Have you been able to taper prednisone with long lasting success?

I can tell you all about reactive arthritis! I was diagnosed with that 30 years ago. Symptoms of reactive arthritis. are very similar to PMR. As a matter of fact, I was begging people for prednisone thinking I was having a flare of reactive arthritis at the time PMR was diagnosed.

When PMR was diagnosed, the first rheumatologist that evaluated me said reactive arthritis wasn't treated with prednisone. My first rheumatologist labeled me as "noncompliant" because a GP was listening to me and was prescribing prednisone to me.

I don't know what happened behind the scenes but a different rheumatologist saw me at one of my follow-up visits. I don't know where the first rheumatologist went because I didn't request a new rheumatologist.

In any case, the second rheumatologist asked if I would come back to see her when I wasn't taking prednisone. She didn't say how long I should be off prednisone so I was off for 2 days before seeing her at the next visit. I think it must have been obvious to her because she took about 5 minutes to say I had PMR. My first question was, "What happened to reactive arthritis?" She said it was unfortunate to have both PMR and reactive arthritis!

I went back to the GP who was giving me the prednisone. He apologized about the experience I had with the first rheumatologist. He said at first he thought I was a crazy person who wanted prednisone but then he told me that he suspected that I had PMR.

It is very interesting about sulfasalazine. That was the first medication that was used on me to treat reactive arthritis. However, an ophthalmologist was prescribing massive doses of prednisone to treat the flares of uveitis which were associated with reactive arthritis. Prednisone worked much better to relieve the body pain so I quit taking sulfasalazine a long time ago.

The second rheumatologist who diagnosed PMR asked me once about sulfasalazine. She said she was reviewing some of original medical records. She said it was documented in my very old paper medical records that I had a "good response" to sulfasalazine. She thought maybe it would help me to get off prednisone. I told her that wasn't what I recalled about sulfasalazine. I didn't tell her I was self medicating with prednisone when I had the "good response" to sulfasalazine.

@dadcue, Just wanted to say this TOTALLY resonated with me: "He said at first he thought I was a crazy person who wanted prednisone but then he told me that he suspected that I had PMR."

I'm pleasantly surprised your GP even admitted that much to you after you finally got on the right path.

Sadly, I'm used to providers thinking I'm crazy. But when my dad's PMR first showed up, we eventually self-diagnosed it--we knew already he had a strong family history of autoimmune conditions, and his sister is an internist who also believed it was PMR (but she lives out of state). Yet when we took him to his PCP's immediate care clinic to see one of the MDs on call to review his labs (I had to do the communication because my dad was in no shape to be able to explain)--it was me, and both of my parents. And I honestly wanted to melt into the floor because of the way the person at the registration desk, and then the nurse they sent out to talk to us looked at us like we were hysterics freaking out about lab values. Other than the obvious-to-us PMR symptoms, my dad at that point had an ESR of 120. Even if it wasn't PMR, we knew something needed to be done. The MD on call (the whole reason we went there) refused to see my dad, and they told us if we really believed it was that serious, that we should go to the ER.

I felt so bad for my parents because we're an immigrant family, they don't love seeking out healthcare (but then, who does?) and I had encouraged them to go, and I drove them to the clinic, only for all of us to end up feeling humiliated.

His PCP never apologized, but after two more phone calls with his nurse and my mom asking the nurse to ask the doctor to please look up PMR, then we got the RX for prednisone and I immediately started looking for a rheumatologist for him. Things are way better with a good rheumatologist; thankfully we found a good one on the first try, phew.

@dadcue, Just wanted to say this TOTALLY resonated with me: "He said at first he thought I was a crazy person who wanted prednisone but then he told me that he suspected that I had PMR."

I'm pleasantly surprised your GP even admitted that much to you after you finally got on the right path.

