14 Important Facts About PMR That Your Doctor May Not Have Told You
As we know, some doctors are more familiar with PMR than others. And even a well-informed physician may not feel the need to tell you some important information about PMR that may be essential to your well-being.
Pretty much ALL doctors focus on your pain and stiffness and how it relates to your medication response and dosage. However, it is rarer to have them discuss lifestyle changes, supplements and non-medication measures to assist you in your PMR struggles.
Naturopathic and integrative physicians are more holistic and look beyond the traditional western medication “as the solution” and may be the exception to the premise of this article.
So today, I am hoping to enlighten you all about PMR and save you some possible heartache and issues by filling you in on vital information about Polymyalgia Rheumatica.
Important Points that Your Doctor May Not Have Told You About PMR are:
- Long-term Prednisone has many side effects beyond the obvious one of weight gain. My doctor never mentioned any side effects of long-term steroid use.
As a nurse, I was instantly turned off and understandably concerned about all of the side effects that can happen with this medication. My first rheumatologist had no time or patience for my obvious reluctance and questions associated with it. The 2nd doctor that I asked just told me that if I don’t go on steroids that I could go blind (I’m not 100% sure that was true unless I developed eye symptoms). Well, that scared me and pretty much settled my internal debate about whether or not to take the prescribed Prednisone) and I decided to take the steroid.
Just for the record, here are some of the potential side effects of long-term steroid use:
- Weight gain
- Fat deposits on various parts of the body including the dreaded “buffalo hump” and “moon face”
- Eye Complications such as temporal arteritis otherwise called GCA (see BLOG article on GCA), steroid-induced cataracts and glaucoma
- Prednisone induced diabetes
- Stomach discomfort and erosion of the lining of the stomach
- Mood Swings
- Elevated blood pressure
- Keep moving or you will get even stiffer. Light, frequent exercise such as walking, tai chi, elliptical trainer or swimming is essential to keep the weight off, decrease stiffness and improve your mood.
- Adopt a healthy eating plan as a way of life. Many fellow PMR sufferers have had success with the Keto, Paleo, Auto-immune Protocol Diet (AIP) or Gluten-Free Diet to help keep the weight off and decrease inflammation and stiffness. See my Blog on different diets for PMR. None of my doctors seemed to care about my diet when I tried to talk to them about it, even when I told them that I may have developed Celiac Disease due to a severe adverse reaction to all wheat and glutens. I have never even seen this problem acknowledged in any post-visit notes after I mention this distressing issue at each visit. Eating a Paleo Diet after going through the AIP (elimination) diet first has helped my gut tremendously which in turn is supposed to help with overall inflammation and the auto-immune response. I am trying to limit my carbs and sugar which may help to ward off steroid-induced diabetes.
- See an ophthalmologist at the start of your treatment and diagnosis of PMR (and for sure if you have GCA!). An optometrist is not sufficient. An ophthalmologist is trained to look more thoroughly at eye disease and trends from Prednisone and our condition.
I was seen by an optometrist at the very start of my course of Prednisone and I received a clean bill of health. I did however book an appointment with an ophthalmologist and was seen 2 months after I initiated Prednisone treatment. My ophthalmologist was so much more informative and thorough in her exam.
I was astonished that she found that I had developed steroid cataracts and steroid-induced glaucoma already! I only went to this specialist to have her on hand in case I developed GCA. I did not know anything about the problems that steroids would cause in my eyes. Nobody told me to go see an ophthalmologist but I am so glad now that I did. Glaucoma is painless and I would never have known that I had it! I am now followed regularly by my ophthalmologist and she is part of my healthcare “team” for my PMR.
- You will be immunocompromised while on higher levels of Prednisone. My doctor never mentioned this important information even though I was diagnosed during the Covid pandemic and I was a nurse working with Covid patients. Fortunately, I knew this fact and knew to be very careful and cautious around sick people.
- You may need to take magnesium supplements. Low magnesium can cause symptoms very similar to PMR. In addition, Prednisone can cause magnesium depletion in your system. Low magnesium leads to severe muscle cramps and spasms. See my Blog about Cramps and Magnesium. Once you are on a magnesium supplement, you will need to have the level monitored to make sure you do not overdose and reach a toxic level.
- Get a Dexa scan as soon as you start Prednisone (or immediately prior). You will need a baseline scan to see how your bones are doing prior to being on long-term steroids. This will also let the Dr. know if they need to start you on medication or supplements to preserve your bones.
- Talk to your physician about Calcium and Vitamin D supplements. Once again, these are for bone health. Have regular blood levels to monitor that you are at an effective, yet safe dose.
- Prednisone can cause steroid-induced Diabetes. This would be a good conversation to talk to your doctor about.
- Get regular bloodwork. Most physicians order bloodwork every 3 months. Since I see my PCP, endocrinologist (I have Hashimoto’s Thyroiditis also) and a rheumatologist, my bloodwork is kind of spread out but I still make sure that I get mine done on a regular basis. I have to remind some of my doctors at times what bloodwork needs to be drawn.
But essentially here is a basic list of what should be followed regularly for good health.
- Calcium (for bone health)
- Vitamin D (bone health and to see if you need supplements)
- Sed Rate and CRP to measure inflammation
- Glucose or blood sugar (to make sure you are not developing diabetes)
- Liver Function Tests (all of this medicine/supplements can be hard on your liver to process causing some strain on this organ)
- Magnesium level (to see if you need supplements to help with muscle cramps, pain and fatigue)
- PMR may go into remission after 2-5 years but it might come back at any time. For an unfortunate few, it never goes into remission. My doctor told me “Not to worry, PMR burns itself out in a year”. That is not really true and it was so disappointing to find out that it can last much longer, or never “burn out” or it can return when it feels like. I have heard of so many PMR sufferers who are devastated when their PMR returns as they were never informed that it is a good possibility that it can come back!! So sad!
- Be aware of the symptoms of GCA or Temporal Arteritis. This is a BIG ONE!! At each exam, my doctors would ask me about any headaches or eye symptoms but NEVER did they say watch out for the “XYZ” signs of a serious side condition of PMR called GCA.
GCA is a medical emergency and should be clearly explained to ALL PMR patients. (see my Blog on GCA) Once again, time and time again, I hear fellow sufferers who have NO IDEA what GCA is and what to look for or what to do if they have symptoms. This is actually medically negligent in my opinion if your doctor does not warn you about this serious condition.
- There are other modalities to help with discomfort and pain besides “more meds”. See my Blog Top 18 Strategies to Get Through PMR. Many times physicians get impatient with your slow tapering and want to add heavy-duty medications to help get you down faster. I recommend trying other modalities first, if you prefer to go a more natural route.
- Last of all, this disease is not simple or easy. Many times, physicians act like PMR is not a serious and life-altering condition. However, if they are not intimately experienced with PMR, they may not be aware of how PMR affects every aspect of our lives. A simple acknowledgment of our struggles and that life can be frustrating, difficult and disappointing along with painful, goes a long way in how we cope with PMR.
Take care, my friends. I hope that today is a good day for you :)