Interesting Day?: Today I had my 3 monthly face to... - PMRGCAuk

PMRGCAuk

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Interesting Day?

Helipad
Helipad

Today I had my 3 monthly face to face appointment at Southend Rheumatology department and I had this with Prof. Dasgupta. Good news was my GCA seems to be responding to treatment but he told me that I also have Fibromyalgia and not Polymyalgia as the previous doctor told me. I know this forum is not for this but I just wondered if anyone else had Fibromyalgia and GCA.

61 Replies

I’ve had Fibro for years before GCA which only popped up in fairly predictable situations like poor sleep. Now it takes very little to get it.

Helipad
Helipad in reply to SnazzyD

My sleep is getting really bad, I now seem to have at least one night a week where I don’t sleep at all.

Helipad
Helipad in reply to SnazzyD

How do you differentiate between PMR and Fibromyalgia, apart from not responding to steroids. I also have CRPS and this doesn’t respond to steroids either, in fact it has got worse since starting in the steroids.

SnazzyD
SnazzyD in reply to Helipad

I don’t think I’ve had PMR but I’d describe Fibro as mostly ‘cloud pain’ where one can feel pain all over but it isn’t easy to place and I don’t get loss of function. Moving about helps. My Fibro pain points are usually well in evidence too. If I can’t get to sleep it kicks in around 1pm like clockwork and oddly if I don’t get to sleep by 11pm I usually can’t sleep at all; it’s like my body goes into another gear.

Helipad
Helipad in reply to SnazzyD

Oh wow, someone else who has the same sleep issue as me. If I’m not asleep by 11.30/12. that’s it I’m awake for the whole night. People just can’t understand that and I do get that but at the moment it’s happening at least once a week. How bad is it that I feel excited that I now know someone else who has this problem.

SnazzyD
SnazzyD in reply to Helipad

Oh I totally understand your guilty joy there. My Fibro began after 6 months of terrible sleep deprivation due to my baby in 1998 who never slept more than an hour (turns out she had ADHD) and I also developed quite spectacular ectopic heart beats. Sometimes I wonder if my brain has been irreversibly re-wired by years of night shifts but my last one was about 1993. My sleep is atrocious at the moment but there are other factors fanning the flames. I have a life-long condition where my bone marrow goes into overdrive every three weeks for about 3-5 days so sleep is impossible due to my metabolism going nuts. Oddly my Fibro doesn’t trouble me too much then but it is like having the false energy of Pred. My real problems really started after having very likely Covid in March 2020. I also stopped Pred in August but I have no idea what that has done if anything. Being in lockdown since last March, no holiday and living with my father-in-law who grinds me down too. My eldest daughter is leaving home on Sunday after 18 blessed months at home post maths degree. She’s like me, looks outwards, is a bit of a lunatic and has energyso she’ll be sorely missed. So, a bit like being on high dose Pred, I have stopped fighting it and try to adjust until something lets up.

Helipad
Helipad in reply to SnazzyD

Wow you really have been through the mill and I do feel for you. Not connected I know but my daughter never slept for more than a couple of hours, apart from 2 nights in 4 years, hers was due to a milk allergy as I eventually found out through getting private tests done, it was a long time ago when the thought of milk not being good for you wasn’t even dreamed of.

PMRpro
PMRproAmbassador

On what grounds is he saying it is fibro and not PMR?

Helipad
Helipad in reply to PMRpro

I think because I have pins and needles/tingling and burning sensation in both feet, shooting pains in my leg and knee, tingling in hands which I think you wouldn’t normally get with PMR, along with the usual chronic headaches, constant fatigue, pain from top to bottom. Steroids have made no difference either.

