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dealing with Prednisone

Posted , 5 users are following.

willa5
willa5

Im curious what you have as side effects of prednisone and what you do about it.

For me, I initially loose weight and my skin gets wrinkled from reduction in swelling . But when I start to go off, my appetite goes crazy, I over eat, andalso start to retain fluid..

Solution- I try and notice and not eat as much avoid olives, and salty things especially at night.

When first starting the pred. I cant get to sleep.

After Ive been on it a few weeks, I get delusions of feeling fine.I think I can do things like I used to before I had pain and limitations on my endurance. That also translates in keep me away from my credit card. When I feel so much better I get so many things I want to do, and like Ive been freed from some heavy weights and bondage, but itis an illusion,. I CAN do more than usual on the prednisone, but if I do it I get a big back lash.. Solution, I put signs up on my computer reminding me I am under the influence of prednisone not to trust myself.. think twice before buying anything.

also, my daughter is on the look out and can tell when I might be over doing it. I was a work oholic before and always was physically active,...

Now over doing it just makes me worse and sick.

OH and a big one,,, NEver take prednisone on an empty stomach especially larger doses.. I always split my doses up throughout the day.. I have a much better reaction to them.

also, when coming off prednisone do it REAL SLOW, easier than a relapse. toward the send when Im down to 5mg. I cut a light slice off and gosometimes a week,, and then go down slower.

This much easier to go on bursts than smaller dose for longer periods of time.. even at a lower dose.. its like the body has withdrawels.

take care everyone,

1 like, 18 replies

18 Replies

  • ptolemy
    ptolemy willa5

    Posted

    I counted up fourteen side effects I have, although some were pretty  minor. Hot sweats, insomnia, water retension, voracious appetite, weakness, mushy brain, brillo hair, gritty eyes, sensitive teeth, headaches, cramps, purpura, thin skin, I can't remember the fourteenth, my mushy brain must be active.
  • Light
    Light willa5

    Posted

    Mine: Weight loss, hair thinning, broken capillaries in feet, on-and-off eczema... thin skin? But that may just be ageing.

    Now Ptolemy's gritty eyes..... yes, I have that too. Didn't know it was due to the preds though.

    • ptolemy
      ptolemy Light

      Posted

      My GP did prescribe something for the gritty eyes. The only problem was it was like putting lemon juice in my eyes, it turned out I was allergic to lanolin. I have always had problems with eye make up too. The pharmacist suggested something else which I cannot get on prescription, which you spray on your shut eyes and is absorbed through the eyelids. The pharmacist has been incredibly helpful regarding steroids and their side effects, he seems much more knowledgable than the GP. 
    • Light
      Light ptolemy

      Posted

      If that something else you spray on your eyelids is an Optrex Actimist product, forget it. Very expensie and high tech and – in my case at least – utterly useless.

      Might as well have sprayed it on my ears!

    • EileenH
      EileenH Light

      Posted

      A study was done with 3 different liposomal sprays, one of them was the Optrex version. Their conclusion was 

      "The original liposomal eye-spray 'OptrexActiMist' significantly improved ocular comfort and tear film stability while 'TearMist' or 'DryEyesMist' worsened both criteria. The latter two products may not be clinically effective in the treatment of dry eye."

      So it obviously worked for some people! I only know that my optician suggested Clarymist as being the best rather than the Optrex one and I found it did help. Then it disappeared from the supermarket shelves - but having just done a quick search I see it is now called "Eye Logic spray for dry eyes". 

      I have realised just recently that my gritty watering eyes seem to have improved a lot - though I shall wait for winter and cold air before I celebrate too much! Dry eyes are common alongside many autoimmune disorders - and actually have one of their own called Sjogrens syndrome. 

    • Light
      Light EileenH

      Posted

      Thank you Eileen. What a resource you are!

      Yes, I should have been more circumspect before making such grand pronouncements.

      Fact is, I have been through about 15 drops, gels and sprays, and so few of them touch my problem, so I tend to get a bit irritated (and not just in the eyes). And this one, and its companion Actimist Dry+Irritated Eye Spray were specially brought for me from the UK by a friend (extra aggro!)

