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Clare.T
10-27-2004, 06:59 PM
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.
________________________________

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<<<

_________________


http://dermnetnz.org/treatments/systemic-steroids.html



Steroid withdrawal Dr M Lockshin


http://lupusmidatlantic.linktier.com/subindex.jsp?nav_id=74

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http://www.hss.edu/Conditions/Lupus/Sle-Overview

>>>4. Corticosteroids. Corticosteroids are synthetic versions of a hormone produced by your adrenal glands. They help suppress inflammation. High dose oral corticosteroid (60 mg/day of prednisone or equivalent) for four to six weeks, followed by taper (gradual reduction of dosage) over several months, is the gold-standard treatment for patients with systemic flare, glomerulonephritis, severe thrombocytopenia, vasculitis, and neurologic disease of any type except antiphospholipid antibody-associated stroke. Lower doses of corticosteroid are used for symptomatic treatment of patients not responding to NSAIDs and/or antimalarials. Bolus intravenous steroid is methylprednisolone (Solu-Medrol), 1000 mg, given over 30 minutes daily for three consecutive days has been used to treat acute SLE since the 1970s. However, there is little research to support this practice - except for inducing remission in patients with glomerulonephritis. Most specialists use bolus steroid for control of other lupus manifestations; some use it monthly in lieu of daily oral steroid. There are no systematic studies proving that one regimen is better than the other. (Long-term use of corticosteroids increases the risk of developing osteoporosis.)

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http://www.lupuscanada.org/en/chapter/trea...edications.html (http://www.lupuscanada.org/en/chapter/treating_with_medications.html)

>>In my view, the single most important factor explaining the remarkable improvement in life expectancy of SLE patients has been the discovery of the steroid drug cortisone in 1948 and, shortly after, the related drug prednisone. Although the term cortisone continues to be used by patients and the public, SLE patients are now treated with the much more effective drug prednisone. This drug is the best inflammation-fighting drug available at the moment. Prednilosone is also used in Canada and, for some SLE patients, is the best drug available. These drugs are sometimes referred to as steroids, but they are not related to testosterone and the other anabolic steroids used by some athletes to build muscle.

The decision to prescribe prednisone is never made lightly by your physician. Prednisone is considered if the symptoms are not being well controlled by other treatment(s), if there is a concern that SLE may quickly get out of control unless prednisone is used or if SLE is severe and perhaps life-threatening.

On the bright side, prednisone is necessary for the successful treatment of many lupus patients. For some, it is a lifesaving drug and the single best drug available. However, this powerful drug has a dark side too. There is no doubt that prednisone can cause a wide variety of side-effects in both the short and the long term. If you are taking prednisone, it is important for you to know what these problems are. This information is included in Appendix Two at the back of the booklet, "Side-effects of prednisone". Patients will be happy to know that research is underway to find steroid drugs which would have the powerful inflammation-fighting action of prednisone with fewer unwanted side-effects.

At times, patients may be tempted to stop taking prednisone or to reduce or increase their dose. Perhaps they are fed up with the side-effects or perhaps they are feeling better or worse. It is important that patients taking cortisone understand how cortisone works and why stopping or changing the medication without the supervision of the physician is dangerous.

Cortisone is a chemical that is normally produced by the body, not a foreign substance. In fact, the body has a vital need for cortisone. When prednisone treatment is started, the body responds by stopping its own production of cortisone and the adrenal glands that produce it get sluggish and lazy. If prednisone is used for a period of time and then suddenly stopped, the body may not be able to start producing enough cortisone for some time. The result could be a life-threatening lack of cortisone (adrenal insufficiency). So prednisone should never be stopped suddenly. If you are tempted to stop taking your prednisone, do not do it. Rather, discuss the situation with your physician.

>>>Other patients decrease or increase their dose on their own. This is unacceptable. If you feel well enough that you think prednisone could be decreased or if you feel worse and think that it should be increased, call your doctor. Never forget that both you and your doctor have worked very hard to improve your health. You should not put your improvement at risk by making any changes to your therapy.<<<<




http://www.lupuscanada.org/en/chapter/side...prednisone.html (http://www.lupuscanada.org/en/chapter/side_effects_of_prednisone.html)

__________________________________________________ ____________

http://www.lupus.org/education/brochures/steroids.html

__________________________________________________ __

Clare.T

flowergarden
10-29-2004, 05:01 AM
Ditto. Thank you!

alobreto
10-29-2004, 04:23 PM
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:

sheila t
10-29-2004, 06:00 PM
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:

Hong
12-01-2004, 10:57 PM
:) 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.

iandelta
12-02-2004, 12:44 AM
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

sandan
12-02-2004, 10:57 PM
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

shushan
12-03-2004, 12:29 AM
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:

melaniedawn
04-21-2005, 07:05 PM
Thank you Clare for all the great sites....I got all the answers I needed.

little mel :wacko:

lilsunflower
05-24-2005, 12:12 AM
[FONT=Arial][SIZE=1][COLOR=purple]

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.

raggedyann1
05-24-2005, 01:20 AM
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

JulieT
05-24-2005, 07:32 PM
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

3forme
05-27-2005, 03:48 PM
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:

rwb200
06-27-2005, 06:51 AM
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.

