Suffering from GCA or Prednisolone

[Stkeyna]

I am a 68 year oldman who has suffered from polymyalgia/ giant cell arteritis for 11 years to date...or have I? I know I had polymyalgia for 1 year which then turned

into GCA - as confirmed with a pet scanned ( I was told I lit

up like a belisha beacon). So that was over 9 years ago and I have pushed

on taking prednisone as prescribed until 3 years ago when it was

thought sensible to have another pet scanned. The scan reported ‘tracer

uptake in thoracic aorta extending into other areas and signs of

partially treated vasculitis’. My consultant told me to keep taking prednisolone. Shortly after this I moved house and

moved consultant.

With the latest consultant we really just carried on with prednisolone

which has really gone from 10 to 15 mgs and at the moment I am on a figure

of 15. Six months ago it was mentioned by the consultant I might be a candidate for

tocilizumab although he wasn't that keen due to side

effects. It was deferred for 6 months. However on my latest visit

suddenly, the experienced consultant announced that I may not indeed

have GCA anymore and that I may have something else or indeed

a negative reaction to taking too much prednisone. Some symptons

of GCA and prednisolone side effects are very similar. I suppose I should have felt slightly elated but, in fact, felt very deflated. You mean I have been taking all that damaging prednisolone for possibly no reason my brain began shouting while I spoke calmly to the consultant!!

During the most part of my battle with giant cell my blood levels have

been returned as normal. I have battled, for most of the time, with

headaches, dizziness, tiredness, bloating and feeling rather unwell.

The consultant is now sending me for another Pet scan. He has told me to stay on prednisone for the scan and not come off

the drug which is the exact opposite to the previous consultant. I

wonder can you get the same clear results if you are on prednisone

when having the scan done???

Anyway I don’t want to drone on but if anyone out there has any thoughts, or indeed, has a lot of experience with prednisone and its side-effects - or withdrawal symptoms - then I would be pleased to hear from you. Could I really just be suffering from prednisolone!!??

Include quoted text with reply

[MaryA_]

It all depends on what amount of prednisone you are on. From what I understand is that below 10 mg. If you have it , it will show up on a PET scan, which is exactly what happen to me. I had scan for a different health reason. Was told “ your PMR showed up on the scan”. 🤭. maryanne

[Stkeyna in reply to MaryA_]

Many thanks. I am on 15mgs! Hope all is now well with you. Best, Ian

[PMRpro Ambassador]

Three years ago you apparently still had signs of large vessel vasculitis - that does not have to be giant cell arteritis but it is difficult to say because it is a tad difficult to take biopsies without open heart surgery. So 3 years ago you DID still need pred.

If you are currently on 15mg pred and are to stay on that then a PET scan may provide somewhat doubtful results - even 10mg pred has been shown to suppress the result. And that means that there may be inflammation that isn't showing up because of the pred. Your previous consult was obviously better clued up technically!

I got a free-to-air pdf of this paper:

[18F]FDG positron emission tomography in patients presenting with suspicion of giant cell

arteritis—lessons from a vasculitis clinic

Stephan Imfeld1†, Christof Rottenburger2†, Elke Schegk3, Markus Aschwanden1, Freimut Juengling4, Daniel Staub1, Mike Recher5, Diego Kyburz3,Christoph T. Berger5, and Thomas Daikeler3

by googling "suppression of PET scan by steroids", The link was

academic.oup.com › ehjcimaging › article-pdf › jex259

but I didn't get that link any other way and copy and pasting it into my search engine doesn't work to get the article pdf - and the link that did work is the sort that have a habit of timing out!

The blood markers are also a bit doubtful as a clue - if you have been/are on enough pred to suppress the inflammation then the markers won't show anything as the changes that produce the raised numbers are in response to the inflammation at an adequate level.

I've been on pred for 10 years, had PMR for 15 years - I suspect I am in the same position as you, being a case of LVV that presented as PMR with some odd cranial GCA symptoms for some weeks at some point in the non-pred PMR stage. I didn't know then what I know now!

