Saw a new doctor today. As my GP of many years is now only working two days a week and it is getting so difficult to get an appointment I thought I would see one of the other six doctors in the practice with a view to maybe making a change.
Well I thought I was doing quite well down to 6.5 mg after two years four months (it's been very slow) but commenting on my last blood result which was normal (4) she said she thinks I am ' phychologically dependent ' on Steroids. Apparently she said......"it happens sometimes." Grrrrrrrrrrrrrr !!
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Wenben
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And did she suggest that you don't have PMR any more since the marker was normal? No consideration that it is because you are still on enough pred to manage the inflammation.
Wonder what she'd say about me? Just had a flare - back to 9mg. That's after 5 years of no pred (perhaps I was psychologically dependent on PMR?) and over 8 of pred...
No Ronzy, I just think it is prescribed too much without checking that people actually need it. To be honest the side effects scare me but I would take it if I had Osteoporosis and it was likely to get much worse, quickly, because I was taking Pred. That’s why we say push for a DEXA scan first which checks your bone density. My GP was really pressuring me to take it but my DEXA scan showed that my bones were strong so I just take calcium, vit D and Magnesium.
I had to rush off to board my plane or I would have tried to do a better post.
I think it is also a drug that you should only take for a limited time as well.
The point I wanted to make is that it is as dangerous as Pred but doctors seem to think it is a wonder drug. Recent research shows that Pred is not even that bad on our PMR doses.
Not yet. Husband has taken me to Berlin for the Christmas Markets. Going to Australia after Christmas ( didn’t fancy the barbie on the beach with all their yummy mummy and dashing daddy friends). I love a traditional, cold, climate, quiet, Christmas. We will see the new year in, in Sydney in an apartment that overlooks the Harbour Bridge. Then we fly to my 4 grandchildren. Then the hug with the one I looked after from baby days can happen in between being very fair to the other three, whom I love as much but never looked after.
I can’t wait, if I hugged as hard as I feel the love he’d be squashed.
My ideal too! But something a bit warmer than here at present would be acceptable - if only to remove the snow/ice that makes going for a walk a trifle risky!
I just read your comment and since I live just north of Sydney I thought I would jump in. The temperature today has been 40 degrees and then we had a little storm and now the temperature is 20 degrees. Thats a traditional Christmas for us Aussies (and just the way I love it), but you will love New Year overlooking Sydney Harbour. It's magnificent every day but with the fireworks is very spectacular. Enjoy your holiday.
This will be about my 10th visit to Australia. My eldest moved to Bondi Beach about 13 years ago. She is now a full Australian Citizen. Glad to hear that you get respite days from the heat. We will be staying in Sawtell and Bellingen, where I have 2 daughters, their husbands, and 4 grandchildren aged 9, 4, 3 and 9 months. I have been soo cold when she used to live in the Blue Mountains, I bought a sheepskin jacket out there.
If you see me grumbling about Australia, I mean no harm. I just resent it sometimes for swallowing my family. They love the life out there.
Wishing you a happy Christmas 🎄 and a happy healthy new year!
Oh Jane, I absolutely feel your pain. It's a huge thing to lose your babies to another country and I was often secretly afraid that mine may have met a foreigner and gone OS to live. Thankfully my daughter only went to Melbourne.
It's ok to grumble about the Australian weather - most Australians do so you hear it all the time. I just love it whatever it's doing. Have you thought about moving here to see more of your family?
Thank you for your lovely Christmas wishes, I hope you have a fabulous Christmas and a happy healthy new year too. xxx
Yes Jane is right, it will be lovely mid May although it's all relative isn"t it and getting too cold for me then. Australian weather is not what it used to be for some reason and so can very quickly change.
Terrigal is lovely and about 10 minutes from my house, why don't I come over and we could have a cuppa together? I realise you'll be busy but seems like an opportunity too good to miss.
Ooooooh - that would be lovely! I try to get there the day before at least to try and recover the jet lag a bit. Last time we had long lunches - but worked after dinner too and we (the patients that is) did point out that we do all suffer from autoimmune disorders and fatigue is a major component! They had given us handouts telling us to pace ourselves - and "only" attend the bits we were programmed for, and not to feel we had to go to extra things. I (and others) never had a break and the only optional things would have been lunch and dinner!
I might not have put on as much weight I suppose ...