Sadly, I'm used to providers thinking I'm crazy. But when my dad's PMR first showed up, we eventually self-diagnosed it--we knew already he had a strong family history of autoimmune conditions, and his sister is an internist who also believed it was PMR (but she lives out of state). Yet when we took him to his PCP's immediate care clinic to see one of the MDs on call to review his labs (I had to do the communication because my dad was in no shape to be able to explain)--it was me, and both of my parents. And I honestly wanted to melt into the floor because of the way the person at the registration desk, and then the nurse they sent out to talk to us looked at us like we were hysterics freaking out about lab values. Other than the obvious-to-us PMR symptoms, my dad at that point had an ESR of 120. Even if it wasn't PMR, we knew something needed to be done. The MD on call (the whole reason we went there) refused to see my dad, and they told us if we really believed it was that serious, that we should go to the ER.

I felt so bad for my parents because we're an immigrant family, they don't love seeking out healthcare (but then, who does?) and I had encouraged them to go, and I drove them to the clinic, only for all of us to end up feeling humiliated.

His PCP never apologized, but after two more phone calls with his nurse and my mom asking the nurse to ask the doctor to please look up PMR, then we got the RX for prednisone and I immediately started looking for a rheumatologist for him. Things are way better with a good rheumatologist; thankfully we found a good one on the first try, phew.

I completely understand how you feel.

When reactive arthritis was diagnosed 30 years ago, I didn't get an immediate diagnosis. I made a couple of doctor visits first. The back pain was brushed off as "normal pain" and a new mattress was the first recommendation along with taking ibuprofen. I knew it wasn't the mattress but I took ibuprofen.

The strange thing about the back pain was that it got worse at night after I fell asleep. The pain would wake me up and I needed to stay awake for the pain to improve. I didn't have too much pain during the day at my doctor visit.

I made a second doctor appointment and claimed my bedroom had become a torture chamber. I don't think the doctor took me seriously and only recommended more ibuprofen which I think caused some serious diarrhea.

My third visit was to an emergency room. I thought I had a stroke or something after I retched my guts up for an hour. There was nothing at all in my stomach so I don't know what the retching was all about.

After I retched, my left eye was beet red and my right eye was "fixed and dilated." I thought surely I had a stroke. It turned out that my right pupil was responding normally to retching but my left eye didn't dilate as it should have. The ER doctor thought it was strange that my left pupil wouldn't dilate at all.

I told the emergency room doctor how crazy it all was. I was worried about a stroke more than anything. The doctor downplayed the stroke idea because I was too coherent. He did note how red my left eye was. He got some labs which proved that I was seriously dehydrated. They stabilized me in the emergency room with IV fluids but I wasn't hospitalized. That made me wonder what it took to get admitted to a hospital. I thought being hospitalized was warranted.

The emergency room doctor thought I would survive overnight. He made an urgent appointment to an internal medicine doctor for 8 a.m. in the morning. It was already after midnight so I didn't have to wait long. I considered camping out in the emergency room because I wasn't so sure that I would survive until morning.

I was sent home with narcotics and Lomotil to stop the diarrhea. I didn't sleep that night because of excruciating back pain. My red eye got worse overnight. I drove myself back to the hospital but that was dangerous because the drive was heading east at sunrise and my left eye was extremely photophobic and very painful. I drove with only one eye open.

The internal medicine doctor prioritized my eye first and sent me to an ophthalmologist who diagnosed uveitis.

I think it was the uveitis and being HLA-B27 positive that gave me credibility, with the medical doctors. Otherwise, I doubt they would have believed me. I can't blame them for that because I had a hard time believing it myself. If someone had an identical experience as I did and told me about it --- I wouldn't believe it either.

I'm a self-deprecating sort of person. I have good relationships with most of my health care providers. However, there have been a few doctors who I have a hard time with being forgiving.

Whew! What a terrible experience. Apparently, there is a lot of ignorance among PCPs and other non-specialists about PMR. It’s shameful that you were treated so poorly and that the PCP never apologized. I’m lucky that my PCP went after it like a tiger when I first had symptoms, eliminated other things, diagnosed it, and sent me to a rheumatologist.

