Polymyalgia rheumatica

[toml]

Originally my HMO doc diagnosed me with Polymyalgia rheumatica (PMR) and gave me prednisone starting at 40mg. It worked for a few full days but faded after 10 hours on the third and subsequent days. Found my self wanting to take it earlier each day. Alos had serious side effects. I was on it for about 3 weeks as I had to taper dosages to get off it.

After other diagnosis, tests, etc nothing seems to fit, especially when I begged for minocycline and that took the pain away on the original areas affected but I had to stop after 10 days. Started again with mino but have flared and it is probably herz as was mentioned here.

My question is that as I will be going to an AP without insurance, I went for a visit to the HMO fully prepared to ask for AP treatment. After some discussion, they now have returned to the PMR diagnosis and suggest going back on prednisone. I have researched PMR. Mayo clininc and other sources indicate PMR should go away with 20-10my prednisone. My docs say not so.

Has anyone had PMR and used prednisone? If so was remission complete at low levels.

Thanks again for this site and all you input in the past

[Maz]

@toml wrote:

Originally my HMO doc diagnosed me with Polymyalgia rheumatica (PMR) and gave me prednisone starting at 40mg. It worked for a few full days but faded after 10 hours on the third and subsequent days. Found my self wanting to take it earlier each day. Alos had serious side effects. I was on it for about 3 weeks as I had to taper dosages to get off it.

Has anyone had PMR and used prednisone? If so was remission complete at low levels.

Hi Tom,

PMR is not a rheumatic disease we hear a lot about here, but I know of two PMR patients who have taken two entirely different treatment paths and both have done well, though I think the one who has done antibiotic therapy has probably faired better in the longterm.

One lady is the wife of one of my husband’s customers…she took pred for a year or so and it basically masked her symptoms, but she did get to a pain-free state. I believe she has had recurrances and needed to go back on pred, though I am not sure of details. The other lady is a Road Backer, living in the upper mid-west, but doesn’t post here on the forum and I’ve communicated with her by email. After having IGeneX labs run, she discovered the cause of her PMR was Lyme disease and is seeing a Lyme doc, receiving antibiotic therapy and, last I heard a few months ago, was on track to recovering very well after some amount of early worsening from herxing.

These two PMR patients are pretty good examples of the diametrically-opposed treatment paths for PMR…one using heavy immune-suppressive therapy and one having discovered infectious causes and going after them. From my limited reading of PMR, it can be a self-limiting disease, which is pretty painful while it’s going on, but can go into remission after a period of year or so.

I think what might color a decision about treatment is whether one adheres to the “infectious causes” theory or the “idiopathic” (no known cause) autoimmune theory of body attacking self for no good reason. Also, preference for treatment. Longterm pred use in the high doses used for PMR can be serious – diabetes, loss of adrenal function, cataracts, bone loss, skin thinning and poor wound healing, bleed-outs from stomach ulcers, risk of serious infection…the list of nasties is pretty extensive. That said, prednisone may somehow re-set immune function in PMR, which may be why patients may ultimately go into remission….or just that the disease is self-limiting, anyway, and pred is just conveniently masking symptoms.

If, however,there is any chance that PMR is caused by Lyme disease, as in the lady above, prednisone use would be contraindicated, as not only would the side-effects be amplified and ever-increasing doses needed to mask disease symptoms (Lyme patients generally don’t do well on prednisone), the underlying infections just love the immune suppression and proliferate. Have you considered Lyme as a possibility to check out, Tom?

[toml]

Thanks for the response. I do appreciate this forum and all the work you and others do here. It is a real blessing to us who are left on our own, especially those of us not able to have good contact with an AP or alternative doc.

I assumed that PMR was a rare topic as it did not surface in a few searches.

I subscribe to the infectious causes theory rather than the idiopathic process. My experience so far with my GP and RH is that the heavy duty drugs are over-prescribed and diagnosis work is underemployed.

I have the Western Blot test for Lyme on my list of topics for my RH when I see him next week. I do not recall a tick bite but had plenty of opportunity as I hike a lot and lived on acreage with deer and other domestic animals in the pasture I frequently waded through fixing fences, etc. I understand only 30% of tested positive for Lyme do recall a bite.

