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Getting below 7.5 mg Prednisone

Posted , 12 users are following.

paula63201
paula63201

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

 

1 like, 36 replies

36 Replies

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  • EileenH
    EileenH paula63201

    Posted

    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...

    • EileenH
      EileenH

      Posted

      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.
    • paula63201
      paula63201 EileenH

      Posted

      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.

    • EileenH
      EileenH paula63201

      Posted

      A lot seem to think that if the markers are "normal" the PMR has gone into remission - and so it has, except this is a drug induced remission of the symptoms, full remission is something that only happens when the underlying autoimmune problem has burnt out and no longer causes symptoms. Then you won't need any pred - but it could still be a long way off. That is why you need to occasionaly try further reductions to find if you CAN manage on less - but it won't happen to order or in line with what anyone wants. It will happen when it happens - PMR nad GCA play by their rules, not the doctor's.

      The only way to help clauidcation cramps is using the joint differently and restricting the things that cause it. With walking you can keep walking through the pain and can increase your range a lot with training but I'm not usre you can do that with using the mouse! I used to find lifting things was my problem - so I was aware and put thigs down quicker or between times.

  • ptolemy
    ptolemy paula63201

    Posted

    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. 
    • paula63201
      paula63201 ptolemy

      Posted

      Thanks, Ptolemy. I will feel more confident not racing to the finish. Tortoise and Hare thing. Or as the Romans said: Festina lente.
  • tina-uk_cwall
    tina-uk_cwall paula63201

    Posted

    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 

    • paula63201
      paula63201 tina-uk_cwall

      Posted

      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?

       

    • paula63201
      paula63201

      Posted

      I mean moisturizer. Am sad for you that you had to cry. Hope things are better, Christine.
    • tina-uk_cwall
      tina-uk_cwall paula63201

      Posted

      Oh Paula, you bad, bad girl! Moisturiser is a total necessity for everyone. Firstly it really does keep our skin soft and subtle and it does revitalise the skin by adding water that is absorbed back into the skin through the pores.

      prednisolone is a real enemy of skin, it thins it and makes it brittle, well not brittle, but when it thins it, it becomes more susceptible to tears and damage. 

      It really doesn't matter what brand or cost of moisturiser you use as they really do contain nearly all the same ingredients it's just how much all the ingredients have been whipped together and the quality of the ingredients. I learned that because many, many years ago I worked for Christian Dior as a Saturday girl and they were fantastic employers. They sent me on loads of courses and that's where I learnt about beauty products. I have to honest I use Nivea soft, the White tub, for my face but for my eyes I use super drug vitamin e eye cream that comes in a little tube. Never put heavy creams on your eyelids as the skin is delicate and soft and the heavy creams really are simply too, well, heavy. Always use an eye cream. When you compare face creams and eye creams you can immediately tell the difference between the 2. The eye cream is much more soft and delicate. For your body again I use the cheapest lotions or creams but I do like superdrugs vit e cream and lotion. It works well and it's very cheap!

      my dear mum who died 3 years ago had the most beautiful skin, she was 83 and her skin was soft and subtle and only had a few wrinkles. She used moisturiser everyday.

      all the best, christina 

    • EileenH
      EileenH tina-uk_cwall

      Posted

      Sorry Christina - if it's a must I'm an utter failure! I have NEVER used moisturiser in my life and I, albeit rather younger than your mother, have beautiful soft skin and don't look my age (now it's recovered from the medrol that is). A friend in Australia also has never used moisturiser and was harangued by a young woman when she was given a pamper day by her daughters for her 55th birthday for not doing so. When my friend asked the young woman how old she though she was the girl said mid-30s - and was stunned when my friend told her how old she was. I have laughter lines and a bit of incipient wrinkle having lost 19kg - that's fine.