PMRpro
PMRproAmbassador in reply to Helipad

Now the last statement makes sense ...

tangocharlie
tangocharlie in reply to Helipad

Tingling hands is a common complant with PMR, but I don't know if it's impingement due to something trapped, worn shoulder joints, some people get carpel tunnel

Helipad
Helipad in reply to tangocharlie

It’s actually my feet that are worse but because I have CRPS in my right foot and ankle, which is another condition that causes chronic and bizarre pains, some of which are burning, tingling, shooting, stabbing etc. It’s getting very hard to know what condition is causing what. I do know that CRPS does not respond to steroids as my ankle has been even worse, didn’t think that was possible, since starting on the steroids.

tangocharlie
tangocharlie in reply to Helipad

I have swollen feet ankles and lower legs- which are also lumpy and painful, and some of the oedema is responsive to steroids. Doctors just shrug and say wear support stockings. They ruled out heart failure and that is all they are worried about. It does affect my walking and balance and some days it is hard to get shoes on

Helipad
Helipad in reply to tangocharlie

Oh that sounds so horrible and I really feel for you. The CRPS has left me with no balance on my right leg and I have to use a crutch just to keep me walking straight and upright. Some doctors are just so insensitive and don’t even attempt to have any understanding of what you’re experiencing. It really is luck of the draw if you find a good doctor who is willing to listen to you and take you seriously.

tangocharlie
tangocharlie in reply to Helipad

I'm one of those people who won't be fobbed off and won't stop until I get to the root cause of something. One good thing that has come from me getting PMR is that I have 'found my path' which is to be an advocate for myself and others suffering, and not accept the status quo of indifference we have been dealt with for so long!

PMRpro
PMRproAmbassador in reply to Helipad

Now I would say that you have an autoimmune syndrome called Helipad disorder - there is a massive overlap betwen a/i disorders and while recent years has seen the former rather blanket diagnoses made on the basis of common symptoms being sub-divided according to lab markers, there is a lot more commonality than difference I think.

Helipad
Helipad in reply to PMRpro

Love it 🤣

tangocharlie
tangocharlie in reply to PMRpro

Under the current medical system, if your body 'goes autoimmune' it is defined by what organ it affects most and then dealt with a particular specialist if you are lucky, each symptom being treated in isolation. Yet the root cause is never treated - that for some reason your immune system has gone haywire and turned in on itself.

Helipad
Helipad in reply to tangocharlie

Exactly, there has to be some overlap when you have conditions that have so many common traits. When the Prof was asking me questions yesterday he wanted me to just focus on the answers that related to the GCA but that is extremely difficult when you have other conditions that potentially affect your complete body and you have pain radiating from so many different points and so many different types of pain, who can say whist originates from where?

tangocharlie
tangocharlie in reply to Helipad

I once drew Dr Mackie and my GP an annotated body map showing ALL the different bits of me that had gone wrong. I'm beginning to find out for myself that everything is connected, eg the bladder problems are IC, which commonly goes with other AI illnesses, the rashes are to do with an over-active immune system, probably MCAS, as are the swollen ankles. Yet as there are no autoimmune specialists, I must have had over 20 separate tests and investigations over the last few years, each looking at one little bit of me and saying 'computer says no'. The word 'idiopathic' is used a lot - yet another medical word that means 'we haven't an f'in clue what you've got'

Helipad
Helipad in reply to tangocharlie

Love it 😂 and so true.

PMRpro
PMRproAmbassador in reply to tangocharlie

I developed some sort of allergy but it is easy enough to manage - other than episodes of sneezing, are they also a symptom? I have bladder problems though. The a/i part of PMR caused atrial fibrillation. there are several who have mentioned arrythmias.