I also want to have a mycoplasma full panel run. If the RH agrees then I will continue to stay off the mino for another 3 weeks to make the required 4 week mino break Dr. Franco suggests on his web. My recent flare seems to be fading and I am able to manage with some NSAIDS, cod liver oil etc.

I also have a naturepath looking a toxins in my blood and DNA.

Thanks again for the good thoughts and advice

Tom

[Maz]

@toml wrote:

I have the Western Blot test for Lyme on my list of topics for my RH when I see him next week. I do not recall a tick bite but had plenty of opportunity as I hike a lot and lived on acreage with deer and other domestic animals in the pasture I frequently waded through fixing fences, etc. I understand only 30% of tested positive for Lyme do recall a bite.

I also want to have a mycoplasma full panel run. If the RH agrees then I will continue to stay off the mino for another 3 weeks to make the required 4 week mino break Dr. Franco suggests on his web. My recent flare seems to be fading and I am able to manage with some NSAIDS, cod liver oil etc.

Thanks for your reply, Tom, and very kind words. Your plan to look into infectious causes sounds wise, although should probably mention that standard ELISA and Western Blot for Lyme testing is notoriously inaccurate. I had two classic bulls-eye rashes (only 50% of those infected will see the rash) and my standard tests returned equivocal. In spite of the fact that EM rash = Lyme, my PCP (now fired) refused treatment, relying solely on the tests. My LLMD has confirmed that had I got early treatment during the rash phase, I may have averted RA.

It’s not a bad idea to run the standard tests, as they are covered by insurance and you may be one of the lucky ones to get a positive read. However, if negative or equivocal, then it’s worth having the IGeneX Western Blot run (about $200) as this test is more sensitive and includes antibody bands that were removed when they were creating the LymeRix vaccine and never returned. They’re pretty specific antibody bands and some of them can be due to nothing else. If this test returns with significant bands, it just helps in providing good clues as to which treatment path to pursue, antibiotic therapy-wise, because Lyme and coinfection treatments vary significantly from Brown’s low dose AP. Btw, various strains of mycoplasma are known coinfections of Lyme, so these treatments should cover the full gamut.

Here are links for obtaining test kits for both IGeneX Lyme testing and mycoplasma testing:

http://www.IGeneX.com
http://www.tarci.net

Let us know how you get on, Tom! Wishing you all the best for you rheumy visit and pursuing further testing.

[toml]

Thanks again for the wealth of information.. I used the advice in the first meeting with my RH which went relatively well.

He has ordered the following Lyme test: BORRELIA BURGDORFERI ANTIBODY W RERFLX TO WESTERN BLOT

If this is what I think, it is the infamous screen then the WB. I doubt if the HMO will spring for the WESTERN BLOT if I test negative on the screen. If that is the case I will see my naturepath and having him do the WB.

Tom

[toml]

As expected my HMO refused to run the Western Blot and again as expected the screen they did run was negative.

I have ordered a IGeneX Western Blot #188 and 189. My new Lyme doc suggested also CD57 test. Any idea what that is? My new Lyme doc did not have time to see me so I had the blood drawn at another lab and they could not find that CD57 test on the IGene X lab paperwork but wrote it on a note. Hopefully it will get done.

Thanks for the advice. I look forward to seeing these results and making some progress in diagnosis!!

Tom

[Maz]

@toml wrote:

I have ordered a IGeneX Western Blot #188 and 189. My new Lyme doc suggested also CD57 test. Any idea what that is? My new Lyme doc did not have time to see me so I had the blood drawn at another lab and they could not find that CD57 test on the IGene X lab paperwork but wrote it on a note. Hopefully it will get done.

Hi Tom,

Yes, the CD57 test is a measure of immune function…it usually reads low in folk with Lyme disease. The following link will tell you everything you need to know about this test and which labs will run it. It’s a specialised test and quite time sensitive, meaning the sample needs to be expedited to the lab to maintain integrity of the sample for accurate testing purposes.

http://www.publichealthalert.org/Articles/gingersavely/everything%20you%20always%20wanted.html

When you get your IGeneX labs back, there should be two results – IgM (present infection) and IgG (past infection). With Lyme, this doesn’t mean a whole lot, because it’s a waxing/waning infection and can waver between looking like a new or past infection at intervals depending on how active it is at the time of the test. Be sure to get hard copies of your results, which should arrive about 2 to 3 weeks to the ordering physician from the date the lab receives the sample. We have links to help with interpretation of the antibody bands when you need them.

