After being at 7.5 mg Prednisone from the beginning of December, 2014, and with a short burst of 10 mg on account of an infection, I began a reduction on February 14, from 7.5 mg to 7.0 mg. On March 1, I took my first dose of 6.5 and then, 7.0, 7.0. 7.0, etc. am hoping to get to 6.5 by March 15 and to stay on that until April 1, when I will start reducing to 6.0 by May 1. My rheumy expects me to be at 5.0 on May 1, but she will be disappointed, as I do not share her expectation.
My ESR has been normal for over a year.
Here are some issues.
I feel fatigue.
I have a pain in the ball of my right thumb, when I try to write with a pencil or pen or when I knit or when I try to lift things, like a dinner plate, for example, using the thumb. It feels like there is a knot in the muscle of the thumb and it hurts to press. I am right handed and use the right hand to use the mouse. I have been using a mouse for over 12 years constantly as I use the computer to write and click the mouse the whole time. Never experienced this before the last 3 weeks. The left hand does not hurt.
My eyelids are swollen and red and have been burning for about 2 weeks. I could explain this by saying that it is on account of the dryness in the air caused by heating in this (for us) long and unusually cold winter. But it has been cold for several months.
So here are the questions:
Fatigue: how long does it take for the body to adjust to the lower dose of Prednisone, and how soon does the fatigue lift? Should one wait until fatigue lifts before going to a lower dose?
Has anyone experienced similar hand and eye symptoms?
My ophthalmologist recommended me to an eye surgeon for cataract evaluation. I hope the surgeon, whom I am seeing on March 18, doesn't turn me down on account of the irritation to the eyelids. The cataracts have been growing for a while and they are really a bother-- am practically climbing into the computer when I write and can't see to drive at night as all headlights of oncoming cars and streetlights have rainbow halos around them.
Thank you in advance!
Paula
Yes- I have pain and pins and needles in my right hand only, but I do not know if it is as a result of the PMR.
Every flare I have had started in my thumb joints! It is worse in the mouse hand - sustained or repeated actions in PMR lead to claudication if there is any form of flare.
This is the dose region where your body has to start producing cortisol itself - it might have been a bit higher, it might be a bit lower. That can cause fatigue. I would say hang around at the dose you are at until the fatigue lifts - and that could be months. Why is your rheumy so set on a date and a dose? PMR needs what it needs to manage the symptoms - and your rheumy can't govern or predict that. If you have got to the dose, you have got to the dose. Of course your bloods are "normal" if the current pred dose is enough.
I have had sore burning eyes - it was dry eye syndrome which is quite common with autoimmune disorders. Maybe artificial tears? Or you could have an infection.
I sort of envy you the cataracts - I've worn glasses since childhood, if I had cataracts i could look forward to just needing glasses for reading...
A friend of mine who had PMR several years ago and saw an excellent GP who specialised in rheumatology said that she had said not to reduce more than half a mg a month, apparently this was very sound advice and he encouraged me to do the same. So far it has worked well, after receiving ridiculous fast reduction suggestions from both my GP and rheumy, which caused flare ups.
And in addition - ptolemy reminded me! The slower you reduce, the less pain you should experience and it does sound as if you are using the "dead slow and nearly stop" scheme. But maybe you need to wait in between the stages to see if that new dose is still enough rather than just moving on continuously. Just a thought.
Hello Paula, yes your rheumatologist is taking a rather regimented view to your reduction but I agree with Ptolemy I only reduce by a half and I stay on each dose for 4-6 weeks. If my GP or rheumatologist should ever query my slow reduction I've got excuses ranging from colds to cold sores as to why I did not reduce quite as quickly as their expectations!
This is going to sound really stupid but do have a good look at your thumb ball through a magnifying glass because not so long ago I had a terrible pain on the ball of my right hand index finger and when I looked closer I had the tiniest of a splinter. I got rid of it and guess what the pain went! If that isn't the reason then no I have no idea as to what it could be.
i have also noticed that my exterior eye lids are quite sore and are red too. I put it down to the skin in that area being very delicate and the prednisolone may have thinned it further still. I always use moisturiser so I am hoping that will help. I also had a bit of a cry yesterday and I think the salty tears made the problem worse. But as I said I always use moisturiser, but yes I also have sore red exterior eye lids.
all the best, christina
Thanks for your response, Eileen.
The thumb thing is in the ball at the base of the thumb. Can anything be done about the claudication?
Why the rheumy wants me down at this rate is not clear to me. I think the rheumy might be of the opinion that the PMR is under control. Or does not have a lot of experience with PMR. I do wonder how many PMR patients the Rheumatologists in my geographic area actually see, given relatively low percentage of PMR sufferers versus general public in the US (in studies I have seen). I only know of one or 2 people in the DC Metropolitan area with PMR, judging by what I see in this forum and others. I imagine there are more, but not on forums.
Thanks, Ptolemy. I will feel more confident not racing to the finish. Tortoise and Hare thing. Or as the Romans said: Festina lente.
Being a non-crier, I found that crying is good for dry eyes. One of the side effects of prednisone.
Recently I have discovered that I am grieving my old body. The one that could do yoga, bend and just feel good without all the naps.
My prednisone dosage is at 6.5 mg and I'm still tired.
Now onto the thumb, I've beaded for serval years.(small needles and tiny beads)
two weeks ago, my right thumb started hurting enough that I looked in to and bought a splint for my right hand. Thinking of tendinitis, I researched it and there is a tendinitis of the thumb with the specific name which I have forgotten, my symptoms fit it perfectly. Because there is also slight pain in my left thumb same place, I'm to mention this to my rheumatologist, with whom I have an appointment in a couple weeks.
I don't know if all of this chatter has been of any help to you. I guess we all just have to hang in there.
ThanksChristine,
The pain is in the ball at the base of the thumb, i.e. the lower part of the palm.
I'll don't use moisterizer. Wouldn't know what to buy for the eyes. Do you use something around the eyes that is special for the eyes?
I mean moisturizer. Am sad for you that you had to cry. Hope things are better, Christine.
Yes. VERY helpful. Good to know one is not alone in this heckuvamessyannoyingpmrnonsense.
Does the splint help? Is it like a brace that goes from wrist to top of thumb?
For my dry eyes I use, Systane gel drop. USA
It's black 3M Futuro (USA). Yes it helps because it restricts movement. Does not encase my thumb which I wish it did. I have not beaded in two weeks - for a rest, use ice packs, and 3 (200mg) IB with almond milk before bed. (Hope the almond milk helps coat my stomach)
Thanks. I'll check it out at the drugstore.
Oh yes. The Yoga thing: Me too. I do yoga and feel limited, also. Can't do handstands or headstands or backbends. At least am afraid to, so as not to pull something. Groan.
Hi Twigjean,
My response got removed. Weird. All I said was which form of yoga I do. Never mind. I have had to give up a number of poses as I am afraid I MIGHT hurt myself. Used to doing a yoga known for alignment and strength. I miss my usual yoga, also.
I'll go check out the hand brace. Our drugstore (unnamed) carries them/ I am in the DC metro area. Northern Virginia.
I just ordered a new brace which will enclose my thumb. My drug store ony carries the ones for carpel tunnel. The one I ordered is for de quenvains which is what I have self diagnosed.
Yep. Dequervains. Sounds like what I have. thanks for the thumbs up (!!)
I thought de Quervain's syndrome was actually pain of the tendon tunnel on the wrist by the thumb not on the actual ball of the thumb. Although I may be wrong. Do you have any swelling? Also do you have pain when you press the area? I am sure having a brace will help, as it will let you rest it whatever it is.