Puzzled

Had diag of PMR, took pregnasone for 1.5 years, been off since 8/16. Had heart palpitations, went to emergency, monitored for 8 hours, nothing. They did an inflam marker, it was 11 and climbing. Had temporal biopsy for GCA, nothing, negative. They put me on 40mg of preg which has brought inflam down to 5. I have no symptoms and feel good. My doctor did every test in the book, even sepsis. I am being withdrawn from preg, Sunday . Anyone have anything like this?

17 Replies

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  • Short answer - no!

    Guess inflammation marker was CRP, if so 11 is quite high, and yes the Pred will have reduced that.

    Negative biopsy doesn't always mean you don't have GCA, just the sample taken didn't show anything!

    Inflammation can be raised by many other things, so I think it's just a matter of you monitoring yourself, and reacting as you did if anything strange occurs in future.

    Sorry can't give you any further reassurance. Hopefully, it was a blip, but just be aware, that's all you can do really.

  • I have sepsis tests of which in 5 days no bacteria grew. I had. C5 where he looked at lungs bladder back pancreas. He has tested me for over a month, liver, kidneys etc. blood tests. He is now looking at protein/creatinine ratios in the urine.

    My sister had GCA and now has PMR. The biopsy is 85 percent and statistics show if you have had PMR you have less of a chance of getting GCA, going the other way if you have GCA you have more of a chance getting PMR. It is all a puzzlement! My sister and I have no idea where this has come from in our genealogy. I am hoshimoto, glaucoma and PMR.

  • What statistics show if you have PMR you are unlikely to get GCA? If your PMR is treated correctly and in a timely manner you probably won't get GCA, but if it is not controlled then it may develop Into GCA . Don't know that it's true if you have GCA you are more likely to get PMR. There are plenty on here who have/had GCA and didn't have PMR - me included.

    I would also question that the biopsy is 85% accurate. If it's positive, then yes it's positive, but it can come back negative and you still have GCA. The tiny sample of artery may not be affected, but that doesn't mean other arteries are clear, and if you've been on Pred for a few weeks, then the inflammation may have gone down in the sample but the underlying GCA is still active. Bit hit and miss.

    If you took Pred for less than 2 years then it's quite likely your PMR is still active, and has just raised it's ugly head again.

    Don't think any of us can say why we have PMR or GCA, although many on here have commented that their parents also suffered with the same illness, although it may not have been diagnosed as such.

  • I do not question a surgeon who specializes in head and neck and other diseases and my rheu motorist who state a biopsy is 85 per cent accurate for GCA diagnosis. My inflam test came back and it is 7.1up from 5.1. We cut preg back from 40mg to 20mg. My rheu is tracking weekly the inflam rate and we are both waiting to see if it still climbs. Before I started 40mg of preg, the inflam rate had backed down a point.

    I am on a statin which was changed two months ago, will this play a part in this inflammation rate? Wondered if any one else had mentioned statins playing a part in inflamation. I also have glaucoma. I have mentioned statin issues to my rheum. Discouraged Californian.

  • Ok.

    I have been on statins pre, during and post GCA - never heard any comment about them affecting inflammation, however they do have other side effects, mainly affecting muscles.

    Did you have Glaucoma pre Pred, or did that cause it? Unfortunately it can be exacerbated by the Pred, is it being treated?

  • I had glaucoma way before any pregnason. I believe the call it ocular hypertension, there are goals for pressure on the optic nerve and I am on drops which so far have really controlled it.

  • Are you a licensed Doctor?

  • If it is positive it is 100% accurate for diagnosis - unfortunately, GCA doesn't only affect the temporal artery and sometimes doesn't even affect it. It isn't THAT good. I don't care if the surgeon is a head and neck specialist. He might think he is that good.

  • Twenty years doing biopsy so. Doppler is used to fing arteries, she is aware of strong pulses and they examine skin in scalp for color. Prove me wrong about the prevalence of GCA getting PMR, PMR has less of a chance of getting GCA.

