Hi My Fellow PMR Warriors,
How are you doing? Is it a good day or week for you?
I am trying to taper a bit, so I have been stiff of late. But today, I am feeling pretty good!
I am crossing my fingers that this taper actually works as I have been "stuck" around 5 mg of Pred (20 mg Hydrocortisone) for 7 months! If it works, I will fill you in soon on my "latest" method that I am trying to kick steroids to the curb!!
Today, I have an important message for many sufferers. Here it is!
9 Types of Doctors that Treat Polymyalgia Rheumatica
Is that even possible?? Read on to see what I have to say on this topic.
I know that some folks with PMR have had disappointing and frustrated dealings with their physicians regarding this condition.
How many of us have waited 6-12 months or more with high hopes to get into a PMR specialist, only to leave in tears after our doctor visit?
Are you still suffering debilitating pain? Have you had to just suffer from stiffness due to being "too young" to have Polymyalgia Rheumatica according to your doctor and therefore are denied treatment?
Do you have a physician who does not listen to your needs or seems to have little knowledge about the treatment and course of PMR?
If you have answered yes to any of these frustrating questions or experiences, you are not alone! All too commonly, these disheartening scenarios are playing out over and over again throughout the PMR community.
Perhaps you have found a great physician that listens and understands you. Congratulations, and hang on tightly, my Poly friend, and hope they do not retire or get transferred.
For those of you just starting this journey or are still struggling to find a compassionate and knowledgeable doctor, I am here today to tell you that there is hope of finding a provider who will successfully get you through PMR.
However, in order to locate a physician who will meet your needs, you may need to look outside the conventional healthcare box.
A provider who treats this often overlooked and misunderstood disease may not be a rheumatologist.
The funny thing is that there is not a medical specialty that deals exclusively with autoimmune conditions, like PMR.
With over 100 autoimmune diseases (and increasing) to pick from, you would think that our current healthcare system would have a medical specialty for this unique area. Like a cardiologist or pediatrician, we could call this new type of physician an auto-immunologist.
Another oddity that I noticed regarding PMR and doctors is that Immunologists do not typically treat many autoimmune diseases. Although they are trained to work with immune conditions, they typically only see patients with asthma and allergies. An Immunologist is quick to refer most patients with autoimmune symptoms to a rheumatologist!
It is a sad state of affairs to think that although 1 in 15 people suffer from some type of autoimmune condition (I have seen this statistic even higher) that most physicians may just receive a lecture or 2 in their training on this crucial topic.
There is something wrong with this picture, and I sure hope that there is change on the horizon in this area of medicine.
So, who can you turn to to treat your condition?
Some physicians and practitioners that treat Polymyalgia Rheumatica are as follows:
- Primary Care (PCP) - Many folks prefer their primary care doctor to their specialist for their treatment of PMR. As in all cases, some PCPs are better or more knowledgeable than others, so don't be afraid to shop around.
- Rheumatologist- Rheumatologists are the main providers that typically treat patients with PMR. But many times, it is super hard to get a timely appointment. I had to call around and take a video appointment to get into a Rheumy within a month. Otherwise, it would have been 3 months for an unknown Rheumy and over a year for one recommended to me. Now almost 2 years into my PMR life, I will finally meet my rheumatologist in person at my next appointment. Covid has not helped in this issue. However, I was glad to get an appointment however I could.
- Endocrinologist- Endocrinologists also deal with autoimmune conditions. However, those they treat are typically not ones such as PMR and RA. As with many of us, I happen to have other autoimmune disorders along with my PMR. I treat with my endo for these other conditions, but I have noticed that she is highly knowledgeable about my PMR too. At my appointments with my endo and rheumy, they both were talking about my PMR and treatment. This overlap eventually led to my endo pretty much taking over my care of all of my autoimmune conditions.
- Orthopedic- I have seen many comments from people stating that an orthopedic physician caught their PMR and diagnosed it correctly. Orthopedic doctors typically do not treat PMR, but perhaps you can get them to diagnose it and prescribe steroids while you are waiting for an appointment with a specialist who will treat it.
- Integrative Health (Holistic or Functional)- In my opinion, integrative health providers are the closest to what I would consider the perfect mixture of a medical doctor and holistic practitioner who knows how to treat PMR completely. How many of you have a rheumy or PCP who dismisses the importance of diet or regular blood tests to monitor your progress? I am one that feels that diet can make a positive impact on how I feel with my stiffness and discomfort and all over health. NONE of my doctors (except now my integrative provider) would even enter into a conversation about nutrition or complementary therapeutics to help me feel better. A good integrative practitioner will most likely be open to all kinds of alternative methods and discussions about them.
Just be aware that insurance often does not pay for appointments with this type of specialist (which is a shame since they are real doctors!). If you are looking for a place to start, I was told by the director of the Cleveland Clinic for Functional Medicine that they do accept insurance.
6. Nurse Practitioner- I am including Nurse Practitioners on this list, although they are not specialty providers per se. Although NPs can specialize in all types of health areas, that is not my point. Nurse practitioners are known for treating patients more holistically than many medical doctors and may be an alternative to try in whatever practice you currently go to. Ask for the nurse practitioner in your practice for your next appointment if you are not pleased with your current doctor. You may be pleasantly surprised that this type of provider is more willing to listen to your concerns and incorporate complementary treatment into your treatment plan.
- Vascular- According to NIH, "There is some evidence to suggest that, like other inflammatory rheumatic disorders, PMR may be linked to an increased risk of vascular disease". The Vasculitis Foundation lists PMR as one of the conditions that they treat. Vascular surgeons do treat PMR but are especially involved if you have Giant Cell Arteritis along with your PMR.
- Telemed- I know this is not a specialty doctor that I am listing here, but it is well worth mentioning on this list. If you are having trouble finding or getting an appointment with someone who will treat your PMR, don't settle for one that is not helping you.
Go to the net and google telemed doctor & Polymyalgia Rheumatica.
Or google one of these specialists that I mention here & "telemed". You should come up with an extensive list of virtual doctors to choose from.
Some telehealth practices accept insurance while others do not. You can check that out. Some insurances want you to stay in your state for virtual medicine, and others do not care. The virtual provider or their website should give you more information on this topic.
- Internists- Internists are doctors who deal with chronic, complex, and multiple ongoing conditions. We certainly fit into this category. This type of specialist should be able to handle treating someone with PMR. If they try to pawn you off on a rheumatologist that you are not happy with, see if they will work with you. Most should be glad to give it a try.
Also, an ophthalmologist is very attuned to the condition. They may not be your main physician in this journey but are certainly a great resource. On this note, please schedule regular appointments with an ophthalmologist (different than an optometrist) to monitor for one of the many eye complications related to this disease and steroid use.
You can also check around and see if you can find an Immunologist who treats PMR since this actually is their area of expertise.
My point in this article is that you should not settle if you are unhappy with your current provider or lack thereof. Keep looking, and hopefully, you can find someone who can help you.
Have a good week everyone!