3+ years here on Prednisone. I was diagnosed in February 2020, started at 20 mgs (instant relief), followed by several unsuccessful attempts to get off, and every time the pain returns. A couple weeks ago I went cold turkey after five months at .5 mg, then .5 every other day, and as soon as I went off, the pain sneaks back in my shoulders and legs. It is very frustrating, but if I have to take a low dose for the rest of my life, I'll do it for the quality of life. I am currently back at 1 mg, fighting a bit of pain in the mornings until around 11, and I see my rheumatologist next week. It is amazing to me how such a low dose makes a difference.

@amak23 will you discuss going on one of the Biologicals?
This is the first recommendation in this recent manuscript. I scan through the authors to see who are the players in the this field. I wonder how different will be the policies in US vs Europe.

Recommendation 1
The treatment target of GCA and PMR should be remission; remission is the absence of clinical symptoms and systemic inflammation.

https://bmj.altmetric.com/details/142886735/news this link shows which news outlets picked up this article.

"Treat-to-target recommendations in giant cell arteritis and polymyalgia rheumatica
first author : Christian Dejaco"
WHAT IS ALREADY KNOWN ON THIS TOPIC
There is large heterogeneity in clinical practice related to treatment strategies in giant cell arteritis (GCA) and polymyalgia rheumatica (PMR).

The concept of treat-to-target (T2T) is widely adopted in rheumatology, but has yet not been defined for these diseases.

WHAT THIS STUDY ADDS
Here, we present consensus-based recommendations on T2T in GCA and PMR developed by an international, multidisciplinary task force.

Treatment targets, as well as strategies to assess, achieve and maintain these targets, have been provided.

HOW THIS STUDY MIGHT AFFECT RESEARCH, PRACTICE OR POLICY
These recommendations advise clinicians how to effectively implement a T2T approach for GCA and PMR in clinical practice.

Gaps in current knowledge have been identified and a research agenda frames the needs to be addressed by future studies in the field.

Wow, a new mattress; that was the “plan of care”? Cringe.

I feel like we chronic pain warriors could write a book (or maybe create a discussion here) of all the crazy things people (including medical professionals) have recommended for pain. So far, my two most ridiculous things from professionals have been: “Try not to think about it.” And: “Maybe a foot massage and pedicure would help.” Those were both recommendations from neurologist at one of the “top 10 ranked programs in neurology” in the nation as they like to say, in reference to my small fiber neuropathy.

@amak23 will you discuss going on one of the Biologicals?
This is the first recommendation in this recent manuscript. I scan through the authors to see who are the players in the this field. I wonder how different will be the policies in US vs Europe.

Recommendation 1
The treatment target of GCA and PMR should be remission; remission is the absence of clinical symptoms and systemic inflammation.

https://bmj.altmetric.com/details/142886735/news this link shows which news outlets picked up this article.

"Treat-to-target recommendations in giant cell arteritis and polymyalgia rheumatica
first author : Christian Dejaco"
WHAT IS ALREADY KNOWN ON THIS TOPIC
There is large heterogeneity in clinical practice related to treatment strategies in giant cell arteritis (GCA) and polymyalgia rheumatica (PMR).

The concept of treat-to-target (T2T) is widely adopted in rheumatology, but has yet not been defined for these diseases.

WHAT THIS STUDY ADDS
Here, we present consensus-based recommendations on T2T in GCA and PMR developed by an international, multidisciplinary task force.

Treatment targets, as well as strategies to assess, achieve and maintain these targets, have been provided.

HOW THIS STUDY MIGHT AFFECT RESEARCH, PRACTICE OR POLICY
These recommendations advise clinicians how to effectively implement a T2T approach for GCA and PMR in clinical practice.

Gaps in current knowledge have been identified and a research agenda frames the needs to be addressed by future studies in the field.