I am 51 years old, in good shape and healthy except being diagnosed about 5 years ago with RA. I'm on Methotrexate weekly. The only med that seems to help my daily symptoms is Prednisone. I was weaned off multiple times but the pain would come back. Please tell me if there is evidence that being on a very small dose (3mg) daily of Prednisone for years would have any negative effects. I've asked many doctors who just seem to have the standard answer that "no one should be on long-term steroids."
Whether you're taking prednisone, methotrexate or the Biologics, there are possible risks involved in treatment for the disease and you have to consider the pros and cons. Yes, ideally people shouldn't be taking steroids, but if it's helping you live your life and protecting you against joint damage, it may be worth the risk. I've heard many users here on this site say that they are on a number of medications, including prednisone on a permanent basis, so it depends on your doctor and you which road you end up taking.
I would recommend that you talk to your rheumatologist about your concerns so you can have an in-depth conversation about the risks and benefits of your current medication. You may also want to discuss alternate therapies - are you on any medication other than prednisone? Have you tried some of the other DMARDs (disease modifying antirheumatic drugs like methotrexate, Arava, the Biologics)? If no, maybe it would be worth considering, as well. That said, in my experience, for some people, a low dose of steroids can help the DMARDs go from working well to working great, for others, the DMARDs are enough.
I am on Ratuxin at this time. I've tried everyother Biologic and DMARD, including Arava,Orencia and Remicade, Embrin, Cimzia etc, with little or no results. It amazes me how expensive Ratuxin is; $14 thousand a treatment. I know that their are development and research costs, but this is rediculous. Prednisone works the best and is cheap. I could not function without it and would be crippled. The biologics along with 5mg Prednisone work about 70%. It is dealing with the chronic pain that sucks. I'm just not willing to add anti=depressants as pain relievers. My doctor just keeps throwing pain meds meds at me as if I am a Guinnee Pig and he does not care about the side effects. I cannot take MTX or NSAIDS and will not take any med that makes me loopy. So, alittle more prednisone during a flare is a trade off that I am willing to make.
I'm sorry that you're having such a rough time finding something that works for you. you're right - the cost of medications are crazy, but given the potential effects, it can be worth it. When they work, they often work like a miracle and I wish you could have the same experience. In addition, there are a number of financial assistance programs that can help defray the cost. As you mentioned, there are trade-offs to any medication and for you, the potential side effects and risks involved with taking prednisone are worth being able to live your life.
here's the thing about pain and depression. They are very closely linked - when you're insignificant chronic pain, you can get depressed and when you are depressed, your body gets more sensitive to pain. You may want to check out my interview on RA and depression with the Community Leader of our Depression site that was just posted today. You may also want to ask for a referral to a pain specialist or pain clinic - they often use a multidisciplinary approach to pain management that yes, includes medication, but also a number of other things such as acupuncture, biofeedback and counseling. Learning to live with chronic pain takes a number of different tools, not just medication. However, your family doctor or your rheumatologist and not specialist in pain and therefore may not be aware of other aspects of effective pain control
I'm on my second year of RA, and I was put on prednisone (5 mg) and plaquenil. I did very well, then I started gaining a little weight, but no other side effects. I asked my doc to drop me down to 4 mg to see how I'd do. I did 4 mgs for about 3 months, and now he's dropped me down to 3 mgs. I get a few more minor aches and pains now, but nothing that keeps me down. I've been on low dose prednisone since Oct 08 and i feel pretty darn good. In the beginning I was a little concerned about the side effects (mood swings, moon face, excessive weight gain, etc) but the nurse in my rheumy's office has been on low dose prednisone for 31 yrs, and she's had no side effects and it still works for her RA.. so I feel alot better about pred now..and no side effects...
So, the answer to your question, is yes.
Well let me start by saying your not alone. I did something knowone should ever do. I decided on my own to get off prednizone cold turkey because I was scared of the side affects. I was feeling pretty good since I had Humera. Well I never felt worse than I did the 2 weeks off prednizone. I had very bad flare ups. I could not even put one once of pressure on my foot. I was in a wheel chair for a few days. My rumy gave me the riet act. So the rumy is helping me get off predinzone little at a time. I was taking 10 mg a day now I am taking only 5 a day. I tryed taking 2 1/2 mg in the morning and 2 1/2 at night but I was in too much pain. I still take 5 mg a day but I just take it before bed. I seem to do prety good during the day but when it reaches about 9 PM I start to really hurt. I hope this helped you.
