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Peggy Ahrens
02-26-2004, 03:15 PM
Hi I was diagnosed with Lupus 4 years ago, was on plaquenil for a while then went off it, gave up aspartame and felt good except for fatigue. I have had a bit of stress lately and got a lung thing that has stayed around for about 6 weeks. When I went to the Dr. and told him this and that I have tingling in my toes and fingers he gave me a prescriptions for plaquenil and prednisone. I am a little freaked out over this, I am taking the plaquenil, but am hesitant over the prednisone, shouldn't I wait for the blood test to come back? I have another appointment in a week. Would it be harmful to wait for the tests? Any input would be appreciated.

Saysusie
03-06-2004, 09:03 AM
Hi Peggy;
Prednisone is one of the most successful treatments for LUPUS. It is an corticosteroid immunosuppressant drug and decreases the immune response in Lupus by inhibiting the production of antibodies. Once you begin taking prednisone, your body adjusts to the drug in order to function properly and it is very, very important that you take it exactly as your doctor prescribed. You must NEVER stop taking the drug unless under the direction and supervision of your doctor.
There are side-effects to Prednison - mood swings, increased appetite, weight gain, muscle weakness, joint pain, fragile skin, easy bruising, softening of bones, round face, growth of fine hair on face and body. Your doctor has started you on a low dose and will probably keep you there unless you suffer a flare.
Many Rheumatologists recommend early treatment with corticosteroids in order to quickly respond to the inflammatory actions of Lupus and to quickly begin the process of inhibiting antibodies.
Personally, I believe that, the quicker you start treatment with this henious disease, the more likely you are to not go into the severe stages of the disease and to manage the disease and your life.
It is up to you and your doctor ....talk to him about your concerns and make a mutual agreement between the two of you
:lol:
Best of Luck
Saysusie

emilyvp
05-16-2005, 09:47 AM
I was treated with prednisone about five years ago at the onset of my disease to treat ITP. I was on a high dose for about 6 months and within the first two months I had major mood swings, huge appetite, water retention, etc. I promised myself that I would NEVER go back on it again. I had taken plaquenil for several years and stopped taking it in planning to start a family. Now I am having severe joint pain and plan to start taking plaquenil again, but need something in the mean time for pain. My doctor suggested a low dose of prednisone. Will I see the same side effects or will it be more mild with a low vs high dose? I really just need something to work fast so I can enjoy my vacation to Hawaii scheduled in a few weeks. Any suggestions would be appreciated.

emilyvp
05-16-2005, 09:49 AM
I was treated with prednisone about five years ago at the onset of my disease to treat ITP. I was on a high dose for about 6 months and within the first two months I had major mood swings, huge appetite, water retention, etc. I promised myself that I would NEVER go back on it again. I had taken plaquenil for several years and stopped taking it in planning to start a family. Now I am having severe joint pain and plan to start taking plaquenil again, but need something in the mean time for pain. My doctor suggested a low dose of prednisone. Will I see the same side effects or will it be more mild with a low vs high dose? I really just need something to work fast so I can enjoy my vacation to Hawaii scheduled in a few weeks. Any suggestions would be appreciated.

rvelasco
05-17-2005, 02:20 PM
Hi Peggy, I've been on Prednisone since 12/2001 with Plaquenil 2/2002. They work wonders together. I do not get the "lupus" headaches as often as I use to, minimal joint pains & no chest pains. I have Lupus Panniculitis (the onset was a heart attack due to four abnormal thinning arteries) and these medications along with Methotrexate once a week lessens the redness and itchy sore ulcers located on my face. Prednisone has some bad side effects but as long as you know what you are working with, you can take control or handle it. Just think positive. You have God and you have a great support group. Ruvi

kkelly
06-15-2005, 12:25 PM
You might find that your body actually needs a bit of prednisone. I know its a nasty drug - I have taken between 10 - 35 mg the past two years. I find that I have a threshold amount that maintains me most of the time. If I am taking too much I will get side effects - too little - very tired and sore. I am on 15mg all in the morning right now and that is about right for me - maybe a little high. My mouth gets a sore coating when my prednisone is too high. Its weird but its taken me a while to sort out my reaction. I have tried to go off of Pred several times but I really flare at <10mg. My doctor thinks my body might need it and I am going to get him to do an adrenal gland test to see how sluggish it is naturally. I believe this thing does burn itself out eventually......or your body heals with the support it needs (supplements, rest, just some good luck)....
PS - I take 20mg 2 tab 2x a day when I start to flare for a few days and that usually helps me get back on track.

