I'm floundering! Increase or decrease pred?
Posted , 9 users are following.
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
Daniel1143 JW89
Posted
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 Daniel1143
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Silver49 JW89
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JW89 Silver49
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Daniel1143 JW89
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Anhaga Daniel1143
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diana21296 Anhaga
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Anhaga diana21296
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maid_mariane JW89
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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 maid_mariane
Posted
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 JW89
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maid_mariane JW89
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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 JW89
Posted
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 Daniel1143
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Mariane
Daniel1143 maid_mariane
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diana21296 Daniel1143
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diana21296
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maid_mariane Daniel1143
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Anhaga Daniel1143
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JW89 Daniel1143
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Silver49 JW89
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