Why does pred make some us feel so strange and others feel ok
Posted , 9 users are following.
As most of you will know I have taken pred at 15 mg and am now down to 11 .5 mg over 5 months . I feel very lucky that when this started for me it was what seems like hundred of years ago , and in my right neck shoulder and arm , although I had very painfull symptoms in my face and head since I was 24 . I never had the pain that some of you have suffered so badly . The underlying pain is there occasionally but controlled with painkillers. But the shaking and tiredness has come on since taking the the pred.I feel confidence slipping away . As I have said to Margeret who is certainly having a rough time at the moment ,to go with the flow ,and float ! but what in this tablet makes me feel as though I have gained 20 years We go away next week to stay with friend for a few days and I'm not really looking forward to it any more Incase I can't keep up .
3 likes, 20 replies
pat38625 carol16456
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I look after me, I come first. I do what I want to do, when I want to do it. I have had to cancel drs, hospital, opticians, friends ect., I don't care what people think of me, my health is my wealth, never a truer word spoken. If people don't understand then it lies with them. I am a very reliable person but the illness is unreliable.
If you cannot keep up, then use your voice and speak up, people cannot understand if you don't tell them. You may be able to keep up. You are experiencing fear of something that hasn't happened yet. You take care. Regards Pat
ann57025 pat38625
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thank you for the message to
ann57025
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i was happy to read your message to Carol
i am now down to 20 mg trying for 19, have been following the slow reduction, has taken since November to get this far from 40mg.
i have been a touch worried as I am going on a craft cruise on 1st April to 15 April then a couple days in Singapore, going with a few of the ladies from my craft group, we go from Fremantle WA to Singapore. Worried that I won't keep up etc.
your advice helpful
cheers
Ann G
pat38625 ann57025
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pat38625 ann57025
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ann57025 pat38625
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my husband is very supportive. This site has been a great help, realizing that others are in the same boat and I am not just being a drama queen.
thanks again
Ann G
carol16456 ann57025
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The one problem I find is that we use to walk 7 or 8 miles , no problem , and people look at me now and because I don't look ill or uncomfortable , they always ask after my husbands health , he has been very ill but thankfully in remission . However sometimes it would be nice to be asked , if you know what I mean ? I hope that doesn't sound to selfish . Have a good holiday sounds like a good trip . Just say ,as I will try to say 'I'm having an hour ' of .
erika59785 pat38625
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Hope, all is well with the implant procedure healing. Thinking of you, Erika
pat38625 erika59785
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Oh yes I went and got my stitches out last night and he was very pleased with the healing procedure, and so was I. There is still a wee bit of swelling but it will go down eventually. So I had to leave my partial denture with my own dentist this morning to get an impression as the implantologist had to take a tooth out, well it was ready to walk out it was so loose and it was a crown. So go back to my dentist tomorrow to collect lower denture (I do have a spare) and she will adjust accordingly.
Then back to implantologist 30th March just for him to have a wee look and see how things are doing.
I just know you are a very young 74 as for me I am 38 in my head lol. But sure Erika, we are alive and breathing, yes aches and pains and PMR and pred but I bet if everyone through their problems into a mixing bowl, we would still pick our own. Sending you loads of positive energy and healing. You take care now. Pat
pat38625 ann57025
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Like yourself I was like Magnus Magnison (Mastermind) I have started so I will finish. Not anymore, I do what I can, when I can. It's great that your husband is very supportive. I have 2 sons, one is still living at home and he is 33 soon, he is good to me and even with ME he was brilliant. I am very independent, I go everywhere by myself, join classes by myself. So having to ask for help can be a bit difficult, but I am learning. You take care Ann. Lost of healing and positive energy going through the airwaves to reach you now. Pat
jennissw carol16456
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pat38625 carol16456
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EileenH carol16456
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Actually, you can't necessarily blame the pred for the feeling older. The PMR itself does that very effectively. Remember, what we call PMR is not the disease itself, it is the name given to the symptoms which are caused by an underlying autoimmune disorder of some sort that causes your immune system to not recognise your body's cells as "self" and attack them as if they were an invading virus or bacterium. Autoimmune disorders very often cause fatigue and that is enough to leave you feeling pretty "left behind" on its own. In PMR you have muscle and synovial (joint lining) effects that make you stiff and sore as well. Being in pain or discomfort also makes you feel "left behind" when every movement requires so much effort or causes pain, even if it is low level. It is said by the experts that PMR doesn't cause weakness - but it is the only word I can think of that expresses the sensation of "I just can't..." when you are attempting to hold, grip or pull at something.
