Please can you good folk tell me whether extreme tiredness is linked to reduction of preds. It has taken a while but I am now down to 12.5 with no problems with pain. Fluid retention is not good (maybe due somewhat to the heat) and my hot flushes are worse. But my main concern is that I keep falling asleep during the day. I've been tired since being diagnosed 12 months ago with PMR & the GCA but nothing like this. Has anyone else found this? I haven't written on the forum for some while but I follow it regularly & am grateful for the many helpful posts. Thanks to you all

Pat Cass x

22 Replies

  • At 12.5mg it shouldn't be to do with the reduction in pred - that is more likely below 10mg. Are you trying to do more now you are on less pred? The other possibility is the autoimmune disorder is flaring a bit without yet causing symptoms.

    Otherwise, go and get your doctor to check BP and blood sugar and so on. Having PMR/GCA doesn't excuse you from having other problems. It is also possible that your BP has gone down with the reduction in pred and that can really knock you out. The heat will not help and fluid retention could be due to something else besides pred.

  • Thanks PMRpro I will go & get GP to check. My rheumy apt was cancelled 2 weeks ago & I have just got date for next one 25th Sept!!!!! Not good eh x

  • It's the holidays! The people who hand out the appointments don't stop to think about the fact that doctors with school age children are stuck with August holidays and will have to cancel a few clinics.

    But the GP can certainly do the basics and rule out nasties. You haven't admitted to doing too much! Rest!!! Resting BEFORE you get too tired is actually more effective - you will get the time back later in the day. Oh - don't forget to get checked for anaemia! Of all sorts!!

  • I wasn't annoyed at my apt being cancelled just surprised that my next apt was so far away particularly as my last blood tests will prob not be much help by then. I know our Rheumy dept has lost a consultant too. I try not to overdo things but the idea of resting first is great. I can't believe I hadn't thought along those lines. Will see GP & get checked out. Thanks :)

  • The distance to the new appointment is because they usually make appointments about 6-8 weeks ahead and there is only a finite number of patients who can be seen in a clinic. The next 5 weeks are already full, you get slotted into the next available space. Without extra time or extra doctors there isn't a lot that can be done since emergencies must be seen - and we aren't emergencies.

  • Hi,you have my symptoms too, I have been tired all through this illness but having got down to 5/1/2 mg,s and doing this very slowly am really tired and do tend to rest my eyes several times on a bad day its awful I get spurts when I will make myself get up and do something but on a bad day its not even enough to take the dogs out to day is one of those days,I do not know why we are like this but I,m sure some one will give us some advice,this forum is much better than going to the Docs they haven't got a clue,anyway I was going to go out with some friends to night but you can see were I am and are waiting to go to bed isn't that sad on a Saturday evening,but tomorrow is another day and we will be feeling much better wont we,

    Think positive,good luck Anne,in the sunny north east.

  • When you have something planned - make sure you rest EARLIER in the day and save up your energy for the special treat. It will get better - but in the meantime, you need to plan a rest and if you overdo it one day, rest more the next. It applies in most autoimmune disorders and planning in rest time does make a massive difference.

    It often also helps to go out and have a gentle stroll and fresh air. That may well make you feel more energised. But don't then go and use up all that energy if you are planning some fun later...

  • Thanks PMRpro I know you are right what I do is really stupid I get some energy and then do some housework and I do keep telling myself it will be their when I,,m not but old habits die hard,but i will take your advice as I am missing out on so much pleasure time,many thanks for your reply Anne.take care and thank you for beaning their for us all,

  • Do what MUST be done - and that does NOT include housework! Food first, and even that should be the easy sort, no long standing chopping veg or stirring pans or lifting heavy trays. At least those of you who live in the UK can pick up ready-prepared veggies! No such thing here.

    Next come pleasant things - and rest beforehand if you need to. Then laundry I suppose - but keep the ironing to a minimum. And then you may consider housework - but only if you still feel up to it.


  • Thanks ritter I used to wish I could catnap & now I can nod off for England. I hate to hear of others going through the same things but selfishly it helps to know you are not alone. Sorry you've missed your night out - am sure there will be many more in the future. Take care

  • LO Pat. Apart from a few few aches, Tiredness&muzzey head are main bug bear with this strange journy for me.I am slowly reducing down from 15mg . i am now on 8mg going for 7mg. when i feel OK on 7mg I will try for FBC, I am wondering if it could be Iron def,or my underactive thyroid?? it is all a bit trial & error for me.Like you i would really have been in stuck with out these formums. With the tiredness i cant even sit & read a book with out my eyes closing.hope one of the girls will be along to give better advice take care. Dave.

