Well I saw my PCP today after we transferred all my care from Mayo to my PCP here. He said all the symptoms I am currently having are all from the prednisone and that the prednisone did its job and now is over doing. So he is starting the tapering today! :) I am so glad for a doctor that cares and is listening to me and is worried about what the prednisone will later do to me. He said that in a month I should at least be at 5mg or completely off!! They are going to possibly start cell-cept but we have to wait for the nephrologist to start that. He also said they will have a clearer picture on the lupus once the side affects of the prednisone are gone. So its going to be a long month waiting to see what happens. I am hoping that I will have a major turn around and that I will be able to start doing more. Its been a long 6 months!
Don't know what dose of prednisone you are on but a rapid decrease can cause a severe flare. Your reduction should be done only under close supervision of a rheumy and or nephro. Sometimes tapering is done as little as 1 mg a month and often a complete taper is not possible. Renal disease is nothing to fool around with in lupus and if currently under control you sure don't want to cause a flare by being in a hurry.
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I don't want to discourage you but poobie is right when I have tapered off prednisone I have experienced flares and had to go much more slowly than I wanted. I have tapered off completed a few times so it is possible just be patient and work closely with the rheumy. Good Luck!
When you say it's been a long six months, is that how long ago you were diagnosed? I was diagnosed in July and am trying to figure out the time frame I should expect to get back to work and start to feel better.
I am currently on 20mg my PCP was going to take it right down to 10mg but was worried it would be to fast to quickly. so we are going to start at 15mg and in two weeks if I am feeling ok we will go down to 10mg and then 5mg and then 1mg gram at a time after that.I am a little worried I will never get fully of the prednisone but even if I can get it down Ill be happy. I lost almost 30# when I first got sick. With the prednisone I have put almost all of it back. I am also starting to get muscle weakness from it and can hardly walk or get out of a chair without help this past month. It has also given me cataracts in my eyes on top of several other issues. got to love that prednisone! Once the side affects are gone from the prednisone they will be able to see how the lupus is doing and where to go after that.
I first got sick in March and diagnosed in June. But I have been back and forth to so many hospitals and doctors its been frustrating as pretty much every doctor but my PCP have said its all in my head and I need to get over it and get some "help".... and they just continue to drag there feet on my case. So we are back with my PCP and he his helping trying to figure out what medication will be best for me. He knew in July that Mayo should have been reviewing my case and the medications I was on, but they didnt. The nephrologist said that I should be off the prednizone when I last saw him. After we didnt hear back from him in 3 weeks he called and said that they were just going to keep me on the prednisone. Its like they cant make up there mind and I am just a guinea pig for them......
Its been a really hard adjustment for me as it has left me pretty much disabled at this point. I cant go long distances such as school or shopping with out a wheel chair. and If I get super tired or I am "flaring" I can hardly walk or get out of the bed. I am just thankful for the wonderful mom I have! She is working so hard to take care of me and is always willing to help me. I had to put school on hold this semester to try and get a handle on the lupus. I have had a lot of ups and downs and have had my days were I cry my self silly but then I just remind myself of what I still have and do the best with my limitations. I feel like I am finally sort of adjusting, I am still hoping and praying that it will get even better. I just dont have much patients and want it to be better now. :) This whole thing has and is teaching me to be patient.
I am sorry you aren't getting the support from the other doctors, but it sounds like your PCP is really trying. If you're not getting the support you need from your docs, then pose the questions here. I've learned more here than I have from my doctor. And don't give up, the way you feel today is not the way you have to feel tomorrow or even the next year. I had filed for disability in January, and I thought this is it for me, this is the best its going to get. I was just diagnosed June of last year, and I didn't know what was going on. Today, I am searching for work, and feeling so much better. I listened to advice and had my Vit D level checked, and I changed my diet and started eating healthier. There are things we can do take care of ourselves, and we don't have to accept that this is as good as it gets. Please let us know how you are doing with the prednisone and hang in there. Hugs to you
I’m glad you’re feeling a little encouraged. I’ve read your other posts. You’ve been having a heck of a time with these doctors. It must be so frustrating. I know what the others are saying about tapering too fast. I think someone just posted something about withing the last week or so so that they were tapered down too quickly and got sick. Something about your adrenal glands have to wake up and start producing again. I wish I could be more specific…sorry…mushy brain today. You know your best. If you start to feel the least bit not ok…tell your pop. Maybe it takes a little more than a month to get off the pred. The positive thing is you are finally moving in a positive direction hopefully. Keep us posted!