Maybe there is a closer relationship to Takayasu's arteritis than anyone has thought? But the fact remains - we are older so not as economically interesting/significant as a 40 year old. Though that will change once retirement age heads north of 70 ...

tangocharlie
tangocharlie in reply to PMRpro

I m pretty sure a lot of us have something going on with mast cells, possibly mast cell activation syndrme/disorder (MCAS). Dr Mackie said they see mast cell involvement with PMR and other rheumatic diseases in clinic and is trying to get the Immunologists involved but they are not interested - they only deal with Ig reactions. ONE of the possible root causes of histamine intolerance is inflammation from autoimmune conditions and another is MCAS, but perhaps they are not distinct but connected? When I look at the symptoms of MCAS, they are different in every case, but I tick a heck of a lot of the boxes and from other discussions and posts on here to do with allergies I'm not alone. I will do a post on what I have found next week. I'm taking the rest of today off and being more zebra!

sherib1
sherib1 in reply to tangocharlie

I am 74 years old and have had autoimmune disorders since I was 25. I see several different specialists for these and all refer to me as Ms. Autoimmune. Everything in the Rheumatology group are considered to be autoimmune. Fibromyalgia is also autoimmune. I was one of the first to be diagnosed in the U.S. with Fibro. Before 1983 it was called Fibrositis Syndrome. I was looked at like a crazy woman who wanted to complain about all over body pain. It took many years and many more cases for doctors to actually investigate what was really going on. It was decided that our bodies have a chemical, "substance P" that releases pain signals in the brain. There is no cure; just different modalities used to control the pain. Now, it is the least of my concerns. I have taken Prednisone and so many other drugs for the different disorders. Now, I am on Methotrexate and I don't like it very much. Actually, I truly hate needing to take all of the different meds that I do; but I still want to remain active (although most of us are not doing much these days because of the Pandemic).I have so much empathy for anyone who lives a life of pain, neuropathy, or anything that interferes with daily/nightly life.

Toast4
Toast4 in reply to PMRpro

Hello. I was diagnosed mid December with GCA after a biopsy and was immediately started on 60mg of prednisone and am currently down to 40mg and it has mostly alleviated the GCA. Looking back to January 2020 ( perhaps earlier) I began sneezing and thought I had become allergic to my cat but no allergy medications gave relief. I also had several eye episodes and hip pain. Once starting the prednisone the sneezing stopped so belief this may have been one precursor of GCA ?

PMRpro
PMRproAmbassador in reply to Toast4

Or an allergic reaction that the pred is suppressing ...

Toast4
Toast4 in reply to PMRpro

Perhaps. I am enjoying once again being close to my cat at least.

PMRpro
PMRproAmbassador in reply to tangocharlie

That's right - because they can only manage it symptomatically in many cases unless they have found a chemotherapy that sends the a/i bit into remission like rituximab in some things. For us there is a chance that will happen with tocilizumab - or possibly even better with another MAB directed at the IL-6 cytokine production since they do tend to be slightly different.

Because of the short-termism in the UK and their focus on QALYS they won't find out what works for us because we are old and that means we don't score highly in the QUALY stakes for funding.

Why does he think it is fibro rather than PMR? Do your symptoms respond to steroids?

Helipad
Helipad in reply to tangocharlie

I think because I have pins and needles/tingling and burning sensation in both feet, shooting pains in my leg and knee, tingling in hands which I think you wouldn’t normally get with PMR, along with the usual chronic headaches, constant fatigue, pain from top to bottom. Steroids have made no difference either.

Trutta
Trutta in reply to Helipad

Hello Helipad...dont normally look at the forums but happened to see this.. as briefly as I can... Diagnosed with pmr 2016..usual symptoms and had tingly numb toes for a few years before that. Had odd short pains in one hand. cpr/esr all back to normal with steroids.I was eventually told 2018 I was better but I knew I was not!! aches and pains, reduced mobility etc. I gradually stopped the steroids as they wernt doing anything apart from side effects & wonderful strong nails !Previously had had poor feet and OA in knee & foot..neither were checked and we all assumed not relevant

All this time I had Polymyalgic onset Rheumatoid.

1....All antibody tests were negative. 20% patients with RA are like this, called sero-negative.

2....I needed 40mgs Prednisolone to overcome initial pmr symptoms..this should have alerted them to a different diagnosis

I constantly mentioned increasing, by now bilateral, hand pain which was dismissed. An 3....MRI using fluroscopy would have confirmed diagnosis but this was not done until in 2019 and 3rd consultant later (private) he took one look at slight swelling over wrists and suspected RA straight away.