My youngest son is in the U.K. I think you can only get in if all your children are in Australia unless you have sought after skills or are mega wealthy, neither applies to me. Even then I would be my daughter’s dependent, if I got sick or anything. It would be like choosing to be a second class citizen when everything we have worked for is here. Having said all that, if any of them really needed me I would be there like a shot.
When I didn't want to take the AA my rheumy wasn't amused - I asked for a Dexa Scan and she kept repeating - "we will do that at the END of your treatment".!! Well she took me off the steroids after about 18 months - and still no offer of a Dexa scan!!! (My GP put me back on the steroids so I'm not destitute). But reading up a lot on it and it seems the AA is not particularly "needed" if you are under 65 - which I am (Obviously if there is an issue it could be required). This Rheumy was just covering herself - and also taking me off the pred - which as I said before was an absolute disaster. What would we do withoug Google?!!
You will, just follow either the Dead Slow and Nearly Stop or Tortoise and Hare.
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Ah! But did she use the new 'PainOmeter' test on you!! Or was it a highly educated guess! Really know how to lift spirits some of the docs! Well done you. ATB
You can ask for a second opinion, always bear in mind that another GP will read the previous notes on your records. You are the expert on your body and how you feel. If you need to, as a personal trial, ween off steroids until there are none. If you have a flare up, point proven.
I wonder .....no I don`t anymore, as I have had those sort of remarks (addict from my sister!) and rheumy......but why would any of us want to be on steroids if it wasn`t necessary!.....I am 6 years down the line, and cannot move (at this moment in time) without 10mg.....but one doctor said to me....you have a life, and if this is what you need......and as PMRpro says....you need what you need!......
The difference of opinion between doctors is amazing sometimes.....
This is an Interesting article I found. I agree with it and I think that most of you who are suffering and need to take prednisone in order to have a better quality of life will too.
Hi, I'm Teresa (age 61) and I have been diagnosed with RA. Finally got the diagnosis after X-rays of my hands showed bone erosions. I suffered over 10 years without knowing what was wrong with me. I am seronegative for RA factor and most of the doctors didn't know what was wrong. It's a real long story and I won't go into it. I have all the symptoms of PMR, but have not been diagnosed. I have been taking 5 mg of prednisone daily for almost 4 years. Sometimes, like today, I take more... 5 mg more. I am so exhausted and need to try to get some work done around the house and I hope it will help. I am disabled from more than one autoimmune diseases. I took Enbrel and Humira until they stoped working. Tried Xeljanz... was on it for three weeks and stopped taking it due to it causing a horrible case of shingles. My doctor wants me to start back on Orencia. I was on it for two weeks and got a cold that almost turned into pneumonia. Seems to me that the biologic drugs have severe or life threatening side effects that are very unsafe compared to prednisone. My bone density test that I had last month was normal. I am scheduled for cataract surgery in January. I might have gotten them without taking prednisone as there is no way to know for sure. Prednisone has been a lifesaver for me. I still struggle to survive the awful disease/diseases that I have and I don't think prednisone is as bad as some of the drugs that I have taken. I don't know why some doctors are so afraid to prescribe it. I'm sure they would gladly take it themselves if they suffered the same fate that we everyday like we do.
Hope this helps some of you who are worried about the side effects of prednisone.
"Seems to me that the biologic drugs have severe or life threatening side effects that are very unsafe compared to prednisone."
Exactly my point when I have quoted the paper you mention above. Eric Matteson is a member of the committee which drew up the guidelines for management of PMR - and is very concerned at the terror that is so obvious amongst many doctors about using pred for PMR.
After 60+ years you would think there is little to learn about using pred - which isn't the case for the biologics.
Teresa, I just looked up Orencia and it seems if you've already tried it and suffered severe side effects its isn't the medication for you. If prednisone is providing you with some relief and giving you a reasonably good quality of life it seems wise to stay with it, and who knows maybe something else will come along in the not too distant future which will be safer than the biologics appear to have been for you. As you say, we keep hoping. Hugs.
If anyone, including myself, took the side effects listed on any of the biologic drugs seriously, we would refuse to take them. They promise so much and deliver so little in my case, anyway. I have had two RA Vectra scores done while on biologics and they both came back in the high range which means that my RA wasn't being controlled or getting any better.
