Im feeling sorry for myself and would like a bit of encouragement

Hi
I joined a while back but havent been here in a while. i think the people here are really supportive so I was hoping for a bit of encouragement.
I was diagnosed with lupus in 1997, right after I got married.
I have been on prednisone now for over 10 years straight and I cant seem to get off it.
I take plaquenil, imuran, synthroid, coversyl, and crestor as well as prednisone. I have just upped my prednisone to 10 mg today, because I have had a sore neck and left shoulder pain for the past 1 1/2 weeks and just re ognized it as a flare.
I have RA and have swollen fingers and tiredness and aching more than usual.
I have to say that it has been a while since my last flare, which is good. I mean, if not for the handfulls of tablets I take every day, you would think that I was not sick at all!
The reason for this flare is the fact that I went from 4 mg to 3.5 mg last week. Well actually the day after I decreased, I think that is when the pain first started. You know, you try to figure out how you pulled that muscle, you work through the usual process of therapy to fix a sore muscle. Rest, heat, rubs, tylenol and finally it dawns on you.
I took today off work hoping that prednisone will work its wonderful magic again and cure all my aches. Im feeling sorry for myself and just wanted an understandingshoulder to lean on.
Has anyone had success getting off of prednisone after being on it for so long? How did you do it?
Thanks for listening.

Remember that the bodies adrenal glands naturally produce ~5-10 mg of cortisol. Prednisone turns into cortisol in the body. Some of us manage to slowly wean off of prednisone, under drs supervision, but others the adrenal glands just refuse to produce as much as we need. You may be one of us who has to maintain at 4 mg for the rest of your life.

I was able to wean completely off of prednsione after taking 15 mg for 8 years. You want the Dr's supervision as coming off too quickly can actually cause your heart to STOP - not a desired result. In my case, we came down by 1 mg every 4 weeks or so, then by .5 mg every 2 weeks once I got below 5 mg. But you need to follow *your* drs guidance, as we each present so differently - you dr has tracked your reaction to pred from the beginning and thus has the best data to create your ramp down plan.

It's also important to determine if your pain is from inflammation or not. If not, taking prednisone will have no effect and instead you need pain meds. Your dr should be able to tell by the inflammation markers in your bloodwork - hints for you are swelling, redness, and heat. Without those, it isn't from inflammation may not be the best course of treatment.

Generally as I was coming off prednisone, if I started getting overall fatigue & RA acting up, I was directed to go up just a few mg. In severe cases maybe up to 10, but only for 3-4 days, then back to 2 mg more than my last comfortable amount, and re-start tapering from there. If you recognize it early, just go back to the comfortable amount for another week.

Just my $.02 - hope you feel better soon. And it's not really a biggie if you never get of prednisone - just keep up with your calcium supplementation!

Hi Jennifer8,

      I have tried a number of times to go off Prednisone, but nothing worked for me.  We tried Cell Cept, which was great for me, but my white count suffered.  I could not take Methotrexate, so that alternative went out the window.  Imuran worked, but it affected my white count.  I still take Plaquenil and 10 mg of Prednisone every day.  My body loves it and it makes me feel really good.  I am, however, experiencing side effects from long term steroid use.  Currently, I am trying Benlysta and it really seems to be working.  I feel pretty darned good. It feels like I am in remission, a sensation I have not experienced since I was diagnosed in 1997.  So far I have had two treatments.  I go for the third one tomorrow.  The plan with my Rheumy is start weaning me off the Prednisone  starting next week.  I am going to keep my fingers crossed and hope that I can either stop the Prednisone or reduce it significantly.  I also balance my use of allopathic medicine with other more Eastern practices.  I take part in Tai Chi, gentle Yoga and meditate.  Accupuncture has also helped with some of my nerve discomfort and pain in my lower spine.  And massage is truly a blessing!!!

Laura

 Lynnwood said:It's also important to determine if your pain is from inflammation or not. If not, taking prednisone will have no effect and instead you need pain meds. Your dr should be able to tell by the inflammation markers in your bloodwork - hints for you are swelling, redness, and heat. Without those, it isn't from inflammation may not be the best course of treatment.

I seem to suffer frequently  from what my rheumy says is tendonitis and bursitis.  Elbows, knees, fingers, wrists,ankles, etc.   I didn't get a real answer when I asked why.  He did say that commonly, the sed rate and CRP won't reflect the inflammation in the soft tissues (such as tendons).  This doesn't make any sense to me, but seems to be the case.  My ESR and CRP (since being on Plaquenil) are mid range normal, but there is definitely some inflammation still occurring. 

Anybody understand this or have normal range inflammation markers despite "itis's"? 

There are a lot of natural things that you can do. You need to work with your doctor and make sure that he/she approves your supplements. Read this book "Curcumin: The 21st Century Cure: Prevent and Reverse: cancer, depression and dementia, digestive disorders, diabetes, pain and arthritis, heart disease by:Jan McBarron M.D. Turmeric Curcumin is a gift from Heaven. It lowers your inflamation and your pain levels. I am on 3-4 grams (3000-4000mg) a day and what a difference.
I use evening in primrose and eat a very healthy diet. I am not on any meds at this time...only supplements and they are working.
Things are not always perfect...but I manage to stay close to a 2. My life is liveable and I choose to live ever moment to the fullest. Try to focus on the good things and where you want to go. This will help you get through the not so good days.
Life is wonderful so be thankful for all the wonderful things in your life. If you focus on the bad your life will follow. Make your choice and choose to be happy and enjoy all the gifts you have been given. Remember that there is a reason for everything that happens!