6 yrs on & the usual trial of various meds I am now on weekly injections of Biolosimilar & Methotrexate and hoping that the inflammatory process will eventually calm down though still active. incidentally...toes still tingly, more so, no one has ever given an explanation for this. nerve tests ok !

My current consultant is a wonder and it is important to remember this is a difficult thing to diagnose. Suspect Fibromyalgia is a general 'cover all' term.

lots of people get better so not saying you have RA but just to be aware as early treatment is crucial to avoid damage to joints

keep a record of your symptoms. go ready with a list of questions. I am treated on the nhs by the way and only paid for initial consultation...money well spent !

good luck and hope this helps someone in the same stressful situation that I was in

Helipad
Helipad in reply to Trutta

Thank you so much for that and will definitely start making a note of symptoms and I intend to talk to me doctor at my GP surgery as she is brilliant and I know she will do her utmost to get to the bottom of it all.

Could I just ask if you're an NHS patient as my appointment in 2wks is a telephone consultation!

jimcarlow75
jimcarlow75 in reply to Kendrew

My GP is still doing face to face NHS appointments for some people and I am lucky enough to benefit from that.Roughly every 6 weeks this is.

Kendrew
Kendrew in reply to jimcarlow75

Thankyou.I was just wondering why my appointment with professor Dasgupta next mon isn't a face to face one as yours was?!

Helipad
Helipad in reply to Kendrew

I didn’t realise you are under Southend Rheumatology as well. Are you part of the research study. Yesterday was the first time I had actually had my appointment with Prof Dasgupta, all previous face to face had been with research fellowes and all phonecall appointments are with nurses. The Prof and I had a little bit of a run in yesterday as I had rung the department about 2 weeks ago as I was in so much pain and the person I spoke to told me to up my steroid dose and raise this at my next appointment, which I intended to do. Well I got a massive slap on the wrist and told not to ring again and don’t up my steroids. I came away yesterday feeling really down and alone.

Kendrew
Kendrew in reply to Helipad

Sending you a PM

Yes I am. I have a telephone appointment roughly 6 weeks after every face to face appointment. The only reason I get a face to face every 3 months is because I signed up to be part of the research programme being carried out at Southend.

Manihiki
Manihiki in reply to Helipad

I was diagnosed with fibromyalgia 30 years ago and only got GCA three years ago and this past year PMR.

Helipad
Helipad in reply to Manihiki

I develop CRPS 3 years ago, then diagnosed with GCA last August and told I had PMR in November and yesterday Fibromyalgia not PMR. It’s all very confusing as each condition comes with it’s own set of pains and symptoms, some of which overlap.

Hi Helipad , how did the Dr know the difference between them ? id be interested to know. Thanks x

PMRpro
PMRproAmbassador in reply to Viv54

Some doctors claim they can tell the difference - superficially that is more difficult than they are often willing to admit as there is a lot of overlap in the pain and symptoms patients have. One of the perceived symptoms for fibromyalgia is painful trigger points at various positions - but these trigger points also coincide with the attachments of muscles and tendons to bones which also form trigger points in myofascial pain syndrome and PMR. I had PMR for 5 years undiagnosed and when I did work out for myself what it might be I could identify enough trigger points to make it very difficult to decide whether it was PMR or fibro on that alone.

The primary difference is that PMR pain will respond to moderate dose pred and may have had elevated blood markers. Fibromyalgia is never accompanied by raised blood markers and does not respond to pred at any dose as it is a neurological problem with pain perception not pain caused by inflammation. It is perfectly possible to have both and the people who have both say they can tell the difference.

The problem is that some doctors do not believe that you can have PMR without an ESR of over 40 - so any patient who presents with the symptoms but no raised markers is told by them that they have fibro without any doubt.

