This is what I would like to address. Why are we always being tested for CRP and SED when they are not absolute indicators of PMR or GCA? It seems the test that can tell us for sure if we are still in active stage is IL-6. To which there is a specific test to measure. I could buy this test at a local lab but it is running 128.00 dollars. They do run special discounts on different tests from time to time though so perhaps they will make it more affordable. Anybody have some brilliant ideas or comments? Why take tests that are not specific when there is a specific test and we WOULDN'T BE TRYING TO GUESS whether we are having a flare or relapse or adrenal issue?????????????????????????????????
Why not an accurate test? IL-6: This is what I... - PMRGCAuk
Why not an accurate test? IL-6
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lemarie1
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Given that il6 is involved in lots of conditions and illnesses why would it be more accurate test for pmr? I am sure there's a much more complicated question I could ask given that there is no exact understanding of the overall relationship or process going on. Actemra is working with the il6 processes as I understand it. Pred is still taken alongside it in the research I have read..
The crp/esr can be used to see if flare is occurring, but there are usually symptoms that are mistaken or ignored. If you taper pred slowly enough and then do synthacean test at 3 to 5mg that will tell you whether the adrenal glands might/will kick in eventually. It's often a lack of patience and the need to "get off pred" that muddies the waters surely. The symptoms overlap but I know my pmr symptoms even if I go into denial when they flare and it takes a while to acknowledge that. There's not much you can do to get adrenals going is there? I am waiting to worry about adrenals until at 3mg to 5mg of pred because there's no point before. I am happy to be told I am way off base. It won't be the first time. I was at 6mg pred for almost a year. Had a bit of deathly fatigue that felt different to pmr fatigue for me. After 3 months it eased. Taking it slowly allowed me to assess my symptoms more.
lemarie1 in reply to
Hi Poopadoop. After posting my question I did look online and found this study which does
seem to verify that Plasma fibrinogen (which I believe is IL-6) is an accurate marker of disease activity in patients with polymyalgia rheumatica.
It says IL-6 is a cytokine with a direct role in vascular inflammation. Disease activity in both PMR and GCA has been shown to correlate with IL-6 levels . Theoretically IL-6 provides a more accurate measure of tissue pathologic processes because it is one of the pro-inflammatory cytokines released in vascular lesions .
academic.oup.com/rheumatolo...
in reply to lemarie1
From the link above.....
Disease activity measures improved significantly in the active group between weeks 1 and 6 (P < 0.001). There was no significant difference between the activity scores at week 6 in the active group and the inactive group......
Plasma fibrinogen is at least as useful as CRP and ESR for the diagnosis of active PMR and more specific for confirmation of response to treatment than either ESR or CRP.
That is from. The link research article. No difference after 6 weeks and it's at the point of diagnosis not at the end of treatment if research on done in 6 weeks from baseline measure. In any case its as least as useful which make no claim for better after diagnosis. Not enough evidence for me to rely on it.
Chrisellie in reply to
Actemra/ Tocilizumab is an Il-6 (interleukin 6). blocker. It is said that It prevents the creation of the inflammation . The Prednisolone is only used for around 6 months when on injections, and the weekly injections continue up to a year. Some taper injections after that and some come off it altogether. I have been told that it has been very successful and if a flare should occur the injections can resume with good effect.
in reply to Chrisellie
But it doesn't work for everyone so the theory is there may be something that is going on we don't understand yet. Up to recently they only had rests for up to 12months. I think the next set of results might give us more info.
Chrisellie in reply to
Yes you are right. The 2 year test were completed this autumn. I have been told they were very successful ,but agree it may not work or indeed agree, with everyone. Lucky so far.🤞
It was mainly for GCA originally
in reply to Chrisellie
I hope it works for everyone... It would be a significant breakthrough. 🌻
PMRproAmbassador
IL-6 is not specific to PMR and GCA. Nor is it reliably raised in all cases - no different from ESR and CRP. It has been looked at, it is a question that arises every so often and it is something I did discuss with one of the top PMR research groups in the UK. Even psychological stress can lead to cortisol triggering the release of IL-6, not to mention muscular exercise, even without a pathological condition.