  • I'm not arguing with you - but anyone who has PMR is at a higher risk of developing GCA than someone who does not have PMR. If that is what you mean.

  • GCA patients have a risk of developing PMR, but PMR patients have less of a risk of developing GCA .

  • Anyone who has PMR is told to be aware of the symptoms of GCA - because PMR is a symptom of GCA in some.

    "Polymyalgia rheumatica (PMR) and giant cell arteritis (GCA) are linked inflammatory conditions that affect different parts of the body. They are frequently discussed together because:

    ●PMR occurs in about 50 percent of people with GCA.

    ●GCA occurs in approximately 10 to 15 percent of people with PMR.

    The two disorders do not necessarily occur at the same time."

    I can only assume this is what you mean.

  • Are you a rheum or a doctor?

  • I, too, am somewhat bemused by your stats. One in six patients with PMR is likely to go on to develop GCA. And the TAB is positive in less than half of patients. It may be the gold standard but it isn't easy to get a positive result for all sorts of reasons. And it isn't the people for whom it is positive who have the problem - it is the ones who don't but do actually have GCA.

    It is also felt that patients who get off pred in under 2 years are at a higher risk of having it a second time - and there are plenty of people who stop their 1mg and within months, sometimes weeks, have symptoms again.

  • 1. How long did it take to bring your markers down to 5? What is the reasoning for withdrawing you from Pred completely on Sunday? Will they continue to test to see if the markers go back up in the absence of Pred?

    2. I would love to have an answer to this. I've been on Pred for PMR since Dec. Started at 15, bumped to 20 because of residual symptoms, down to 14, feeling good with a little ache here and there that I've come to accept and mostly ignore given what I've read on this blog. However, a few weeks ago routine ESR/CRP testing showed my markers climbing. I was held at 14 for another week and retested but when they climbed again, this time to 40/2.5 (USA) I was bumped back to 20. I tested again after one week at 20mg and I was back to my best numbers. To be conservative, my Rheumy has kept me at 20 for another week. On Monday we'll start tapering again. I hope I don't have to go down as slowly, 1mg /week this time.

    I too was tested for a bunch of things, and everything came out fine. I wonder if there have been any studies of random ESR/CRP testing vs symptoms. I've read here that symptoms and markers don't necessarily but I don't know if that is based on personal experience or on research.

    3. I feel that I am high risk for GCA, having had herpes zoster in my middle ear many years ago, and having a tendency to flush, rosacea like, but no direct symptoms of GCA (yet). I too don't think a biopsy will be useful at this point since there are too many false negatives. If a biopsy is positive, my Rheumy says she'd have to treat for it despite absence of symptoms.

    4. Between a rock and a hard place with all this. And I still consider myself lucky since I have had few side effects of the treatment to date. Tomorrow will bring whatever I suppose.

  • I was put on 40mg on 4/02 because the did not know about eyesight, I have gloomy. They did the biopsy due to history, my sister had GCA and now has PMR. They can withdraw me from 40mg over a three week period. This last week I have been on 20mg. I have had no symptoms of anything. I took another inflam test yesterday. Believe it or not I adjusted well to 40mg pregnasone, much better than 20 mg when I had PMR. Coming down off preg with PMR was rough around 5mg. He is now watching a protein/creatinine in urine. It is all a mystery!!!

  • Hi,

    Once you are on the correct level of a Pred then your markers should be good, that's the effect of the drug.

    You should be able to get back down to 15mg without too much problem, but don't try too quickly after that. A week really is not enough time to know whether the dose you are on is enough to control the symptoms, it can take up to a couple of weeks for your body to respond fully to the lower dose.

    There is no point in havng a biopsy if you have been on Pred since Dec, it needs to be done before the inflammation is controlled.

    Symptoms are always the key, the blood tests usually only confirm that the inflammation is out of control, and you need at least a couple of rising ones to do that - as you did.

    Unfortunately, lots of other things can affect your ESR so an odd one out of sync shouldn't ring alarm bells, only if it's consistently on the rise!

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