I'm just considering it is time to discuss it with my rheumy - it is a case of the devil and the deep blue see I suspect. I recently had a flare of PMR stiffness, I think it is still around and being pretty well managed with something between 10 and 15mg. But who knows?

Which hospital are you under? Maybe we need to get together and ask for a study on us!

[Stkeyna in reply to PMRpro]

Many thanks again. I always feel you know more than the consultants!! I am at a hospital in Surrey and under a consultant whom I think you regard rather highly.

Anyway what you say is what I feel - not always from research though - more from my gut experience. Some of that being literal! Yes my consultant has always dismissive of my blood issue results until this last visit - yesterday - which was a bit of a surprise even shock!I was trying to understand his change of heart - monetary reasons!!

I was just wondering if you have had the same problems as to working out what are the prednisolone side effects against your PMR sysmptons. When my started I use to have joint pains etc then I had a week of terrible knife like headaches - which I suspect was the start of the GCA or large vessel vasculitis? Since then all I have had are reasonable headaches, fatigue, dizziness, breathless at times, confusion in thinking and bloating. Also any thoughts of how I can work out what is what if going for the pet scan is not going to offer much? I have gone up from 12 mgs to 15mgs in the last two weeks and not felt much difference - I have had a cold though whether that would alter things - was very breathless. The consultant was dismissive of the cold! I wonder what your problems are when you have a relapse? However if my problem was purely prednisolone would I not feel poorly all the time. I have days I am okay and then down I go. Would too much pred. work like that i.e. up and down cycles?

Appreciate any further thoughts

[PMRpro Ambassador in reply to Stkeyna]

How strange - I would want to know his real thinking if he thinks the pred should be left where it is.

Unlike others I really cannot say I have any adverse effects I would even think of wondering were due to pred - if you see what I mean. I can account for any dodgy days with other things - like atrial fibrillation! I have had adverse effects with corticosteroids, with methyl prednisolone, that was awful but never worse than the 5 years I had with no pred. Nothing identifiable with prednisolone or prednisone.

We have mentioned tocilizumab but I have some added extras what make it more problematic.

[Stkeyna in reply to PMRpro]

Ah added extras are not what you need . So sorry to hear about those. As regards our consultant, and his consulting, as to staying on the pred. I think he feels it will release the anger of the GCA beast and to be fair that did happen to me. I was on 7mgs three years ago but I came off for the scan and I suffered badly afterwards. In the three years since I have not been able to duck under that 10 mgs bar!

Anyway you do a sterling job of help and advice on Healthunlocked so myself, and I am sure, many others are very grateful for all you expertise and help!

[PMRpro Ambassador in reply to Stkeyna]

I have been in close contact with someone with TB in the past. So I would have to add abx to my arsenal for the first 9 months of TCZ - hum ...

[Stkeyna]

Thanks for the response. No I have not got on the tocilizumab trial. I was keen to do so as I felt there is no where to go and the side effects of the pred at 15mgs are getting me down. However consultant appears to have had a change of heart. He now says he will look at the pet scan results and decide however if I am on 15mgs of pred. then not sure how much of the inflammation will show up!!

[HeronNS]

This is an interesting read:

uptodate.com/contents/clini...

[Stkeyna in reply to HeronNS]

Many thanks for that. I wonder are we in touch with any contacts/surveys in Norway as they seem to have a higher rate of PMR hence valuable experience!

[HeronNS in reply to Stkeyna]

Interesting question. Why not ask it as a post with Norway in the title? You never know....

[HeronNS in reply to Stkeyna]

Down the page is information about "differential diagnosis" - things which manifest as PMR but the PMR symptoms are indicative of something else.

[Stkeyna in reply to HeronNS]

very helpful and kind! Just reading that now but they all seem to indicate aches and pains which I no longer suffer from. My aches seemed to drift off when I moved from PMR into my GCA or vasculitis period - could be deemed my blue period from moods rather than any artistic talents!! Then the headbangs and tiredness increased!!