Amanda109
06-18-2005, 10:36 AM
Im taking 20 mg of predisone right now. I could tell in the 1st week, it was for me. It takes all my joint pains away.

hatlady
06-25-2005, 01:19 PM
There are side-effects to Prednison - mood swings, increased appetite, weight gain, muscle weakness, joint pain, fragile skin, easy bruising, softening of bones, round face, growth of fine hair on face and body. Your doctor has started you on a low dose and will probably keep you there unless you suffer a flare.

Saysusie, I read those side effects and think - which is worse? How I'm feeling or....THAT!

I already take fosomax for osteopenia, I bruise relatively easily, and get moody well enough on my own. Joint pain as a side effect? Isn't that what I'm trying to get away from?

So far I've avoided prednisone, but I think I'm going into a flare, and FEAR that the doc will prescribe. How is it that such a difficult drug actually helps? Even your post, which has many positives listed, doesn't really convince me.

Are there other alternatives?

Saysusie
06-28-2005, 07:42 AM
Hi Hatlady;
I often have to chuckle when I read the "side effects" of many of our treatment therapies. For instance, I also suffer from Fibromyalgia and one of the medications that I take for the pain states that the side effects can be "muscle pain". I had to laugh out loud at that one. The symptom that I am taking the medication for has a side effect of the symptom that I am trying to treat! What a maddening, vicious circle! Until I looked at the word "MAY". By definition, this means that it is not a definate side effect and, so far, it has not caused my muscles to ache. In fact, the drug has done just what I needed it to do...relieve the aching muscles!
In response to your question, Yes there are some alternatives to prednisone. However, as I stated earlier, the drug has proven to be very beneficial for many lupus patients. Unfortunately, there are no treatments that do not have side effects. Here are two of the most common alternatives for Prednisone:
Imuran.
One caution about Imuran which seems to escape people, but that drug manufacturer has a warning about seeing a dentist. All of the drugs have warnings about child birth.
The three primary choices of immunosuppressants are:
1] Prednisone
2] Imuran
Side Effects: Loss of appetite, nausea or vomiting, Skin rash, Cough, Hoarseness, fever or chills, lower back or side pain, painful or difficult urination, unusual tiredness, weakness, Black, tarry stools, blood in urine or stools, pinpoint red spots on skin, unusual bleeding or bruising, Fast heartbeat, fever (sudden), muscle or joint pain, nausea, vomiting, and diarrhea (severe), redness or blisters on skin, shortness of breath, sores in mouth, on lips, stomach pain, swelling of feet or lower legs,
3) Prograf
Prograf is relatively new and docctors haven't had any experience with the drug, therefore are hesistant to prescribe it. Without medical drug coverage, it is an expensive drug. The side effects of Prograf are almost universal to all three drugs. Prograf reacts badly to grapefruit, and grapefruit juice, so stay away from that one drink.
Prograf contains the active ingredient tacrolimus, which is a type of medicine called an immunosuppressant. Tacrolimus acts on the white blood cells. It works by blocking the action of a substance called calcineurin that is found in white blood cells called T-lymphocytes. This action prevents the T-lymphocytes from producing substances called lymphokines.
However, here are just some of the side effects fro Prograf:
# Individuals having long term or intense immunosuppressive treatment are at increased risk of developing lymphomas and other cancers, particularly skin cancer. Therefore, to reduce the risk of skin cancer, you should minimise your exposure to strong sunlight and UV light by wearing protective clothing and using a sunscreen with a high protection factor. Discuss this with your doctor.

