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does prednisone really cause all those side effects?

Posted , 9 users are following.

noninoni
noninoni

I am skeptical.  For example, cataracts are due to age.  Mine had nothing to do with prednisone.   I have had thin skin for 20 years at least.  Every medication out there causes gastro-intestinal problems.  Crankiness and irritation may be due to age and feeling horrid.

      The trouble is you can't test prednisone because it is the only treatment for PMR.  There are no good controls.  One of the biggest problems of medical research is that once a treatment becomes the "gold" standard, it is unethical to not treat.  For example, if triple bypass surgery or hernia surgery is the standard, you cannot withhold that treatment just because you want to do a study.

      I have just been reading a bunch of really lousy studies that claim there is an adverse event dose response for prednisone, that the higher doses of prednisone cause more and more severe side effects.  These studies just brush off the confounding factor that higher doses of prednisone are given for more serious disease.  Consequently there is not way to distinguish underlying disease and the prednisone dose.

     So those fancy meta-analyses, confidence intervals, etc.,  mean absolutely nothing!

     Yes prednisone may cause severe side effects, but we just don't know.

4 likes, 15 replies

15 Replies

  • tina-uk_cwall
    tina-uk_cwall noninoni

    Posted

    Hi noninoni, I have read with great interest lots of the threads today about how different countries use different criteria to diagnose PMR. Maybe it will turn out to be that actually I didn't have PMR after all and I should have been treated for something completely different, I don't think so though? but while many clinicians are so ignorant if this condition and also of other conditions, if it is the case that some of us may not actually have PMR then what can we do. In my case I have, apart from a flare up at 8 mgs so I'm back up to 10 mgs till hopefully next week when I'll do the slow tapering method to get to 9 mgs, prednisone has worked really well for me.

    you talk of some of the side effects actually naturally occurring in humans anyway. I think there is some truth in that, only because as a matter of precaution I now have my eyes tested every year as opposed to every 2 years and my optician said exactly the same, that she has patients that have been on steriods for years  and yet their eyes are perfect, yet she also has patients who within a very short time of taking steriods have already seen eye damage. So could any side effects that we may or indeed may not experience be down to our genes and how they cope with steriods.

    but I surpose until they fully, find a definitive cause and then cure and or treatment plan we all have to hope that we are nevertheless receiving the best clinical care given the mysteries of the condition.

    Eileen, you mention that preds may or may not reduce your life span, well I'm sure I read an article/paper that states that there is limited evidence that preds reduce our life span. But again let's ask the question how old were the patients that they had based that answer on, we're they very elderly anyway? We're they on long term use or just 2 and a bit years or so? Statistics, statistics, and statistics what are we to believe? Christina 

  • constance.de
    constance.de noninoni

    Posted

    High pred dose certainly caused very severe side effects with me!
  • EileenH
    EileenH noninoni

    Posted

    Part of the whole thing is that in some ways steroids mimic the aging process/speed it up. There are different sorts of cataract - and if I remember rightly ordinary age-related cataracts are different but their development is probably speeded up by pred. There is one sort that is only ever found in patients with a history of taking pred.

    I tell everyone who is worried about taking pred: there are 82+ listed side effects of pred. No one ever develops them all, some people develop very few. You find out which you are when you are on pred. But pred is not just pred. I have been on 4 different types/formulations of pred. With Medrol it was awful, I gained weight, became Cushingoid, grew a beard. None of that had happened before and when I switched to a different type of corticosteroid it all disappeared. I thought it was fairly conclusive.

  • noninoni
    noninoni

    Posted

    statistics, statistics, whom are we to believe???  They say you can prove anything with statistics.  Yes that is true.

          I would say you can prove anything with a misuse of statistics, and when you have only a limited understanding of good study design and statistical theory.  Those very few of us who are well trained cry at the misuse. 

  • barbara75814
    barbara75814 noninoni

    Posted

    Wow--the more I read, the more I wonder about polymyalgia rheumatica--what it is (truly), whether it is a symptom constellation ONLY (not a disease) and on and on and on. Somehow I feel that scientists at present are barely skimming the surface of examination of this conundrum.

