John in the UK here, 68 years old and never had any serious medical issues before this.
Diagnosed with GCA in March this year. Mild continuous headache, maybe slight scalp tenderness, though I might have been imagining that. No other symptoms. Diagnosis was based on these symptoms, plus a higher than normal ESR reading. I was prescribed 50mg Prednisolone.
Now, after being on Prednisolone for 9 months, and having (apparently ?) had 3 relapses during normal "tapering", I have been told the next step is weekly injections of Tocilizumab. This has me worried.
My main concern is, that after doing some research, I am pretty scared of the side effects this drug can cause. Not the headaches etc (I realise I will / may have to put up with that sort of thing), but more the more dangerous ones, ie, 5 times more likely to end up in hospital with Covid, plus all the other infections that apparently are commonly experienced with this drug, etc etc.
I have read about how this drug has a "black box" warning in America. Quote = "This is the FDA's most stringent warning for drugs on the market. Black box warnings alert the public and health care providers to serious side effects, including injury or death".
PS = I have had an MRI scan, and a PET-CT scan (8 weeks ago). These apparently came up clear. My specialist seems to be relying solely on ESR results to make the diagnosis and as to whether I have had a relapse.
Any thoughts or comments gratefully received.
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ghost123uk
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Hi, Someone more experienced and qualified will no doubt reply to you very soon but I just wanted to reassure you that I felt exactly the same as you about Tocillizumab and I was really scared to try it. I have been on it just coming up to 12 months (also for GCA) and the only side effect I have ever experienced is a mild skin reaction on the injection site which actually turned out to be due to the wipe used before injection. To further reassure you my years allocation is about to run out and I would give anything to be allowed to continue with it. It really is worth a try as it can be stopped any time. You are also given regular blood tests to ensure nothing is untoward and very well monitored while using it. All the best and I hope it helps you.
my story is same as yours happy diamonds. I was able to transition off pred in 6 months from 60mgs with help of tocilizimab and now having fortnightly injections instead of weekly. My supply runs out at end of year too and Rheumy is putting me on low dose Methotrexate and doing monthly bloods before we decide whether to go drug free. So far so good.
I couldn't cope with the side effects from MTX but Ive been on Leflunomide for over 3 weeks now and so far so good. Oh to be free of all meds and feel like me again 😊
"I have read about how this drug has a "black box" warning in America. Quote = "This is the FDA's most stringent warning for drugs on the market. Black box warnings alert the public and health care providers to serious side effects, including injury or death".
1. TCZ or Actemra (same drug different name) has been used for Rheumatoid Arthritis for years in the UK.
2. TCZ went through clinical trials for both RA and GCA. I was on the panel (as a patient) when the trials were done for TCZ in relation to GCA.
3. The FDA in the USA were the first country to license it for use for GCA.
4. The UK followed on later. It is not given lightly, unfortunately because of the current cost to the NHS. It is given for RA.
5. Two people who were on the trial that I knew in the UK, both went into remission one under a year, the other 18 months.
6. There are people on this forum who have had and are currently been given TCZ.
No doubt another will be along and tell you, just like SnazzyD has already done.
I had GCA for 5 years before it went into remission. I often wonder if it had been around would my journey have been shorter.
I really would like to know where you read that information.
Re "Black Box" warnings. This is another quote from one of the (many) websites I read about this on =
"The drug has a black box warning — the FDA’s most serious warning — for the risk of serious infections that may lead to hospitalization or death. These include tuberculosis, invasive fungal infections, viral infections and bacterial infections. People who take tocilizumab with methotrexate or corticosteroids are most at risk.
“Actemra changes the way your immune system works. This can make you more likely to get infections or make any current infection worse. Some people have died from these infections"
Re "Normal tapering" - This was a reduction (from 50mg initially) of 5mg per 2 weeks. I never got below 20mg before they said I needed to "start again".