# The muscle of the heart has occasionally been reported to be affected (cardiomyopathy) in patients (particularly children) given tacrolimus after transplantation. This can result in an enlarged heart, heart failure or abnormal heart rhythms. Patients using this medicine should be monitored carefully for any changes in the heart by echocardiography.
Prednisone is one of the corticosteroids used to treat inflammation, swelling, heat, redness and pain associated with Lupus arthritis. The drug is considered potent and effective at relieving symptoms but also has the potential for serious side effects. If Prednisone becomes a risk depends a lot of the dose that you are taking. If you are taking over 10 mg daily, the side effects are significant and probably outweigh the benefits unless there's no other choice to control the symptoms. Dses of prednisone lower than 10 mg a day cause less osteoporosis, which is clearly the most significant long term side effect. Lower doses also seem to cause less weight gain, and possibly fewer other complications. There's also at least one recent study that seems to suggest that even low dose prednisone may reduce erosions, and not just suppress symptoms.
So, as you can see, we cannot escape side effects. I wish that we could because sometimes I truly believe that we suffer more with the side effects than we do with the symptoms of the disease. But, that could just be me. However, I am a firm believer in following your doctor's advice, educating yourself about your illness, its symptoms, its medications and its treatments, taking your medications as prescribed, exercising regularly, making the important life changes, listening to your body, getting restorative rest, taking care of your emotional and physical well being!!
Having said all of that, I wish you the best of luck and hope that you are able to find a treatment that works for you. I truly understand your trepidation :roll:
Peace and Blessings
Saysusie

hatlady
06-29-2005, 04:22 PM
Thanks SaySusie!

So far I'm avoiding Prednisone and the others - which I was unaware of, thank you!

I still feel like I"m skirting a flare - but I'm just barely keepng it at bay. Rest is the best medicine. Or is that laughter and rest?

Hugs, and thanks

Missy
07-13-2005, 01:02 PM
With all the bad things that go along with Prednisone, I do like the blaket excuse it gives me for memory loss and/or mood swings.

"Oh - it must be the Prednisone!" Even my friends who are healthy use that excuse now! Hee! Hee!

Missy

hatlady
07-13-2005, 05:02 PM
:P Missy, you're a sweety! I blame my "DUH" moments on the lupus itself! Gee, if I go on Pred, I'll have one MORE excuse!

Call me Dori (from NEMO) "OH! Short term memory loss!"

I'll avoid pred as long as possible, but after reading all this, will take my doc's suggestions if I go into a flare....

Roni Shawn
08-16-2005, 03:35 AM
Hatlady, Dori is MY name too.

I am avoiding Pred. They did put me on it in 02, I did the 7 day treatment. I could NOT handle it. My mood swings were AWFUL. Never been that bitchy ever. So I avoid it like the plague. I think its funny, how we go to the Doc, for these symptoms, and they give us scripts for them, and they may cause the same symptoms we complain to them about. It kills me. Too funny. My memory loss is terrible these days. I do not know what is causing it. I havent come across anything yet, that says that Lupus causes it. Does it? I am so greatful for this website, and whomever created it. As I have not been able to ask these many questions to a doctor, and get any answers, really. They dont want to take the time with me, as I am so very complicated. I wish I wasnt like this dangit. But I have to be counting my blessings, and thank God for the sicknesses I do have. If I didnt have them, I wouldnt count on Him to get me thru. So I guess there is a reason for everything. Altho that is sometimes hard for me to understand; why God would give us sicknesses. I guess its satan. Heck. Im confusing myself, so Im going to shup now....LOL....But my memory loss is getting so bad and so out of control. I even looked up Alzheimers to see if I had it. and I do have some of the symptoms, but I am too young yet to have it. It cant be from the Percocet, as I have been on that for a long time. And I didnt have the memory loss then. It has only been in the last couple months or so. That is the only narcotic that I am on. Gosh, I am going to drive you all nuts, if yall arent already there like me! Sorry about this. I am bombarding you all with my crap....

SoleSinger
09-01-2005, 03:45 PM
Everyone keeps talking about "high doses" of prednisone being like 25-50mg...