Helipad
Helipad in reply to PMRpro

Thanks for this. Having read about PMR and Fibromyalgia I agree there are many overlapping symptoms. For me as I also have CRPS, which is another chronic condition where parts of the body react abnormally and causes chronic pain and also doesn’t respond to steroids, but at least with this there are specific symptoms, then add in the symptoms/pains of GCA, Ihave to say I’m getting very confused by it all.

tangocharlie
tangocharlie in reply to PMRpro

So is fibro more like pain and PMR more like stiffness? As fibro is to do with nerves rather than muscles?

PMRpro
PMRproAmbassador in reply to tangocharlie

Don't ask me! Ask someone who has both - Snazzy for example. But if you google "fibromyalgia stiffness" lots of links come up including morning stiffness and stiffness after sitting as a symptom, But then, it might well if they include people with misdiagnosed PMR

tangocharlie
tangocharlie in reply to PMRpro

I'm sure a lot of people are told they have fibromyalgia when it's actually PMR. Rheumatologists tried to do that to me because I was 'too young' for PMR in my early 50s. Fibromyalgia is a code word for doctors that means 'I haven't got a clue what's wrong with you'. Autoimmune conditions, of which there are 100s, are under-diagnosed because doctors don't know much about them and there isn't a specialist pathway for them, and as the treatment is often steroids and doctors don't want to prescribe steroids for somethng that isn't going to go away. We only get reluctantly granted them because doctors think the PMR will go away in 2 years. The NHS needs specialists for AI conditions - maybe that is something good that will come out out of Covid, as finally, studying the immune system is 'sexy' - and actually possible with today's technology. It is scandalous that illnesses like Mast Cell Activation Syndrome, which was only classed as an illness in 2007, has no official treatment pathway on the NHS. Yet now they are discovering it is probably the cause of 'long Covid' and I suspect just about any illness with a fatigue component like CFS.

PMRpro
PMRproAmbassador in reply to tangocharlie

Absolutely, couldn't agree more. And there are a lot of people on the forums whose doctors are prescribing the drugs used for fibro for PMR patients.

Apparently the guy who first described fibromyalgia regrets doing so as he sees it being misused again and again. And as a "go away and stop bothering me because there isn't a cure so learn to live with it". There is evidence that it is also an autoimmune disorder.

Sarah asked me once what what the biggest unmet need in PMR - expecting me to say a good treatment I assume. No, what we need above all is a reliable marker for PMR that works for almost all cases or which at least characterises each sub group. Let's get the diagnosis right as a start.

tangocharlie
tangocharlie in reply to PMRpro

I remember when reading the Quick and Kirwan paper (which I love and wish was standard tretment for PMR - I have asked Candy if she can get Vanessa Quick to do a talk for PMRGCAuk) that they reckoned more than half the people dx with PMR and sent to them were misdiagnosed. If that is the case (but who knows, maybe they also misdiagnosed as rheumatologists often get it wrong too) then to me that would part explain why we know so little about PMR. Let's say for example someone has the reactive arthritis form of PMR, they will be treated as if they have PMR but it will be gone quickly, once the underlying trigger is gone eg trauma or injury. But as it will be classed as PMR, the doctors will point and say 'look it goes away after 6 months on steroids'. The medical textbooks were written on inaccurate diagnoses of what PMR is. I've come across at least half a dozen people dx with PMR on the basis of one swollen knee or one shoulder or a stiff neck, and it's usually gone in 6 months. And thinking about it, it's often men dx that way.

PMRpro
PMRproAmbassador in reply to tangocharlie

Oh yes - my hobby horse too! I think there are at least 4, probably 5, different sorts of PMR. Sarah Muller's work she presented on a webinar a few months ago identifes a few of them - speed of response to pred, timeline of the dose and response etc etc.

