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Good morning, afternoon or Evening❤️

I sometimes feel like I am asking to much, but I know I benefit from questions I see as well as my own, so I hooe I am  giving as well as recieving from this forum.

If you know you are going to have a full day, or have an evening, you want to engage in and  enjoy, do you cover with bit of pred , or smaller?

Conversely, I notice today after a longer night out then usual  I have some mild pmr symptoms. 

.Should I boost or just lay low today and rest, to see if I recoop.? I would rather do that.  I know we cant use this like tylenol and consistency is important.  hoping ti decrease tues from 25 to by 2.5 . 

Getting a wee bit better at deciphering pmr/ gca! from pred symptoms , thinking was blaming too much on pred.

Thoughts?

Wishing all well,

Gina

 

0 likes, 25 replies

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  • Posted

    I think a lot of people probably DO take a bit extra if they know they are about to have a hard day -  but personally the only time I do that is for travelling across time zones. It does help some if you rest in advance, not try to tack on another couple of hours to a normal day. If you have confused pred and GCA - maybe you are also underestimating what fatigue can do to you.
    • Posted

      yes I believe that to be true. and I would  like to avoid boost unless a high stress event occurs as Nefret says in next post.     Day of rest today,

      I put a ? by GCA due to symptoms, but neg biopsy. But treating as such with higher doses of pred based on symptomology 

      thanks 

      gina

  • Posted

    Usually if I know I have a strenous day/evening ahead of me I try to rest both before and after the event which helps. 

    If I have to respond to any emergency, I might take a little more Pred depending on the type of emergency I'm having to deal with.

  • Posted

    Good afternoon from Scotland, Gina. I sometimes find that I am more tired and a bit achey after a longer day. What I have noticed is if a longer day consists of sitting about more then I feel achey. I try to be a bit more active the next day without overdoing it. I am almost 2 years down the line and on 4.5 so it's probably not a good comparison.It's often difficult at the beginning to get a balance but I took a lot of rests between tasks and it certainly paid dividends. I recognise that trying to carry on with normal life does not work as this condition does not like it. I am sure someone more knowledgeable will be along

    soon to advise.

    • Posted

      By the time I'd written this you've had the knowledgeable along.

    • Posted

      Hello to you in Scotland!

      One thing I have to say is being on this site has made me yearn for travel .

      I have always wanted to visit these places that people on this site are from and still hope to do so some day.

      Thank you for sharing,learning to rest, plan and then try to restore, not used to that , but like slow reduction, finally getting it.

      Wishing you well

      Gina

    • Posted

      Thank you, Gina. We have hardly had any rain here for weeks now and the ground is very dry. There is none forecast for the next few days so the ground may need a hosing soon. This is unusual for Scotland. I think it is important to try not to do too much in one go and definitely take rests and pace yourself. To date, my only flare was going from 12.5 to 10. It was near the beginning and it was too big a jump. I had to go up to 12.5 and then go to 11. Others have found the same but we're all different in our response to lowering though I found the DSNS method helpful from 9 down. Best wishes on your journey.

  • Posted

    I think we were all replying at the same time so the knowledgeable people have been along.
    • Posted

      Anyone who has been on this journey as long as you is more than knowledgable. just 6 weeks in for me.❤️
  • Posted

    So far I've never adjusted my pred dose from the schedule I'm on but I've been sorely tempted at times.  I'm not sure what's right and what's wrong sometimes.  What you suggest makes sense but doesn't playing with the pred dose potentially set you back to a higher dose until the body adjusts again?  

    I'll freely admit to being so lost right now.  I've been at 15 mg since April 12 and am supposed to drop to 12.5 on May 12th.  It's gone reasonably well with a few exceptions mainly because I picked up a cold that seems to have caused me pain issues - not sure way.  However, Friday I had to do lots of heavy lifting and loading at work.  Friday night and all of Saturday until this morning were pure hell for me with all the pmr pains in joints, hands, even feet exploding.  It's almost 9:00 am here in Minnesota and things have calmed down a lot but I don't know if it's from my morning pred dose or if it's from the Tylenol 3 doses I was taking during the night as I was trying to get some relief somehow, as I've barely slept in 36 hours. Stairs were impossible until now and even something like getting up from the toilet was pure torture.  If I thought I could mess with the pred dose at times like these I would sure do it.  I'll be interested to read all the responses you get!  

    I see the comments about resting, taking it easy, laying low, etc but I need to work and it's weekends like this that makes me wonder if it's possible to keep my job sometimes. 

    • Posted

      I can't answer the work area for you but I am not surprised to hear you are in pain. I don't think I could have worked at the beginning of PMR and I had a fairly sedentary job though it did involve a fair amount of walking at times. I am fortunate in that I am retired. I wonder if you will manage to drop your steroids if you are in pain at the present level. Can you take time off work as it may get you over the initial pain and tiredness? Perhaps you can be moved to a more sedentary post. I realise you may be self employed which is another dimension. I also don't know where you are living which can affect benefit claims etc. I am sorry that you are suffering so much and I hope there may a short term resolution to allow you some rest and pacing of life.

    • Posted

      Sorry. I've just noticed that you said where you are. Do you have insurance that you can claim that will allow you time off work? I'm sorry but I'm not familiar with benefits and sick leave where you live.

    • Posted

      Although the pred deals with the symptoms it does nothing to the actual cause of them: an underlying autoimmune disorder that makes your immune system go haywire and attack your body cells as if they were foreign, like a viral or bacterial infection. This damages them, causing inflammation, pain and swelling. The pred eases that so you are more comfortable - but the autoimmune part chugs away in the background and leaves your muscles intolerant of acture exercise. For some people the autoimmune part burns out in up to a couple of years, but they are in the minority, for about half it is more like up to 4 to 6 years. The good news, if there is any (and I am assuming you are male), is that men usually recover sooner than women, they have a very different experience of both PMR and pred.

      If you are able to build up the work load slowly then often you can get back to a better state than you were with PMR - but the emphasis has to be on slowly. There are a few men on the forum who have continued their sport, there are probably some who work, but few of us have much experience of heavy physical work. I struggle to carry  a heavy shopping bag even now - my biceps will be sore for several days - and that is because not only are the muscles intolerant of working but they take much longer to recover afterwards. Many of the women don't have the problem as we tend not to do that sort of job - I only had to fall out of bed and stagger to my computer because not only was it a sedentary job, I worked from home!. 

      I do hope some of the guys come and tell you about their experiences with work. In the UK PMR is covered by disability legislation - no idea what happens in the USA.

  • Posted

    I have only ever adjusted my dosage upwards in response to apparent increase in PMR pain.  Because I'm one who thinks pred is dangerous enough I would never take more ahead of time thinking I might need it.  If possible, better to schedule in more rest, as the others said.  

    Pick your battles - if it is for example a gathering where you are expected to contribute some food, maybe this is the time to get a caterer to supply the goodies?  Just sayin'  cool

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