New to PMR - Are Monthly Labs and Check-ups normal?

My rheumatologist does the same and test inflammation levels on every visit. I think that is wise and seems to be a good strategy.

My Rheumatologist had me split the dose 2mgAM 2mgPM until I had some strong “PMRsymptoms/Prednisone Withdrawal symptoms” At that point he called for a morning Cortisol test and all the usual Blood work, we concluded that it was probably withdrawal issue. This happened 11/28/22 at which point I began a slow taper from 4.5mg to my present 3.5 all taken PM usually with dinner. I decided on a very slow approach. because of scheduled Cataract surgery. I chose the very slow routine mentioned on this site and also the UK site. Sorry can’t find the link I used I will post if I find it worth a read too see if it’s a fit for you.

@janiceem, Here is the tapering plan mentioned above by @papas

-- Dead slow and nearly stop reduction plan (Tapering)
https://healthunlocked.com/pmrgcauk/posts/131189593/dead-slow-and-nearly-stop-reduction-plan

Thank you for the info. What do you mean by strong withdrawal symptoms? More pain?
I think I will change the time of my dose to dinner time, as long as it doesn't affect my sleep. If I feel any pain at all, it is usually around 5:00 AM and it is only a slight muscle soreness in my deltoid muscles--nothing that keeps me awake. As soon as I get out of bed, there is no soreness at all.

I have read on a number of sites that when you taper/withdraw from Prednisone you may experience withdrawal symptoms. As I have read they will mimic both Prednisone side effect or PMR itself. I found. it very difficult to distinguish between them. I developed neck/shoulder discomfort and Thundering heart particularly at the 5mg to 4mg level. Again another reason for me to choose a slow taper method. Those symptoms at a reduced intensity just re-started the other day as I tapered to 3.5mg. By the way I decided that my taper plan would be at .5mg rate and my Rumey said I should be able to handle a 1mg rate. As I said before I chose the slower rate because of the cataract surgery and what I feel is my sensitivity to change. good luck with your journey

That sounds a lot like my symptoms when I was tapering. For me that would be about a 1 on my pain scale of 0 to 10. When I was tapering off and it was time to taper, I would not taper to the next lower dose if I was above a 2 on my pain scale. My PMR is in remission and I still have slight muscle soreness when I get up in the morning which is around 5am to feed my kitty who never lets me sleep any later 🙂(in peace anyway). The pain most always goes away once I'm up and moving around.

The curious thing about the "dead slow nearly stop" (DSNS) tapering method is that the person who identifies as the PMR "pro" can't seem to taper off prednisolone either. The idea of being a "pro" comes from having PMR for more than 13 years and still needing prednisolone in doses in excess of 10 mg daily.

I'm all for any method of tapering that works. I tried DSNS because I was willing to try almost anything to get off prednisone. The possibility of adrenal insufficiency seemed very likely to me because I took prednisone myself for more than 12 years for PMR. The pro advised me to take prednisone for the rest of my life because there wasn't any alternative to prednisone for PMR.

When my rheumatologist wanted me to give Actemra a try, it was called nothing more than an "expensive steroid sparer" by the pro. Actemra would subject me to "serious" side effects in addition to the "manageable" side effects of prednisone. We had a spat about me doing Actemra injections while I was tapering down my prednisone dose by 1 mg per week. About all I said was that Actemra "seems to be working for me."

It was my rheumatologist who wanted me to hold at 3 mg to get my adrenal function evaluated by an endocrinologist. On 3 mg of prednisone, I was having adrenal insufficiency symptoms which were very "PMR like." The endocrinologist advised me to remain on 3 mg for an "extended period of time" but didn't say how long.

About 4 months later, my a.m. cortisol level was called "adequate" by the endocrinologist. We had a long discussion about "what could happen" if I stopped prednisone but my endocrinologist said she didn't know "what would happen." My endocrinologist and I agreed that it "might be safe" to go from 3 mg to zero in one step with the understanding that I should take prednisone again "if anything happened."

I did some trial runs of 3 mg -2 mg -1 mg -zero over 3 to 5 days before going back to 3 mg again just to see what might happen. When I finally decided to stay at zero something did happen (uveitis) and my ophthalmologist put me back on 60 mg of prednisone.

After some consultations with all my doctors, they came up with some alternative plans to get me off prednisone. Ultimately, my rheumatologist said it would be impossible to "adequately treat" everything that is going on. My rheumatologist asked me point blank what I wanted to do because he didn't want me to take prednisone for the rest of my life. The decision was left for me to decide. I chose to give Actemra a second chance because I was stuck on 15mg of prednisone again.

When Actemra was restarted, I went from 15 mg to zero in about 3 months the second time it was tried. Except for when Actemra has been stopped, I have stayed off prednisone for 3 years. I haven't had any serious side effects from Actemra. My adrenal function has improved and is no longer a concern that my endocrinologist has.

I just want to share my story. I hope DSNS works for whoever wishes to try it.

I , like John maintain a daily log of pain levels and especially where pain is and how long it lasts. Since I began Dead Slow Nearly Stop my experience has been my neck/shoulder I call it soreness because it calms to a very acceptable level after I have been up for 1-2 hours. My thundering heart is most pronounced when I wake, then all but disappears within 1-2 hours. I began the DSNS routine 12/18/22 after the AM Cortisol and blood tests. Also note I have seen my Rheumatologist once 4/22 since then all discussion has been via MGH Patient communication system. I’m OK with this because of the nature of PMR and he is very responsive to my concerns and we are on the same page with the “Listen to your body” approach” My conclusion is that there are no set standard of treatment for PMR. Reading comments on this site with guidance from my Rheumatologist keeps me focused on this journey.

Hi there-how often does your doctor order blood test to see where you’re at for inflammation?

And do you know exactly what blood test he orders?

Thank you! We have just started meds and supplements this last month. I don’t know what to expect-will my husband go to his doctor like once every three months or what for routine maintenance check ups?

Hi @ctjpmarie, After being diagnosed with PMR, my rheumatologist started me on 20 mg of prednisone and my primary care doc took over. Then I only had a blood test yearly to see how I was doing with inflammation as the prednisone pretty much handled the inflammation and pain for me. You will notice that we moved your post to an existing discussion on the same topic here so that you can read what others have shared about blood tests after being diagnosed.

-- New to PMR - Are Monthly Labs and Check-ups normal?
https://connect.mayoclinic.org/discussion/doctor-schedule/

Others have a different experience but I would expect it may depend on how well your husband does with his current treatment. Do you mind sharing what dosage your husband was started on and if the doctor discussed a plan for tapering off the meds?