    And sometimes I get the feeling there is a strange kind of stubbornness, a resistance to new ideas, out there among rheumies and others involved. Maybe this is what occurs with respect to all fairly early investigations of matters medical.

    Thoughts?? Barbara

    • EileenH
      EileenH barbara75814

      Posted

      It has been established for a few years now that fibromyalgia is a "real" illness with a physiological cause -  but the doctors who meet the patients are lagging behind. Yes, fibromyalgia is all in the head - but not imagination as so many believe but a faulty processing of pain signals within the brain.

      What doctors (most of whom are not scientists or scientifically trained) learn at a particular part of their training remains to the forefront of their awareness. Specialists are usually slightly more aware than GPs - who it isn't entirely fair to blame for not being up to speed on the latest thoughts given the broad spectrum of disorders they must know a bit about. But many of the specialists we see don't attend the big meetings, if they do there are so many parallel sessions they go to the ones that sound exciting to them. Which probably doesn't include the PMR session! That said, there was a German meeting a few years ago where the (German-speaking) doctors were sitting on the steps in the aisles and standing anywhere there was a space to hear the PMR session!

      A year or so ago, scientists in the London area came up with some new very basic work on GCA - which is being extended to PMR and sheds some light on the mechanism of managing them with pred and possibly will lead to a far better way of monitoring therapeutic success. Ultimately there may even be signposts to a cure. 

      Things will change in the next decade or so - the raising of retirement ages all over Europe will make it a far more economic question. Until recently only "little old ladies" suffered from GCA/PMR, they didn't go out to work, their handicap didn't affect employers - and government departments didn't have to hand out benefits to people too ill to work. But since it is now realised people in their 50s (and younger) can develop them, you will be looking at a 15-20 year period before state pension age where people may be not contributing due to such illnesses. It will mean costs...

  • JandaPea
    JandaPea noninoni

    Posted

    Wow! what a lively discussion and how erudite you all appear to be. Speaking from my own experience only I can say that apart from the normal process of eye degeneration (needed longer arms!) due to age (82) I had no trouble with my eyes until 2 years down the PMR journey and using 15mg. regularly,  now after 3 1/2 yrs. using 10 1/2 mgs. daily and reducing slowly. I found that I had cataracts, glaucoma and dry eye syndrome on top of very thin skin and a moon face.These afflictions I can only ascribe to prednisolone. I have had the cataracts removed and new lenses fitted, the glaucoma needs nightly drops, which are no problem, the thin skin, I always carry plasters for those skin tears, moon face, well I was never very handsome!

    I ask myself what is worse; the debilitating pain and life altering condition known as PMR or the possibility of blindness. A no brainer really.

    By the way I have found a Bowens massage practitioner fairly near to me and am happy to report that after three sessions the very troublesome sciatica/piriformis syndrome I have had for at least 5 years appears to have abated. I intend to get her to work on my neck next, we live in hope.

    Blessings.

    • EileenH
      EileenH JandaPea

      Posted

      Oh JandaPea - how lovely to hear my banging on about Bowen has had another success! 

      I wish it were only needed longer arms for me - but I am very short-sighted anyway so if I hold things further than 18" or so away I can't see it at all!

      I am probably the only person on the forum who would greet cataracts - as it is I have specs on my nose from getting out of bed until going to bed. If I had cataracts I could have long distance lenses and then would just need reading glasses - BLISS!!!! I'm assured by the eye specialist there are none to be seen! cool Oh well...

       

    • paula63201
      paula63201 EileenH

      Posted

      Hi Eileen.

      I'm with you on cataract surgery. Am blind as a bat w/o glasses. Now I can't drive at night (halos around lights!!) Cataracts are 'maturing.' Yay removal, soon, I hope. BTW, opthalmologist says there is a difference between prednisone related cataracts and regular old age ones. They look different. Mine are 'old age' related. I am 68. Although, I have a friend, who had hers removed at the age of 40!!!!! She was not on prednisone.

    • EileenH
      EileenH paula63201

      Posted

      Yes, I mentioned the different sorts somewhere else. As well as the pred-related sort, for some people the usual sort of cataracts are already there and mature faster when you are on pred - is wasn't the pred that caused, them, they just hadn't appeared yet.