You seem to be doubtful that you actually have GCA. Of course, I can't comment on that, but are you really saying that all your flares have been symptom-free? I think I might want the rheumy to explain exactly what the diagnosis rest on in this case. And what is your current dose of pred? The higher that is, the greater the case for TCZ
As to your fears about TCZ, I can only say that I have been on it for almost a year, with no more obvious side effects than a wave of weirdness shortly after the first 2 injections. On the other hand, it finally enabled me to get below 15mg pred. Ihaven't had even a cold this year, let alone Covid. Considering how some of the people with long-standing PMR have suffered, are still on at least moderate doses of pred after years, I am very grateful to have been given it, and only wish it could be offered to them too.
Hello, just stepping back a bit a few questions have come to mind. When you say “apparently” a flare do you mean you were told you were having one just based on ESR? If so how much had it gone up? It’s a question of degree and ESR isnt specific to GCA, so were other causes ruled out? Have you ever been symptom free? 50mg isnt a massive dose when it comes to GCA, some people here have had to have 100mg. It strikes me that your reduction schedule might have been too fast and your Pred dose hasn’t been allowed to get on top of it. Yes, there are guidelines but they need to be tailored to the patient not necessarily stuck to come hell or high water. Some docs don’t get this and indeed knowledge of GCA can be very patchy.
TCZ can be a game changer for those on Pred. It deals with one (of a number) of the important mediators of inflammation in GCA, Interleukin-6. There are others but if it is your main driver then TCZ is good. Pred isn’t exactly benign either but it is very well known. Personally I refused because I was controlling my own Pred with good effect and had medical reasons for not wanting another immunosuppressant on top. It may be you just haven’t had your Pred dose properly managed or you have what is called refractory disease that needs the addition of TCZ. It’s difficult to tell from here.
Quote = "When you say “apparently” a flare do you mean you were told you were having one just based on ESR? If so how much had it gone up?"
Yes, just based on ESR. Initially it was 66. Over time it dropped to as low as 14, then went back up to 50, at which point they said I had to "start again" (at 50mg) and use the usual taper regime. It went back down, but a couple of months into the taper, it went back = "start again". Then 2 weeks ago it had gone up to 66 and they said to "start again, again !!" and I am to go for tests re the commencement of TCM
Quote = "It’s a question of degree and ESR isnt specific to GCA, so were other causes ruled out? "
No, and this concerns me.
Quote = "Have you ever been symptom free?"
No, but the headache (24/7) is not what I would in anyway call severe. I only went to the GP because you are supposed to if you have a headache that lasts more than a few days / a week......
Quote = "It strikes me that your reduction schedule might have been too fast and your Pred dose hasn’t been allowed to get on top of it. Yes, there are guidelines but they need to be tailored to the patient not necessarily stuck to come hell or high water. Some docs don’t get this and indeed knowledge of GCA can be very patchy".
I cannot really comment on that, but I certainly take onboard your words.
Quote = "TCZ can be a game changer for those on Pred".
Good to know 👍
Quote =" Pred isn’t exactly benign either"
Tell me about it 😖
Quote= "It may be you just haven’t had your Pred dose properly managed or you have what is called refractory disease that needs the addition of TCZ."
Refractory disease was mentioned as a possible issue in the last letter I had from the specialist.
~~~~~~~~~~~
One thing I have noticed is that, according to spreadsheet graphs I have been doing re all of this, my headache seems pretty much directly related to my Pred dose. The more Pred I am taking, the worse my headache is (it is never "severe", just not nice). I have wondered if this headache is just the fairly common side effect of Pred and the elevated ESR could be caused by something else.
Though obviously I am no expert on this, I also wonder why the MRI and PET-CT scans apparently did not show any GCA issues🤔
Taking Pred reduces the reliability of these, especially moderate to high doses. I’m not sure how well they show up inflammation in the head arteries either. I had an article on that and can’t find it. Perhaps PMRPro or others will have one.
I am jumping in here at the comment that your headache is worse on more pred. I have definitely experienced this (GCA). On several occasions I have found low level headaches improved with lower dose. (This is just me as an individual but I'm pointing it out because it does happen.)
My jaw is dropping at your consultant. I have read every post for nearly 2 years and not come across this. They are increasing pred back to the starting dose of 50 without flare symptoms and based solely on ESR. The starting dose for (non eye/jaw) GCA is usually 40 and as has been pointed out you wouldn't expect to go back to the starting point with a flare- just to the dose you were last settled. And this is all happening so quickly in terms of tapering.
