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beautifulbeluga
12-08-2006, 12:25 PM
Hello to everyone: I was just wondering how many of you out there have been on low doses of prednisone for an extended period of time. I am only on plaquenil 200 mg. x 2 per day which helps my symptoms but not all. I have been given short doses 15mg decreasing dose (3 weeks) a couple of times for flares and I feel so much better. But every time I finish the dose I go back to feeling terrible with complete return of symptoms, swelling, fatigue, muscle and joint pain all over my body, etc.

My rheumatologist is against putting me on prednisone for more than a few weeks even though I feel so much better on it. Even 5 mg. dose makes my life much more bearable. I am presently recovering from a total knee replacement surgery now 8 weeks post op and my short term prednisone prescription has run out and I am suffering big time.

I was wondering if others have run into this problem, just not being able to live without prednisone over a longer term. Secondly, what are other's experience with their rheumatologist around this issue.

I left a message today at my rheumatologists office regarding this issue but my fear is she will refuse to give me any more prednisone.

Henry
12-08-2006, 01:48 PM
I have taken 8mg of Medrol (Methylprednisolone) every other day for almost
two years, occasionally tapering from 24mg back down to 8mg when in a flare.
I have cut to 4mg every other day for two months and I'm now trying
to cut that in half.
My pulmonologist and rheumatologist said I could conceivingly take 8mg,
every other day, indefinitely. I can't figure out why your doctor wouldn't give
you the meds you need. I know the stuff is toxic in the long run,
but my rheumatologist said it is better than letting the disease run amok.

I have no idea what is the difference between prednisone and methylprednisolone.

Saysusie
12-08-2006, 03:23 PM
Your doctor probably has a preconcieved prejudice regarding the side effects of long-term use of prednisone. Prolonged use can sometimes cause osteoporosis and glaucoma. The frequent side-effects are: Mood swings, depression, or euphoria; insomnia (can be lessened by taking the prednisone in the a.m.); Indigestion (can be lessened by taking prednisone with food); Increased appetite and weight gain; susceptibility to infections.(Prednisone slightly decreases resistance to infection); Fluid retention; (A Salt-restricted/potassium-rich diet may help reduce fluid retention.); Hyperglycemia or diabetes (prednisone elevates blood sugar); Flushing or hot flashes (usually because of an elevated blood sugar); Easy bruising of skin.
However, there are many more benefits to the use of Prednisone for Lupus symptoms than there are detriments. Prednisone acts as an immunosuppressant. In Lupus (and other autoimmune diseases), the immune system produces antibodies, which become overactive and cause undesirable effects. Prednisone suppresses the production of these antibodies. This suppression can make it slightly harder for you to fight off infection but, more importantly, Prednisone stabilizes the immune system if it is overactive, as is the case with Lupus.
Most doctors will put you on a low dose of prednisone and will keep you on the drug as long as it is working (in fact, most Lupus sufferers are trying to figure out how to taper down their prednisone). I would say that your doctor needs to be educated about the fact that Prednisone is one of the drugs of choice for the treatment of Lupus. It is not used to allay short term symptoms (which most doctors use it for) when used for Lupus, it is a long term treatment that, after symptoms have subsided, must be tapered off of slowly!!
Perhaps you can take some research about Lupus and Prednisone to him to tell him that you do not want to be taken off of the drug; he can prescribe the lowest dose that works for you, but you want to remain on the drug and that YOU are making and INFORMED decision about YOUR HEALTH and YOUR TREATMENT!!!
Best of Luck To You
Saysusie

MARYCAIN
12-08-2006, 03:44 PM
This is one of those questions that rheumatologists get into knock-down drag-out fights about at rheumatology conferences. Ask five rheumies - you will get five different answers.

As far as the difference between methylprednisolone and prednisone - I know Saysusie and quarterhorsegal will have better information about the exact differences. From the standpoint of your question, it probably doesn't matter that much - both drugs are corticosteroids with essentially the same benefits, risks, and side effects.
Methylprednisolone is available as an oral, IM, or IV preparation under various brand names which might be different in Canada. Prednisone is more often given orally as tablets or liquid. In terms of equivalence 8 mgs. Medrol is like 10 mgs. prednisone. But the side effects are basically the same. Alternate-day therapy (one day on/one day off) decreases the risk of adrenal suppression. But much of the research on long term therapy with steroids indicates that the side effects are cumulative, so even if you are skipping a day, the effects add up. So most rheumatologists prefer to use steroid-sparing therapies whenever possible. And if you do not have organ involvement, many rheumatologists feel the benefits do not outweigh the risks. And for many people, the effectiveness or steroids diminish after you have been on them continuously for a period of time. So doctors often use them for short periods to get a flare under control, or as "bridge" therapy until longer acting mediications kick in.

The problem with steroids is that individual sensitivity may vary a lot - some people can take them for years with little problem, other people develop devastating side effects at fairly low doses. But the known risks of long term therapy, even low dose, are such that they are not a good idea if your disease can be controlled by other medications and therapies. So even if you think your rheumatologist is being unsympathetic and unreasonable, realize that from her viewpoint, the medicines may do more harm than good. So the two of you probably need to have a frank discussion about long-term therapy, the benefits and the risks, and then decide where to go from there.