PMR hits everyone a bit differently, so does pred. We often say that there are 82 listed side effects of pred but no-one gets them all, some get very few. You say you never had the bad pain lots of people talk about and it is possible that you, like me, had it fairly mildly for a long time and it just so happened the pred coincided with a much more active stage of the autoimmune disorder. And once you started the pred - which in itself can cause tiredness - the improvement in the pain and stiffness means you did do more and are suffering the results. Your muscles are still intolerant of exercise but your expectations are increased and all of it together is too much.
It is a bit like a really bad dose of flu - and that is something many people complain about before diagnosis, they think it may be flu. You wouldn't expect to be up and doing a few days after having had proper flu - you'd expect it to take a few weeks to feel fully back to normal. But the cause of the PMR symptoms has been active for a very long time so it will take some time to get over it even once it is no longer active - and at the moment it is still active.
Your family and friends will have to learn to live with and accept you being a bit slower - but don't make the mistake of forcing yourself to do what you know at the back of your mind is too much for you. If you do the effects will last for days - whereas if you stop in time and let the others do their thing while you sit and have a bit of a rest you will be able to do something later. You can rest BEFORE going out, or having a rest in the afternoon means you'll be bright-eyed and bushy tailed for the evening instead of feeling like curling up in a ball and being miserable at the dinner table.I could do loads more if I did a short ski run and then rested on the lift repeatedly rather than setting off on a longer run that was no further altogether but where I didn't have that rest in the middle. I learned the hard way ;-)
margaret22251 carol16456
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carole, i would like to know why some are effected my this drug and others not, i am sure someone will let us know, i had to really try last night not to get up tight, as my head felt as if someone was gently sticking pins in it, read for an hour,hubby checked on my said do you want light out, no i said as i wanted to try and relax before going to sleep, which i must have, as i woke up at 5, got up at 6
so a good night real;ly. Hope you can have a few good days away. take care
EileenH margaret22251
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"Side effects occur because most drugs aren't specific in their actions. We may call a drug an "anti-inflammatory" or "antidepressant," but medications don't just go to the cells involved in these problems. They go to most of the cells of our bodies, which can provoke undesirable effects. Thus, an anti-inflammatory may reduce your joint pain, but it may also cause stomach bleeding, kidney failure or anxiety. An antidepressant can improve mood but can also cause insomnia, nausea, weight gain or diminished sex drive.
(A famous example of this is viagra! It was developed for heart problems but it is most used for another side effect ;-) )
Most of these unintended effects-side effects-are dose-related. You see the same phenomenon every day with alcohol and coffee. In moderate amounts, they cause few problems. But at excessive doses, coffee causes edginess and insomnia, and alcohol impairs thinking and coordination.
It's the same with medications. Indeed, in the 1998 JAMA study cited at the beginning of this article, 76.2% of all side effects were dose-related. Melmon and Morrelli's Clinical Pharmacology places the number at 75% to 85%. I believe the number is higher, because many drug interactions are also dose-related. When people take multiple drugs, higher doses cause more adverse interactions than lower doses. Whatever the actual number, the first key to avoiding side effects is this:
Most side effects are dose-related. Hence, the problem isn't the drug itself, but a dose that's too strong for you.
Thus, the best way to avoid side effects is to use the lowest dose that works. Excessive dosing merely increases risks.