[HeronNS in reply to Stkeyna]

Perhaps it's something else entirely. Years ago I did a lot of reading about allergies and chemical sensitivities as one of my children seemed to be sensitive to certain foods as well as food colouring, and I also get headaches from some things, especially chemicals added to packaged foods and toiletries. Could you be sensitive to something in your environment or diet? Not a full blown allergy, but something which affects you? It can be a devil to track down. One of my friends was allergic to something. Her husband worked out a way to use a computer to track every single ingredient she ingested and it turned out to be cinnamon! Her favourite herbal brew contained cinnamon so she'd been miserable for months, but it had been nearly impossible to pinpoint.

[Stkeyna in reply to HeronNS]

The thing is I have been diagnosed with vasculitis/GCA and was told when scanned that I lit up like a belisha beacon - so at one point I must have had it pretty badly. The second scan showed it was more controlled and that was three years ago. The consultant now says I might not have it but let us have another scan to see...but don't come off the preds! The side effects of the pred or the vasculitis/GCA sysmptons are - for me - very similar!

[HeronNS in reply to Stkeyna]

Thing is, these sensitivities can cause inflammation. I guess that makes sense when you think about how skin rashes can be allergic reactions and they are tamed by steroid creams. Why not something similar inside, unseen, from a substance we take in through our breath or food, or even absorb unknowingly through our skin? Now that I consider this idea I wonder if that's why my inflammation markers remain a little above normal even when at their best, maybe low grade inflammation is being caused by something I'm sensitive to in my environment, maybe nothing to do with PMR, although it might have made me more susceptible to developing PMR when I was under extra stress?

[PMR2011 in reply to Stkeyna]

Have a look at this:

videocast.nih.gov/Summary.a...

Lends credence to the idea that Pred May be treating symptoms but the disease is still causing some damage. I’ve been on TCZ for 2 years and feel pretty good. No side effects, just very germ conscious! Had GCA 3 years and PMR for 9.

[PMRpro Ambassador in reply to Stkeyna]

PMR and GCA are the same illness, but at different points on a spectrum. The PMR wasn't obvious because you were on a high enough dose of pred to manage the lower disease activity's amount of inflammation.

academic.oup.com/rheumatolo...

[Hidden in reply to Stkeyna]

If its anything like an experience a Danish member has had I can do without it. I don't want to get the link again as my news feed is full of Danish news since I searched for some further info... Exhausting getting rid of them. 😉📰

[Stkeyna]

Thanks for sharing that. I do feel the negative impact of pred. might be a bigger issue than many are aware of and I don't just mean the long suffering patients! Anyway the 'toc' drug does appear to be the way to go - from the research I have found. All crossed for your success! I might be joining you at some point in time - tic-toc!!

[Yellowbluebell]

I was always under the impression that pred manages inflammation not hide it. Well thats what my rheumatologist told me. I would assume if pred only "hid" inflammation it would still be there causing me pain.

[Stkeyna in reply to Yellowbluebell]

Thanks for your response. I think it controls it but they may mean enough of a reduction in some people to 'hide' the inflammation as regards, blood markers and scans etc.

[PMRpro Ambassador in reply to Stkeyna]

It's the word HIDE I object to. Does thyroxine "hide" hypothyroidism or insulin "hide" diabetes?

[Yellowbluebell in reply to PMRpro]

No exactly.

[Stkeyna in reply to PMRpro]

Fine that's fair enough. I was just trying to make the point that prednisolone doesn't just manage in the case of scans and blood tests.

[PMRpro Ambassador]

No-one said they were. But they are rather often in vasculitis.

[Hidden]

How confusing! For what it's worth, PMR and GCA are just labels and the diagnostic criteria are based on very non-specific symptoms and blood results. Given the number of people I know of who have one or both of these conditions, I'm amazed by how little research there actually is into what the diseases really are. PMRPro says that there is a spectrum of disease, which is clearly true. The range of experiences here leads me to believe that there may be be several different disorders on this spectrum, not just PMR and GCA, and that more research needs to be done into alternatives to prednisolone.

[Stkeyna in reply to Hidden]

Many thanks and totally agree!