If I were you I would hot-tail it to get a private second opinion. Many of us go to Rod Hughes in Chertsey. He likes to see people at his clinic in first instance but then it's telephone. If you do that I'd suggest ask your GP for a CRP before you go - that can cross reference to ESR. If you want someone closer (don't know where you are) I think it is Snazzy who keeps the list of angels.
It is your right as someone receiving health treatment to seek a second opinion!
Dear ghost123uk - I am self injecting Actemra since more than a year and had no side effects until present. It allowed me to taper pred rather quickly. I had also Covid when I was on Actemra and (after triple vaccination) it was not severe. No other infections. So at least from my experience Actemra is working well and I could get rid of the pred side effects.
I've been on it for 6 months - haven't had a headache, no infections, no Covid, No side effects I can identify except possibly fatigue but that is just as likely to be the lowest dose of pred I've got to for years!
You should be tested for latent TB before starting it, you are monitored while taking it. I'm wondering what sort of websites you are looking at.
Like all immunosuppressants you are more likely to have infections - which is why you tell the doctor if you get one and stop the Actemra for a while.
You need to understand the role of black box warnings - methotrexate and some NSAIDs as well as paracetamol (acetaminophen) have them too but I bet you don't panic about diclofenac or Naproxen or Tylenol?
I haven't had time to read all the other replies yet - BUT I get the impression that you are a victim of the madness of repeating the same actions expecting a different result.
If the "usual" taper results in a return of symptoms, it is the "usual" tapering approach that is at fault. Slow down, smaller steps with bigger rests between each step down and regular bloods will show whn you have passed the aim at any particular time: the lowest effective dose, that gives the same relief as the starting dose did. The pred CURES nothing - the underlying autoimmune disorder is still there. You use the pred to manage the symptoms. That is all.
And having read them - to have flared and returned to 50mg 3 times since March answers any questions we moght have: You doctors are rushing at this like the proverbial bull in a china shop. When you flare, you don;t need to start again, you need a few days at a slightly higher dose and then return to the dose where you were last OK. SLOW DOWN!!!!!
Quote = "And having read them - to have flared and returned to 50mg 3 times since March answers any questions we moght have: You doctors are rushing at this like the proverbial bull in a china shop. When you flare, you don;t need to start again, you need a few days at a slightly higher dose and then return to the dose where you were last OK. SLOW DOWN!!!!!"
But how do I approach my specialist who is governing my treatment with this information? Who am I too "argue" with her years of training and experience.
My original post here was with regard to my worries about Tocilizumab. After reading the positive reports from other on here re this treatment, I am thinking I should not make waves, and just "go with the flow" (i.e. her recommendations). I mean, if one starts to question a specialists recommendations, that cannot not help with patient / doctor relationships......🤔
No - not suggesting you try to teach her the errors of her ways!! But I'd like to introduce her to the best PMR rheumatologist in the UK who is also very good at GCA as it happens. At a top level meeting about steroid sparers some months ago she explained to the non-specialists that if the first pattern of taper doesn't work, then you adapt it FOR THE INDIVIDUAL PATIENT. It does imply that in every guideline I have read and I have read a few. As a few of the expert patients present started laughing she paused and asked why. Her face was an absolute picture when we told her that we have all experienced doctors to do the same, again and again because they are so convinced their idea is right, despite the evidence they meet on the way.
Of course - me being cynical, maybe she encourages flares so she can use Actemra without any questions.
Quote = "Of course - me being cynical, maybe she encourages flares so she can use Actemra without any question"
That thought had crossed my mind.
I don't feel comfortable with naming her, but this is a bit from her internet profile = "Consultant Rheumatologist at NHS and a Senior Lecturer at The University of XXXX (UK University).
That, in my case is confusing, because my specialist (who apparently lectures in the subject of GCA and RA in the UK) certainly told me that Pred (often) does result in a "cure" for GCA 🤔
I don't want to even think about the rubbish they are spreading in that case! Pred does NOT cure GCA, it manages the inflammation until the underlying autoimmune disorder decides that it will burn out and then the disease goes into remission. But it is NOT due to the action of pred.. Not even Actemra CURES GCA or PMR. It interferes in the process of production of the inflammatory substance IL-6 that Snazzy mentioned above. They think that if you do that for long enough the autoimmune process gets discouraged enough to burn out and stop. But there are no guarantees.
