Next Meeting

29 January 2018
- Satnav: TS7 8DS

Latest News

Great North Run 2016 Success for team PMR&GCA UK NE Support
Team PMR&GCAuk North East Support  all sucessfully ...more

Join Now Feddback Form

My Story

Elliott USA

Polymyalgia Rheumatica or:
How I Learned to Stop Worrying and Love the Prednisone

So, you're a fifty, sixty, seventy something and you're going along, minding your own business, when, one day, out of the blue, you wake up feeling like you spent the previous day alligator wrestling – i.e. you are so stiff and sore in your arms, shoulders, and hips you can barely move. The funny thing is that you don't remember wrestling any alligators, or performing any other unusual activities that might cause these symptoms. You don't have the flu or a cold or any other disease you can think of, you don't remember being bitten by a mosquito or finding any ticks on your body, and nothing is red or swollen. Eventually you are able to crawl out of bed and a nice hot shower makes you feel somewhat (but not entirely) human again. Within a few hours you are better, but the stiffness and pain persists – day, after day, after day.

Sound familiar?

If not, try this scenario on for size. One day you wake up and you notice that your left shoulder (or right shoulder, or left hip, or … you get the point) is a little stiff and achy. You don't remember doing anything to cause it, but, you're getting on in age and perhaps this is just the price of sliding into your "golden" years. It doesn't really bother you that much at first, and you can pretty much do everything you did before. But then as the days go by, the pain/stiffness gets worse (especially in the morning), other parts of your body start to feel the same way, and eventually you end up at the same point as the poor soul whose story I relayed above.

What do I do about this, you ask yourself, and various medications come to mind: aspirin, Tylenol (acetaminophen or paracetamol as the Brits call it), ibuprofen (Advil), naproxen (Aleve). So you try any or all of these and they are about as effective as tap water. Even worse, nobody seems to believe you because you look the same and nothing is swollen or red.

If either scenario fits you, welcome to the potentially wonderful world of Polymyalgia Rheumatica or PMR.

If you live in a country with decent national health care, or, if you live in the US and by some miracle are blessed with good health insurance, you probably decide it's time to see your doctor. If you're like me, however, you do a little on-line research first. My case fit scenario #2 to a tee. Before visiting my doctor, I performed the following Google search:

"shoulder pain" bi-lateral

Lo and behold, right there within the first 5 results was a link to a page describing Polymyalgia Rheumatica. After going through numerous pages about this syndrome, it became obvious to me that this was what I had. Unfortunately, all the medical links specific to the disease seemed to have been written by the same person in that they said exactly the same things, the most important of which was that the primary treatment for it is to take a synthetic corticosteroid, typically Prednisone. Because Prednisone cannot be acquired over the counter without a trip to Tijuana, I decided to visit my doctor, tell him what I had, and get the Prednisone fast. By now my doctor is quite used to my self diagnosing, but has this annoying habit of wanting to confirm what I already know. Amazingly enough, he had actually heard of PMR (more about the common lack of knowledge later), but insisted on ordering a bunch of blood tests and would not prescribe what I clearly needed without seeing the results – what a cad!! Two days later, after confirming what I already knew, that the results indicated the possibility of PMR, he told me to go see a rheumatologist who hopefully would get me to the promised land (Prednisone).

Luckily for me, my health insurance is quite good and there are many rheumatologists in my health plan, one of whom was able to take me the next day. After a thorough examination and discussion she prescribed Prednisone for me, but still did not believe I had PMR because a) I was too young (under 60) and b) I was male. Suffice it to say, I thoroughly disagreed with her, especially given my extensive research and general level of arrogance and omniscience.