As you have found, it is a very expensive test and it is not widely available. ESR and CRP are and are just as valid for monitoring decrease or increase of inflammation. We do also keep pointing out that the so-called blood markers are unreliable because they are non-specific and that symptoms ALWAYS trump lab results in this context.
Actemra/tocilizumab works in some cases of GCA and PMR but not all - suggesting there is considerable heterogeneity within the diseases, i.e. not only IL-6 is involved. That is a work in progress.
And in summary:
"Levels of circulating IL-6 are elevated in several inflammatory diseases including RA (as mentioned above), systemic juvenile idiopathic arthritis, systemic lupus erythematosus, ankylosing spondylitis, psoriasis and Crohn's disease. In RA there is a correlation between IL-6 levels in synovial fluid and markers of inflammation. In systemic juvenile idiopathic arthritis there is a correlation between disease activity and IL-6 levels. In lupus IL-6 levels are elevated, but in this setting there is no relation to levels of C-reactive protein. IL-6 levels in ankylosing spondylitis, psoriasis and Crohn's disease are also elevated and correlate with markers of disease activity."
Yes, and thank you for bringing it up at one of the top PMR research groups in the UK. I think that you have done a lot to help people with this disease. 
I also wish to add that I have GCA and am on pred and tapering since Jan 2018 and then we added Actemra subcutaneous since March 2019 . The ESR and CRP settled immediately after Pred started.
WRT IL 6 levels , the levels actually started RISING instead of falling after I started Actemra. It freaked me out. However after consulting with some researchers I was told not to worry - the reason being that since Actemra was binding ( mopping up ) free active IL 6, the immune system was confused and so producing more since the immune system is programmed to give a response to what the body incorrectly understands to be an immune defence situation ...... The IL6 is inherently part of the defense mechanism of the body to put it simply.....
Hence measuring the IL 6 gives us no understanding really of what is the exact status of the situation.
The only reliable way still is the good old PET scan I believe .......
Would welcome any opinions on this .....
In people who are diagnosed with PMR or GCA we are always wondering if we should go up or down on prednisone especially while tapering. It would be much more helpful to us as this is a better sign for PMR activity the article defines. So I think we should be asking our doctors for this test. It probably would be more affordable under insurance.
Now I am not sure as to whether IL-6 and Fibrinogin are the same. I am showing 2 separate tests. So maybe fibrinogen would be the test of choice. It is only 28 dollars without insurance.
labtestsonline.org/tests/fi...
ultalabtests.com/Shop/Items...
labtestsonline.org/tests/in...
ultalabtests.com/Shop/Items...
in reply to lemarie1
Thus is a USA choice more easily made. You are discuss g it as a better system. You have pmr activity if you have symptoms...you are misinterpreting the research above which is talking about 6 weeks and mainly about it as a tool for diagnosis. I personally would want to see more pertinent evidence. If you look a drug (actemra) that is supposed to inhibit il6 doesn't work 100%. Of the time. Meaning for me the physiological factors and system are more complex.
It would be better if you had research about the period you discuss in post.. Lower pred taper. When you get to lower pred will it help you determine if its adrenals being slow or pmr causing symptoms. No evidence on these messages I can see that would determine that. Also whilst we do have some labs here most blood test are done within the NHS unless you can afford it. For some, 28 dollars on a test that hasn't been fully supported by your argument so far, who be a high expense. Until you get to lower doses symptoms rule, even at lower dose they do, but at 3mg you can test for adrenals. What's the issue?..... ... People don't want to slow the taper to try and give time for adrenals to kick in.
I agree with you 100%. I think we need to improve our PMR care. Not just throw prednisone at us and walk away.
This is what it says in summary for fibrinogen tests;
Conclusion. Plasma fibrinogen is at least as useful as CRP and ESR for the diagnosis of active PMR and more specific for confirmation of response to treatment than either ESR or CRP.
I thought you knew it replaces natural cortisol? It's not like you aren't having enough until lower doses.
lemarie1 in reply to
Yes I do know it replaces natural cortisol. .......or were you replying to DadCue? I would surely like to see a little faster speed at the treatment for PMR sometimes as it seems many tests have been done, but not put together into a streamlined way of treatment.
in reply to lemarie1
The test below in the paper is at least as good.... Not a better tool. Its ore about training Dr's properly. My gp dx in 5mins, prescribed steroids then I had blood test. I can see it may work for those who have no raised markers but it's measuring the same system if what you said is corecct about it.
lemarie1 in reply to
I do appreciate this site and all the active moderators who contribute to it's success.
