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This post is prompted by a report on the BBC about excessive over prescribing of Prednisone by GP's in the UK

http://www.whale.to/drugs/corticosteroids1.html

The best doctors explain to their patients why they are prescribing a medicine , how it might help them, what undesirable side effects to look out for, when and how best take the medicine and arrange tests to check for hidden side effects. . Doses will be adjusted according to the patient's individual needs and response.


Unfortunately we often see lupus sufferers here on the forum who have been treated with Prednisone or similar oral steroids for many years as sole therapy and are now suffering serious irreversible side effects.

We need to be informed about our medicines to make sure that our treatment is in line with the most up to date practices and that we are getting the best treatment available, although of course it is up to our doctors to decide in partnership with us on treatment options and choices.

Many of us have no choice but to be treated by doctors who are not lupus specialists, have little or no experience of treating lupus patients and who are not up to date with the latest therapies.

Dr Wallace writes

Steroids are the most effective and most misunderstood treatment for lupus. They are also the most used and abused therapeutic interventions for the disease.
Simply stated, if organ threatening disease is present and steroids are not prescribed, the patient usually loses function in that organ.

(The Lupus Book p212)

He also describes steroids as a blessing and a curse. " Without them many lupus patients would die, but with them, serious complications can arise.........
Not everybody develops all of these complications and many individuals who are steroid dependant develop none of them "

(pps 216-217)

These days every effort is made to keep steroid use to the lowest dose for the shortest time needed. Monotherapy - the use of a single drug - is unusual these days : most often a cocktail of drugs is prescribed to maximise the benefits of each and minimise the side effects.

The anti malarials, NSAID's and the steroid sparing drugs Imuran and Methotrexate help to reduce the need for steroids in disease control.
Some cases never need steroids. Some will need low maintenance doses for long periods

Measures can be taken to minimise the side effects of steroids : Dr Wallace often prescribes antacids,H2 blockers, eg Zantac or proton pump inhibitors eg Prilosec along with steroids.
A low sodium low fat and low carbohydrate diet with limited calorie intake is advisable.
Sometimes diuretics are used to minimise bloating and fluid retention.
Sedatives may be useful at night and patients are urged to be active to minimise muscle atrophy and osteoporosis


Dr Wallace says that steroid dependent patients should take at least 1 gram of calcium a day to protect their bones. Bone loss is a serious concern of long term steroid use for men as well as women regardless of age . There are a number of osteoporosis and bone building medicines available these days. Bone density should be checked as often as required.

Here is a small selection of useful links and information to help you evaluate the treatment you are getting

Please note: this is not medical advice, just freely available information. Always consult your physician. Physicians differ in their prescribing and treatment practices.
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Side effects

http://www.rxlist.com/cgi/generic/pred_ad.htm

>>>Musculoskeletal: Muscle weakness, steriod myopathy, loss of muscle mass, osteoporosis, tendon rupture, particularly of the Achilles tendon, vertebral compression fractures, aseptic necrosis of femoral and humeral heads, and pathologic fracture of long bones
 

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Hi, Clare! ;)
Thanks for all the great info.

I was on proton pump inhibitors with my prednisone. I have had extremely high blood fats for years even though not taking pred. When the protonix was added, my cholesterol went up by 150 points. About that time, a study came out indicating that in some people proton pump inhibitors stimulate the liver to produce more cholesterol. My doctor took me off it and it dropped back down to the previous level at a 6month blood check.

Regards,
Angela :flowers:
 

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Thanks Clare fro the information, as you know 15 years of steriods full time. I now have severe osteoprosis, ( 4 Fragile Factures this year) skin is so thin like paper and muscle myopathy and wasting...But I know without this drug I would even be worse than I am now...Just wish Doctors would warn you off ALL the side affects and monitor the effects better...
Sheila :love:
 

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:) I was diagnosed with SLE because I had anti-doubleDNA, anti-SSA and anti-SSB positive. I am also sensitive to sun. I lose hairs when I wash it. I don't have anyother symptom. My auntie was a SLE patient. Does anyone think if I should start to take any medication? I was told that it could prevent further symptom by starting to take medication earlier. Is it true? My situation is, my antibody is mild positive when I am not sun burned. And usually my stomoch got upset easily by all kinds of medication.

Thank you all in advance.
 