Individual variation:
Why do side effects occur in some people but not in others? Because people vary tremendously in their sensitivities to medications, just as they do to alcohol and coffee.
The American Medical Association states that the difference in people's response to a specific drug can vary "4- to 40-fold." With such variability, it isn't surprising that some people can drink a pot of coffee without problems while others can't handle a cup. Similarly, it isn't surprising that some people need 80 mg of the antidepressant Prozac® or the cholesterol-lowering drug Lipitor®, while others need just 2.5 mg.
Individual variation with medications isn't the exception; it's the rule:
The basis of individual variation is well known. People differ greatly in how they absorb, metabolize and eliminate drugs. The new science of pharmacogenetics has revealed wide variations in the efficiency of people's liver enzymes in processing drugs. People also differ in the sensitivity of their tissues to medication effects. These factors change with age, and many people become more sensitive as they get older.
Some people are sensitive from the start. My sense is that about 10% of people are highly sensitive to medications. I call this a general medication sensitivity. Some doctors dismiss such patients, but these people are real enough. Often they are "poor metabolizers" with inefficient liver enzymes that are genetically determined. With standard doses, they develop high blood levels that provoke side effects. Such people need exceedingly low doses.
Because of the great variability between people, it is essential for drug doses to be tailored to each person's needs. I call this precision prescribing. Doctors already practice this with a few drugs-digoxin, insulin, thyroid drugs-but not with most drugs. Many drugs are prescribed one-size-fits-all or at doses that are identical for young and old, big and small, healthy or taking six other drugs at the same time. The failure to match drug doses to individual needs underlies the high incidence of side effects.
Drug companies and the FDA routinely ignore the wide differences in people's drug tolerances and the fact that most side effects are dose-related. Doctors, accepting uncritically drug company dosage guidelines, don't think twice about prescribing the same doses of powerful drugs to young and old, big and small, healthy and frail. They ignore patients with long histories of medication reactions. Cookbook dosing is the rule, and an epidemic of side effects is the result.
Even when studies show that half and quarter doses are effective, the data is ignored and dosing is one-size-fits-all. Even when studies show that women or the elderly respond to lower doses, they get the same higher doses as younger, larger men. Something is very wrong when Shaquille O'Neal, Ally McBeal and Grandma Moses are getting the exact same doses of potent drugs, yet this is exactly how many drugs are prescribed.
"To think that the same dose will do the same thing to all patients is absurd," says Dr. Raymond Woosley, Vice President of Health Services at the University of Arizona. "Patients need to be titrated, starting with the lowest possible dose that could have the desired effect."
Experts everywhere agree with him (Table 1), but that's not how it's done today. The side effect epidemic isn't caused by a few bad drugs, but by bad dosing methods with many drugs."
This is what is being done with our pred, as I've explained before. We are started on the lowest dose that they are confident will deal with the symptoms - it used to be PMR patients were started on 30mg or even more. It achieved a good result in terms of the symptoms but the side effects are related to the total dose you take and since in PMR you are going to be on it for some time they looked more closely and realised that 15mg worked for the vast majority of patients. A more recent study showed that 75% of patients respond to 12.5mg but it can take up to a month. Would patients carry on taking it that long without seeing a decent result given the other side effects?
Having got the inflammation under control the idea is to then reduce the dose slowly to find the lowest dose that works to manage the symptoms and so to reduce the risk of the side effects. Doctors tend to try to reduce too fast or in too large steps and the symptoms come back. Lots of patients could probably manage with less if it was gone about in a better way. That's why I and others keep going on about slow reduction - if you go too fast you overshoot and have to go back to the beginning and start again which probably adds up to more pred in the long run.
Maybe it would be better to start with a week of 5mg and then go to 7.5mg and so on until you find the dose that works for you - but you might not get an effect for some time and decide it isn't working - 15mg gives a good result quickly and so you have a bit more evidence that it is PMR. It is all about balancing the downsides and the benefits.
snapperblue EileenH
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erika59785 snapperblue
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