Hopefully your taper goes well Sometimes the side effects are almost as bad as the disease- especially with prednisone. However be sure your goal is to get your illness under control not just get off of prednisone. When my kidney disease was active I was on 60 mg of prednisone for 18 months. It took many months to taper down to 10 mg and I remained on that for more than 5 years. Decades later I still need more intensive treatment periodically - this go around is going into its 4th year BUT I have been able to remain active and productive most of my life There is a lot you can do to make things better but there is no cure for this illness. The more you learn the better you will understand how to cope with this illness Diet, exercise, avoidance of sun - all play into your well being- these are things you can do- ---
Good for you! Keep a positive attitude! I am so glad to be off prednisone, the side effects I had were worse than the lupus.
I have learned through this all that a positive attitude really helps on how you are feeling. I will admit I still have my down days but it doesn't do myself or the people around me any good. I am seeming to feel the same about the prednisone. I was only on it for my kidneys and they are doing really well now so we shall see what the nephrologist says next week.
McMommy said:
Good for you! Keep a positive attitude! I am so glad to be off prednisone, the side effects I had were worse than the lupus.
20 to 10 would definitely leave you feeling like crap for at least a few days. I would go much more slowly.
When I wean off prednisone (3 times now) from a large dose, I go really slowly. 40 to 37.5 for a week or 2, then to 35 for a week or 2, then 32.5, etc. I never jump by 10, or even 5 mg. When I did do that (once) I ended up flat on my back feeling like I had either the flu or the lupus coming back full-force. Everyone is right. taper slowly- it's so much better than ending up very sick again. I don't know why more rheumatologists are not more conservative with the tapering. It's so dangerous to taper too quickly, and leaves you feeling so bad. Going from 20 to 5 in one month sounds overly ambitious to me. Go slowly, and listen to your body, and track your symptoms either on paper or in an app like "symple" (symptom tracker).
Louters said:
I am currently on 20mg my PCP was going to take it right down to 10mg but was worried it would be to fast to quickly. so we are going to start at 15mg and in two weeks if I am feeling ok we will go down to 10mg and then 5mg and then 1mg gram at a time after that.I am a little worried I will never get fully of the prednisone but even if I can get it down Ill be happy. I lost almost 30# when I first got sick. With the prednisone I have put almost all of it back. I am also starting to get muscle weakness from it and can hardly walk or get out of a chair without help this past month. It has also given me cataracts in my eyes on top of several other issues. got to love that prednisone! Once the side affects are gone from the prednisone they will be able to see how the lupus is doing and where to go after that.
I first got sick in March and diagnosed in June. But I have been back and forth to so many hospitals and doctors its been frustrating as pretty much every doctor but my PCP have said its all in my head and I need to get over it and get some "help".... and they just continue to drag there feet on my case. So we are back with my PCP and he his helping trying to figure out what medication will be best for me. He knew in July that Mayo should have been reviewing my case and the medications I was on, but they didnt. The nephrologist said that I should be off the prednizone when I last saw him. After we didnt hear back from him in 3 weeks he called and said that they were just going to keep me on the prednisone. Its like they cant make up there mind and I am just a guinea pig for them......
Its been a really hard adjustment for me as it has left me pretty much disabled at this point. I cant go long distances such as school or shopping with out a wheel chair. and If I get super tired or I am "flaring" I can hardly walk or get out of the bed. I am just thankful for the wonderful mom I have! She is working so hard to take care of me and is always willing to help me. I had to put school on hold this semester to try and get a handle on the lupus. I have had a lot of ups and downs and have had my days were I cry my self silly but then I just remind myself of what I still have and do the best with my limitations. I feel like I am finally sort of adjusting, I am still hoping and praying that it will get even better. I just dont have much patients and want it to be better now. :) This whole thing has and is teaching me to be patient.
That's wonderful! My Rheumy is the same and actually used to be at Mayo...they are excellent. I am doing the taper off as well, but was on CellCept as well. It takes so long for CellCept to kick in that often they will do both so that when the CellCept begins to work, you are ready to taper down or off.
I am so glad you r feeling better.
DeAnne
Thanks for all the tips and information! I was going to go down to 10 mg today if I was feeling ok but I cant tell what I am feeling is me going off the prednisone or the cold rainy weather we are having..... so we will wait till at least thursday till we see my doc to see what he recommends. I feel like we are finally on the right track on getting me to a new "normal" ! :) I have been accepted into a program that will help me with school as well as job placement so I am pretty excited about that.
WoW, I always learn so much from reading others post. I am also in the mist of weaning off Prednisone. I was on 20mg . My Rheumy took me down to 10 mg for 2 weeks. Last friday I started 5 mg for 1 week. I had no idea that was considered weaning off quickly. No wonder I feel like crap. And I don't see my Rheumy again till the 24th
Today my day consisted of getting out of bed, taking a shower, putting pajamas back on & sleeping most of the day on the couch.