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I'm floundering! Increase or decrease pred?

Posted , 9 users are following.

JW89
JW89

I'd appreciate some opinions as I'm close to the end of my tether and don't know what to do.  Not helped by a second very bad night's sleep so, in addition to my body being a mess, my head has joined ranks too.  Marvellous!

My Background:

Had may signs (pain & stiffness in multiple joints) of RA back in March 2015.  Long journey of tests (slow NHS) didn't show lab/scan evidence of RA.  In Sept 2015 I had an intramuscular steroid shot on the basis that, if there was inflammation in the body which wasn't showing on bloodwork, it should help.  It did - like a miracle!  Within a few days I felt better than I had in such a long time... but effects only lasted a few weeks, although I didn't go back to the same severity of my original symptoms.

Went back to see Rheumy in Dec 2015.  Base on my body's reaction to the steroid shot, his diagnosis was some form of inflammatory arthritis so started me on Hydroxychloroquine.  Also gave me another steroid shot to tide me over until the HCQ kicked in.  This time though, I didn't get that miraculous effect from the steroid shot.  I really didn't notice any improvement... and no effect from the HCQ either.

Back to Rheumy at beginning of March 2016.  Based on my lack of response to HCQ and last steroid shot, he dismissed his earlier diagnosis and thought I had PMR.  Told me to stop HCQ (which surprised me, as I'd expected him to try increasing the dosage) and started me on Pred.  

Now:

I was on 15mg Pred for a week.  It made me feel a bit better and I'd say pain/stiffness reduced by 40-50%.  The following week I went back and dosage up'd to 20mg for 4 weeks, then I'm to reduce to 17.5mg for 4 weeks, then to 15mg... at which time I've got my next Rheumy appt.  (Impossible to get an earlier one, as he is soooooo booked up.)

I've been on 20mg Pred dosage for all of 2 weeks now and I couldn't beel lousier.  I'm still dealing with all the joint pains and stiffness (albeit still reduced from my original starting point), but now have what I assume are many side effects from the Pred on top... so I feel worse off now than when I started.  I am SO tired all the time (I thought I'd have more energy being on Pred) and it takes so little to exhaust me.  I had been walking 5miles a day very comfortably in February, and now struggle to walk a 1/2 mile.

My sleep is terribly disturbed, so that adds to the daytime exhaustion, though even if I do have a good night, I'm still tired during the day.  Other symptoms are the feeling of lightheadedness/floating, tingling in hands and feet, irritability, weight gain and the endless urge to eat.  I could cope with all the side effects if, overall, the Pred was helping with the original pain/stiffness, but I feel like I'm actually worse off than when I started.  :-(

Questions:

Could it just be that my body needs more time to adjust to Pred and things will improve?  

Should I try increasing Pred for a few days (just to 22.5 or 25mg) to see if that has a positive effect on the PMR symptoms?  

Should I try decreasing Pred to 17.5mg to see if the Pred side effects get better and PMR symptoms stay at same level or get worse.

I'm really at a loss on what way to go and am feeling at an all time low today.  My husband suggested I ask my GP for some sleeping tablets, but the last thing I want to do is add another drug at this point.

I cannot get hold of the Rheumy to ask his advice.  Besides, he still isn't convinved that PMR diagnosis is correct as he said the symptoms/blood test results didn't quite fit... but he didn't elaborate and nor did I think to ask for details.

Sorry for such a long post.  Any thoughts/opinions on what I should try will be greatly appreciated.  

 

0 likes, 30 replies

30 Replies

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  • Daniel1143
    Daniel1143 JW89

    Posted

    Sorry to hear about your difficulties.  Sounds to m like PMR, and you are not alone in being confused and at wits end.  Everyone's symptoms seeme to be different to some degree which just adds to the confusion. I have been to four Rheumatologitsts over the years.  They have different interpretations of the illness.  Some question PMR, some don't.  They recommend different strengths of prednisone or methotrexate and different tapering regimens.  All adding to my conclusion that they really don't know.

    If your doc said the test results don't point to PMR, me likely means that your CRP and Sed Rate tests were normal and not elevated.  But as we have found thru this forum, there are many diagnosed with PMR who have normal CRP and Sed tests.  I am one of them.  Interestingly, it was a cortisone shot that made me feel so much better which led to my diagnosis.