ShellyZ
07-06-2005, 02:53 AM
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

vickipooh
09-17-2005, 04:01 PM
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

laura8910
12-16-2005, 07:12 PM
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.

style_emoticons/<#EMO_DIR#>/Thanx.gif

dajha
01-23-2006, 05:14 AM
<span style="font-size:14pt;line-height:100%"><span style="font-size:11pt;line-height:100%">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.</span></span>

lilikeke
05-15-2006, 07:49 PM
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.

lilikeke
05-21-2006, 07:17 PM
Shelly,
Your situation is similar to mine. I have only been on prednisone for a year and I jusy had my left hip replaced. My left shoulder is starting to bother me now and right hip is a little bit. I just hope I dont have to have another replacement. I am sorry u had to have 2 hip replacements so I know exactly how u feel, but the good thing is no more pain. Were u on a walker for 6 weeks also? I have 2 more weeks to go and I'm off the walker. Was your replacement cemented in? mines not. Did u have to go through therapy? If so how much? Oh I'm 26 years old.
Alicia

Lily
07-30-2006, 12:35 AM
Some more recent news on why this might be happening with steroid usage:

http://www.eurekalert.org/pub_releases/2006-07/wuso-msb072606.php

love
Lily

frilly6
08-02-2006, 01:34 PM
I have had massive doses of Prednisone and Methylpred over the last 15yrs. The other drugs I had adverse reactions too.
Now I have severe Osteoporosis.3 pelvis cracks, 11 ribs fracture. L3, sacroiliac all compress fracture. I now had spinal fusions, rods, screws and baskets in my spine to hold me up and together. No trauma..
I was upset as EVERY year I had all my bone tests and they ALL showed my bones are OK.
Even last week I had a Total body, bone scan, all it showed is that my right hip is a little less dense as I can do little,almost no walking
I asked the Techician was there ever any sign that my bones would compress fracture and she said "No".
Why have all those tests? I have the density apparently but no strength, my bones are like Swiss cheese. I almost died having the 1st back surgery, on life support for 3 weeks and 4 months in hospital learning to move more than just my head and hands.
Everyone feels guilty about it but i just do not know why I has to have all those tests for nothing?
I had no choice Pred was my only option. I took Calcium, did loads of weight bearing exercise. Loads of dairy products etc etc,
hugs

frilly:rolleyes:

ALWIN
02-23-2007, 10:43 AM
Thank you
Truly useful information.
I'm feeling more empowered by each posting.
It's a lot easier to comply when you know why!

ALWIN

discolisious
06-22-2007, 04:42 PM
This is really sad for me. For the first time in so long I was feeling amazing. My Doc put me on Prednisone to help kick in antibiotics, 20 mg a day, my word...it was amazing. My Rheumy tapered me off, 2 weeks I lost 10 pounds and felt invincible. Well, infection still present so back on the prednisone. Felt great, energy, etc., then the taper again...now I am back to my normal painful self (although much lighter). I just called my Rheumy and wanted to talk about a rx for prednisone (she had suggested it some time ago), then I found this site and the wealth of information (thank you all!) and I am not so sure. Did everyone gain weight? I shed it like it was going out of style, although I was not on it long. And the side effects, for feeling good now I am unsure if it is worth it later. AAAAGGGHHHHHHH!!!!!!!!! I just want some releif and to participate in activities with the famdamly. I already take plaquenil, topamax, diclofenac,...

Oh yes, I am so glad I found this site, you all seem so friendly! ~ Les

xinxiang37
11-02-2008, 05:43 PM
As with any medication, people respond to them differently. I have had SLE for 29yrs and there hasnt been a time in those 29years that I havent taken prednisone. I also take 1500mgs of Calcium each day and folic acid. I have had minimal to no side affects thus far. I have bone scans every two years and so far (thank the lord) no problems. I have had no fractures or breaks either. I have fell many times due to drop feet I developed right before my diagnosis. I continue to fall if I dont have my cane available. I consider myself lucky. I managed to keep my weight down and wore a size 6 jeans up until a few years ago. I have experienced no stomach difficulties either. I consider myself very lucky because I have responded to this therapy very well. I wish I could take plaquenil, (much less side effects) however I am allergic to it. In the course of my disease I have had 5 flare ups, the first the only major. My Dr. jumped on aggressive treatment and I always went into remission very quickly. Just like the differences we experience with our individual symptoms, our reaction to the medications we use to treat the symptoms I think are different too.