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Great read i am 46 been on pred for 6 years and already have osteoprosis :wacko: i was on them for 5 years before i had a bone scan thanks again Ian
 

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Thank you very much for that info clare I have been diagnosed with mctd for 10yrs now which sprang up after the birth of my son, I have been taking pred 10mg, plaquenil 200mg and zoton 30mg for 4yrs and have been totally puzzled by the symptoms of the disease and the side effects of pred, my dr has given me calcichew but I forget to take them but i will stick to them regularly now :D
 

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I've learned that use of oral steroids has been linked to bipolar disorder (manic-depressive) . My psychiatrist told me that it's the use of steroids during flares i.e. using prednisone and then tapering, that causes a change in mood disorders. Jane Pauley has linked her bipolar disorder to use of steroids to treat a medical condition. Just some more FYI :wacko:
 

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Besides plaquinal, the only other drug the has worked is metylpredisone. My doctor didn't tell me about any side effects to look for besides taking more vitamins.

have you ever heard of someone blacking out as a side effect, I had a problem with that recently and I'm not sure where to look for the cause.
 

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lilsun,

I think it is very important that you call and discuss your blackout with your doctor ASAP. It is the kind of symptom that shouldn't wait until your next appointment.
Have you been tested for APS/Hughes syndrome aka sticky blood. It is the lupus anti-coagulant and not all doctors remember to test for this when they are running the rest of the lupus bloods.

Are you on any blood pressure meds? Pain meds? Did this happen on an evening where you may have had a social drink or 2? Have you checked with your pharmacist to see if any of your meds interact with each other?
Those are some of the questions that might help your doctor figure out why you blacked out.

Let us know how you get on.

Take care,
Karen
 

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Hi,

Thanks for the information Clare. I was on pred for years, & eventually decided no more, I took myself off very gradually, I am glad though, I still have a bit of a fat face, & god knows re my bones as only ever had one test. Still, pain can be controlled in other ways, & I live with the consequences........

xx
 

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I am seriously concerned with my background in hospital pharmacy, that any remotely responsible chemist/pharmacist would even dispense this dose, especially ORAL and OUTPATIENT. I am truly shocked she didn't just stroke out and die-and very glad she has lived to perhaps spare someone else.

3forme :hissy: :tantrum:
 

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Good information.
Thank you
My wife has been on Pred for 18 years since she was diagnosed with Lupus.
As with many others no one told us what all of the side effects were.
She has had decalcifacation of the teeth and lost many of them due to it and has Osteo because of it.
A few years ago when we changed Doctors once again he could not believe that she had been on Pred for so many years and no one had told us what all it could do and no one had tested her for Osteo.
He started Fosamax imediately and ordered the tests. She is now tested at least once a year to see what is going on.
Since the Fosamax she has improved some on the tests.

She is not able to take many of the other drugs that they use to spare steriod use because of adverse reactions that she has had to them.
Plaq caused extreme hives the second time she took it, Imuran put her in the hospital after only one week with Toxic Symptoms and the body had stopped producing blood so they had to start transfusions right away.
Meth caused hives and pain in abdomal area.
 

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I have been on steroids for 17 yrs. (since age 24, now 41) I have had both my hips replaced (at age 37) & this yr. I had my R ankle fused. The steroids are causing avascular necrosis. My latest bone density showed a decrease of 4% in my lumbar spine. I take 1200mg of calcium & fosamax. Now they are recommending I inject FORTEO. I'm waiting to hear, they said they have to apply for it.(maybe since I'm on SSI ?) I do weight bearing exercise & drink milk. I'm getting scared about my spine. Is anyone experiencing these things? :erm:

Shelly
 

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Hi Shelly, I too have been on steroids for18 years, 15mg. and cant seem to get below that, when I try, I end up in a big flare. It has caused me problems, kidney, pancreas and of coarse the moon face and weight gain.. :p But I can imagine how i would feel if i stoped. B) I take norco for pain. I hurt all the time..
Hope you feel better. :flowers: ..vicki
 

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I have just returned from hospital after an outpatients visit having had pain in shoulder for 4 months now. I have had massive steroid injections into site and physiotherapy just to make things worse. I am suffering from a condition that has never been mentioned to me before "avascular necrosis" . Apparently a direct link from 20 years of steriod use. Why have I never been told about this condition, I have heard of osteoperosis etc but not this. The treatment so far is to go away with more pain killers and wait and see. I am at my wits end, how many more tablets are going to be thrust at me. Anyone got any information about treatment or help to arrest the symptoms would be grateful.

 

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[SIZE=14pt]I am using prednisone. I have been having skin growths lately. At first it was only on my legs. Two of them grew large. One has gone away and one is fading. But today I found one on my tongue. It is huge. I don't know what it is. Can anyone help me? Does anyone know what it might be? I have lupus. My doctor saw the skin growths on my leg. He did not tell me what they were.[/SIZE]
 

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Well I know too well the side effects of prednisone. I've only been taking it for a year and at low doses, the highest has been 20 mg a day. I just had a hip replacement because of the necrosis the drug caused. I am also taking Imuran and Plaquenil. I want to get off of prednisone but don't know how my body will react when I do stop taking it. I hope there's an alternative for it because I really don't wanna have to go through another surgery.
 
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