The dose of Prednisone she prescribed was 20 mg to be taken once a day – when, she did not exactly specify. Most of my research said to take it in the morning with breakfast. Apparently, morning dosing helps to minimize the side effects of long-term Prednisone use. I have to say, it was like a miracle – within hours, all my pain and stiffness were gone. Until the next morning, that is, when I awoke to the usual pain/stiffness which did not go way until 2-3 hours after taking the Prednisone. I called the rheumatologist to see about splitting the dose to half with breakfast, half with dinner, and she was dead set against it because, in her words, "it would guarantee that the Prednisone side effects would be worse". In fact, she used the lack of complete 24 hour symptom relief as proof that I did not have PMR. I am sure you can figure out what I did in response to her advice: I split the dose and was finally able to achieve 24 hour relief of the worst of the symptoms.

As I indicated earlier, almost all of the web pages from medical sites say virtually the same thing:

  • Little or no incidence below age 50
  • More women than men suffer from this disease
  • Sufferers are of primarily Northern European descent
  • Average age of onset is 70
  • Disease is self-limiting lasting anywhere between 1-4 years
  • Most common symptoms are bi-lateral shoulder and hip/leg pain
  • Successful treatment of symptoms with Prednisone

The disease may be preceded by another, related syndrome called Giant Cell Arteritis (GCA) or Temporal Arteritis (TA), or this syndrome may appear after being diagnosed with PMR. This occurs in approximately 15% of the cases, and can lead to permanent blindness if not treated immediately. The initial symptoms tend to be a severe headache on one or both sides of your head near the temple, often accompanied by noticeable swelling and changes in vision.

No one appears to know the cause (it is believed to be an auto-immune disease) and no one has come up with a cure. There is no standard set of diagnostics to confirm the disease. Basically, it is diagnosed by exclusion:

  • Elevated Erythrocyte Sedimentation Rate (ESR) and/or elevated C-Reactive Protein (CRP)
  • Negative for Rheumatoid Factor, ANA, Lyme disease, other inflammatory syndromes
  • Immediate and almost total relief of symptoms with Prednisone

While Prednisone may seem like a miracle, like most things in life, there is a kicker – the dreaded side effects. If you are on a medium to high dose of Prednisone for anything more than a few days, you may experience one or more of the following delightful conditions:

  • Weight gain
  • Osteoporosis/bone loss
  • Fractures
  • Acne
  • Breathlessness
  • Buffalo hump
  • Cataracts
  • Change in fat distribution
  • Diabetes
  • Euphoria
  • Fatigue/weakness
  • Glaucoma
  • Hair loss
  • Headache/dizziness
  • Increased appetite
  • Increased blood sugar
  • Increased bruising
  • Increased hair growth
  • Increased sweating, especially at night
  • Increased urination
  • Indigestion/stomach upset
  • Insomnia/other sleep problems
  • Moon face
  • Nervousness/restlessness/mood changes
  • Slow wound healing
  • Stomach ulcer
  • Strokes
  • Thin/fragile skin

Because of the significant risk of osteoporosis (bone loss) your doctor will recommend that you take Calcium and Vitamin D supplements and possibly a prescription medication (called a bisphosphate – e.g. Fosomax, Actonel, Boniva) as a preventive measure. While bisphosphates have been shown to be effective, they are not without their own risk of side effects, the most serious being a slight risk of mandibular necrosis (your jaw rots away). If you do end up taking one of them, be sure to let your dentist know. In fact, he/she should be aware of your taking Prednisone.

Unfortunately, once you've been on Prednisone for a while, you just can't stop cold turkey. Apparently your adrenal glands make a small amount of corticosteroids all by themselves, but react to the taking of an external supply for any length of time by shutting down production. Stopping the external supply does not cause the spigots of natural production to restart immediately. Furthermore, you need the small amount of corticosteroids normally produced by your body, so that if you suddenly stop taking the external source that caused the shutdown in the first place you could be in real, potentially life-threatening trouble.

For this reason, the approach to getting off Prednisone, and hopefully reducing or eliminating any of the "features" you may have experienced, is to taper the dosage slowly over time. Because there is no way to predict how long your particular case of PMR will last, tapering is at best a trial and error process, no matter what you read or what your doctor tells you.