[PMRpro Ambassador in reply to Hidden]

What makes you think there is little research and little work on alternatives to pred? Both are not only on a spectrum of disease but are also heterogeneous - it is becoming apparent that more than one inflammatory pathway is involved which means that amongst the biologics more than one might be required for any one patient simply because they are so specific in their action.

But you can hardly blame the medical community for slacking - the techniques to identify and see the causes of the damage have only been available for a relatively short time.

[Hidden in reply to Hidden]

Have you seen all the Research Data from Sara_KeeleUni

You’ll find it in Pinned Posts

[Hidden in reply to Hidden]

pmrgca.co.uk/content/polymy...

healthunlocked.com/pmrgcauk...

[Hidden in reply to Hidden]

Thanks for those. I still think it strange that we are stuck with much the same concept of the disease as when I was at medical school in the early 70's. If you think of the advances in other connective tissue disorders and autoimmune diseases it makes PMR and GCA look a little like an orphan.

It's my opinion and as far as I'm aware there is no reason why I shouldn't express it here. There seem to be a lot of people who are stuck on high doses of prednisolone and all that entails. This is not the standard model of either disease and must either question the model or whether such people may have a different condition or whether there are more subtypes than just GCA and PMR.

If I'm causing offence, then I'll leave the forum.

[PMRpro Ambassador in reply to Hidden]

There are GCA/PMR research groups who DO think there are varying versions of both - I have said so about PMR for at least 8 or 9 years. One of the leaders of a UK group said to me in an email only a week or two ago that she also now believes there are different versions of PMR which would account for the variability of experience both of the disease but also in response to alternative treatments.

I have seen comment in several places in the medical literature that GCA is a heterogeous condition for at least a decade and it has been known for that long that there are at least 3 different sources of inflammation, involving the IL-6 pathway and 2 pathways mediated by Th17 and Th1 cells. Th17 activity is targeted by GCs but not the Th1 - giving rise to resistant GCA. No gene has been identified that differentiates between the different sorts - there isn't even a reliable biomarker as yet.

I still believe that the primary reason that GCA and PMR remain orphans is the demographic of the perceived age group affected: predominantly females over 65. Until now we were likely to be retired by the time it was acknowledged we had the disease so were no longer of economic interest. It has taken quite a fight by the charity to get the age group lowered to over 50s - and we still hear of patients told they are too young for GCA when in their 60s.

The knowledge about GCA and PMR has progressed a great deal since the 1970s. What appears not to have progressed is the knowledge base and willingness of many of the doctors involved to acknowledge that - and it can't be anyone else, they are the interface with the patients who then dismiss the evidence the patients provide. Few of us have direct access to the research groups - those of us who do are doing our best.

[Hidden in reply to PMRpro]

I think I felt that my comments were being perceived as criticisms. There are a number of drugs which could help with PMR and GCA but there seems to be little interest in trialling them. There also seems to be an idea in the therapeutic community that you have to come off the steroids before starting a new drug. For most if us this is an impossibility as it would lead to an intolerable increase in symptoms for a very prolonged period. In reality you have to start the new drug (methotrexate, IL6 antagonist, for example) before stopping the prednisolone.

Again just thoughts for what they are worth.

[PMRpro Ambassador in reply to Hidden]

Which drugs do you suggest then?

Methotrexate is by no means an answer - it seems to help some people reduce the dose of pred but it doesn't appear to replace pred. I know quite a few people on it or who have tried it without success including people who were on it for RA and who subsequently developed PMR or GCA nevertheless. But it is almost always started in tandem with pred in the hope of it being easier to reduce the pred dose. There have been 3 small studies done on its use in PMR in the past which were inconclusive. One done in Italy with a 5 year follow-up did find it reduced the oral dose of pred over a period of a year or more but at 5 years there were no differences in the incidence of adverse effects of pred reported. So one is left to question the advisability of adding another potential layer of adverse effects together with the immune suppressive effects - immunologists are expressing considerable disquiet about the potential long term consequences of interfering with the immune system, citing increased rates of cancers, amongst other effects, when multiple immunosuppressants are used concurrently.

