feeling really anxious
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I Had various bloods tests last week including esr as I have had raised inflamatory markers for at least 14 years. I have fibromyalgia and have increasingly bad pain and fatigue. At the moment I can barely lift my left arm, I have back and hip pain and very very painful knees which I put down to fibro and osteoarthritis. My gp who I have only seen once before as I am new to the practice was happy to try me on prednisone for a week to see what happens. If it doesn't have any effect he will start testing me for possible rhumatoid arthritis. I am feeling ridiculously anxious about starting the steroids though.on the one hand if it proves PMR I dread the thought of long term use but on the other hand I can't cope for much longer with the pain and fatigue. I just want someone to tell me that a week on prednisone won't cause me to become hugely fat and aggressive!
2 likes, 27 replies
constance.de grandmaDylan
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Good luck. Constance
marilyn78221 grandmaDylan
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if the steroids take away the pain I wouldn't worry about them I haven't heard that side effects happen in a week, it's long-term that can cause problems. I have been taking them for 3 years and I haven't put on weight and as far as I'm aware I haven't become
aggressive - but maybe my friends are too polite to tell me! Doses of around 10mg made my skin go very thin mainly on my arms and I bruised very easily, again on my
arms. When I got down to 5mg those side effects disappeared. I am now down to 3mg and hopeful to get off them altogether some time this year.
i hope you get some relief from your pain.
snapperblue grandmaDylan
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The pain from PMR is caused by inflammation and chronic inflammation is bad for you. We with PMR have to balance the "good" of prednisone (relief of pain, reduced inflammation) against the "bad" (reduction of bone strength, unless you are treated for this; side effects).
If a week of 15 mg of prednisone eliminates your pain, you likely have PMR. For some people (including me), it took a week on 20 mg. Then you will be informed enough to decide where the balance point is for you. But don't be afraid of a week's trial.
EileenH grandmaDylan
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You have to look at this way: what is being a bit cuddlier compared to constant pain and disability? You will probably put on some weight - on the other hand, in the last two and a half years I have lost 38lbs in weight while still taking pred. I had put on weight with PMR and being unable to exercise - I wasn't on pred. When I eventually got put on pred I didn't at first put on weight, it jsut rearranged itself. Then I was switched to a different form of pred when I moved from the UK to Italy and then I put on weight - I had to increase the dose to 20mg as it didn't seem to work for me.
My new GP was rheumatology trained and she suggested another form of pred - and since then I have lost weight slowly but steadily by cutting carbs drastically. I know others have lost weight using Weight Watchers and several have also found they didn't put weight on by doing the same as me and really cutting back on carbs.
And although some people do become bad tempered and moody it is more likely at higher doses - with PMR you shouldn't ever be on more than 15-20mg and that only for a couple of months at the most. And believe me, in the 5 years I had PMR undiagnosed and untreated I was far more bad tempered and aggressive from the pain and PMR than I have ever been on pred!
linda17563 EileenH
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EileenH linda17563
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In the UK you are usually on prednisolone, either ordinary white or enteric coated which take longer to work but are less hard on your stomach. There is another substance called methyl prednisolone, sold as Medrol, which is supposedly more effective - but of course that means for some people more side-effects too. That was what happened to me but here in Italy there is only Medrol so at first I had no choice. The version I am on here now is a form of prednisone (prednisone turns into prednisolone in the body) but in a special delayed release formulation as that is the only option. It isn't available on the NHS in the UK as it is not approved for PMR, just RA. If you pay for it yourself you can have it if you find a doctor who will give private prescriptions - but you are looking at up to about £75 per month depending on your dose (it comes in 1, 2 and 5mg versions, each costs the same and you have to combine them to get your dose so for example either 15mg or 8mg costs £75, 10mg £50, 5mg £25).
I don't know if prednisone is available in the UK, as I say, the version I have isn't easy to get. But far and away the best way is to be VERY strict about what you eat. It IS possible to lose weight on pred but it is more difficult and it really does help to reduce carbs a LOT. I know it is unfair - but pred makes your body need fewer calories than usual and any extra ones are laid down as fat in specific places. As my dear daughter says: "Life's a bitch. And then you die..." She is such a cheery bunny
linda17563 EileenH
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EileenH linda17563
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Try calling your rheumy's secretary (if he's posh enough to have one but there must be one in the hospital rheumatology department somewhere) and ask if you can have an early appointment and explain why. Or get assertive with the GP and tell them you want to be referred as an emergency for proper investigations of what is causing this. It is the blurred vision that worries me most alongside the other things.
linda17563 EileenH
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EileenH linda17563
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linda17563 EileenH
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EileenH linda17563
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linda17563 EileenH
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linda17563 EileenH
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linda17563 EileenH
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EileenH linda17563
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Result! It is ALWAYS worth trying if you are already a patient of a consultant. They can only say no.
constance.de EileenH
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EileenH constance.de
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One of the sayings in our family has always been "He that expecteth nothing shall not be disappointed" - but we really are not a particularly pessimistic lot. We face most things with a hefty dose of realism and given our occupations it is probably a good attitude to have
constance.de EileenH
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linda17563 EileenH
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