I think that we feel so bad at times that we are willing to try anything to provide some relief to our pain and suffering. In my case, I am so confused right now and don't know if I will try Orencia or not. There no cure for RA, and I am beginning to wonder if any of these meds will ever help me. If they help others, then they are the lucky ones. I am so happy for them. I know what I should do... just stay on the prednisone. Then when I go to my doctor she wants me to go off of it and try Orencia. Some days I just want to give up, but I also want to see my grandchildren grow up. I know that is wishful thinking, but all we have is hope... and I am hoping that someone will find something to help us to feel better before it's too late.
I have chronic lower back pain and PMR. So I get crap because I'm on opiates for my lower back pain and if my rheumatologist ever started giving me crap about my prednisone I would get a new doctor. I am no more an addict than a diabetic is to insulin.
You do right I just don’t get it all drugs have side effects. My old doctor did is best to scare me with crumbling bone diabetes
As I was walking out of door saying you won’t like it when you’re bones are crumbling 😱😲
This is after six years on pred
As I have said drugs effect us all differently. I feel I am v lucky no side effects apart from an addition according to buger lugs 😱 the frightening thing for me was it wouldn’t matter how much I suffered they wouldn’t proscrib it for me. 😬😱 at least I don’t smoke Hadley any alcohol no silly drugs
Snap. I had the usual constipation with strong pain killers and was told to reduce them....like I haven't tried before. I would love to be in a position to stop all the drugs but quality of life would be zilch and if I had gas oven my head would be in it.
It is actually rare for a chronic pain patient who takes opiates for pain to become addicted to them. This is a common misconception because the press and the government are feeding the people bad information based on bad studies. What a chronic pain patient does get if he or she takes opiates on a regular basis is dependency. In other words their body is physically dependent on that opiate and if it is stopped abruptly that person will go into withdrawal. But there is no mental addiction to the drug. Someone with the kind of pain that needs opiates to control it do not get high when they take it. It may make them sleepy but they do not get a euphoric feeling from it. Therefore there is no addict type behavior.
Agree totally amkoffee. I never get a "high" and have periodically detoxed and suffered withdrawal and then increased pain to allow lower dose to function better. A week or so of suffering does mean they manage pain better. Ha vent been pain free for almost 20years and would rather have pain controlled to some extent even if physically dependent.
I am really sorry that you have had to spend the last 20 years in pain. It's been 13 years for me. 10 of those years I've been on opiates. I don't know about stopping for a week to keep them working better. Stopping them and going through withdrawal is really hard on the body. In fact it can be pretty dangerous. And frankly I don't want to go through all that. However I was on the same dosage for 7 years. And then a month ago my doctor lowered my dose to comply with the CDC guidelines. (That's a US government agency that has really hurt us pain patients in the US.) Anyway I'm in constant pain now that they reduced my dosage.
I did use some aids and helpers when I detoxed. I was in the early 50s and relatively healthy.
Yes the gov did that here about 3 years ago. I seemed to have managed to get them raised by extra 200mg back to preregulation level. I had to keep.going back and said I needed stronger Pain killers if they were reducing the dose. I Experimented with slow release and normal. After 4 months got back to 800mg and ci-codamol for breakthrough pain.. There are times when I feel I could do with a mix of both slow release and normal . I hope you can work with doctor to get back to a place where pain controlled to liveable level. 🌻
Poopadoop it is not likely to happen very soon that my doctor will feel comfortable raising my dosage. Here in the US our country has gone insane. After voting Trump in as president things have gone from bad to worse. Every politician in the country wants to be the one that puts a stop to the opiate crisis. Whatever it takes to get votes. The problem is they're going after the wrong people. They're throwing money at the addicts so that they can buy more drugs to supposedly help them get off of the heroin and other opiate type illegal drugs. And then they're trying to make it illegal to give us our much-needed pain control opiates. It's just crazy what doctors are doing to patients.
That's bad. It shows not consideration of pain management vs recreational use. In the end people will be buying from.streets to have quality of life. Where are you exactly?
I live in the Midwest USA. Wichita Kansas. And people are already doing that. They're buying heroin to control their pain! There are also pain patients that are committing suicide because their pain is not being control.
That is a terrible state of affairs. But I can fully understand that kind of desperation. I have heard of people having to cold press (?) Paracetamol and codeine pills to extract latter as only option left. I am just glad there must be some kind of discretion here. Hope you can find some relief xx
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Adrenals are working!
Update on progress
Yet another update
Update on grief over friend and pain when tapering 
No real change with the rheumy!!!
