What justifies an increase in prednisone?

Thank you nancy53.
I have been tapering at a faster rate per my dr. Got to 7.5 and then went to 6. It was the first more notable level at 6. I stayed there longer than my dr wanted and didn’t start 5 till Sunday. I just didn’t feel comfortable till then. Saw the dr yesterday figuring I was where she wanted me to be even though 3 weeks later. I just can’t get why the sudden shift to l0? I should have pushed more at the time but I was so caught off guard. I need more clarification. I have reached out but so far no response. I am troubled with this decision and it sure doesn’t do well for my anxiety. Also just being 4 days into this taper, my body is in that notice the change phase. This lack of peace doesn’t help.

I would have one other comment in that your Dr didnt become a Rheumatologist and not have some or considerable knowledge about steroids and there effect on the body. My PA that I see in the general practice understands steroids. She just didnt feel comfortable diagnosing me with PMR without a Rheumatologist. We also do not know what you have been going through or how your treated. Like what other conditions you might have. All these can play an important decision in your treatment. Probably her giving you her reasoning and you being educated on your end is how you reach a treatment. As Dadcue said he had free reign to treat himself. I had free reign. My Mayo Rhumy knew that I understood the seriousness of steroids. I requested dexamethasone instead of prednisone but he agreed because he knew I had an understanding of the drug. I would say I took advantage of stock piling as many as I could for just in case. I would fill the 10mg prescription. I filled everything until the prescription ran out. I dont know if I will ever need them but I dont have to beg to start out.

I am dealing with a rheumatologist Dr. She was who I was referred to
7 1/2 months ago by my NP.

That's a faster than usual taper down under 10mg with larger drops than usual, with the rule of thumb being to taper by 10% of the dose at a time under 10mg. A 1.5mg drop from 7.5mg to 6mg is a 20% dose drop, so it's no wonder you had some stronger pain after doing it. And your last reduction from 6mg to 5mg is another 20% drop.

Did your rheumatologist give you a guide to your schedule of reductions under 10mg? It seems to be different in the US, but in Australia I was given a printed reduction schedule to reduce by 1mg every 4 - 8 weeks under 10mg, depending on how I handled the reduction. I reduced by .5mg every 3wks for a 1mg reduction every 6wks, which was mid-range in the reduction schedule. (After a flare at 6mg I'm now reducing using the longer range of 1mg every 8wks - .5mg every 4wks - but that's another story.)

I would be prepared with some questions. I understand todays Dr visits are about 15min and about half that time is explaining to her PA. I generally find women Dr's are not quite so stuck on their opinion and will consider your feedback. Not all but generally. I will say that at Mayo they spend considerable time understanding your symptoms and testing for them. I had a male Dr that was very pleasant and made sure that we understood each other.

I never get anything in writing. My instructions are given at every 6 week visit. I don’t get much help in between. I’ve found more help in this forum group. It feels great to not be alone since I personally know no one with PMR.

I’ve been on Pred for 8 years, can’t seem to go below 4 mls without a flare. My Rheumy said below 5 was the magic number for long term but now says a biologic like Kevzara would be preferable to Pred. The black box warnings on the biologics seems worse than Pred to me so I haven’t decided. A 5 ml increase without a severe flare is nuts. Ask for your prescription to be 10 ml in 1 ml pills so you can adjust yourself because you know your pain better than anyone.

My dr has told me she would like me to use methotrexate or kevzara as well. I am very hesitant on going that route as well. She had dropped the idea back in May (which relieved me from the anxiety of a decision) but now has brought it back. Very uncertain of what I should do.

I totally understand, I actually took one injection of Kevzara and it gave me fever and flu like symptoms, it was then I started reading up, I have family history of cancer and had skin cancer myself, I really don’t know the best direction to go but for now I’m staying with Pred. It’s a no win situation. I’m 63 years old by the way.

Kevzara and Actemra are new biologics that insurance may cover. Usually if you have tried methotrexate first. That might be old information. The biologics inhibit the IL-6 marker that they have determined to be active in PMR. Methotrexate is older cheaper RA drug. None of these drugs work on helping to restart your cortisol. They simply try to keep the inflammation down or a PMR restart while you are tapering. They can take up to a couple of months to start working. They are usually prescribed with steroids as opposed to either or. Once you are off prednisone you can generally stop taking Kevzara. About 5 ml is your daily requirement of cortisol that is being supplied by prednisone. After 8 years you are going to have a very difficult time to taper below. You may also need an endocrinologist on your team. Adrenal insufficiency is going to be your challenge. Your flares are going to be from AI more than PMR. They can restart PMR. So the Kevzara may not help. Many it does not. If you look at the black box warnings on prednisone those are not any better and you have taken for 8 years. I would say some risk is worth it. Dadcue on this site was has been on and off steroids most of his life. He used Actemra and was finally able to stop. Your risk will be they move you to hydrocortisone as a maintenance dose the rest of your life. Prednisone is not your friend. More like an invited house guest that wont leave.