[Kate*H]

I have a pretty mild case of lupus. I have no organ involvement,and the only drug I'm on is plaquinel. Even so,I have lots of joint and muscle pain and fatigue ,and Advil just isn't cutting it anymore. I've been leary of going on prednisone because of side effects etc ,but recently tried 5mg and it helped. I'm considering staying on 5mg a day to see how I do. Is it true that anything under 7mg is a pretty safe dosage to stay at? I understand that at a higher dose your body stops making it's own steriods and starts relying on the artificial doses. Is that correct? Truthfully I would rather live with the pain then go down a path of no return re: steroids. I guess my question is ...are any of you on small doses ,and how does it affect you? I've had so many people tell me how awful steroids are re: side effects etc. and how I should avoid them if I can. But also I'm so tired of being in constant pain.
Thanks , Kate

 

[pennylp]

Hi Kate,

Just read your post and felt I needed to reply to this one... As far as the side affects of pred with long term use at five milgr... I am not sure to be honest... But I am sure if it wasn't good your doctor should tell you... But I am sure someone on here will respond to that question...
I know for me... And this is only me... Everyone is different.. I suffer from a variety of problems... I have Lupus , RA, Chronic Back problem, which also consist of degenerative disk desease in upper and lower back and I also have non hodgkins lymphoma including a few other things....
For the last sixteen years I have had the most wonderful doctor a person could have... He is a GP.. who found most of my problems and has treated me for every ache and pain in my body... I didn't want to go on morphine because of the addiction it would cause... But I went on it, and I have a quality of life that I would not have if I wasn't on it for pain...That also goes with other meds... I know I can do things with my family and friends I would never be able to do if it were not for medicine...
It is something you should discuss with your doctor and weigh out the benifits for you.... You take care and hope you feel better...

Love Penny:hug:

 

[Clare.T]

Hello Kate
I would be thinking of another disease modifying medicine with more overall advantages and very low risk of long term side effects. Quinacrine, another anti malarial for example which works very well with Plaquenil or Imuran or methotrexate.
And more effective painkillers. It's clear that the Plaquenil and current NSAID's aren't enough.
It can take time to find just the right mix so it's reasonable to use the Prednisone only as a stop gap.
That being said quite a few people are on very low dose Prednisone along with their other drugs but I don't know their circumstances.

I have read that chronic pain puts a strain on the whole system causing raised blood pressure for one thing. It has to be fatiguing and seriously impair the quality of life which is the most important aim of therapy.

Good Luck

Clare

 

[LolaLola]

Hello Kate, You are quite right in what you say. Some Docs. call 7.5 mgms of pred the "golden dose" as that or below you get all the advantages and the least side effects. Clare is right when she says that maybe something else should be added to your cocktail. Meanwhile I am glad the steroids are helping you-enjoy it.
x Lola

 

[Raglet]

hi there

I really think you need to talk to your doctor about this. It may or may not be the best thing to do, especially if you have not already tried the steroid sparing drugs like metho, imuran etc.

The reason that rheumies like to keep the dose under 7.5mg is to reduce the likelihood of adrenal supression. But I'm not so sure that dodging adrenal supression would mean that you don't get other problems that go along with prednisone use (osteoporosis, heart disease etc).

If this is the first time that you have ever taken steroids, then I think that it is a bit soon to say whether you need to be on them long term. I have ended up being on them long term (my maintenance dose ranges from 10 -20mg) but we spent years trying get me off pred before we (my rheumie and I) accepted that it is necessary for me to stay on it.

I would be really interested to hear what your rheumie has to say about this - it sounds like you two need to have a conversation about this.

hth

raglet

 

[Maia]

Personally, I am willing to go on prednisone but try to keep it to 2 months or less; ideally less than 2 weeks because if you keep on it for less than 2 weeks then a long taper isn't necessary (as adrenal suppression is very unlikely). Sometimes, you just need a quick "jolt" to get you through until the meds start working, or you get a little remission, or until you can find the right mix of medications.

Considering the amount of pain you're in... I would think that a bit of prednisone now is probably a good option. But I would be asking about trying a different NSAID (I went through several before I found one that worked at all), then about trying methotrexate (very often used to help joint pain), or Imuran. Then, after all that is when I would be thinking about prednisone being necessary over the longer term.

