1. < Polymyalgia Rheumatica (PMR)

Are specialists necessary?

Posted by Howdy! @kereno, Feb 26 7:04pm

Wondering: Is it vital to see specialists (rheumatologists and ophthalmologists, etc)? Am I flirting with danger by staying with my PCP (an internist) and optometrist? I have not had the best of luck with specialists in the past and often there’s a long wait to see them. I am in a new community now and would like to keep things simple. Sticking with the internist and optometrist until I have reached their limits seems prudent. From what I read, we are often informing our doctors through our own experience and the anecdotal information gleaned on this site whether or not they are specialists.

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

Howdy! | @kereno | 4 days ago
In reply to @dadcue "I'm just wondering what you would consider to be "useful medical advice." The standard of care..." + (show)
@dadcue

I'm just wondering what you would consider to be "useful medical advice." The standard of care for PMR is prednisone and wait for PMR to burn itself out. After remission is achieved, a slow taper off Prednisone is the standard advice. My rheumatologist "encouraged" me to taper off prednisone as soon as possible to minimize the risk of long term side effects.

People probably don't need more medical advice than this except when people are unable to taper off prednisone in a timely fashion. All the side effects from my long term prednisone use were handled by my primary care doctor. My doctors deferred to an ophthalmologist for cataracts, high intraocular pressures and other problems with my eyes.

My rheumatology visits during my 12 years mostly consisted of evaluating my pain and inflammation levels and checking on how much prednisone I was taking.

I needed a ton of prednisone but I always had a prescription when I needed more. I was grateful for all the encouragement to taper off prednisone as soon as I could and 12 years was too long to be on prednisone daily. Other than trying all of the standard steroid sparing medications, there wasn't much more that could be done under the circumstances.

After some initial confusion and a personality conflict with my first rheumatologist, a second rheumatologist diagnosed me with PMR. After that I had the same rhematologist for 12 years. She had empathy for my pain and understood how difficult it was for me to taper off prednisone. I didn't expect more than that.

Jump to this post

'Useful to the individual' is how I'd define it.
I can relate to your initial confusion and a personality conflict with your first rheumatologist. Mine diagnosed me with lupus right off the bat and was upset when I asked questions, finally writing in his chart (he left open on his desk for me to see) that I was "hysterical." (I swear I was calm and sought only to learn his reasoning.) I sought a second opinion and that rheumatologist thought it acted like PMR, responded like PMR, and eventually said there was no doubt about the diagnosis. I don't recall how fast she tapered Prednisone but it apparently was too fast because I came down with the symptoms the following year. I believe I was on the drug for just 1-1/2 years. She said this may never recur, or may show up in say, 10 years--no telling. The name is really just a description of its symptoms in Latin and that little was known about it.

REPLY
1 reply
Howdy! | @kereno | 4 days ago
In reply to @jeff97 "Yes, I kept my vision. The day I was diagnosed with GCA, I went to the..." + (show)
@jeff97

Yes, I kept my vision. The day I was diagnosed with GCA, I went to the emergency room after losing the vision in my left eye for a few seconds. It was like looking at a blank gray wall. I thought that it might be a stroke. During the next 16 hours after that I lost the vision temporarily about 7 more times. The time got a little longer with each event, with the last one lasting maybe 45 seconds to a minute. What I was seeing in that eye was very strange. Some colors disappeared, and other colors became more prominent. It was a lot like an impressionist painting. I was admitted to the hospital for 3 days so that I could get an IV infusion of high dose methylprednisolone (1000 mg) each day. After that I was on 60 mg prednisone for 6 weeks, and I've been tapering the prednisone and taking weekly Actemra injections since then. I see an ophthalmologist regularly to check the health of my eyes from the GCA and prednisone. So far I haven't had any more problems.

I just googled about blindness from GCA, and it said up to 20% of people with GCA have blindness in one or both eyes. A lot of the outcome depends on seeking treatment in time to save your vision. My understanding is that once you have received high dose prednisone to treat GCA, vision loss after that is very uncommon.

Thanks for your interest.

Jump to this post

Thanks for that information. When I first got PMR it was accompanied by "visual migraines" that showed up as rainbow-colored halos around objects.
I'm so glad you sought treatment in time to mitigate blindness!

REPLY
DadCue | @dadcue | 4 days ago
In reply to @jeff97 "Yes, I kept my vision. The day I was diagnosed with GCA, I went to the..." + (show)
@jeff97

Yes, I kept my vision. The day I was diagnosed with GCA, I went to the emergency room after losing the vision in my left eye for a few seconds. It was like looking at a blank gray wall. I thought that it might be a stroke. During the next 16 hours after that I lost the vision temporarily about 7 more times. The time got a little longer with each event, with the last one lasting maybe 45 seconds to a minute. What I was seeing in that eye was very strange. Some colors disappeared, and other colors became more prominent. It was a lot like an impressionist painting. I was admitted to the hospital for 3 days so that I could get an IV infusion of high dose methylprednisolone (1000 mg) each day. After that I was on 60 mg prednisone for 6 weeks, and I've been tapering the prednisone and taking weekly Actemra injections since then. I see an ophthalmologist regularly to check the health of my eyes from the GCA and prednisone. So far I haven't had any more problems.

