your body you really get a better idea of why you feel so bad when you make changes in dosage or time taken.Oddly Drs don't warn you of the side effects at least mine didn't just take this and then reduce The dead slow method is best after you get to 10.Good luck just know that you are not alone on this journey.
    • ptolemy
      ptolemy carol20979

      Posted

      When I asked my doctor about the side effects when first prescribed pred, he said there were too many to mention!
    • EileenH
      EileenH ptolemy

      Posted

      There are 82 listed side effects - we reckon we've identified at least 2 more that we can't see...
  • Sheilamac_Fife
    Sheilamac_Fife margaret22251

    Posted

    I take my Pred after food at about 9pm and found that I was less tired in the day and less stupid! Since I started this latest reduction to 9mg I have been going to bed earlier and sleeping much longer, anything from 9-12 hours!... Hahaha... It's great! It's not every night but enough to bring me great joy...
    • margaret22251
      margaret22251 Sheilamac_Fife

      Posted

      stop bragging, i take my pred at 8.30am as thats what the doctor said, i dont feel spacey but just tired, also i have noticed some things have dissapeared that i got at 10mg, fingers crossed, but i still get pain and aching in right temple, ohhhhh i noticed my cheeks ache as well thats new.
  • gail2910-US-MI
    gail2910-US-MI margaret22251

    Posted

    I am reducing from 10mg to 7.5 and have never experienced the fatigue and depression end of it before. Fatigue frankly has not been a part of my PMR journey previously and I "feel" this is Pred-related. "Normally," I would exercise more to boost mood but that is not currently an option. I appreciate the reminder that this is related to chemical that is in my body and that it will balance out. I have always taken Pred at 8 a.m. Never thot about taking it in the evening. It gives me insomnia. I wonder if I switched to evening if it would help. Seems counter-intuitive. (how does one switch)
    • Sheilamac_Fife
      Sheilamac_Fife gail2910-US-MI

      Posted

      That's quite a big jump from 10 to 7.5.  Much more than 10%. Maybe that's why you aren't feeling so good. I am only going down to 9. Feels enough to my body. 

      I did my switch of times over 2 days. someone else on the forum suggested it because my brain fog and fatigue became a huge problem in the afternoons. It has worked for me. I still have a degree of fatigue and that is variable but the brain fog isn't nearly as bad. I have to catch the right time to go to bed though otherwise the pred will stop me from sleeping. Hope that helps.

    • EileenH
      EileenH gail2910-US-MI

      Posted

      Yes - I agree that 2.5mg when you are below 10mg is too much to reduce at one time unless you are using the "Dead slow and nearly stop" approach to the reduction and with a 2.5mg drop slowing it even further. 
    • gail2910-US-MI
      gail2910-US-MI Sheilamac_Fife

      Posted

      Thank you for your thoughts. I appreciate your input. I am mindful of the reduction rate being a bit fast. I had actully been at 9mg for a few days and had been up to 10 for only a few days time before that. I had believed I was experiencing a relapse in PMR sx (after being at 2.5 for quite a while) following an episode of bad overuse running through two airports following vacation. The nurse I talked to on the phone supported that belief and recommended increasing Pred. Not unreasonable. When I actually got in to see my Rheumatologist, he said "I don't think it's PMR but rather bursitis and tendonitis." (based on phys. exam and labs) So we are treating it with NSAIDs and an trochanter injection. I am actually doing better so hope his dx is correct. Since Pred is not effective at treating tendonitis, there is no reason to be on higher dose of Pred so I was tapering at a faster rate than I had the first go round. My understanding is that this was okay due to minimal time at higher dose.

       I don't like having to combine NSAIDs and Pred so to me it makes sense to reduce to safer level of Pred. I am not 100% confident of what I'm doing but I am thinking it through and trying to analyze what is best at this point. in conjunction with a doctor who frankly seems quite willing to let me call the shots. *~* I see him again July 1.

       

    • EileenH
      EileenH gail2910-US-MI

      Posted

      Fair enough! And quite right. Hope the bursitis/tendonitis improves soon - you have my sympathy because that for me was the worst part of the PMR at the beginning. It took a few months to fade with oral pred but now I have a doctor who will use cortisone injections when needed.
  • EileenH
    EileenH margaret22251

    Posted

    The reduction of the dose is quite an insult to your body - and it will protest in most people. Some people are luck but generally the slower you can do it, the smaller the steps, or at least the % change in the dose, the better. It helps to keep it at not more than 10% of the current dose - that is 1mg at 10mg, 1/2mg at 5mg. And for some people this will hapen with every dose reduction, not just below 10mg - hence the dead slow and nearly stop concept right from the start at 15mg. It avoids the shock to the system - and if it takes a week or two more does it matter if you don't spend a week wondering why you feel rubbish?

    Once you are below 10mg/day you are into the realm where your body has to wake up and do it for itself again - it's probably nearer 8mg but for some this stage will come sooner. And that causes fatigue - give your body a chance.

    • margaret22251
      margaret22251 EileenH

      Posted

      I will thank you , i am going on holiday in four weeks and dont want to be reducing nera it would it be beneficial to stay at 9 while on holiday.
Back to top
Next

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.