And because of the way they try to fix the tapering of the dose too strictly they make it worse. Any patient who can't reduce to 10mg in 2 months is told it is their fault or that it can't be PMR which in some ways is even worse. A slightly higher starting dose and a gentler approach to tapering would solve loads of problems - because many patients who flare early struggle later. There must be something in the pred/neutrophil interaction or something similar ...

tangocharlie
tangocharlie in reply to PMRpro

I'd like to get all the expert rheumatologists together on a panel and challenge them by asking questions like why if we know PMR is going to last at least two years do the guidelines you lot wrote suggest you should be off steroids in just over a year? What is wrong with increasing your dose if you flare? etc etc

Helipad
Helipad in reply to tangocharlie

Now that would be really good, put all of them on the spot and after my experience yesterday, I bet not one of them could find an answer they could agree on.

tangocharlie
tangocharlie in reply to Helipad

Yes, let's do it! At least my rheumie, Dr Mackie is brave enough to say 'We don't know the answer to that yet' whereas others are convinced that by Divine right their unfounded opinion is correct!

Helipad
Helipad in reply to tangocharlie

Oh wow you have hit the nail right on the head. I was told yesterday that basically they knew best.

tangocharlie
tangocharlie in reply to Helipad

I think the previous generation, my parents for example, see doctors as being Gods and not to be questioned or doubted, just do exactly as they say, whereas the Boomers like me are not afraid to challenge and ask questions.

DadCue
DadCue in reply to tangocharlie

"Let's say for example someone has the reactive arthritis form of PMR, they will be treated as if they have PMR but it will be gone quickly, once the underlying trigger is gone eg trauma or injury."

I'm having a flare of reactive arthritis right now. It has never been triggered by trauma or injury. That would suggest a reason for why it hurts. Reactive arthritis is usually triggered by something more stealthy like stress, an infection or perhaps a covid vaccine.

I know where reactive arthritis leads and I don't want to go there. It mostly attacks my spine and seems to be busiest during the night when I'm trying to sleep. It will progress until it reaches a pain threshold where I will self medicate with prednisone. Then it should resolve quickly and I will taper off prednisone in a couple of weeks. I will tell my doctor all this but they won't be able to understand what I tell them. They will suggest the pain is because of some sort of trauma or injury and I will say I don't recall any such event.

Reactive arthritis was diagnosed over 30 years ago. Fortunately for me, uveitis was a huge clue at that time. IF it is presently reactive arthritis, my doctor will likely say reactive arthritis isn't treated with prednisone. I don't understand why it isn't because my ophthalmologist never hesitates to prescribe mega doses of prednisone for uveitis. At least I can now say that I don't think it is PMR because Actemra seems to have that under control. My rheumatololgist has already said I can't take both Actemra and a TNF inhibitor.

This time I warned my very friendly and compassionate rheumatologist that I have been thinking about taking prednisone. She wants me to delay taking it until she has a chance to figure out what is causing the pain. She suggested stopping my atorvastatin again and she will increase my Actemra injections back to weekly.

Longtimer
Longtimer in reply to PMRpro

The first Rheumatologist told me when she diagnosed me that the pain for PMR comes from a different place to Fibro.......I think she mentioned the spine and the brain.....I have friends with Fibro that have been dismissed with the fatigue.....but now with long covid it is being taken notice of,,,,I sympathise with them being angry about this, but just hope it leads to some help with it.....for us also!

With you on that one, I just want to know exactly what I do have as that is the best starting point.

tangocharlie
tangocharlie in reply to Helipad

Yes, if something makes you feel so bad it helps to know what it is you're up against

It does indeed. I had the same problem before I was diagnosed with CRPS, I’d got to the point where I thought I was actually going mad and maybe was just imagining it all and then when I find out that CRPS had been flagged in my notes months prior and that nobody had bothered to tell me that was a real low point and it seems like it’s happening all over again.

tangocharlie
tangocharlie in reply to Helipad

CRPS sounds like another catch-all diagnosis that also means 'we don't know what's wrong and can't be @rsed finding out'

Luckily for me I do have most of the weird and wonderful symptoms, the strangest being that my toenails on that foot just stopped growing🤣

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