The other reason for tapering off in a controlled fashion is that once you have been on Prednisone for a while, you can experience "withdrawal" if you lower the dose too quickly. The main symptom of Prednisone withdrawal seems to be pain and stiffness similar to the disease for which you are taking the Prednisone in the first place. This effect is quite annoying because, as indicated earlier, PMR will eventually go away on its own, but the time frame varies tremendously with no way to predict when you can expect to be free of the disease. So, the question is, if you start experiencing a return of symptoms after lowering the Prednisone dose, is it the PMR or Prednisone withdrawal? Relapses of PMR during tapering are quite common and can lead to having to up the dose significantly to get relief. While this is a setback to the goal of tapering, you really don't have much choice unless you enjoy the pain.

I am sure you found the preceding medical discussion quite fascinating, but now on to something even more interestin - my experiences since starting treatment! As I indicated earlier, I started out at 20 mg of Prednisone per day, taken half with breakfast, half with dinner. The reason for taking it with food is that Prednisone can be quite hard on the stomach, so it is always a good idea to have something in your stomach before taking it. I also started taking the Calcium/Vitamin D supplements, and then a month later Actonel, in the form where you take it once a week.

Bisphosphates are not cheap, and even with a decent prescription plan on your health insurance (should you have decent health insurance), it comes with a hefty copay. The reason for not starting it right away was the rather vivid description of the worst of the side effects. While I was not too worried about my jaw rotting away, why take the chance? Upon further on-line investigations it appeared that in the majority of cases of mandibular necrosis, it took a couple of years and usually followed some invasive dental work. The other interesting thing about bisphophates is how you are supposed to take them: first thing in the morning with a full glass of water before any other medication, no food or liquid for at least 30 minutes, and no lying down (you can sit) for at least 30 minutes. Apparently there is a risk of choking if you lay down before then.

My rehumatologist suggested a fairly aggressive Prednisone tapering schedule, but I decided to design my own which I based on an amalgam of recommendations I found on the web:

  1. Lower the dose by 2.5 mg per month until reaching a total daily dose 10 mg.
  2. After 10 mg, lower the dose by 1 mg per month until reaching a total daily dose of 5 mg.
  3. After 5 mg, lower the dose by 0.5 mg per month (or longer) until hopefully reaching a total daily of dose of 0.

Tapering does require some cooperation with your doctor because of the need for varying strengths of the Prednisone tablets. Orignally I was given a prescription for 10 mg tablets, 2 per day, which was quite convenient – one in the morning, one at night. When I went to 17.5 mg, I either would have to split these pills into quarters, or get a new prescription. Splitting the pills in half was not that much of a problem because each pill came with a convenient score down the middle to aid in the splitting (I recommend getting a pill cutter), but cutting the halves in half did not work out too well. After a discussion (more like an argument) with my rheumatologist I was able to get her to prescribe 5 mg tablets. By the time I got down to 12.5 mg per day, she was resigned to my independence and gave me a prescription for 2.5 mg tablets, and when I got below 10 mg, she was stunningly cooperative and gave me a prescription for 1 mg tablets. I am currently at 3 mg, and am looking forward to getting down to zero.

As for the Actonel, I kept taking it for about 6 months until I started developing significant pain in my hands and wrists that was suspiciously correlated with the day of the week I took the pill. The pain would start within 24 hours and would take a day or two to subside. More on-line research unearthed several forums where people taking bisphosphates described their experiences. The responses were evenly divided between those who experienced significant pain in various parts of their body soon after taking the weekly pill, sometimes quite debilitating, and others who experienced no side effects at all. Given that my dose of Prednisone was now below 10 mg, I figured that my risk of osteoporosis was not that high and discontinued the Actonel.

In terms of side effects of the Prednisone, I seem to have escaped almost all of them, with the exception of some minor acne on my derriere. At the beginning I found that certain types of activities (repetitive motion such as sweeping) made my symptoms worse, so I quickly learned to avoid them. Walking long distances was not a problem so I was able to maintain my previous main form of exercise of walking several miles a day, weather permitting. In the winter, I actually enjoy shoveling snow – it is one of those activities where you unambiguously and immediately see the fruits of your labor, and it is great exercise. I had figured that I would have to abandon this because of my initial difficulty with repetitive tasks, but I seem to have overcome that and have been able to shovel snow and chop ice to my heart's content. The other main effect of PMR on my lifestyle has been to make my eating habits more regular because of the necessity of taking the Prednisone at regular 12 hour intervals.