    Not entirely share what to advise but a step up in prednisone might be in order.  However,do be careful and follow a careful protocol when going backdown.  Your best hope is that the oracle of these discussions, EileenH, will respond.  She is far more of an expert than anyone I have met on this subject.  Hopefully, she is lurking...

     

    • JW89
      JW89 Daniel1143

      Posted

      Thanks for your reply, Daniel.  Out of interest, what drug/dosage route did you take after your successful cortisone shot?  

       

    • Silver49
      Silver49 JW89

      Posted

      I don't know what to advise but I will say that when I started steroids my sleep pattern was totally knocked. I was up in the early hours trying not to disturb my OH. I cut out caffeine totally and when I got up I put on the lowest of lighting and made a cup of camomile tea. I found it better to get up than just toss and turn or lie still. When I went back to bed I often found I could get back to sleep. I,too, felt tired in the daytime and lay down for a while which helped. My dose is now 9mgs and I have been sleeping better for some  time now though I still have the occasional night when I don't sleep so well and feel tired and not too good the next day. Whatever you are doing during the day I hope you are pacing yourself and resting in between tasks. I am now back in a more normal routine but there are times when I know PMR is still there though my bloods now say otherwise. I hope you get sorted out with the correct medication. Best wishes.
    • JW89
      JW89 Silver49

      Posted

      Thanks for your reply.  Yes, I'm pacing myself throughout the day.  I'm amazed that the sleep isn't catching up on me... at least not yet.  I guess that's the positive side effect of the Pred... not allowing me to crash the way I would normally on so little sleep.  
    • Daniel1143
      Daniel1143 JW89

      Posted

      Sorry not to have replied in a timely manner.  I started on 20 last May and migrated to 10 mg by reducing 2.5mg a month.  Was ok at 10.  Have continued to reduce at half that rate each month.  Have struggled my way to 5mg with frequent flares.  Realized this week that I cannot fight PMR and need to go up.  I wrote elsewhere that PMR has a mind of its own, and what we are really doing is managing prednisone. 
    • Anhaga
      Anhaga Daniel1143

      Posted

      Oh dear, so sorry it's been such a struggle.  The first flare was a sign your reduction was too fast.  Slowly, slowly does the trick.  As has been said elsewhere on this forum, it isn't slow if it works!  If nothing else, pmr and pred teach us patience!rolleyes
    • diana21296
      diana21296 Anhaga

      Posted

      I reduced a bit too fast from 25mg to 13mg in under 5 weeks as per instructed and I was ok until I had been on 13 for 8 days last Thurs and suddenly had an agonising flare in my back.  Couldn't move and was sweating and in so much pain my husband called 999.  However, 50 minutes earlier when I could feel it coming on, I had taken 2 mg upping dose to 15 and a strong painkiller and as I was talking to the paramedic over phone, the pain started to subside.  Within a short time I felt absolutely fine as the meds obviously had kicked in.  I am now staying on 15mg for a bit after seeing the rheumy for my appt the next morning!  A hard lesson to learn!
    • Anhaga
      Anhaga diana21296

      Posted

      Oh dear, I am sorry that happened.  You were really good about catching it though and you should be okay now that you're slowing down.  confused
  • maid_mariane
    maid_mariane JW89

    Posted

    I feel for you and truly know the exhaustion brought on by lack of sleep as well as the disease.

    Being 6mos on prednisone from day one i was up all night and my gp and i tried every sleeping pill in the book including the most addictive. It allows me 3 hours sleep which is better than 1 hour cat naps and then after 5-7 days my body crashes and I'll get 4-5 hour's and it feels awesome.

    I have found that for a great sleep the room must be cool because of the hot flashes and extremely dsrk and quite. Orhers have found this too.

    As for tappering for me I'm very sensitive even tappering over 7 weeks. Started at 20mg and had a hard time going to 17.5. I'm just finishing a taper of only .5mg to go to 17 so please be careful of big drops, rule of thumb is no more than10% and for me this is too much. So know your body, the pain is telling you something.

    If you sit around to much you will be stiff so your in a catch 22. Your exhausted but you have to move, for me my muse is water. It helps my brain fog and definitely has helped mobility.

    I hope this helps Mariane

    • JW89
      JW89 maid_mariane

      Posted

      Thanks for your reply, Mariane.  Yes, I do keep the room cool, dark and quiet.  Am in the spare room these days so as not to disturb OH.  I'm up and down like a yo-yo and similar to you, I manage to get 1-2 hours of sleep at a time.  Rubbish night again last night.  Was totally wide awake at 4am so decided to go downstairs and watch TV.... and eventually I started to nod off at 6am. But by the time I got back upstairs to bed I was wide awake again!  