:)❤👏
pugrescue in reply to
I think part of the problem with "replacing" cortisol with pred is that the body has no way to regulate the amt "as needed" by the body. Of course you know that, but in times of stress we are "guessing" at what we may need as opposed to an adrenal gland that knows. Kind of like taking insulin when your pancreas no longer can produce it adequately.
in reply to pugrescue
This is why i always warn that stress isn't good for pmr etc. I have been through stressful physical and stress stress things that have necessitated upping the pred for a while. A research paper on pmr and falls suggests increasing pred after falls as a relapse will most likely occur. Ultimately trying to keep stress as low as possible will probably be of great benefit.... Sometimes that's not so easy is it. I also have fibro which impacts on how the brain deals with stress hormones too acoording to research I read recently. Hope the doggies are doing OK. 🌻
pugrescue in reply to
Pugs are good, getting ready for winter thanks for asking.
Stress is often not something anyone can control. Hubby was supposed to have hip replacement surgery 2 wks ago, after waiting over a year. Getting ready for that was particularly stressful, then going to hospital at 6am (hours drive) and finding they had cancelled it did not help. Having to deal with re-scheduling later this month upped the stress, and now getting ready for his rehab as well.......not a fun time. Just so many things in life which one normally could take in stride now become these giant hurdles. After battling with the surgery booking office (it was their clerical error that delayed hubbys surgery) ended up sending her flowers. Maybe some day will be able to laugh at all this....but not yet
This video seems to confirm it is the IL-6 pathway. I posted it a while back.
healthunlocked.com/pmrgcauk...
in reply to lemarie1
The crp and esr basically measure what is the result of the il6 pathway. I haven't said it does t do that. The main thing you started by saying was wouldnt it be better if we could distinguish between pmr symptoms and adrenal issues by using a more accurate test and my answer based on the evidence you put forward us inconclusive. Why do you think they are struggling to produce drugs that inhibit the il6 to try and stop inflammation? " because there is something else going on and they haven't found it. If I took an hosepipe and tested the beginning, middle and end and water still wasn't coming out you might think something is going off you are not yet aware on. After Al is said and done you can try this and see how it's interpreted.
Yes 28 dollars is not cheap either. I don't think my GP will even order a Synthian test. So we will go by our symptoms like you have indicated. I was just discussing the possibilities that are out there.
I can only repeat - the IL-6 test is no more useful or accurate than ESR and CRP which reflect the action of IL-6 in the body, indirect monitoring. It isn't specific to PMR/GCA and isn't universally available plus the blood sample must be centrifuged immediately and estimated within 24 hours or frozen. One of the arguments against the ESR is that it must be done within about 4 hours which also limits its usefulness in more remote areas. Even the Mayo only does it once per week - meaning you can't have an emergency result which you can with other tests.
mayocliniclabs.com/test-cat...
The bottom line remains that until they can identify something that is more specific to PMR/GCA, ESR and CRP are just as good as IL-6 - it has been considered and rejected.
Why would you want to make it more complicated with a test that is no more informative than what exists?
No not sarcasm. Your relationship with pred and how you have had to use it and how you took it to manage social occasions (I am sure you mentioned increasing your dose for a wrdding- forgive me if I am mistaken) at relatively high doses.
The management of your ongoing conditions beyond pmr suggest that your position in relation to pred is different from others with pmr who may be on pred for years but at low doses, generally well under 15mg. You have mentioned having to go to 60mg to control your other conditions. I am not suggesting any pmr is better or worse but you are not typical of a pmr patient in terms of the doses you have to take sometimes.
Actemra was a mixed bag for me. I was on it off an on for a year. My SED was lower on Actemra, but still had symptoms. After going off Actemra was told by rheumatologist would be on prednisone rest of life. Out of frustration saw the doctor who diagnosed me with Lyme disease in 1998. He still had my original positive western blot blood test for lyme. Two weeks on Clindamyicin with quinine, and all off my pain went away. Stopped meds because of flare of SIBO (small intestinal bacterial overgrowth); a problem I have had for years.
