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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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  • noninoni
    noninoni JW89

    Posted

    You should try melatonin to help you sleep, because it is also anti-inflammatory and reduces damage due to inflammation.  Reduces edema.  And it is extremely safe since your own body makes it.  So it is very worth while.  If I wake in the middle of the night, I often take another melatonin pill to help me go back to sleep.  Take a pill about half an hour before you go to bed.  It is over the counter here in the USA.
    • JW89
      JW89 noninoni

      Posted

      I'm in the UK and unfortunately melatonin is only available on prescription here.  But after a third night of terrible sleep, I'm beginning to think I need to try something.  I'm reluctant to go sleeping pill route, especially as I'm due to reduce Pred from 20 to 17.5 in 11 more days (and it will probably take me that long to get an appointment to see the GP!) so maybe when I reduce, my sleep may improve.  I think I'll try the various herbal OTC options and see if they help at all.  At least I've got a fairly easy week or so ahead of me.
    • Anhaga
      Anhaga JW89

      Posted

      Although I have heard there are some possible problems with it, valerian has been used to promote sleep.  I used it some years ago and did find a difference (improvement) in the quality of my sleep.  I think used in conjunction with all the other things that can promote sleep - don't watch tv, nor use your computer or smartphone, before bedtime,and especially do not watch anything that might promote stress (like the news).  Have a warm bath and perhaps have a small snack so you aren't hungry.  Do not read anything too gripping.  I've been nodding off over a book of theological essays recently.  I can't even find the words she uses in my dictionary.  cheesygrin
    • diana21296
      diana21296 JW89

      Posted

      I was recommended Nytol from Boots and this works very well for me and can't be too harmful as non prescription!
  • noninoni
    noninoni JW89

    Posted

    Melatonin:  you can convince your own body to make more of the stuff at night if you avoid blue light at night.  This will help you sleep.  Put amber lights or dim incancescent lights in the bedroom, bathroom and hall so that there is no blue to wake you up too much.

          Avoid the TV for an hour or two before bedtime, and, on your PC, download f.lux.   F.lux will turn your PC screen slightly amber when the sun goes down.  I have used it for several years without a problem.  There is something equivalent for MACs, but I forget what they call it. 

         But it is a real pity melatonin is not available over the counter.  It has so many benefits.

    • JW89
      JW89 noninoni

      Posted

      Thanks for the tip re f.lux - I'd not heard of it before.
    • snapperblue
      snapperblue noninoni

      Posted

      The latest upgrade for iPhone and iPad has a feature (NightShift) that changes the color of the light on the screen as the evening progresses, from the normal blue to warmer tones.  Skeptics suggest having the device lock itself 2 hours before your bedtime would be a better fix!  
  • JW89
    JW89

    Posted

    Well I've persevered with 20mg pred dose and am counting my days to first reduction (to 17.5mg) on Tuesday.  It'll be interesting to see if the side effects get better with reduction and whether pain/stiffness gets worse.  I'm hoping my sleep and dizziness will improve at least.  

    Curiously, I've developed a widespread spotty rash on my abdomen over the last week.  It's not itchy, but red spots are unsightly.  I'll take a photo to show rheumy in case it's cleared up before I see him again.  When I first saw him he was particularly interested in whether I had any rashes (psoriatic arthritis).  I've also had a flat wart on my back for many years and smaller ones are now appearing which, from what I've read, is likely to be due to suppressed immune system from Pred, so wart virus is running wild.  Oh joy!

    • snapperblue
      snapperblue JW89

      Posted

      I don't know about warts, but Ihad a huge outbreak of tiny keratoses in the months before PMR was diagnosed. The skin on my legs also thickened.  The cytokine active in PMR, interleukin-6, also promotes the activity of cells that produce kerotin.  This was going on for 6 months to a year before the sudden onset of the typical PMR pain.

       

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