There has been a large Phase 3 clinical trial with tocilizumab in GCA which was reported in the last couple of years and shows great promise for about half of patients - the ones, one assumes, with pure IL-6 involvement. The other approx. half usually manage to get to a much lower dose of pred - but at the expense of an extremely expensive and potentially risky in terms of adverse effects biologic drug. Other IL-6 inhibitors have been trialled in small scale trials - apparently as promising as tcz, anti-TNF agents don't work - they are specifically warned against in the Guidelines. Leflunomide appears promising for PMR - but again, it doesn't work for everyone and has some unpleasant potential adverse effects too. One small scale report found 21 of 23 subjects achieved remission - but it wasn't convincing enough for it to be suggested in the Guidelines despite the author of the report being on the committee.

All this has been discussed frequently on the forum - especially the tcz/Actemra story. But in the UK the cost is likely to prohibit its use for PMR for some considerable time. I could probably have it if we applied (I'm not in the UK) but there are other considerations and it isn't suitable for everyone, including me possibly, so I haven;t pushed it as I feel and do very well on Lodotra.

Ooops - forgot to mention that a group in the UK is hoping to get funding to do a more highly powered study of the use of methotrexate in PMR. It is already apaprent that in GCA it is of little use unless started within the first month of pred - though why that should be so isn;t clear.

[Hidden in reply to PMRpro]

I mentioned methotrexate because i have seen trials. There are drugs like sulphssalazine and azothioprine which have a tested safety profile and I ave posted one trial which seems to show that chloroquine and hydroxychloroquine may be effective. Finally there seems to be a body of opinion that unresponsive PMR may actually be PMR at all.

Why does this feel more like an exam than a conversation?

[Hidden in reply to Hidden]

There must be some literature as some members have reported being prescribed or the possibility of prescribing them. I just search using each name and one had 68 posts that mentioned the drug (under different names). You may just find them under treating auto immune or inflammatory diseases online. It's just a matter of digging it out and checking clinical trials sites.

[Hidden in reply to Hidden]

Maybe.

But are they specific to PMR/GCA? my issue, which is not with anyone here, is that a lot of people with the condition appear to be managed by rheumatologists and others with little knowledge or real interest in the condition, which is why they come here for help.

In my years in medicine I came to realise how little of what passes for good practice has a genuine evidence base. I encountered many people who had undergone spinal surgery with no relief when clinical trials showed it was unlikely to work. Doctors still overprescribe antibiotics. We have the opiate scandal in the USA and to a lesser extent in the UK. I won't go onto detail about the explosion of prescriptions for psychotropic medications.

There is lots of good stuff going on in the world of medicine, but I still think that many of us are short-changed by our doctors and miss out on optimal treatment. I believe we should question everything. If we can't get the help from primary care, then go to secondary care. If that doesn't help then try a teaching hospital if you can get the funding.

The best advice for anyone with MS or advanced cancer is to get on a clinical trial. I'm thinking that seems to be the best advice for anyone with difficult PM/GCA.

Am I wrong to say this?

[PMRpro Ambassador in reply to Hidden]

No, probably not wrong. Although I'd say you are living in an ideal world and don't really seem to understand how clinical trials and drug development work.

There are clinical trials but it may not be that easy to get included - you have to live near the/a centre for a start and be in a position to attend as required for monitoring. You have to fulfil criteria for the diagnosis - I don't fulfil those criteria for PMR, my blood markers have never been above the level they set so even if my rheumy set up a trial a mile down the road, I wouldn't/couldn't be included although I would be first in the queue. And they cost a lot of money. Then there is the time scale.

The first IL-6 inhibitors are just emerging from patent - that will make a difference. Trials come in various phases - and there are now/have been pilot studies on various monoclonal antibody drugs. But each of those takes several years to recruit meaningful numbers, complete the study and draw the conclusions before proceeding to the next stage.

You mention evidence based management - that is exactly the reason those other drugs aren't used. There is inadequate evidence. None of them target the mechanism - the drugs that target the mechanism are unaffordable for widespread use, are not without risks and you currently would need more than one for some patients.