I too have to take Prenisone daily in order to just be able to walk without shuffling and reduce my pain. I would have to take 12mg a day to feel my best but know that this is too much. It is funny how the least expensive med works the best. I wish that their were not side effects as it is the one med that works for me.
I take 5mg daily and 10mg with bigger flares, for over a year. One draw back is that my bone density has decreased. My Dexa scan reading was a lot worse than 1 yr before. I am experiencing hip pain now.
I know for myself that if I did not take the Prednisone that I could not function and the pain and stiffness would be unbarrable. I am choosing quality of daily life and trying to supplement with Vit D, Calcuim and other vits/minerals.
I say, as long as you know the longterm effects and are ok with it, talk to your dr. You have to do what makes your life better.
Good luck to you. Have a happy, pain free day/life.
Julie. Have you ever gone off prednisone completely after taking it for a long period of time? If so, did you feel so tired all the time that you had a hard time functioning? I have been on pred for three years now, mostly because of inflammation in my eye, but I also have arthritis I tapered down to 1 mg daily, and then 1 every other day until I was off. But now, I am so tired, and I noticed my arthritis much more so now. I was just wondering if you had any similar experience. Thanks.
Yes, I had tried in the past to go off prednisone but not sucessfully. I hurt pretty badly and flare up. (You probably know, you do have to be careful when you go off to taper the dose and not go cold turkey). I am going to be trying the newest Biologic next week. I hope that it works well enough to get off prenisone as I know that it does not do my body well, long term. I've tried most all RA neds with little or no relief. (except for prednisone).
Prednisone does affect your adrenal system and that may be why you are more tired. As you may know, any chronic illness can affect your overall wellbeing and chronic pain takes away alot of energy . Most days I am ok and not too tired. I am blessed to be able to only have to work 2 days a week and be able to sleep in the other days. But, on the days that I do work, I am exhausted by the end of the day.
Make sure that you are taking good vitamins and supplements.
I hope that you find something that works for you.
Have a pain free day ")...
Hi Julie-Your response is just what I needed to hear-and I thank you. I have had RA for about 15 years and have had no success with mtx or celabrex--I am on plaquinol 400mg and was taking Alieve but had to come off it due to GI effects. I have come to the conclusion at this time in my life-I want a better quality of life which is what pred 5mg a day offers me. My bone density is not great either but my vit d and calsium levels are good. I am a little scared my RHuem will tell me to try another biologic but wHY do I have to keep trying new ones when this obviouly works?? They all have negative side effects so Im hoping just to go for freq b/w will be enough. I too have trouble navigating in the AM and now I fell so much better-not great but I will take it! Being in the medical field myself--I know the pharacutical industry is a very BIG money maker--so i am very leary of all these new meds...you agree? Sincerely Joann
We sound like sisters of a different mother ")...
I know, the Biologics are extremely expensive. I am now on Ratuxin and it cost $14 thousand a treatment. I have to pay out of pocket thousands after insurance, do to bad insurance.
It is amazing how prednizone and aspirin are the cheapest drugs out there and work the best. Too bad that their can be side effects. But,as you say, side effect are with any medication and when you hear the commercials for the Biologics or any med, if you really listen, the side effects are worse than the disease. Cancer etc.
My daughter is on Embril for JRA and it has works well for her.
You do what works for you. I let my doctor give suggestions but a lot of the time I research the drug and say no. I think that that he is frustrated with me at times. I am frustrated too but I am not willing to take some drugs.
I am glad for the research and developement. Maybe there is hope for us down the line.
Hi B Henry,
It is funny how the cheepest drug works the best. I have has RA for 20
+ yrs. I've been on 5 mg Prednisone consistantly, for about 3 yrs along with going through everother DMARD and Biologic with little results.
Everyone has different reactions and side effects. That said, I could not function without it and it is my quality of life at this moment that makes the choice to take it easy. Stay in bed, in pain or live a better life.
My only side effects, that I know of at this time, are thinning of my bones and it could deminish your adrenal function. If I do have to raise my dose during a flare, I can get insomnia and palpatations.
I wish you the best. Do what you feel is right.
You have to do what is right for you. The doctors don't have RA and have not been on these meds to know what they are like. They only go by other patients and by the book.