Hi amber. Please don't get upset. You just need longer fir the MTX to get into your system. It's taking you a bit longer because you have had to switch your second line drug. Take it easy and slow. You will get there. Autumm

Hi amber...Meow,

Agree with autumm. I had a feeling when my Rheumy and I were discussing my totally going off Prednisone, that I really couldn't go to zero. I believe I will always need some for the PM and a few other diseases that I have swimming inside me. Currently I'm taking 10mg, and just dropping from 15 to 10 is causing diarrhea. It should be over soon. Usually takes around a week to adjust to most med changes.

Didn't have any trouble going from 20 to 15. Go figure.

I've also had to stop eating certain foods, because they were causing aches and pains. So, I guess in addition to PM, Fibro & Restless Leg, and Diabetes, I also have food allergies. Ho Hum. Just another item for my "baggage". Smile.

Hugs,
Purr,
=^.,.^=

Don't despair. The last 10 mg. are the most difficult to taper off. I had times that a taper worked, and other times that I had to go back up. But I was finally successful. Shawna recommends alternating dosages for a few days or so, i.e., 9, 8.5, 9, 8.5, 9, 8.5, 8.5, 9, 8.5, 9, 8.5, 8.5.... It does help to get adjusted to the lower dose this way. Another thing that helped me was when my doctor transitioned me over to hydrocortisone. You will get there, Amber. It just takes time and patience.

I'm with the others. Try not to be too upset. Although I remember struggling myself. It took me years to get off Prednisone and it was not easy. I did an every other day thing too. Eventually I took the Prednisone every other day and then slowly lowered the dose. Some days I felt like I was on a rollercoaster. And I believe it is rare for us to get off with Myositis. Most find a small dose is needed to maintain function. The last 10 mg are the hardest for sure.

Thanks for all your comments and for just being there to help. Thanks for the Hugs Buttercup. I expect you all feel this is a very strong support group and whether its just me but I can feel how genuine and lovely you all are.

Hi Amberhere, I do know that we can all relate to your prednisone and disease struggle. I have learned over time to expect accomplishments and set backs with DM.

Everyone has given excellent comments. I know that you will get adjusted to your meds and eventually regain control. It is a struggle at times too. Hang in there!

Another thing I thought about is sometimes my taper would take a week or so to level out. I sometimes felt awful for about a week and then it would get better. How long were you on the reduced dose? I usually tried to give it a week at least before I called it a fail.

I am with Alexis. It took about eight days to adjust every time., however, my hands did not swell or the pain return so I believe fir you Amber its about not being long enough on the MTX. I agree with you about the people here. I just would not have made it without their fantastic support. You will get there, be kind yo yourself, you can't do anymore, its a time thing now. Autumm

Hi all, in answer to your question Lexisgirl I have been on 9mg since last year (tapered down from 15mg), I then went to 7mg the other month which was a disaster so had to go back up to 9mg - now I am on MTX (7th week) my doctor said it was time I tapered again as he was not happy about me being on 9mg for so long. I tried 8mg a few weeks ago and stuck with it a couple of weeks and felt horrible so went to 8 1/2mg for a couple of weeks felt a bit better then this reaction happened. I have put myself up to 9mg for now. What I don't understand is why in afternoons I feel slightly better - is it because the steroids have "kicked in" for the day? I tend to think the same as you, Autumn - that the MTX hasn't got quite into my system yet.

can someone explain why there are so many pains/side effects when tapering and why you need a second drug when tapering such as MTX and waiting for it to kick in? It makes me think that my rheumy is forgetting something lol

Because right now I am also tapering my prednisone but that is the only drug I'm on and haven't had any 'failed' tapers..im currently at 25mg pred.

Hi JNS. You are one of the fortunate ones for which the Pred works and you are not flaring on taper. Most people need the DMARD to come off the Pred. One replaces another eith totally or just taking 5mgs of Pred. Your Rheumatologist is not missing anything. I need the Azathioprine to keep my JO1 antibody suppressed. I finished the Pred taper in Dec. we are all different and our doctors go with lab results, how much strength we have or have not, how we are feeling and many other things. We all get there in the end, it just takes extra Meds and a little while longer for some. Autumm

@jns01
My understanding is that once a person has been on prednisone for more than 2-3 weeks, they must carefully taper because the adrenal glands are dependent upon it. The taper must be slow, otherwise different body systems can crash. When my father was on prednisone, his doctor explained that my dad could go into heart or renal failure if he abruptly stopped taking prednisone.