And above all - do YOU question your doctor about the best approach? Most of us have few options: the GP and the local hospital with a long wait with no guarantee you will get a good doctor at the end of it who you can see regularly. That is, unless we have enough money to pay for private treatment when you do at least get to see the same person repeatedly. Given that the few who have gone that way because they had private cover have had to give up at the first renewal date for their insurance when it went from some hundreds a year to thousands as they were no longer an acceptable risk it doesn't seem tenable. Many of the members of this community are retired, many living on restricted incomes and a few dependent on benefits. Or is my realism so unacceptable for public consumption?

[Hidden in reply to PMRpro]

Why would you assume I know nothing about clinical trials? I have been involved in medical research and know all about design of clinical trials. I do wonder what I have said to upset you and would expect you as a moderator to take a more measured tone. There is nothing wrong with realism just as there is nothing wrong with idealism provided they are both within reason. I can see that my thoughts are offensive to the moderation team here and am cancelling my membership of this group.

[PMRpro Ambassador in reply to Hidden]

I'm sorry if you find my writing style an exam - I'm merely asking about your "finds" in the same way I would ask my peers on the research groups because having read about most of the steroid sparer trials relating to PMR there really doesn't appear to be much that is convincing enough to entice the dozens of experts in the committee drawing up Guidelines to recommend them. Aza was the subject of one poorly powered trial for example. The basis for the recommendations is explained in the paper. But part of the role of the forum IS to examine any options for managing PMR better - not just lifestyle adaptation but also what the medical community offers us. So if you know something I don't, surely it is fair for me to ask? And equally, since I have met all these studies you have mentioned so far. isn't it fair I should pass on the results of the discussions I have been party to?

Anecdotally, none of those drugs has shown much promise either - and they do all have adverse effects that quite often lead to them being discontinued when they are tried in patients with autoimmune disorders that they don't target. None of them target the mechanism of the disease - at least, as far as can be seen. Their role is more as an adjuvant therapy.

But however you look at it, as we frequently point out, PMR isn't the disease itself, it is the external expression of an underlying condition that creates the inflammation that causes the symptoms. Of course there are varying conditions - but I'm not sure it is true to say "it isn't PMR". That is why the initial differential diagnosis is important and sometimes it isn't conclusive either. In that case, the mainstay of treatment is corticosteroids because no other options have been identified that work reliably and are cost-effective.

The alternative is to leave patients in pain and disabled - and in some cases that disability is considerable. One lady spent nearly 2 years practically confined to bed and requiring a lying ambo to travel to medical appointments - before the PMR symptoms progressed to those of GCA and a diagnosis was finally made. In the case of GCA it is simply unethical to not use corticosteroids initially - they are the only proven option to reliably reduce the risk of permanent loss of vision.

You seemed to imply earlier that the medical community doesn't do anything - and I'm just standing up for them and saying, yes they do. With a bit of evidence.

[Hidden in reply to PMRpro]

I accept your point, but when you contrast my experience with prostate cancer and that of PMR, it is clear that the amount of activity to seek improvements to prednisolone for people it doesn't work for is relatively nugatory.

Actually I don't see the evidence you talk about. And finally please don't misquote me - I have never said that prednisolone is not the obvious first choice. Please understand that my remarks are about those people for whom prednisolone is not working or not tolerable. In some of those people it could be a different disease for which a different drug may help. I am asking for open minds.

[Hidden]

I'm not blaming anyone. There is no need to take offense.

[PMRpro Ambassador in reply to Hidden]

Why should I take offence? And as far as I'm aware it is a figure of speech - not literal ...

[Hidden in reply to PMRpro]

What is a figure of speech?

[Yellowbluebell in reply to Hidden]

Figure of speech according to the dictionary

"a word or phrase used in a non-literal sense for rhetorical or vivid effect."

Hope that helps answer your question. YBB

[Hidden in reply to Yellowbluebell]

I wax just wondering which aspect the post was a figure of speech. I am aware of the concept.

[Yellowbluebell in reply to Hidden]

Oh so just a rhetoric question then!!

[Hidden in reply to Yellowbluebell]

No.

[Hidden]

A very good analogy