Newly diagnosed and confused about the goal

@grownupcf ask abt Kevzara. This blog has lots of stories. I had no side effects. Takes 30-60 days to take effect, and I did get off prednisone.

Hi everyone; I'm newly diagnosed this summer almost 77 yr old female by appt with orthopedic PA to discuss trochanter bursitis returning also describing new major aching pain on tops of both thighs, which is so much more pronounced during the night. Also my right leg is more painful than the left, and I could not Start going up steps/stairs with it anymore as it felt like it would painfully buckle under me. Does anyone else have the weakness on top of the pain??? As the articles indicate, I don't have joint pain; just pain in the large muscle groups. (My shoulder blades ... no top of should pain ...do get inflamed at times but it's the thighs that really hurt.)
Blood work: IMPORTANT TO NOTE: my SED rate and CRP level were NORMAL but my antigen/antibodies were the giveaway.
My gerontologist MD started me on 10mg prednisone to "confirm" diagnosis and it knocked back the pain within the first 2 days. But its effectiveness has been up and down ever since then; must take a minimum of 5mg daily. I don't exercise per se but am very active and it flares up if I push my activity level. I'm more concerned about the effect of numerous awakening during nights from pain, as good sleep is so important for our bodies and for our brains.
My MD indicates it can take many months to reach a satisfactory pred dose level.

I just did my first post but it was due to yours (cj762) that I felt like tossing in my 2 cents.
You asked a good question: what is the goal?
It is my understanding that long-term use of prednisone is not desirable, so the goal is to reduce the dose to as low as possible. I think it means we each weigh the benefits of the prednisone against its negative side effects (bone loss, increased cataracts, etc.). Being in chronic pain is not good for us either. So it seems to be a choice, to reach a level of comfort that is tolerable and doesn't interfere with our daily activities. Knocking out the pain completely may be wonderful, but we must not forget that there is a cost to using prednisone . Each of us will need to struggle with this conundrum.

@bindie I would modify the definition of the goal to be remaining pain free while reducing the prednisone to the lowest possible dosage. Prednisone is not a root cause treatment for PMR. It does not address root cause it is a symptomatic treatment. Simply said the goal is to remain pain free while you let PMR burn it's self out.
Even the steroid sparing drugs like Actemra, Tyenne and Kevzara are symptomatic drugs and do not address root cause. In reality the medical world does not know exactly what the root cause is, what they do understand is PMR causes inflammation and so they use anti-inflammatories to stop the inflammation from hanging around causing pain and possibly damage.

@jabrown0407 I would modify your definition of the goal to be to achieve the best quality of life given the competing challenges of PMR and its treatments. I don't think prednisone and the other drugs work completely for some people, so they can't be pain free. Also, based on posts to this forum, it seems that some people prefer to live with a certain amount of pain and discomfort over the side effects of prednisone and the other medications. So the goal for each person is to find the balance they prefer between PMR and its treatments.

For GCA things are much simpler. The goal is to fully control GCA so that it doesn't cause severe injury or death.

@bindie
The first goal is to become pain free or very close to it. Prednisone is usually a necessary evil to accomplish this. If 10mg doesn't do that then it's usually increased to 15mg or more. The first goal is to be pain free or very close to it. Pain can cause weakness and instability because that's one of the body's reactions to pain. When movement causes pain, your body tries to stop you from moving.

@jabrown0407 thank you.
My Rheumatologist weaned me off Prednisone soon after seeing him. I was on Prednisone for 6 months and he felt too long.
I think you are right about managing the pain until it burns itself out (burn is a good word). I have been really down if anything was helping and if I could get through without some catastrophic hit. I have been in different injections after being off Prednisone. I worry constantly because the Speciality Pharmacy and others cannot always get the medication and has not always been on schedule. Phone calls have just put me in a cycle of calling the same people over and over - Pharmacy; doctor; insurance.
Your comments have put me somewhat at ease thinking that this what I need to do. Was going to go off medication and see if it is doing any good. Blood tests show I am holding and much down from 4 months ago. Don’t know if I feel like that is the case.
We certainly need to hear some Positive things now and then and some basic facts.
Thank you

@jeff97 You can use that definition, I would not. The reason being is that the goal of prednisone and the drugs approved to treat PMR and GCA all are anti-inflammatories. This is because PMR and GCA put your body in what is medically referred to as a bi-directional inflammatory loop and what is called in computer programming as an infinite loop. It is the inflammation that is the source of pain. The goal of the medications is to reduce the inflammation and eliminate the pain. The core problem is that left uncontrolled the inflammation loop will self-generate more inflammation thus causing the person more pain.
There are multiple types of inflammation involved in the is loop. IL-6 is one of the big players. IL-6 is known to lay the groundwork for your body to generate MMP inflammation. The next step in the loop is MMP inflammation feeds the generation of TNF inflammation. Then TFN inflammation plays into the generation of IL-6 inflammation, thus closing the loop. Left unchecked it becomes a self-feeding loop creating more inflammation in your system.
This is why the goal should be to eliminate the pain and shut down the loop. The approach is about finding the lowest level of treatment needed to shut down the loop. The idea is the smaller the amount of meds needed, the higher the chance that PMR/GCA is going into remission.
I realize doctors don't tell you this, but it is clear to me if the meds they give you are strictly symptomatic anti-inflammatory treatments and they want you to taper off of them if the pain remains gone - what other explanation fits the treatment approach?
Details on the inflammatory bi-directional loop can be found by using an AI engine and/or simply entering "inflammatory bi-directional loop" in a google search.

I was diagnosed with PMR Apr 2/26. I had been in pain since Dec 26/25 every day. My Dr started me on Prednisone 25mg and I had to decrease the dose every 2 weeks by 5 mg. It took 2 days and my pain was gone!! I still continued to decrease the dose by 5 mg until I got to 10 mg. I then had to decrease my dose by 1 mg every 2 weeks until done. I did fantastic until I hit 4 mg and by 6 days my pain was back! I was told to bump up my dose to 5mg for 2 weeks but this still didn't help so then I went up to 6mg and did not see much improvement. So I had an appointment with my Rheumatoidologist who said I may not be able to decrease my dose every 2 weeks but only every month. So he bumped me back up to 7mg and I will take this dose for a month before trying to decrease again. He also said this is not unusual for patients with PMR and some people are on it for 2 years. Also, this is Chronic and will never go away for good but sometimes it does go into remission sometimes for years.

So don't be discouraged just go with it and one day the symtoms with subside and you may be okay for a short period or a long one.

@jabrown0407
That is so interesting and haven't heard that before. I will look up what you suggested.
Thanks 😊