"Lectures on PMR and GCA in the UK"? Who is it? And where does s/he lecture? I'd suspect they have talked about GCA in a presentation at a rheumatological meeting. Not the same really but if they do teach at a UK medical school - I'll retract that.
I’m afraid most of my long line of rheumatology docs said at least one thing each that completely went against recent research or was totally laughable. One was a lecturer in rheumatology who was doing some clinics to keep his hand in! He told me to apply to a TCZ trial that had closed two years previously and said my Pred would fail and he’d write in my notes that I should have TCZ *when* it did. In the end I stuck to my guns and made myself an irritant because I lost faith in all but one at the end of my journey (a bit late!) and my slower regime was working an absolute treat. I didn’t flare and I was down to 1mg in 2.5 years. It was horrible having to go to each meeting feeling like it was an exam where I had to come up with the evidence for my own treatment to guard against harm. I’ve worked with doctors for 30 years and never have I come up against so widespread passed around ‘folklore’ as in the field of GCA and PMR. There are some very good doctors and known experts in the UK but it isn’t a uniform spread. In some western countries it’s even worse it seems.
The bottom line is that it seems that unless you get lucky with this you need to be very informed and ask lots of questions in the spirit of this being a partnership not a dictatorship. Second opinion? Or as you say, go with the flow because it may seem now with so many false starts that have increased your cumulative load of Pred you may as well. I can see arguing your case for a different Pred regime now could be overwhelming and very stressful at this late stage. It’s not like they are offering you snake oil!
I cannot answer your question re TCZ , as it hadn’t been approved in the UK for GCA when I had mine - now in remission for over 6 years. But you seem to have got yourself into a right tizz over it, hopefully replies have now allayed those fears.
Agree with others, unfortunately your doctors seem to have strange views on how to treat GCA, particularly the tapering side of things.
ESR is notorious for being raised by a variety of reasons from a stubbed toe to an full blown operation…and by raising your Pred unnecessary with no symptoms to confirm you were actually having a flare/flares they have set you back and have done neither you nor your GCA any favours.
Had you been allowed to reduce sensibly, I doubt there would be any need for TCZ to be considered.
Plus as also stated, there us no cure for GCA it is recognised as a self limiting disease which for most people goes into remission….and in most studies/guidelines it’s states there is no cure.
Quote = "ESR is notorious for being raised by a variety of reasons from a stubbed toe to an full blown operation…and by raising your Pred unnecessary with no symptoms to confirm you were actually having a flare/flares they have set you back and have done neither you nor your GCA any favours."
I told her I fell over (collecting apples) and 99% certain got a cracked rib (4 weeks ago). It is nearly better now, but hurt like HELL for a week or two. I wonder if that could be a reason for my elevated ESR level 2 weeks(ish) ago 🤔 I did tell her, but she barely reacted to this info at all.........
A cracked rib would most certainly have raised your ESR levels…..but in her defence it may well have caused your GCA to flare so perhaps she was thinking ahead and pre-empting that!
But a knee jerk reaction on just one raised blood result is not good, she should have retested again about a week later to see if it had reduced, remained similar or increased, and then made a decision
We always worry when ESR levels are rising - that can indicate, (along with symptoms for most people) a flare.
My ESR increased when I was stressed over late husband’s health, but no symptoms of GCA whatsoever…..so I know it wasn’t a flare… but doctors sometimes automatically assume it’s your disease, when it’s not.
I just don't know how to put all this new found info into practice without blatantly calling her decisions into question, which in the context of good patient / Dr relationships, I am VERY reluctant to even consider.....
I have to get off the computer now, but FOR SURE will be checking in again tomorrow morning.
You can't - but accept the Actemra bearing in mind it works for HALF of patients with GCA to get them entirely off pred. That is because there are at least 3 possible causes of the inflammation in GCA - and Actemra only works for the main one. It will get you to a lower dose - it may not get you off pred altogether.