Fingers crossed for you, Tom, and sorry to hear about your HMO’s refusal to help you with this testing, but it’s a pretty commonplace occurance, unfortunately.

[Kim]

Great, Tom. When you get your Igenex results post them on the board and we can help you interpret them. Make sure you get hard copies of the entire test and don’t just rely on the “positive/negative” summary because different bands have different significance, and a “neg” could actually be very positive if you hit on certain Lyme-specific bands.

Take care…..kim

[toml]

Hello

I do think I will take you up on the help in reading the WB results. Locally there are not too many docs that are know to be proficient and most have less than 3 years treating Lyme. I gather many Lymies travel to Seattle.

I do have a question as I never did see a tick (over 15 years ago was the last) in recent years and of course did not see a rash or bullseye marker. My question is: how does one determine how long we have been infected? I started to have symptoms of just very painful joints in June; weight loss started in July and of course the “brain dead” memory loss stuff gradually developed though the last half of this 5 month ordeal. Could it be that I was infected years ago and am just now symptomatic or is it more likely the tick bit in May-June?

Tom

[Maz]

@toml wrote:

I do have a question as I never did see a tick (over 15 years ago was the last) in recent years and of course did not see a rash or bullseye marker. My question is: how does one determine how long we have been infected? I started to have symptoms of just very painful joints in June; weight loss started in July and of course the “brain dead” memory loss stuff gradually developed though the last half of this 5 month ordeal. Could it be that I was infected years ago and am just now symptomatic or is it more likely the tick bit in May-June?

Hi Tom,

Yes to both questions – Lyme can remain latent for decades and erupt later in life when immune function is compromised (stress, shock, accident, surgery, illness, etc), or a person can be multiply infected over the years (knowingly or unknowingly) where the last tick bite tips the apple cart in terms of pathogen load and the immune system is just unable to juggle all those apples, or it can be a recent tick bite that was never noticed at the time.

Very few people actually see the tick that bit them, because the nymphal forms can be the size of a pepper grain. Add to this that only 50% of people ever see a bulls-eye rash…sometimes it’s there, but hidden in the scalp, in the groin, on the back, etc. or the rash just never appears….and then, on top of all this, that the current standard Lyme tests are so notoriously bad…it’s a pretty confusing situation.

Further, it’s a waxing/waning type illness, very similar to rheumatic diseases, which go through periods of remissions/flares and it imitates everything under the sun – the “second great imitator,” the first being syphilis, a similar, but less complex spirochetal organism. As for the bug, itself, it is pleomorphic (shape-shifting from spirochete, to spheroplastic L-form, to cyst, to bleb, etc) and, when in an active phase, immune function can be highly suppressed by the infection(s), so not enough antibody can be produced to test in some…usually the sickest, most immune-compromised folk. The dormant cystic form is known to have reduced expression of outer surface proteins, so there is also this to consider…that the immune system may not be able to detect this form and so would be producing less antibody to test, anyway.

The result is that it can be very hard to decipher if Lyme is implicated or not and the main reason why no testing is 100% accurate for Lyme. The hope with IGeneX testing, which does include antibody bands that were removed and never replaced when they were creating the LymeRix vaccine (which incidentally caused autoimmune probs in genetically susceptible people!), is that if certain significant borrelial proteins show up, then this is good reason to pursue Lyme treatment, but also why Lyme must, first and foremost, be a clincal diagnosis.

Confused yet? It sure is a complicated mess and, until a foolproof test is devised for Lyme, it will probably remain controversial and highly political. 🙁

Until such a test comes on the market, it’s just prudent to check out the possibility as early as possible when beginning antibiotic therapy, because it will significantly alter the protocols one would need to pursue with a qualified doctor who really knows the organism, it’s hitch-hiking friends and their disease-causing potentials….and basically just saves time and angst down the road, in case low dose monotherapy winds up not providing sufficient coverage. 😉

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