Hi Amber. Do check with your doctor but after two weeks I would be inclined to go back to what you were on before the last taper. Your MTX is kicking in but you may need a bigger dose to get you off the steriods. Don't get too down, this is a slow business and in fact 7mgs is a really low dose and you have done wonders getting there. The return of pain would tell me its the disease not the taper. We learn the difference through experience. Keep going Amber, you WILL get there, just not yet. Autumm

Hi Amberhere, Autumn said it well about probably needing a bigger dose of MTX for taper/maintenance of DM. I took 17.5mg of MTX for a while and could not taper down until I went up to 20mg. I am obviously not a doctor, but I do believe the 15mg is too low, so check with rheumy.

If you feel any pain then that means you must get stable before going lower. I always experience plateau levels during tapers, where I can tell that I need to stay for a while at a certain level of steroid.

I know you live in UK, but it is important to stay on the phone with the rheumy if you suspect a setback, pains, or something is not quite right during a taper. Here in the USA, I pop in for a fast blood work between appointments if I feel awkward. My rheumy will call me and tell me to raise the steroid by 1 or 2mg if the blood work shows ALT beginning to elevate, and I have hit active disease.

I can tell you are at the point where you know that the taper is not a race. Remember that our meds should help us feel well on a daily basis. The meds also slow down the progress of DM. I concentrate on feeling well daily. If I can taper then great and if I can not taper then I make sure the meds are adjusted to feel well.

I know the feelings you are experiencing and you are in good company. Try to stay positive. Try to eat healthy so you will feel better too.

Best wishes with your choices and I hope you will feel better.

Thanks for your replies and help - I have now gone back up to 8mgs steroid for a while - it's like one step forward two steps back. I was hoping I didn't need to increase the MTX but looks like that is what is going to have to be. I do have access to a Rheumy nurse as I only see my actual Rheumy consultant once every 6 months. The bloodwork etc is shared with my Doctor and the nurse. I guess I was really hoping I could taper off and in my "fantasy world" I had hoped I may not need the MTX eventually but I try to stay positive but am finding it really hard at the moment. I am so glad I get a lot of support here as many people don't have time for PM/DM.

Glad you decided to go back up to 8 mg., Amber. It was probably the best thing for you at this time. Tapering prednisone always seems to be up and down. There were times when I was tapering that I had to go back up to the previous dosage, or a higher dose. But after 3 years I was able to successfully get off prednisone. So don't give up. Best wishes to you for success.

I remember feeling like i failed the taper, and it was very disappointing... Know that you are listening to your body which is a skill in itself and you are learning more about it.
Glad 8 is working better for you, maybe in another month it will be easier...

Best to you, shawna

Hi Amber. Glad you have gone back up and hope you feel better soon. It does take time to get these Meds right but it will happen I read so many stories of people in remission and no drugs who were having your problems. They get well, leave the forum and so we don't hear the good stories, its a marathon Amber, wish it was a sprint but you are doing great if you can think back just even a short while. I agree with you in our day to day lives no one 'gets' this disease but we do!! Autumm

Thank you everyone - you all have cheered me up and I feel better now - thank goodness for you lovely people!!

Hi Amberhere. I too am on a taper and got down to 7mg. After about 4 days at 7 mg, I started having fatigue and not feeling well so up I went on the prednisone. Feel good again. I will stay here for a few weeks and give it another try. My body needs the prednisone still so I will be patient. Don't feel down and keep trying.