I'm on 80mgs/day is that like HUGE??? Has anyone ever been on more than that at a time?

bkellyx3
09-01-2005, 09:39 PM
Been on Prednisone between 40-60mg/day (and Plaquenil at the max dose for my weight) here. I have been in a pretty big flare for about a year now, and just this last month have been told that I am finally in a "controled flare"..... It seems like every time my Dr. tries to wean me down from 60mg, I flare worse. I can't wait until the day I get off of this, but I am so sore, I think I am out of my "controled flare" that I was in last month. My hair is falling out in clumps again, I'm bruising worse than the "prednisone bruising", my fatigue is NOT CONTROLABLE, seeing fuzzy out of one eye, my gums are bleeding, currently have 1 sore in the mouth and 1 in my right nostril, my heart is skipping beats....Rhanaud's is getting really bad again where my toes are blue and cold (can you beleive I have to wear socks in THIS heat??), my fingertips are pealing from the poor ciruculation.......and the joint pain I am in, well, I won't even go there. The pain actually wakes me up. I can't take NSAIDS because of the shape my liver is in, so I'm stuck with Tylenol right now. Not working real great. I have a rheumy appt. on the 7th of this month, so we'll see..... I need something to change here soon, sure don't want this to continue or get worse! I HOPE they don't up my prednisone dose...oh boy oh boy.............what to do with myself!

bkellyx3
09-01-2005, 09:39 PM
Been on Prednisone between 40-60mg/day (and Plaquenil at the max dose for my weight) here. I have been in a pretty big flare for about a year now, and just this last month have been told that I am finally in a "controled flare"..... It seems like every time my Dr. tries to wean me down from 60mg, I flare worse. I can't wait until the day I get off of this, but I am so sore, I think I am out of my "controled flare" that I was in last month. My hair is falling out in clumps again, I'm bruising worse than the "prednisone bruising", my fatigue is NOT CONTROLABLE, seeing fuzzy out of one eye, my gums are bleeding, currently have 1 sore in the mouth and 1 in my right nostril, my heart is skipping beats....Rhanaud's is getting really bad again where my toes are blue and cold (can you beleive I have to wear socks in THIS heat??), my fingertips are pealing from the poor ciruculation.......and the joint pain I am in, well, I won't even go there. The pain actually wakes me up. I can't take NSAIDS because of the shape my liver is in, so I'm stuck with Tylenol right now. Not working real great. I have a rheumy appt. on the 7th of this month, so we'll see..... I need something to change here soon, sure don't want this to continue or get worse! I HOPE they don't up my prednisone dose...oh boy oh boy.............what to do with myself!

bkellyx3
09-01-2005, 09:58 PM
Been on Prednisone between 40-60mg/day (and Plaquenil at the max dose for my weight) here. I have been in a pretty big flare for about a year now, and just this last month have been told that I am finally in a "controled flare"..... It seems like every time my Dr. tries to wean me down from 60mg, I flare worse. I can't wait until the day I get off of this, but I am so sore, I think I am out of my "controled flare" that I was in last month. My hair is falling out in clumps again, I'm bruising worse than the "prednisone bruising", my fatigue is NOT CONTROLABLE, seeing fuzzy out of one eye, my gums are bleeding, currently have 1 sore in the mouth and 1 in my right nostril, my heart is skipping beats....Rhanaud's is getting really bad again where my toes are blue and cold (can you beleive I have to wear socks in THIS heat??), my fingertips are pealing from the poor ciruculation.......and the joint pain I am in, well, I won't even go there. The pain actually wakes me up. I can't take NSAIDS because of the shape my liver is in, so I'm stuck with Tylenol right now. Not working real great. I have a rheumy appt. on the 7th of this month, so we'll see..... I need something to change here soon, sure don't want this to continue or get worse! I HOPE they don't up my prednisone dose...oh boy oh boy.............what to do with myself!

Cinnamon
10-04-2005, 07:53 AM
I just started Prednisone this week. I've been on Plaquenil for about a year. I'm depressed about it, too. I can't afford to gain another ounce of weight. I'm very big as it is. My rheumy mentioned discussing methatrexate (sp?) next visit.

Don't you feel like you have your own personal pharmacy sometimes? :(