Hi PMRpro, I have been reading all of these comments initiated by Ghost123UK and I want to say just 2 things.......... firstly, I think you are all so damn wonderful with your knowledge and understanding of GCA and everything to do with it, it is you who have given me the courage to face each day, and sadly not my rheumatologist, though I listen to what she says and afterwards I analyze it through this site !!! I have been reducing from 65mg and now down to 1.5mg but have taken it slower than she wants me to, no flares after 10 months of reducing...fingers crossed. I have been on Actemra for those 10 months and sadly caught Covid 2 weeks ago....been really sick but hopefully on the mend. Secondly, I wonder if you can enlighten me on your phrase "at least 3 possible causes of the inflammation in GCA". I would really like to know your thoughts on this. Thanks again to everyone on this amazing site. x
Just arm yourself with good knowledge -and from here you’ll get the patients experiences obviously -and real facts -not what’s in the textbooks.
How you approach your doctor is your choice, but negotiation rather than confrontation is obviously the way forward ..and some doctors are more prepared to do that than others.
I started TCZ injections a few weeks ago and am experiencing side effects of cold sores, mouth ulcers, sore and runny nose. Anyone else had these and did they go as I'm told they should.
Sorry I can’t answer that, as I’ve never been on TCZ , and as you’ve asked the question in the middle of a thread, not sure how many replies you’ll get, apart from PMRpro who will read and reply.
Basically - no! The only thing I would complain of is fatigue. I probably did have a stuffy nose at the start but it has gone away, Had a couple of UTIs and missed the TCZ the first time, second time it was gone before the next jab. But I can't say I have had anything for more than a few weeks.
I've not experienced those side-effects however I have hayfever for the first time ever, that produces symptoms similar to those you describe.
Hello,I have just had ultrasound on my head and thankfully this showed no signs of GCA. As I have had low grade tension headaches every day, and tension in my jaw and neck, I was greatly relieved to hear the result. I'm surprised that only your ESR results are being relied upon, for a diagnosis, though these do show the infection level of your polymyalgia. I started out with a level of 104, just a year and a half ago and have been taking prednisolone ever since and have now reduced to 8mg. I was frightened to reduce the pred further, because the headaches increased, when I did, but to my relief, it seems GCA is not present and now other reasons are being looked for, e.g. an X ray on my neck is envisaged. No other medication has been prescribed as yet.
They are just as likely or ore so to show inflammation in GCA but not in isolation - symptoms are king, irrespective of blood markers being high or low.
I was relieved to find that there were no signs of GCA in the ultrasound. I was hoping that this would be a definite sign that I can reduce my steroids without fear of GCA. I have a stuffy, tense head every day, which makes my head slightly achey. My jaw and neck are also affected. An X=ray on my neck has also been proposed.
There is no way you can predict whether GCA will appear but it really isn't that common in PMR patients - something like 1 in 6 with PMR go on to develop GCA but that is including the patients for whom PMR is a symptoms of their GCA right at the start.
But unfortunately, looking at the temporal artery only speaks for the temporal artery. You will just have to taper the pred very slowly and see what happens with the symptoms.
Where is the pain in the neck and jaw? Does this relate in any way:
I have had tension in neck and jaw, but it’s hard to know whether it is all related. Re tapering I will be cautious. I’m staying on 8mg for a while, as the head symptoms, tiredness do increase when I reduce the steroids. My ESR is 33, not particularly high. I was hoping that a negative ultrasound would be a good sign.
I started out on my PMR journey June last year with an ESR of 104, so it’s low in comparison to that. Last November my ESR was 16 but since it has been 32 and then 33. Maybe my symptoms are just due to PMR. Goodness knows 😀 I’d love to be able to. say goodbye to steroids. Still I’m not the only one who thinks that.
You should be aiming for under 20 for your ESR, above that and rising - it could well be a flare because the dose is slightly too low. 33 is high for anyone - it is definitely high for you.
I was diagnosed with GCA in March 2022. Started on 80 mgs of prednisone, started self injections of Actemra in August 2022. I have had no side effects from the Actemra. I am down to 7.5 mgs of prednisone, with no flare ups as yet, thanks to the help of Actemra. Due to possible side effects I have complete bloodwork done every two weeks.