      I haven't even tried that one yet.... wonder if it's the same as the one you mention: Actimist 'DryEyesMist'? Similar name...

      Still not impossible, if the other doesn't, this one might work for me...

      Clearly, if the first is on the market it must work for some people. Having so many eye allergies, I have to try everything at least once (all these half-opened bottles!)

      Mine is Actimist 2in1 (with pro-vitamn 85, whatever that is!)

      Interesting, your comment about Sjogrens...

      My eye problem was diagnosed as keratitis and neither my rheumy nor my opthalmologist mentioned Sjogrens.

       

    • EileenH
      EileenH Light

      Posted

      I didn't mean it to sound argumentative in any way - BUT apparently these spray things are for "evaporative dry eyes" so if what you have isn't due to that then it won't have much effect. That may be why all those you have tried haven't cut the mustard?????

      My eye problems started with sudden redness and aversion to bright light - I used to use contact lenses and for a while we thought it was a change in recipe for the solution I used. I changed to daily ones (just kept in saline) and that helped for some time but eventually I went back to wearing glasses. My optician at the time who was brilliant couldn't find any reason for it and eventually I put it down to autoimmune problems with the PMR once that was finally diagnosed - took 5 years!

      Keratitis is a condition - it has various causes and medicinenet dot com says:

      "Keratitis is the medical term for inflammation of the cornea.

      Keratitis has many causes, including infection, dry eyes, physical and chemical injury, and underlying medical diseases.

      The diagnosis of keratitis can be confirmed by the use of a slit lamp.

      If keratitis is treated correctly and promptly, permanent damage to the eye can usually be avoided."

      Note the mention "dry eyes" and "underlying medical causes" - which I think Sjogrens might qualify as, don't you?

    • Light
      Light EileenH

      Posted

      Not for a moment did you come over as argumentive, Eileen. I hope I didn't make you feel that.

      Thank you for this important piece of information. I am seeing my ophthalmologist in a few days and will mention it. She was chosen for her understanding of auto-immune diseases, so it does need to be covered.

    • EileenH
      EileenH Light

      Posted

      No - that was the wrong word, I can't work out what word I meant - but I didn't want to make it sound that I didn't take your problems with the stuff seriously! 

      I have to say I can't imagine why a link with the PMR didn't click if she is good on autoimmune - though maybe it doesn't register as an autoimmune disorder. A lot of things I know about PMR don't seem to register on the radar for a lot of doctors. Maybe their knowledge stops with what they learned at medical school - and much of the new stuff has emerged in maybe the last 10 years. Like it being accepted as a vasculitis, being autoimmune has been around a bit longer I'd have thought. But if you have one autoimmune problem then you are at a higher likelihood of developing another. Has your thyroid been checked thoroughly?

    • sophiesu20099
      sophiesu20099 Light

      Posted

      Try light eyepad (flax seed) or anything with filler 20"seconds in microwave and then on eyelids, gives relief and I think the dryness goes away as the tear glands start working. As often as necessary..for gritty or dry eyes....
  • EileenH
    EileenH willa5

    Posted

    There are over 80 listed side effects of pred - noone gets them all, some get very few!

    Some of the things that have been mentioned so far may be from pred - but I suffered them as part of PMR. I had 5 years of PMR before I was given pred and sweats, insomnia, fluid retention, craving type hunger, mushy brain, sore and gritty eyes, cramps can all be part of PMR too. 

    The euphoria and feeling of being high is common at higher doses - and we always warn people not to think they are now totally back to normal and do all the cleaning - it will always come back to bite you! Some people can actually develop mania and if you are tending to this you should discuss it with your doctors - if you must have pred and nothing else works then you possibly need other medication to deal with the psychiatric aspects.

    In PMR and GCA your entire pred dose should be taken in one go as early in the morning as possible - that is to achieve the best anti-inflammatory effect and it keeps some of the side effects at a lower level by allowing some time for the body to be free of pred. You excrete all the pred in a few hours, the effect lasts for 24 hours to the next dose, allowing you about half the time to be pred-free in your system. And for most of us who have been on pred for a long time the slow reduction is essential - there are 1mg tablets to help with that as well as a couple of reduction schemes to spread the reduction over weeks rather than days.

