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 I am being withdrawn from preg, Sunday .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?

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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?

  • We are not medically qualified on this forum, as you will have read in our introduction. Stats are only useful when you are looking at whole populations. They can't be relied upon to predict what will happen in individual cases.

  • 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.

  • Where is your introduction on this website?

  • If you mean what I send to new patients it's not.

    Have forwarded it as below, it is my view only, based on my experiences, but as I say I'm not medically trained, but hopefully it does help new patients.

    This is what I send to newcomers, hope it will help you understand your illness a little better, and enable you to control it rather than the other way round.

    Apologies if I'm repeating what you already know.

    It's what I've gleaned from my own illness (GCA, now in remission) and others' experiences with GCA & PMR over the last 6 plus years. I have no medical training nor expertise, except from a patient's point of view.

    There's a lot of information to digest, so you may need to read it through a couple of times, save it, print it, whatever, and take your time to read other sites etc. Too much to take in all at once.

    PMR or GCA are not like most illnesses -take a course of tablets for a few weeks or months and they're cured. There is no cure as such, but the inflammation caused by the underlying illness can be controlled.

    Lots of us are never sure what caused the underlying conditions of GCA and/or PMR (physical or mental stress are favourites though) but having them means that your immune system is not working correctly and allows certain cells within your blood vessels to grow too much - hence the Giant Cell in GCA. That causes inflammation in your blood vessel walls and means that the blood, energy and oxygen does not circulate around your body as well as it should, so you get aches, pains, stiffness, weakened muscles and fatigue.

    In PMR the most widely affected blood vessels are those in your main muscle groups - shoulders, hips, sometimes knees. In GCA it also affects the shoulders plus those blood vessels that feed your neck, head, and sometimes the torso (Aorta). If only affecting your head it's sometimes referred to as Temporal Arteritis (TA). Serious sight problems can arise if the ophthalmic artery is affected and stops blood getting to the optic nerve, if that's damaged then partial, or all sight can be lost. If your Aorta is affected it can lead to strokes, aneurysm etc.

    The only drug that controls that inflammation is Prednisolone (Corticosteroids), as I said it does not cure the underlying problem of GCA/PMR, but it keeps the resultant inflammation under control. Pred comes in varying dosages, and can be either uncoated (which can be cut if necessary) or coated/enteric (which cannot). Unfortunately it does have some rather nasty side effects - sleeplessness, weight gain, depression, it can also increase the possibility of diabetes, high blood pressure and hasten cataracts, but not everybody gets all the side effects, and they can all be managed.

    Usually PMR and GCA go into remission, but that can take a number of years, around 4 seems to be the average, sometimes less, occasionally a lot longer. You have to tell yourself this is a long term illness, and accept that - it does you little good to say at the beginning I'm going to be off Pred in 3 months, 6 months or even a year. That just puts you under pressure, and that's something you don't need!

    The initial high dose (PMR: 15-20mg, GCA: 40-80mg) takes control of the inflamed cells, and then you have to taper slowly enough to keep the inflammation under control, if you do it too quickly you may go below the level of Pred that works for you. It's a balancing act, you obviously don't want to take too much Pred, but you need to ensure you are taking enough.

    When you collect your first prescription you should also get a Blue Steroid Card from the pharmacy. Once you've been on Pred for 3 weeks your own adrenal glands stop working, so you mustn't suddenly stop the steroids - anybody in the medical profession should be aware of this. Some people wear a medical ID bracelet just in case of emergencies. Look on line, or doctors surgery may have leaflet.

    The usual plan is to reduce every month but, and it's a big but, what looks achievable on paper, in real life it's very often not!

    As I said most people have started at a bigger dose, and therefore the inflammation at that level is well under control, the art then is to reduce SLOWLY provided you have NO return of symptoms. Some doctors don't seem to get the 'slowly' bit! If you reduce too quickly, whether that time-wise or by dose you are likely to go past the level of Pred that can control your inflammation.

    If you remember the mantra-do not reduce more than 10% of your existing dose - it will stand you in good stead. So at 50mg that would be 5mg, at 20mg -2mg or 2.5mg (tablet size). Obviously once you get below 10mg, that will be part of a 1mg tablet, so most people find that cutting them in half (so long as they are uncoated) gives approx 0.5mg.