  • I have just got down to 12.5mg and I have been totally exhausted. As you say nothing like this in the past. Much worse than when I started on pred. I am staying static for a while to see if the tiredness improves. My blood sugar and BP are fine. I also have fluid retention but I have had that a while. I was going to try PMRPro's suggestion of manual lymph drainage. I found someone locally but she is booked up until September.

  • The lymph drainage sounds good. I'll look into it. Hope you find it beneficial :)

  • I have found indeed to have an hour in bed when I get from work at 4pm. It takes me a while to come around though! I am down to 24mg of pred from 40mg. I had got down to 17.5mg but had a huge flare up so Doc put me back on 49mg. I'm desperate to get to lower levels but realise I can't rush it.

    I feel exhausted most of time and really have a "can't be bothered" mind set. Everything ses to much effort or I know I will feel crap after. Also feel a lot weaker especially in my legs. Started getting temporal headaches but Doc is convinced it's not GCA, the good thing is he does seem clued up on PMR and GCA. Got my next Rheumy appointment on the 15th Aug so I wait to see what he says.

    I must admit this condition has really made me think I would like to retire but at 58 it's not easy to fund it! Any way good luck and hope you start feeling better soon.

  • Hi Griggser,I know how your feeling. Ive gca pmr and a host of other autoimmune illnesses ,click me name easier than writing out ,only new thing is APS hughes or sticky blood .Im permantley tired on 20 mg pred daily at present .Weakness in legs and stiffness I have just get worn out with small actions.If Doc not onside get a second opinion ,I respect that your managing work,ive been ill health retired at 51.If you've gca its covered under the equality act 2010 meaning your employer should make reasonable adjustments to enable you still to work. You should get more from your rheumatologist regarding symptoms and treatment when you see him /her.

  • Re tiredness. Yes, it comes in phases and I really feel for those still working and have great admiration for them. I have been retired some years now so can rest when those days come. yes, loads of jobs get put on the back boiler, but too bad. I am off to NewZealand in a couple of months. Can you imaGine jet lag too! I do Tai Chi and find this helps...especially the relaxation part at the end.

  • New Zealand - wow. Have a fabulous time. I hope the jet lag is managable and you can put your understanding of the illness (and the Tai Chi) to good use

  • Hi Patdencass, been in New Zealand for three weeks now and doing well. I do find I have to watch what I eat I.e. I started on the anti-inflammatory diet 3 weeks before coming and was doing great. Eating just what the family eat here after 2 weeks I was getting very stiff and feeling tired so had to go shop for myself for my diet stuff. I can get green smoothies here and bought lots of greens and fish and oats so feeing back on track now. The jet lag was not bad at all but I think the warm air, sunshine and excitement helped.....be a bit different going back just before Christmas I think with the wet cold English weather. I have done Tai Chi here and Pilates. Very pleased and hoping to,go home well. I have not tried to go down with Preds though....chicken!

  • It's strange that knowing you are not alone helps in a way. I'm now down to 7/8mg alt. per day. I've been suffering from extreme tiredness for some time. The Pred has done its deed and brought type 2 diabetes down on my head so apart from everything else I now have to worry about blood sugar levels. I'm also lactose-intolerant (something else my long list of medication seems to have caused) and I have cut out meat from my diet so life is much different than it was a couple of years ago. On top of that I have poor mobility, knees that won't support me and in pain most if the time. Rheumy diagnosed fibromyalgia to go with the PMR and GCA and heart condition. I haven't worked for years and can't see me ever doing so again. Some days I have trouble getting out of bed so who in their right mind would employ me anyway?

    As you can probably tell, I sufffer from depression and I'm in a downer today!

  • I feel sad for moaning about my condition when I hear from people as bogged down with problems as you. Life seems so unfair. Do you have any support from individuals or groups nearby? I've always found talking & company the best way to feel brighter. Just talking on this forum helps get things more n perspective. I hope you get some let up in your pain - which in turn will help your depression :)

  • You should not feel sad for expressing your concerns. We all do it and it helps us all to discuss what's worrying ourselves.

    Apart from this forum, which is a great help, I've not really had any support. But today my occupational therapist has given me details of a local fibromyalgia support group which I have just emailed so, hopefully, I might get some soon!

  • Hi there Pat I have had PMR for over 3 years I am slowly reducing pred after several ups and downs over the years at the moment I am on 7mg. I am uterley exhausted whether I do anything or not. Keep hoping its going to get better Wendy

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