      On the other hand - I have never used soap or other cleansing products either. If you don't strip out the skin's natural oils you don't need to spend a fortune replacing them. Of course the manufacturers tell you how these potions do this that and the other - but it is all noddy-science. And as for the nanoparticle products - thank you but I don't wish to have them floating around in my body, because they are about the only things that penetrate further than the top layer of skin which is being shed all the time anyway.

      And just to finish off the tale of my disgusting habits - I haven't used deodorant since shortly after my PMR started. I can't use any with aluminium in them anyway and it was becoming increasingly difficult at the time to find unperfumed ones. I noticed that despite a shower and deo before the gym I STANK after a few minutes of a step class. Even another shower and more deo didn't really do the job. I applied science to the problem and stopped using deo and just showered with a minimum of products, just good old water: the use of all these products alters the natural flora and fauna on our skin, removing not only the "bad" bugs but also the "good" ones that keep our skin healthy. It took about 2 or 3 months but the nasty smell went away entirely as my skin went back to natural. During exercise (I could still do it then) I smelt of fresh sweat but that isn't unpleasant when fresh - and I rinsed it all off immediately after the class so it never became unpleasant. I haven't bought a deo since. In fact, about a third of people do not produce bad-smelling sweat, it's a genetic thing. But manufacturers prey on our fears of smelling unpleasant.

    • paula63201
      paula63201 tina-uk_cwall

      Posted

      I use moisurizer on my body, but avoid all cosmetics on my face, other than a bit of eye make up. I'll check out the eye creams. The Vit E in yours sounds good!

      Thanks!

    • tina-uk_cwall
      tina-uk_cwall paula63201

      Posted

      Hi Paula, yes do see for the eye creams especially if you do use eye make up, especially eye shadows that are powder ones as they absorb the skins moisture and so that moisturise requires replacing. Christina
    • tina-uk_cwall
      tina-uk_cwall EileenH

      Posted

      Right now Eileen I see you are going to be very difficult to convert! Not that I want to because I have many friends who don't use moisturiser and they 're doing ok. And yes even I don't believe any of the rubbish about peptides and blar blar blar. 

      I also know that certain nationalities have different skin types and very often their skin types are that way to deal with the environment that they live in, eg, olive skins are naturally oily and that is good because the sun can dry out the skin and all the oil keeps the skin nice and moisturised. But I absolutely hate dry skin especially my face and hands and if my legs go dry I really really hate that. That's why I use moisturiser and may I add I only purchase the cheapest.

      talking  of sweat, when my mum was a nurse one of the nurses she worked with never used deodorant, I don't think it was because of an allergy or anything but she used to wipe a crystal under her arm pits. What crystal this was I have no idea but  she said it worked wonders! Christina 

    • EileenH
      EileenH tina-uk_cwall

      Posted

      I am - you're right :-)  As much as anything it is because I detest the sticky feeling on my skin, even using hand cream or sunscreen is a trial. I have tried all sorts of stuff and simply never found one I could bear the feel of and liked the smell. I do, very occasionally, use one of the Norwegian formula lotions as I find it almost acceptable. I've never had dry skin - although I will admit that at the moment my shins are a bit dry but the lotion must be in the camper van, I can't summon up the enthusiasm to go and fetch it and I can't find it in the shops here!

      My daughter was using a crystal stone deo - just google it and you'll find articles about it. Any aluminium one just made me itch - sorry, but I'd rather smell!

    • ann57025
      ann57025 paula63201

      Posted

      I have started to apply moisturiser on my body, GP suggested this would help with the marks on my arms, seem to get scratched so easily, have to be careful of everything, but the cream is helping, using up all te moisturiser that I have purchased and has been hiding in the bathroom cupboard.

      thank you for all the comments on the forum, so many questions answered and I haven't had to ask the questions.

      i live in Western Australia, South of Perth near Bunbury, don't know of anyone else with PMR.

      i am on the slow reduction, now down to 20mg, trying not to be impatient, have experienced shoulder, neck and back pain over the last 4 days. 

      Will see GP on 10th for results of bloods.

      thanks again everyone

      cheers

      ann G

       

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