Somehow, and I haven't quite figured it out, at least with me, the PMR/GCA is related to bacterial , fungal, and gut issues.
One question I have that science can not answer: Why is my level of Il-6 elevated? Pheba
What an interesting story! You have been through quite a bit. So how much prednisone do you take now? Did they do a synthian test to determine that you can not lower your prednisone or what was the reason that they said you would never be able to be off prednisone? From what I understand Actemra is the drug of choice for lowering IL-6 . So why did you go off Actemra and why was it on and off for a year if your numbers were doing better?
At first I was much better on Actemra, then fatigue set in and pain returned, making me feel worse. We tried full dose, then stopped and restarted at half dose. Actemra just made me feel like I was standing outside my body watching myself live my life. Also, being a cancer survivor I was always leery of long term effects concerning cancer. Cancer survivors should not take Actemra. Also, anyone who has had a small intestine issue should not take Actemra. I had a small intestine collapse two times, one requiring surgery, one hospitalization for several days. I was feeling the "twinges" of small intestine issue, so know in my gut, no pun intended, Actemra not a good choice for me.
My rheumatologist told me there was no accurate test for Il-6. The Lyme doctor recently did blood work, 14 vials worth. I believe there were some fasting blood tests done to test adrenal gland function, specifically a hormone called aldosterone. My rheumatologist has never mentioned testing my adrenal glands. And this is after being on prednisone for 9 years. One would have to wonder where pmr/gca begins and too much reliance on prednisone leaves off. It is a question I believe the Lyme disease doctor plans to address along with many other tests, and a lot of antibiotics and probiotics.
I see so you are an atypical PMR sufferer. That is why you couldn't take Actemra. But there is a test for IL-6 which is rather expensive, but the one that I would suggest to gauge where your disease activity is .......is the Plasma fibrinogen test which is not that expensive.
academic.oup.com/rheumatolo...
The Lyme disease doctor I am now seeing tested for that. I get the results when I see him in November. And, yes I am an atypical PMR/GCA patient. My symptoms have waxed and waned over the years, but have essentially had this since the tick bite in 1995. It has slowly worsened over time. I have also been through tremendous emotional stress, caring for my mother with terminal cancer, my husband's mother with COPD and congestive heart failure, and his aunt, who had a series of strokes an was sick for 13 years. A lot of stress an a lot of loss. It all plays a part. But, the bottom line is that for the first time in years and years, I was pain free for two whole weeks after finishing two weeks of Clindamycin. I just know in my heart that there is a connection.
Sorry for the typos. My D key sticks
I must say after reading all that you are doing to help others that it is surprising that you are doing as well as you are. Your plate has been full for a long time. I pray that your doctors can really pinpoint the cause of this. And never forget that God still heals people, so ask him for that. I will follow you and see where your journey leads. Post for us periodically.
I am on 8mg prednisone now. My rheumatologist does not do the other testing, only testing for SED rate, which I feel is a poor disease marker. I go by how I feel. The inflammatory pain from this illness is different than normal osteoarthritis pain. I can tell when I am in a flare. The Lyme disease doctor is testing my adrenal glands and other hormone responses. I had a total hysterectomy in 2004 so am lacking a lot of hormones. Considering my cancer history and intestinal blockage history I was always nervous on Actemra. It brought my SED rate own at first then I began to feel awful on it after levels built up in my blood. It mae my cholesterol skyrocket. And it raised my blood pressure, which is something I have been dealing with ever since going on prednisone. Actemra, for me, not an answer. Does not answer question; Why is my Il-6 on the warpath? I think Lyme doctor iss trying to answer that question.
Also, over a thousand people have died from heart failure while taking Actemra, and there is a huge class action lawsuit against the company. I would rather err on the side of caution, especially considering my health history.
PMRproAmbassador
For you possibly. But you are NOT a typical PMR-patient and your primary need for pred is for uveitis is it not? Really not the same thing at all since PMR is there all the time, the uveitis is not. For those of us who have just a pred-responsive PMR-like polymyalgic syndrome there is one way of managing it. Intermittent episodes of uveitis require a very different approach using pred.