    Some people have problems reducing from existing dose to a lower one, and that's because your body needs to acclimatise to the new lower dose. So for a few days you may suffer steroid withdrawal (feel generally unwell, irritable etc) but it should go after about 3 or 4 days. One way of stopping any withdrawal symptoms is to taper over a few weeks, rather than an "overnight" drop. Say introducing the lower dose on 2 days during first week (although not consecutive days), maybe 3 days next week, 5 days next week, and then 7 days final week. There are many different plans, quite a few published, or devise your own - whatever suits YOU best. Just ask!

    Recommended time to take Pred is early morning, with or after food. However the cytokines that trigger the inflammation are produced daily around 4am; some people take their Pred around 2am so that by the time it is fully in their system (uncoated about an hour or two; coated about 3-4 hours) it's ready to fight the inflammation.

    Try and read as much as you can about your illness, the uk charity PMRGCAuk.co.uk has lots of information. You can find a link if you go to the home page of this site and scroll down, it's on the right hand side.

    There is a book by Kate Gilbert - A survivors guide to GCA and PMR on Amazon - either hard or e copy, just type in GCA or PMR in Books. The North East branch of PMRGCA also has lots of info, link from main charity webpage. You can also get information on the treatment suggested from British Society of Rheumatology (BSR) site, or patient.uk site has information leaflets aimed at patients and doctors. A little while spent searching the internet will give you plenty of reading.

    Look up 'Spoons Theory on web, (Butyoudontlooksick.com) it's not about PMR or GCA but another auto immune disease, and it will give you an insight into how to adjust your lifestyle.

    You do have to do your bit as well though, just because you feel better when you start the Pred, you are not back to normal, you still have the underlying disease there. You have to learn to pace yourself, that means resting. Your muscles are not as resilient as before (both from GCA/PMR and the Pred) so when you exercise - do gentle - Pilates, Yoga, Tai Chi all good - no strenuous workouts or marathons! You need to let your muscles recover, and that now takes longer.

    Take more time planning, don't try and do half a dozen jobs all at once, or all on one day! Take any offers of help, even though it may go against the grain at first. Life can return to NEARLY normal, just in a slight slower lane maybe.

    As I said at the beginning a lot of information to take in, but hopefully you can come back to it as and when you need to.

    Please come along with any more questions, or just to talk. There's a lot to learn, but there's lots of people on here willing to help - mainly from UK, but also many from around the world, so you should get a response anytime. If

  • Sounds good. Are you in the United Kingdom?

  • Yep, sure am. Live in county (State to you) of Dorset, hence name. About 8 miles from south coast.

  • Crp was 9.1, two and a half weeks later 6.0. I am on a fib medication. Cardiologist denies Crp his any indication of heart. I am beginning to wonder if there is a link. Any opinion from you vast experience?

  • Sorry can't help on that one.

    Might be worth raising it as a new post, you could get some answers from others who have cardio problems as well as PMR. I don't.

  • CRP can be raised in atrial fibrillation - but they have no idea if it is an indication of cause or effect.

    ncbi.nlm.nih.gov/pmc/articl...

    heavy read but it's there if you are interested.

    I have a/f - and my cardiologist is confident it is due to the autoimmune part of PMR having damaged the electrical cells in the heart that govern heart rate. It started about the same time as the PMR symptoms - not that i realised, I had palpitations but the GP dismissed it as "your age" - same as the PMR aches and pains. However - my CRP has never been raised with PMR - except once, blood taken about half and hour before I had a really nasty attack of the what's'its. The following week it was fine.

  • I had been off preg for seven months. Will on preg I had bad palpatations went to Er, before I got there it stopped. I have been to the Er 3 times out 4. Nothing. after the fourth go around my rheum put me on 40mgs of preg after a Crp of 15. Had my GCA biopsy. Soon after withdrawal of preg I had another Er visit where they kept me 11 hours and a diagnosis of a fib. Crp of 15 has been morphed into Crp 6, I have been on meds. Go figure.

  • 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!

  • I am off pregnosone since august 2016, Crp now is 9.5. Feeling fine no symptoms. Three weeks ago a fib was diagnosed. I have had every test possible. Nothing. My Crp is monitored every two weeks. Since a fib diagnosis it has gone down slightly. Any ideas.

  • A/fib can be due to the autoimmune part of PMR - it was for me. I have found at least 2 medical papers reporting CRP is raised in a/fib - but it isn't clear if the raised CRP is a sign of existing inflammation causing the a/fib or the a/fib itself is causing the raised CRP. Either way - it is a common finding.

  • I will have another Crp this week. My reumotologist has stop all radical blood tests and other tests. Got my Medicare statement, $10,000 spent to date and no diagnosis. Go figure.

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