      In terms of tapering from 20 to 17.5 - how did you do it?  My Rheumy just told me take 20mg for 4 weeks, then reduce to 17.5mg for 4 weeks.  I'm wondering if I should reduce it more gradually?

    • Silver49
      Silver49 JW89

      Posted

      Would it be an idea just to stay downstairs and sleep there rather than go back upstairs? It may be worth leaving a spare duvet or something to cover you downstairs. It may be better than going back to bed and then being wide awake again. Your body will, hopefully, adjust when your steroids lower and you can revert to your normal bedtime routine.
    • maid_mariane
      maid_mariane JW89

      Posted

      Hi JW89

      I did a taper almost identical to the drop dead slow method which takes over 50 days.I use pill boxes and charts monday to sunday that keeps me on track and re-do my pill boxes every week.

      I've read enough on this forum that slow is the best and my rumi is of the same thought. It's the only good trait about her.

  • Daniel1143
    Daniel1143 JW89

    Posted

    Started out at 20mg in June, 2015.  Been tapering slowly since late July and am now at 5mg.  That said, I am not symtom free by any measure and may be tapering ahead of the curve. 

    As an observation, it seems as though the docs in the UK are much more aggressive about prescribing drugs for PMR.  Hard to tell since I dont know where people are writing in from, but here the standard opening dose is 15-20mg.  Been reading about others starting at 40mg which feels really excessive.  Lots of other drugs being prescribed that I suspect only complicate things.

    • maid_mariane
      maid_mariane Daniel1143

      Posted

      Hi Daniel, I'm from Canada and 15-20 is standard but alot of people online also have GCA which takes very high doses to control. I'm envious of your tapper time.

      Mariane

    • Daniel1143
      Daniel1143 maid_mariane

      Posted

      I believe I have probably tapered too quickly.  I am curious whether the standard protocol is to be symptom free for a period of time before dropping down to the next level of prednisone.  I have continued to taper though not symptom free.
    • diana21296
      diana21296 Daniel1143

      Posted

      I started at 30mg for  weeks and then tapered down to 13mg now at 1mg every 3 day on instructions from rheumatologist.  No pain at all, but feel very tired.  Stopping at 13mg now for 2 weeks to see if energy picks up.
    • maid_mariane
      maid_mariane Daniel1143

      Posted

      Yes you are suppose to feel good or stabilized before drop again. I stabilized from Christmas to end of February 2mos before my drop now. From everything I've read if you drop to fast and still have symptoms you could end up back were you stated so be careful.
    • Anhaga
      Anhaga Daniel1143

      Posted

      I started a lengthy reply to you, which somehow I lost by hitting a wrong key.  rolleyes I'll make it shorter now.  There is symptom free and there is symptoms under control.  Most of the symptoms I have now are from steroid withdrawal.  I have had a slight pmr niggle from the time I was on 10 for the second time.  If I had waited to be symptom free I would probably still be at about 12, instead of at 5 and feeling better than ever.  It's really important to be able to distinguish between pmr's return and steroid withdrawal.  I seem to be able to do that, and it seems that at least for the time being pmr is well under control.  If I felt a return of any of the disability caused by pmr, I'd take steps to head it off.  If all I have is slight steroid withdrawal pain, which lessens as the taper continues, that is fine. confused
    • JW89
      JW89 Daniel1143

      Posted

      I'm in the UK and got started at 15mg - then upped to 20mg after a week.  I'm curious about being 'symptom free' versus 'under control'.  Is my target expection/hope of feeling 'normal' without any stiffness or pain (as I had after original steroid shot last year) realistic?  Or is it more of a balancing act of reducing PMR symptoms to something that we can live with, and then reduce the Pred slowly?
    • Silver49
      Silver49 JW89

      Posted

      I think we are looking for a balance.  Sometimes the hardest part is trying to pace what we do as I find doing too much increases the pain and tiredness. I cannot do what I used to and that is frustrating at times. I have learnt to prioritise and lower my standards. Life is short and it is better to decide what is important and what can just be ignored or left until a future date. It's amazing how we can adjust. We have to be flexible. I am reducing to 9mgs by the dead slow method.....so far it has worked. Apart from a flare at the beginning I have had no other flares. I started on 20mgs in late May 2015.
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