Hi ghost123uk you have a lot of great info here from people who really know what they are talking about. I learn every time I get on the site and have asked lots of questions. I did want to share some thoughts as someone who has dealt with a variety of autoimmune conditions.which started in the mid '80's, and have seen many docs over the years. I am replying because you mentioned that you were before your GCA diagnosis healthy. So I take that to mean you have not had to deal with doctors too much. I am concerned that you don't feel comfortable challenging them. With a smaller knowledge base than others here I wonder about the diagnosis to begin with. If it were me I would want to.have a conversation....inflammation levels should not lead to a diagnosis aline. Mine is always high. Symptoms are key to me for treatment.
I have been through hell because my rheumy has pushed my pred dose reduction too fast. I didn't understand how it worked butbI do now and it has made me worse. But I go by symptoms. I can't get below 23.5 for my PMR. I tried leflunomide and that drug scared me....but regardless I did it and believe it or not I got so much worse. So next week I am working with the doc to get labs and set up Actemra infusions. I will ask her what type of symptoms do I need to look out for in relation to the black box type warnings. And as already mentioned it can be stopped unlike pred. I hate the pred but it has helped some. The side effects are awful. But I cannot imagine even being upright without it. My doc had a meltdown when I didn't reduce like she thought. But I told her why. I have to take care of myself first. It's.not challenging her expertise but there are a lot of docs who hate the one thing that helps GCA and PMR. I think you should ask them to walk you through the diagnosis. What are the symptoms? Are you on the same.page?
Anyway you see.what I am trying to say. You are your best advocate. Question.
Good luck with everything. If you go on Actemra I hope it does its thing with no side effects.
I am in the US. I have been on full dose Actemra infusion for 18 months. I would like to stop taking it. I have uncontrollable high blood pressure, 180/103. triglycerides are through the roof. I have several comorbidities that would exclude use of Actemra, but rheumatologist has me on it anyway. I have a very stubborn case of GCA/PMR, 13/20 plus years, with no hope of ever getting completely off of prednisone. I am on 5mg. now, but am thinking the prednisone is the less of two evils. But then again, my blood pressure issues could be from inflammation. I just wish there were tests that could be done to define what is happening to me, i.e., is it the Actemra or the illness. Which rock or hard place am I dealing with. I am showing signs of heart failure on blood work. BP will not go down no matter which combinations of blood pressure medication I take. I have a chronic adenoid tissue infection causing sleep apnea. I have diverticulosis, which should exclude use of Actemra. I am a cancer survivor, endometrial, which should exclude Actemra. The drug did work to bring down SED rate at first, and it helped with some pain issues, but at this point I am wondering if it worth it.
The poster has already had MRI and PET-CT scans which showed no signs of GCA (a,though some symptoms]….and a biopsy is a bit hit & miss…..very often produces a false negative if no affected cells in sample taken.
..and as someone who had GCA -and lost sight I can tell you categorically that my temporal artery was not affected, so if I had had a biopsy, it would have been a false negative.
Evidently rheumatology was of minor interest there. I left before they could do more damage to me.
They were annoyed that I caught MRSA in the hospital- there was a major breakout- I believe they get fined for hospital infections. I was lucky I didn’t die from MRSA.
They should have paid me for the abuse & infection!!!
It all depends where the GCA is affecting - and it doesn't have to be the temporal artery. It also depends on the quality of the biopsy - a long piece helps. But even so, GCA causes what are called skip lesions so there are sections with no giant cells. No giant cells in the secions you look at doesn't mean there aren't some somewhere else.
No - because it can't access arteries through the skull. Part of the procedure requires being able to compress the artery with the u/s probe which restricts which arteries can be examined.
GCA doesn't affect all arteries evenly - it can be in certain areas and even then, it forms skip lesions so there are areas of an artery that won't show the effects.
Hi ghost123uk, I'm coming to this a bit late but just want to reassure you that, after over 2.5 years on Actemra, I am down to 0.5mg pred with only side-effect being mild neutropenia which is controlled by spacing by injections to 3 weekly jabs. I am fortunate that it still works on this regime. I probably could have tapered more quickly, as per Rheumy instructions, but I have chosen the slower path. I have had no infections but Covid, which was very mild. I am grateful for Actemra, it has changed my life.
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