Well, that brings you up to date on my fascinating experience with PMR. I am one of the lucky ones in that my symptoms have for the most part disappeared, I have experienced almost no side effects from the Prednisone, and I have decent health insurance so that my access to medication and doctors is reasonable and not too expensive. In the process of dealing with this disease for almost a year, I have learned some lessons that I hope will be of some benefit:

  1. If you think you have PMR or GCA, and your doctor has never heard of it or believes you are not old enough, etc., insist on appropriate testing or find another doctor. If possible, get a consultation with a rheumatologist.
  2. If your test results for Erythrocyte Sedimentation Rate (ESR) and/or C-Reactive Protein (CRP) are not elevated, and any other test results do not indicate some other disease, insist on trying the Prednisone. Rapid relief of symptoms when starting the Prednisone is a clear indicator you may have PMR.
  3. If a single morning dose of Prednisone does not help with early morning pain/stiffness, try splitting the dose.
  4. Do NOT taper the Prednisone too quickly, no matter what anyone else, especially your doctor, says. You are the best judge of what works.
  5. You are NOT alone. PMR is much more common than you think, especially because it is not one of those diseases you read about or see on TV all the time. The incidence of this disease has been estimated to be up to 1 in 150 people in their lifetimes.
  6. If you have access to the internet, use it regularly to find forums of fellow sufferers and information, and information about alternate medications, the disease in general, and side effects of the treatment.
  7. Look for support groups in your area. Awareness of PMR/GCA is growing and some of the patients have become quite active in forming support groups and pressuring the medical community and/or their governments to promote better research and treatment.
  8. There are some great resources on the web to help you through your bout with PMR. I have found the best resource to be actual patients and the forums to be invaluable. Read through all of the patient experiences you can find and it will become quite clear that despite the medical community's almost uniform description of the disease and its treatment, each individual's experience is quite unique.

I can unequivocally recommend the following websites:

The PMR and GCA Tayside Support was formed by Jean Miller who has suffered from both PMR and GCA for the past eight years. Independently, another organization was formed by a group of 5 women in the UK who suffered from PMR, and, in the words of Howard Beale from the movie Network, "they were mad as Hell, and they're not going to take this anymore!". They called themselves the PMR Fighters and succeeded in raising the awareness of PMR/GCA in their country, and have been instrumental in encouraging other patients to form new support groups. Despite being an ad hoc group, within one year they were able to get a National Organization in place for research, support and to raise awareness. Having achieved many of their original goals, they have officially disbanded and dispersed to their geographical areas to set up/run support groups – all with their own email address and contacts.

I started working with the PMR Fighters when I decided to create an on-line survey designed to gather information about PMR/GCA from patients and provide information to patients. Together we crafted a set of questions to help collect a standard set of information for PMR patients that could be used as a starting point for people who are new to the disease, and perhaps be of benefit to the medical community as well. What prompted this effort on my part was that in reading through the entries in the forums cited above, as well as conducting various web searches, it became apparent that while there is a tremendous amount of anecdotal data out there regarding PMR, there has been very little systemic data collection to categorize various aspects of the disease.

The survey can be found at http://www.quantisurve.com/cgi-bin/pmr.asp.
The reports at can be found at http://www.quantisurve.com/pmr/reports.htm.
If you are a PMR/GCA sufferer and have not already filled out this survey, please take a few minutes to do so.

About the Author

Besides suffering from PMR, Elliott J. Greene has a Ph.D. in Microbiology and early in his career conducted research in immunology and toxicology. He has been a software developer for over 25 years, and since 1999 has been a co-owner of a survey business.
 

Back to Our Stories

Valid XHTML 1.0 Strict Valid CSS!

Site by Desktop Solutions