PMRproAmbassador
OK - I may have misunderstood previous posts. But you still are a very unrepresentative PMR patient. Like me.
1995, November: became ill after being bitten on top of head by insect to this. Prior to this event, very healthy. Ran 101.5 fever until following March. After this developed symptoms of PMR.
Saw Lyme specialist 1998. started on antibiotics. helped, but caused stomach issues, same problem I am dealing with this time.
1999 - 2004, two stomach surgeries for severe reflux, endometrial cancer, total hysterectomy. PMR symptoms worsened.
2012 - 2015, treated in large city at university for PMR and suspected GCA. Biopsy for GCA misread by radiologist. Undertreated for GCA.
2015, switched all doctors away from University to different city. New doctors sent me to Mayo. Mayo confirmed GCA by rechecking original biopsy, not the report on the biopsy,.
High dose prednisone, started Actemra summer 2018. Super at first, but as dose began to build up in blood began to feel awful, so stopped drug, took 3 months away from it and began at half dose. Half dose good at first, got SED rate down, then same thing started happening, feeling just awful. So rheumatologist stopped it, and told me I would be on prednisone rest of life. that is when I saw the Lyme specialist. He put me on Clindamycin. Within two weeks I was pain free and had some energy for first time in years. Skin ulcers I have had for 20 years are gone, no more skin ulcers. Nasty mucus plug I coughed up from lungs gone, not one since the Clindamycin. I stopped Clindamycin after two weeks. The schedule was for me to start another antibiotic, but I developed a bacterial issue in my intestines from too much probiotic. Yes, there is such a thing and with me it has been an issue for a long time. The above symptoms that went away on Clindamycin are very slowly creeping back, still no skin ulcers or mucus plug, but the inflammatory pain is coming back in a milder way. The Lyme doctor is treating me initially for something called Babesiosis, which he believes I have had for years. I plan to call first of next week and ask him what I should do. I want to start the next round of antibiotics, but am leery because of my stomach. He prescribed flagyl to get the gut bacteria under control. Worked beautifully. This is not C-Diff, but an overgrowth from the probiotics. They are a bacteria and can wreak havoc in small intestines in the gut of a person with little stomach acid. I have been on Pepcid AC since 2017. I am weaning myself from it. I actually find taking a regular Claritin every day helps my stomach issues more than Pepcid AC, and still leaves me some normal stomach acid. The Lyme doctor also thinks I have a mast cell disorder, which concerns histamine. that makes sense as both Pepcid AC and Claritin block histamine. The Lyme doctor writes in his literature that this is a slow healing process and not to get in a hurry, so that's the plan. This doctor is also treating my allergies, so we shall see. But as a cancer survivor, and someone who has had surgery once for small intestine collapse and hospitalization with near surgery a second time, I just felt Actemra carried too much risk with too little benefit. Actemra still does not address why I have too much IL-6, if I even do. My rheumatologist would not test for it.
My best friend is a nurse practitioner. She once told me I am one of the most resilient person's she has ever met. I have hope the Lyme doctor can figure out things the rheumy can not. Not because he is a bad doctor. He is not. he is the best rheumy I have ever been to.
But rather the Lyme doctor is looking at my illnesses with a completely different set of eyes. Reactive arthritis would have me looking at testing the waters by taking a round of antibiotics. If you feel dramatically better then you will know you have a bacterial infection. The Lyme doctor also wants me to see a special dentist that does CT scans of the face. He suspects one of the crowns on my teeth may have an infection underlying. I plan to check into that this week. I do know infections can build up biofilm walls that make them hard to detect.
My reply to you a few days ago did not get posted maybe. Thankyou for the link. To correct myself, the Actemra prevents IL 6 attachment. And hence the body produces more IL6 as part of the immune response mechanism. As I said my IL 6 levels were RISING after starting Actemra. I believe the IL 6 test therefore is not a good measure of the exact status of inflammation at least while on Actemra. Whether it is a good test when not on Actemra , is a good question to ask. ......... Also the ESR and CRP also may be normal but the inflammation may still be active as I understand. Thus then only and only a PET scan will give the real picture is my opinion.
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