I just googled about blindness from GCA, and it said up to 20% of people with GCA have blindness in one or both eyes. A lot of the outcome depends on seeking treatment in time to save your vision. My understanding is that once you have received high dose prednisone to treat GCA, vision loss after that is very uncommon.

Thanks for your interest.

Jump to this post

I'm glad you didn't lose your vision to GCA.

I had a similar threat of vision loss because of another autoimmune disorder called uveitis. There are varying levels of severity for uveitis. My ophthalmologist said I have an "aggressive" type of uveitis called panuveitis. There is no "cure" for my type of uveitis as is true for most autoimmune conditions.
https://www.mayoclinic.org/diseases-conditions/uveitis/symptoms-causes/syc-20378734
------------------
I've had 30+ flares of uveitis in about 30 years. Every time I reported another flare of uveitis, it was treated like an emergency. Fortunately, I never needed to go to the emergency room. There's a large ophthalmology department at the nearby University Hospital and someone was always on call. I was given a direct number to call for any "suspected" flares of uveitis. I had a couple of after hour flares of uveitis that I reported. It didn't seem to matter ... the question I was asked when I called in to report a flare of uveitis was, " How soon could I get in to be seen." A starting dose of 60 mg of prednisone was my standard treatment for every uveitis flare.

I never asked when I could be seen ... they asked me ... How soon I could get there to be seen! It didn't matter if I was unsure or not. Usually I knew but even when I said "maybe" it was a flare of uveitis they still wanted to see me right away. I still have my vision so I am appreciative of specialists. I even thought my vision was a "lost cause" on several occasions. It was somewhat reassuring when the specialist said "not yet" because there were other things they could try.

Actemra seems to prevent my uveitis flares but the uveitis specialist says Humira is the optimal treatment for uveitis.
https://pmc.ncbi.nlm.nih.gov/articles/PMC8477319/
---------------------
I'm very appreciative of all the specialists who have helped me!

REPLY
Howdy! | @kereno | 4 days ago

Wow! Great words from experience. Is uveitus the same as Giant Cell Arteritis or…?

REPLY
1 reply
DadCue | @dadcue | 4 days ago
In reply to @kereno "'Useful to the individual' is how I'd define it. I can relate to your initial confusion..." + (show)
@kereno

'Useful to the individual' is how I'd define it.
I can relate to your initial confusion and a personality conflict with your first rheumatologist. Mine diagnosed me with lupus right off the bat and was upset when I asked questions, finally writing in his chart (he left open on his desk for me to see) that I was "hysterical." (I swear I was calm and sought only to learn his reasoning.) I sought a second opinion and that rheumatologist thought it acted like PMR, responded like PMR, and eventually said there was no doubt about the diagnosis. I don't recall how fast she tapered Prednisone but it apparently was too fast because I came down with the symptoms the following year. I believe I was on the drug for just 1-1/2 years. She said this may never recur, or may show up in say, 10 years--no telling. The name is really just a description of its symptoms in Latin and that little was known about it.

Jump to this post

My experience with the first rheumatologist wasn't ideal. I had a long standing diagnosis of reactive arthritis for 20 years. I self medicated with prednisone prescribed for uveitis to treat flares of reactive arthritis.

I wasn't exactly compliant with my instructions but my first rheumatologist didn't need to label me "noncompliant." I was just used to doing things my way. I was the one who told my first rheumatologist I was diagnosed with reactive arthritis and I "just took prednisone for flares." My first rheumatologist said reactive arthritis wasn't treated with prednisone. That was news to me because that was how I treated myself for 20 years.

I don't know who said what to who but a primary care doctor said at first he thought I was a "crazy person" that wanted prednisone. He said he "suspected" I might have PMR and he should NOT have listened to the first rheumatologist.

After PMR was diagnosed by the second rheumatolgist, my primary care doctor apologized to me. He suspected PMR but the first rheumatologist said it wasn't. I didn't know anything about PMR at the time but I knew I needed prednisone. Until things got sorted out, prednisone was "restricted" so I wasn't a happy camper. I didn't care about the PMR diagnosis as long as someone prescribed prednisone to me.

My first 6 months of PMR was mostly a big misunderstanding. I was confused as much as anyone else. I didn't help the situation until the second rheumatologist asked me if the pain was anything like the pain of reactive arthritis. I said NO ... the pain was completely different than any pain that I attributed to reactive arthritis.