Prednisone was the only medication that I needed for my PM. Some doctors automatically place patients on other drugs immediately, because they don't want their patients to be on prednisone for a long period. Other doctors use the sparing drugs if prednisone doesn't work for their patient, or if the patient has certain auto-antibodies. My neuro's philosophy was to use one medication at a time. So he didn't place me on anything else, because prednisone worked well for me. After I moved, my new doctor agreed with my neuro. Plus, she worked to help me taper off prednisone. The last 10 mg. is the most difficult to get off, so not all my tapers worked the first time. Then she transitioned me over to hydrocortisone (Cortef), which worked well for me. Hydrocortisone is bio-identical to the cortisol that our own bodies produce. Also, it has a shorter half-life, so it leaves the body more quickly than prednisone. If my memory is correct, prednisone stays in the body for 24-36 hours, but hydrocortisone only stays in the body for 12-18 hours. The theory is that the person's adrenal glands will be forced to kick in once the hydrocortisone is depleted. I also took a supplement called Drenamin (from Standard Process), which is supposed to support the adrenal glands. For me, this taper protocol worked. So after 3 years on prednisone, I was completely off it. Best wishes to you for a successful taper.

Hi again - thanks for the hug trpt1 - feeling better now gone back to 9mg - hopefully I won't be 90 by the time I finish my taper!! (I'm only in my 50's) I try to keep a sense of humor lol!!

Jns, Steroids are taking over the production of cortisone from the adrenal gland. Cortisone is the feel good hormone or chemical that our body produces when we are stressed or in pain. When we take the pills the body stops being able to make it as well and when we withdraw it rapidly the body cannot adjust as needed and we feel the pain of not having enough.
Nanny is a great study!! I have described how i trick my body at times to accept the new lower level. Most of us make 8 to 10 mg of steroid in the form of cortisol every day, so above that level tapering can at times be easier. when we get to the 10mg mark most doctors will slow things down considerably.
It takes somewhere around 4 to 6 weeks to become dependent and so that is why folks can do a 3 or 4 week rapid taper or a three day 1000mg boost without any side effects of withdraw.
Even on a daily dose if we get a huge stress we may need more and if we cannot get it we can go into adrenal crisis and have horrible symptoms that may lead to ER visit and if they do not give us steroids it can lead to death. When my endochrinologist mentioned this to me he insisted i read a paper he gave me and get a med alert bracelet immediately and wear it daily. I have a necklace with two heart charms and a medical charm i wear at all times.
I have tapered many times, and can often trick my body to accept the taper but only if the body is ready. This type of taper prevents for me the awful thoughts, the depression, the aches and pains are minimized and i only have one or two days i wish were better.

The bigger jumps from 20 to 15 usually go easier for me and i do not always do this, but when i anticipate it being harder this is my routine...
I go down to the lower dose only two day in a week initially then up that to 4 days in a week the next week and then may be done... It looks alot like what Nanny said. Here is a typical taper in the lower ranges for me...
8,8,8,7,8,8,8,7,8,8,7,8,8,7,8,8,7,8,7,8,8,7,8,7,8,7,7,8,7,7,8,7,7,7,7,
Some times i can be down totally in two weeks sometimes takes 17 or 18 days but i feel good most of the time and don't have the week of doom.
My doctor loves this, but said there is not way i can explain that or put it on a pill bottle... So As a nurse I share it here when i can. ask your doctor.
If you are new to steroids, it is important to set a plan for how you will try to taper and for you to maintain some control to shift a bit if it is too hard. Also a plan for what to do on high stress days. I took a stress dose for my surgery day, and for travel days, things that will cause me extreme stress.

Sorry not as organized a post as i like, but was up late waiting for daughter to get home from Senior Prom, i am a bit tired...

Here is another thought. I think of steroids as a dance. We learn about each other as we do the dance, and some times we are not ready for the next steps yet, we need to keep practicing the ones we know and are comfortable with.
This is not a pass fail type of thing, so your body was not ready to taper just yet, and give it a few more weeks and try again.

Blessings to everyone, Shawna