 

[Nutty]

Hi Kate,

I would be very hesitant to make a low dose of Prednisone as an option at this point. As mentioned there are so many other drugs available to help with the joint and muscle pain.

I had to reply to your message because I'm in the same position. However, Prednisone has been a nightmare for me. Apparently I am super sensitive to it. At first, it seemed to give me a lift, as it is a steroid. But they had to keep increasing it and it just didn't work. Eventually, I was put on Methotrexate and that made all the difference in he world. At that time I was on 35 mg of Prednisone. The doctor said I had to get off the Prednisone because it was going to kill me and not the Lupus. I could only reduce it by 1 mg a month or I would get sick. When I got down to 15 mg, I developed diabetes. Eventually I started to reduce the Prednisone again. I got down to 8 mg and then got sick again with pericarditis. I was so sick that the doctors were suggesting that I might have to stay on a small dose of Prednisone. I was going to agree to this until my latest episode. Last week I woke up with excruciating pain in my knees. I have been basically bedridden since then. I have had severe stomach issues as well. Turns out it is from the Prednisone. I was up to 80 mg for the pericarditis. I'm down to 50 mg now, but the doctor said I may be in this condition for several weeks. So, I think for me I have to find a way to get off the Prednisone completely. My sister was on Prednisone for 35 years due to Chrones. Imuran was the only drug that worked for her. She could only reduce it by 1 mg a month or the Chrones would come back. She has been on imuran for a few years now with no problems whatsoever.

I know Prednisone works wonders for some. Short term, there are generally no problems. But they ARE cases like mine that are severe. So again, I would hesitate to choose Prednisone as the choice of drug at this time, especially long term. My choices are limited because I can't take anti-inflammatory medications because I must take Coumadin. When I get through tis crisis, I will most likely try Imuran next.

Hope this helps.

Nutty

 

[Kate*H]

Thanks everyone ,You gave me some good ideas. I do need to talk to my Dr. The only reason I haven't yet is because it's a 2 hr round trip ,and I usually have to wait an hour in the waiting room ,so it's a long tiring day ,and it's hard to get the time to go ( I'm self employed).
I think I'll only stay on the prednisone for this week.,then wean off. My granddaughters ( 3 and 6) are visiting for the week and they really wear me out. I was hesitant to start the prednisone ,and I appreciate all your input. I will ask my Dr. about methotrexate or Imuran.
Kate

 

[dudley]

Hi

I would never self medicate myself. Yes I have to travel to see the doc and wait forever in the waiting room. There could be a good reason doc has not put you on steriods or even a low dos. There are so many different drugs for the pain. Plus pain could be related to something non lupus. I would bite the bullet and see the doc.

I have to tomorow. Can't wait.

Elaine

 

[Kate*H]

Hi Dudley ,
Yes, I'm definately going to see the Dr. She actually gave me the prednisone (120 5mg. caplets) with one refill ,and told me to use them if needed.So I don't really feel like I am self medicating. But i've always been hesitant to use them ,which is why I came on here asking questions.Sometimes I don't always trust what Dr's tell me ,and like to investigate myself . And frankly, having access to 240 pills without her supervision,to use anytime I felt like it, made me nervous. I'm guessing that she thinks i WILL be using them,but I haven't.
Kate

 

[Sage Hen]

Hello,

I am on a low dose maintenance dose of pred. 5 mgs, in addition to CellCept, and Plaquenil.

I must admit, that although..I do feel better, I have gained a lot of weight and it makes me feel worse..(does that make sense)?. I feel swollen, and uncomfortable. I am retaining a lot of fluid, my hands, legs and feet are swollen
since, being on the dose for the past 3 mos.

I am going to ask my dr. if I can wean off of it again. I am diabetic, and I crave sugar so badly on the pred..I know, my Rhuemy will agree, to let me wean off of it..He is very trusting of my own judgement and feedback.

I wish you the very best..Kate.