Most of the studies on long-term steroid use have involved patients with RA, or children with asthma who used long-term inhaled steroids (which presumably have fewer systemic effects). One study found that at a dose range of 10 mg. per day, the resulting bone loss was up to 15% in the first year, and up to 3% per year in subsequent years. Another study found that 34 percent of women on a mean dose of prednisone of 8.6 mg per day will suffer a bone fracture within five years. Women with other risk factors for osteoporosis may be at even higher risk.

Long term use of low-dose steroids (under 10 mgs)significantly increases your risk of premature athlerosclerosis and coronary artery disease. The higher the dose, the greater the risk. Since women with lupus statistically have a 5-7 times greater risk of developing heart disease anyway, this is something you need to consider also. And even low dose therapy (7.5 mgs or less) significantly increases the risk of developing cataracts, glaucoma, or both.

With prolonged steroid use, the skin begins to thin (cutaneous atrophy), blood vessels are more easily damaged, and easy bruisability develops. The skin also becomes more fragile and susceptible to pressure sores or infection. Muscle weakness and myopathy can develop in some people even at low doses. Long term therapy also increases the risk of avascular necrosis, There is also a long laundry list of other potential side effects including metabolic and endocrine problems, hypertension, impaired glucose tolerance, and so on. No one can tell you whether you will develop these problems; conversely, no one can guarantee you won't. And once the damage is done, just withdrawing the steroids may not be enough to fix it, and the longer you take steroids, the harder it is to stop taking them. I wish I could be more encouraging, but honestly, I do not blame your doctor for not wanting to prescribe the steroids. In the end, you are the only one who can decide whether the benefits of long-term steroid therapy outweigh the risks. But speaking as someone who has taken them on and off for six years, I can tell you the risks are real and significant. So please, talk to your doctor about what other options are available, and make sure you are making an informed choice about what to do.

beautifulbeluga
12-08-2006, 06:02 PM
Hi again everyone: Reading the responses to my post I still feel conflicted. I realize that there are risks to taking this medication and others, but I'm not sure exactly what options I have. Marycain you stated many of the reasons why prednisone is not a good choice but what else is available? Are some of the other drugs less toxic? I do not have kidney or liver involvement but I do get pericarditis from time to time and my bowel is very affected by my disease. The only option that has been suggested by my rheumatologist on my last visit is increasing my dose of plaquenil although I am already taking the maximum dose. Plaquenil does help some but mostly with my fatigue and skin issues, it has never helped much with my joint, muscle pain and does nothing for pericarditis.

I am more confused than ever, and still in pain. My rheumatologist's assistant did call back and say he would get back to me the first of the week and possibly an appointment could be arranged. The only thing I am sure of is after feeling better on prednisone I don't like how I presently feel without them. I am almost completely incapacitated. Is this any way to live?

MARYCAIN
12-08-2006, 08:44 PM
Have you been evaluated by a gastroenterologist to be sure your bowel problems are lupus related and not due to inflammatory bowel disease? Because if they are not related to lupus, then other treatment options might be more effective. Has your rheumatologist ever mentioned budesonide? It is also a steroid, but is often prescribed for inflammatory bowel disease, and some rheumatologists in Canada and Europe are also using it for lupus, because it appears to have less long-term toxicity to the bones and GI system. A GI doctor might be more familiar with this than a rheumie,

At one time, many rheumatologists and primary care doctors routinely prescribed low dose steroids as maintenance therapy for people with rheumatic diseases like RA and arthritis. It was generally assumed that the serious side effects were a result of moderate to high dose therapy. But in the last few years, as doctors see more patients who have been on steroids for extended times, and as they learn more about the risk of cardiovascular disease and osteoporosis in lupus patients, many of the major treatment centers like Johns Hopkins are re-thinking their approach to steroids. For example, doctors once thought steroid-related osteoporosis came from years of taking steroids - once bone density testing became widely available, they learned that most of the bone loss actually occurs in the first six months of taking steroids. And a study at Johns Hopkins found that long-term steroid use was associated with significant permanent organ damage. There is a "working committee" of the American College of Rheumatology trying to come up with new practice guidelines for the use of steroids in lupus, but they probably won't be finalized until sometime next year. But the trend in lupus treatment is moving away from the use of steroids and toward "steroid-sparing therapies" - which might include plaquenil, imuran, methotrexate, or tiruxan - depending on what's appropriate for each patient. People with joint and skin involvement often do better with methotrexate. And combining MTX and plaquenil can make both more effective.