The second rheumatologist insisted I had PMR in addition to reactive arthritis. I had a hard time accepting that I had both.

After 12 years, my diagnosis evolved primarily to PMR with a "history of" reactive arthritis along with a "full range" of other rheumatology conditions ... not to mention adrenal insufficiency and steroid dependence. The latter is no longer true anymore. When Actemra was used to treat PMR, I was able to taper off prednisone.

REPLY
DadCue | @dadcue | 4 days ago
In reply to @kereno "Wow! Great words from experience. Is uveitus the same as Giant Cell Arteritis or…?" + (show)
@kereno

Wow! Great words from experience. Is uveitus the same as Giant Cell Arteritis or…?

Jump to this post

No ... uveitis is not the same as GCA. The visual disturbances and potential for vision loss are the same. The symptoms might be similar but an eye specialist that can do a dilated eye exam would be needed to tell what was causing the vision changes.

I don't have GCA but my rheumatologist still asks me about symptoms of GCA since I have PMR. I have every symptom of GCA but my ophthalmologist always reassures me that there is no evidence of GCA that can be seen inside my eye. Plenty of problems related to Prednisone side effects but no evidence of GCA ... my ocular nerve looks healthy at least.

This link speaks to the need for specialists when Prednisone is use as a treatment for any condition. I don't think PMR needs to be diagnosed by a specialist but treatment with Prednisone may require many specialists.
https://www.mayoclinic.org/steroids/art-20045692
--------------
They say every cell in the body has cortisol receptors so Prednisone has far reaching effects on the body. The effects are both positive and negative so we take the good with the bad ... I suppose.

Another link that speaks to the use of steroids for ocular health.
https://www.aao.org/eyenet/article/savvy-steroid-use
-------------------
GCA is a vascular problem but it is the ocular nerve that gets damaged because of a lack of blood supply to the ocular nerve.

"Giant Cell Arteritis (GCA) can significantly affect the ocular nerve, primarily by causing inflammation in the arteries that supply blood to the optic nerve, leading to a condition called "arteritic anterior ischemic optic neuropathy (AAION)," which can result in sudden and severe vision loss in one eye due to reduced blood flow to the optic nerve."
-----------------------
It is another layer of specialist but sometimes a neuro-ophthalmologist is a medical specialist who plays a key role in diagnosing and managing Giant Cell Arteritis (GCA), particularly when a patient experiences vision loss or other visual disturbances related to the condition; they are experts in identifying and treating GCA by monitoring visual function through detailed eye exams and coordinating with other specialists like rheumatologists to manage the overall disease process.

REPLY
1 reply
Howdy! | @kereno | 4 days ago
In reply to @dadcue "No ... uveitis is not the same as GCA. The visual disturbances and potential for vision..." + (show)
@dadcue

No ... uveitis is not the same as GCA. The visual disturbances and potential for vision loss are the same. The symptoms might be similar but an eye specialist that can do a dilated eye exam would be needed to tell what was causing the vision changes.

I don't have GCA but my rheumatologist still asks me about symptoms of GCA since I have PMR. I have every symptom of GCA but my ophthalmologist always reassures me that there is no evidence of GCA that can be seen inside my eye. Plenty of problems related to Prednisone side effects but no evidence of GCA ... my ocular nerve looks healthy at least.

This link speaks to the need for specialists when Prednisone is use as a treatment for any condition. I don't think PMR needs to be diagnosed by a specialist but treatment with Prednisone may require many specialists.
https://www.mayoclinic.org/steroids/art-20045692
--------------
They say every cell in the body has cortisol receptors so Prednisone has far reaching effects on the body. The effects are both positive and negative so we take the good with the bad ... I suppose.

Another link that speaks to the use of steroids for ocular health.
https://www.aao.org/eyenet/article/savvy-steroid-use
-------------------
GCA is a vascular problem but it is the ocular nerve that gets damaged because of a lack of blood supply to the ocular nerve.

"Giant Cell Arteritis (GCA) can significantly affect the ocular nerve, primarily by causing inflammation in the arteries that supply blood to the optic nerve, leading to a condition called "arteritic anterior ischemic optic neuropathy (AAION)," which can result in sudden and severe vision loss in one eye due to reduced blood flow to the optic nerve."
-----------------------
It is another layer of specialist but sometimes a neuro-ophthalmologist is a medical specialist who plays a key role in diagnosing and managing Giant Cell Arteritis (GCA), particularly when a patient experiences vision loss or other visual disturbances related to the condition; they are experts in identifying and treating GCA by monitoring visual function through detailed eye exams and coordinating with other specialists like rheumatologists to manage the overall disease process.

Jump to this post

Super helpful—thank you!

REPLY
View MoreView Less
Please sign in or register to post a reply.