Sandy

Sandy

 

[Edith]

I too am on a low maintenance dose of prednisone (2 mg) and have been on prednisone continously since diagnosis 2.5 years ago. I started at 5 mgs and dropped to 2 but have been unable to get any lower. I don't have organ involvement - just body wide joint pain and tendinitis in my achilles. I am also on methotrexate. I can't tolerate plaquenil and if we increase the dose of MTX I start having bad stomach troubles. I can't say I am totally comfortable with the situation the way it is, but the deal is, I have to be able to work. I don't have anyone else to support me and if I couldn't do my job I would lose health insurance and couldn't pay for my care. I don't think I would qualify for disability really so I feel like I have to do what I have to do. When I am on prednisone I can function pretty normally and even exercise. Whenever we have tapered, the pain comes back within a day or so and because of the tendinitis I start having trouble standing up. I wonder sometimes if my doctor knows what he is doing when he tells me I am ok dose-wise and duration wise. But I also feel like I don't have a ton of alternatives either. I haven't had any of the traditional side effects like severe weight gain and we are monitoring all the other things like blood sugar, etc. So far I seem to be faring well (knock on wood). I wonder someday if I will have to pay the piper for what I am doing, but again I am not sure what a good alternative would be.

Not sure this post will be helpful to you, but I certainly qualify as someone on a maintenance dose and wanted to give my experience. I hope things turn out well for you.

 

[pukekos]

Hello,
Here is my two cents worth
My rheumy said that anything below 5mg would be okay but if I could come off I should. My pharmacist agreed. I have had to taper VERY VERY VERY slowly over the past 5 years ( I started at 40mg) - usually .5 or 1mg at a time. My body LOVES pred and wants me to take it and it does help. I would hesitate to take it forever unless it made all the diffrence in the world. I am now off pred (as of March 21st) and hope to stay off. My body was very unhappy to begin with but things are pretty good now. I use naproxen for days I just have to have some relief.

Cheers
Pukeko

 

[SarahP]

I am also on a maintenance dose of 5mg along with 400mg Plaquenil, CellCept and other meds.

I have been on some dose of prednisone for over five years. The 5mg has been the dose for the last 2 years. At the higher dose (30mg for 2 years) I developed cataracts, high blood pressure, and high cholesterol. All of these problems have been reversed on the 5mg prednisone dosage. I did need cataract surgery 3 years ago (at age 53) in both eyes. I am also on a statin for cholesterol and my readings are now normal.

The treatment plan is to keep me on 5mg prednisone with all of my other meds indefinitely.

Sarah

 

[Kate*H]

Just an update:
Well I went off the prednisone totally. I've changed my mind about stayng on a low dose permantely. I started acupuncture treatments and had Nutritional Response Testing done which resulted in my taking various supplements tailored to my health needs( inflammation and low adrenal function and mercury poisoning are just a few things that showed up. )
It's really made a difference in how I feel. Less pain and less fatigue. I don't feel the need for prednisone anymore. Maybe that will change down the road, but so far this seems to be working for me.
thanks everyone for you input.....Kate

 

[Lily]

Hi Kate,
I am just wondering how the nutritional response testing was done on you?

If it was done by testing muscles you might find this article from Quackwatch interesting

http://www.quackwatch.org/01QuackeryRelatedTopics/Tests/ak.html

it seems that when they trialled it under strict conditions the supplementation was proven to be no more effective than placebo. The actual testing process was also very questionable. That's not to underestimate the placebo effect, it can be very powerful and if you feel better for it then that's great. Whatever works and preferably keeps your disease under control with the minimum medications. But do still keep having checkups with your doctors and do tell them what supplements you are taking in case they interact with any of your meds.

Take care,

love
Lily

 

[angel4ever]

taking a low dose of prednisone

Hi dudley,
I have been on 10mg. of prednisone for 20 years and it has done a lot of damage to me on one hand it helped me so I could work. The main thing is to take CALCIUM ever day the doctor never told me and I'm suffering form Osteoporsis I was in a car wreck and thats when I found out that my bone are very thin I broke 7 ribs and broke my back:sad:. If there is any thing that will work other then prenisone I would choose to take it. Prednisone is ok if you only take 5 mg or less for a short time, and take extra calcium that is very important if I had taken extra calcium I would not have all the problem that I have. I also have became a diabetic. If I had it to do all over I would never take prednisone.

Take Care
angle4ever