      I'm sure I read somewhere they don't have to be left to "mature" any more - once they start interfering with life they can be removed - worth asking maybe?

    • paula63201
      paula63201 EileenH

      Posted

      Hi Eileen,

      You are right. My cataracts are as mature as I want them. Like a ripe camembert...

      I have an appointment with an eye surgeon on March 18. In the meantime, I don't drive at night, at all, and try to stay local. I also take comfort that it is cold outside, that most of my classes will either get cancelled or the roads will be too icy for me to get there safely. Tricking myself and breathing deep to stay patient, as I can hardly wait for the surgery and hope surgeon won't tell me that the cataracts haven't 'matured' enough.

      I also had another talk with the rheumy about it. Her thought of preferring I be on a lower Pred. dose (5 mgs or so) is that she is concerned that with long term use, the cataracts might grow back and I would need to have them done again. She also said that the eye surgeon is the one who should make the determination and would know better.

      Thanks for all your advice! And thank you noninoni for your report.!

    • EileenH
      EileenH paula63201

      Posted

      Pardon? Once you have artificial lenses cataracts can't "grow back"! I realise she is a rheumy and not an eye specialist but really!!!!!!

      "Can you get cataracts twice?

      - Absolutely not! At most, what may happen within months to years after having cataract surgery, is the formation of cell growth across the posterior capsule that sits behind the new lens implant.  This can cause some haze to the vision but is easily treatable by a less than 1 minute YAG laser treatment. The vision then sharpens back up within a short time."

      If you need more than 5mg to control your symptoms it isn't going to make any difference to cataracts! She'd better do a bit of reading though if that is what she'd telling her poor patients.

    • paula63201
      paula63201 EileenH

      Posted

      Hi Eileen,

      Perhaps she meant that cell growth. I was unable to question her further, and figured I'd ask the eye surgeon. Once I talk to him, I'll inform her of what he says.

      At any rate, if he says go for it, when I see him in March, despite being on 7 or 6.5 mgs, I'll go for the surgery for sure. These halos and rainbows are all very nice and psychedelic, but otherwise blech!

      I appreciate your support and knowledge. I agree with the person who suggested you write, or have actually already written volumes on PMR. Would be a really handy book to purchase for all diagnosed for PMR!!

      Paula

       

  • noninoni
    noninoni

    Posted

    Cataract surgery: a fantastic, wonderful, a magnificent gift to the elderly- I Just had it!   No pain whatsover.  Now my Britanny is red and white rather than red and a smeary yellow.  I can see each hair.  Glare is much reduced- not gone away yet, but probably will.  

        Point lights are currently rather funny, as the capsule that holds my lens in place is apparently very slightly wrinkled.  This may go away, but in the mean time I am amused.  So stars look like little airplanes.  I imagine them as my star-wars fleet. Since I had the 2nd eye done, distance headlights or other point lights look like smiley eyes.  Everywhere smiley eyes. Otherwise vision is fantastic, sharp and clear.

  • helen03290
    helen03290 noninoni

    Posted

    I was diagnosed with PMR 2.5 years ago. 1 year ago I was told to severely cut down on the prednisone (15 mg) so I did. Not too bad till I hit 10 mg. Then eye problems, nose problems, followed by pneumonia like symptoms. They prescribed antibiotics 7 times, which did not help. I could not walk and breathe at the same time. Still they told me to cut back. I cut back to 6 mg and ended up with severe bronchitus which nothing would help. Seemed like glue was coming out of my throat. My lungs were hardening they told me while still saying cut back the prednisone

    Now I take more prednisone but I have to take 20 mg where before 10 would do to functional and 30 to feel as I did at 30.

    I had no side effects while taking prednisone and I am 64.

    Even with side effects it is better to take prednisone in most cases unless you really enjoy not being able to walk and breathe at the same time and having constant pain and swelling of the body. My ankles wer about 8 inches thick when I but back and I couldn't wear shoes but now both are normal.

    Of course I still want to cut back, but not at the cost of having my lungs harden so I need tubes inserted or swelling up with the muscle pain associated and being unable to walk never mind do anything more functional. Life is actually good again where in June I could barey get out of bed some days. 

     

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