    • denise76179
      denise76179 EileenH

      Posted

      This is as good a thread to say that I have had the unexplained happiness side effect which is heaps better than getting depression I would say.  About the form Lodotra you suggested I may try EileenH.  I have been on it for 5 days now and the difference is amazing.  It costs as it is not subsidised in Australia, but for how it seems to be working it is worth every cent.  I pay $35.00 a script for the 5mg x 30tabs and $30.00 for the 2mg x 30 tabs.  As I am now on 9mg for the rest of this week then going to reduce again, I may have to mix and match my pred type with these and the ordinary ones as I don't want to reduce by 2mg at a time.  I have been taking the Lod. at approx 9;30pm and for the first time for months have woken up without stiffness and pain every day no matter how much I do ( yes I probably have been overdoing it but my body does seem to be coping).  When I reduce next week I'll take the 7mg at 9:30pm and the 1mg of predlisolone when I get up at 5:30am because it is not a delayed release form.  I'll let everyone know the results. I'm hoping as you have suggested that I may be able to reduce a little more quickly using the Lodotra form.   Will be so happy to get down to 5mg anyway and this info may help others like me who have been having trouble with reducing  
    • denise76179
      denise76179

      Posted

      I also meant to mention that I read a reverse diabetes book and it said to go vegan - which I have and I have lost 1kg in a week and don't feel any worse for it and my overnight sugar readings have gone back down from 8-9 to 7.5 -8 in that same week.  I feel I'm on a winner here - unlike my small bet on the Melbourne Cup,
    • EileenH
      EileenH denise76179

      Posted

      In Europe it is available as a 1mg tablet too because of the reduction problem. I'm interested to hear you too find it seems to help so much - obviously catching the inflammation before it even starts makes a big difference to the dose you need. And it is slightly cheaper than here in Europe and definitely cheaper than in the UK. I wonder why.
    • EileenH
      EileenH denise76179

      Posted

      Be careful on a vegan diet - you MUST have calcium supplements because of the pred. 

      Scientists in Newcastle in the UK have done a small trial with a short term very low calorie diet in newly diagnosed Type 2 diabetes that reversed the diabetes with an effect that then lasted over months at least. 

    • denise76179
      denise76179 EileenH

      Posted

      I do have calcium supplements with D  Mg and a full multi vitamin just in case so hopefully I'll be covered.  This is all very exciting stuff.             About the first night of reduction: From 9mg to 8mg.  I took the 7mg at 10pm approx and this morning I did have a little bit of shoulder & elbow nothing too dramatic ( probably what I was doing yesterday didn't help & I'm too scared to tell you what that was) I took the 1mg about 6am and all so far is well.  I guess that the vegan diet calories are less but I eat from the food groups as much as I like so never feel hungry and seem to have more energy - remembering that I've only been on this diet for less than a week so I'm glad it has been proven in the UK 
    • EileenH
      EileenH denise76179

      Posted

      "what I was doing yesterday didn't help & I'm too scared to tell you what that was" - OK then but don't be doing it again when you are trying to reduce!!!

      There is also a study about a very strict vegan diet in rheumatoid arthritis: in half of RA patients a strict vegan diet led to reduced joint pain for the duration of the diet. It was only half of patients and as soon as any animal protein was reintroduced the pain returned. Unfortunately it was so strict that most patients struggled to maintain it beyond the study and there were problems with including enough protein - you do need to study advice about including protein. Lack of protein is not good for muscles. I have a friend who has been totally vegan for years now and she is still very healthy so I'm not going to condemn it - but she is a really good cook and includes everything she needs very conscientiously.

    • denise76179
      denise76179 EileenH

      Posted

      Yes my dear I promise not to.  Will check into the protein thing but I'm assured that if I eat based around beans with small amount of nuts  & seeds also soy milk and low GI breads with plenty of low GI fruit and veges I should be okay. Keeping the fibre content for day up to about 40mg is also the plan. They do suggest the multi vitamin include B12 just as a precaution and that's easy enough.  Well here goes until I've reduced enough pred to stop the diabetes effect - wish me luck and strength.  
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