As for pericarditis, many cardiologists and rheumatologists in the United States prescribe colchicine for recurring pericarditis, unless there are reasons why it might not be appropriate for you. I take it and so do several other people on the forum. I think there are several posts about this under the topic pericarditis in the symptoms forum. So this might be an option to discuss with your rheumie if the pericarditis is a major problem. And even with plaquenil and steroids, many lupus patients still need medication for pain. Low-dose antidepressants and muscle relaxers are often very effective in treating muscle pain. So there are a lot of options, some of which might make you feel better than the prednisone. But you may have to push your doctor to discuss them with you. In the end, you are the one who has to decide what's best for you. If you do continue taking steroids, talking to your doctor about ways to reduce your risk of osteoporosis and heart disease will help reduce the risk of long-term side effects. And some doctors recommend a statin drug for people on steroids to manage their cholesterol. So these are all things to ask about. Hope this helps.

Quarterhorsegal
12-08-2006, 09:12 PM
prednisone and methylprednisolone are basically just two different corticosteroids. Methylprednisolone is more potent, which just means it is given at lower doses, not that it is more effective. I won't bother to bore you with the structural differences. The many nasty effects of prolonged steroid use have already been listed, so I will not go into that either. As far as alternatives, it depends on the source of your pain. If it is due to inflammation, an NSAID (there are several) might help. Narcotic pain medications are obviously an option, and when used appropriately have a lot less long term adverse effects than steroids. And don't forget the non drug altenatives like massage, acupuncture, meditation, biofeedback, ect.
And, of course, there are the medications to treat the diseases that are causeing your pain like plaqunil or methotrexate for lupus and/or rheumatoid arthritis. I hope you are able to get some relief from your pain soon.

Henry
12-09-2006, 05:30 PM
My rheumatologist's assistant did call back and say he would get back to me the first of the week and possibly an appointment could be arranged.

Good luck at the doctor beautifulbeluga.

Thanks for the info on the Medrol, Qrthrsgal and MaryCain.
You're right about side effects. I have to take Actonel now
because it's thinning my bones.

Missy
12-11-2006, 10:15 AM
My Rheumy wanted me to be on 5 mg of Prednisone indefinitely.

I, of course, wanted to try to get off of it all together if possible. He is very respectful of my wishes and told me that a lot of people with Lupus would be very happy to only be on 5 mg of Prednisone, but that everyone deserved a chance to try to get off it.

I was succesfully able to get off of it on a regular basis, but take it during flares and stressful times at my own discretion.

pooie95
12-11-2006, 11:48 AM
I too self medicate with prednisone, taking the lowest possible dose during times when I start to flare. I was told by my Rheummy that I could do this as long as I taper down to 5mg. I usually only start out taking 10 mg for a few days and then taper it down. I try and get off the stuff ASAP because I don't like the side affects such as weight gain and moodiness. This has worked for me so far because I start taking the stuff as soon as I notice symptoms. I don't have to wait for an appointment or a call back.

Bama
12-11-2006, 06:20 PM
I felt my best when taking 100 mg of imuran and 5 mg of prednisone. I was supposed to try imuran only, but my husband and I wanted to try and have a family so I've gone back to 10 mg of prednisone only. All these drugs have dangerous side effects. I too was really scared about taking prednisone long term and chemo type drugs, but I got to the point that I couldn't enjoy my life. When you get to that point then the drugs are worth it because you get your life back. If my life happens to be shorter because of the drugs - I'll gladly take a shorter but full life over a long drawn out miserably painful life. It probably wasn't until I took the plung and tried imuran and felt so much better that I felt at ease taking the drugs. The hard part is deciding if you are at that point because really only you can decide that. Your doctor doesn't know how bad you feel and you may not even realize how bad you feel. I felt so bad for so long, I didn't realize how much pain I was in until I started taking imuran and felt better.

val
12-12-2006, 02:59 PM
Thought i would add my bit. I am on low dose prednisolone and have been for 5 years. Without it---I cannot get out of a chair and my hubby has to push me up the stairs... Choice.. No I don't think I have one. Plaquenil gave me vaso vagal attacks. Methotrexate was also a no no. I have weight gain, mood swings, insomnia, I have high cholesterol, high blood pressure and post hysterectomy I have no oestrogen so high risk of osteo porosis......................
but I live in the present. I am 53 years old and want a life now . I increase it when I need to and get back to 5mg as quickas I can. If it increases quality of life now then thats all that matters.
As I am an ex nurse I have osteo Arthritis in both knees and shoulders--a legacy of no moving and handling in the early days, my mobility is a problem but I will keep independant for as long as I can.
So Prednisolone--I think its a wonderful drug with or without the side effects
Val

mnjodette
12-12-2006, 08:49 PM
I've been in nearly constant flare since May of this year. I've been on prednisone the entire time; sometimes as high as 40 mg and once I got down to 5 mg. Now I'm at 15 mg and can't seem to get below that without negative results. How long is too long on this medication? I've read that the body normally produces a certain amount of this chemical, and that the longer you're on prednisone therapy, the more difficult it will be for your body to begin producing the needed chemical again. Is this true?

val
12-13-2006, 02:01 AM
Yes we do produce it naturally and that is why we should taper it when coming off if we have had more than a short treatment. The body will take over as long as reducing is gradual
Val