GCA then PMR?: Diagnosed with GCA about 5 months... - PMRGCAuk

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GCA then PMR?

FowlerVF
FowlerVF

Diagnosed with GCA about 5 months ago. GP's put me onto 50mg Pred straight away. All the symptoms, headaches, temporal artery, scalp tenderness, jaw claudication and night sweats disappeared within days. Brilliant. Still exhausted, but by pacing myself and taking suitable naps I was all good, still managing to function and work. Blood tests were very high at outset, I didn't take much notice, (I figured this was for the GP not for me to interpret), I think it was a CRP test, but not sure, something like a reading of 50 (I recall it being about 10 times normal), then dropped to lets say 25, I was told about 5 times normal after 2 months. Recent test still at same level. Again, I was feeling fine, so didn't take a lot of notice, but I did ask for a referral to a specialist at this stage, (still waiting on this) as both the GP and me felt that we should have seen another drop, if not return to near normal.

So all in all, coping and managing, just happy to know what was wrong and still being able to manage a pretty good (actually very good) life living with the illness.

BUT; for the last 10 days I have been having pains in the legs, buttocks and back, making walking difficult. This has got more and more severe, but mainly only in the one leg and mainly in the top of the calf and base of thigh. Night sweats have reappeared. Now in bad pain and total exhaustion, cant manage much at all.

I read that 40 to 50% of people with GCA can also go on to have PMR. Is this what is happening to me? I am in discussion with the GP's (I never seem to be able to see the same one) about this and whether perhaps this is a sign that the original dose of 50 wasn't quite high enough. They don't seem to know and even they are struggling to get any specialist to either see me or give them a direct answer.

So can these additional, possibly PMR symptoms, appear along the way? Is this a sort of flare? Anybody else had this happen?

27 Replies
oldestnewest

Hello, how worrying for you. It would help to know what dose you are on now and how you got there.

I agree with Snazzy D, what dose currently on and also you need to keep a special diary and write and track everything. Your GP should have referred you straight away to Secondary care for GCA.

High doses of pred would have knocked the PMR pains out.

I had GCA only BTW. Normally PMR comes along first and then sometimes if unlucky along comes the big relation in the LVV family GCA.

As per original post: GP's put me onto 50mg Pred straight away

Still on this, for last 5 months.

SnazzyD
SnazzyD in reply to FowlerVF

Sorry, I wasn’t expecting you to still be on 50mg 5 months later. Is there a reason you are still on such a high dose? Is the GP going by your inflammatory markers? It may be worth finding out exactly what they are now. I imagine you would be feeling those side effects after this time!

It is possible the pains could be steroid myopathy, but there are other side effects of Pred. PMR should be well and truly knocked on the head at 50mg.

I think the GP should be expediting your appointment rather than keep you on high doses and apparently still high markers.

50mg for GCA seems to be a bit of a standard from what I read , although I understand there are people on as much as 80. I dont think the GP (any of them) has been going on anything to do with the blood tests or inflammatory markers, just seem to have been happy that I was coping. With hindsight I should have raised the question as to why the original dose wasn't bringing the markers down to nearer normal, and again with hindsight should probably have questioned why I wasn't being referred to a specialist. Not the GPs fault, but GCA is a bit of a rarity for them, they cant be expected to know and understand every detail and nuance of absolutely every illness. Probably didn't help that every visit seems to get me seeing a different GP, so no-one really spotting the story of the blood tests. Me, I was just happy to be being treated, happy to know what the problem was and happy to be able to find ways of coping with it.

Intriguingly, the GP that I last saw two weeks ago and spoke with earlier this week about the new symptoms, has been a bit more pro-active. She has just come back to me to say that the response to her question to a Rheumatologist of "should we increase the Pred dose in the light of blood tests and symptoms?" has puzzled and perplexed her. Apparently the Rheumatologist only wanted to talk about tapering the dose down, I detect that the GP was clearly not happy with the answer or the reasoning, but is now struggling to know what to do having asked for the advice.

Forgot to add that the earliest appointment they can get for a specialist is apparently still over two months away!

PMRpro
PMRproAmbassador in reply to FowlerVF

"Not the GPs fault, but GCA is a bit of a rarity for them, they cant be expected to know and understand every detail and nuance of absolutely every illness."

That is why it belongs in the hands of a specialist, it is a medical emergency. There is something very strange about all this - a rheumy claiming they cannot see a query GCA patient is also not acceptable. The GP is probably using the word urgent - not EMERGENCY. How would you feel if a GP said it would be 2 months until you could be seen for a stroke?

And that is why I asked where you are.

Soraya_PMR
Soraya_PMR in reply to PMRpro

You took the quote and response out of my mouth!

PMRpro
PMRproAmbassador

Not quite - it is that about half of patients with full-blown GCA demonstrate symptoms of PMR. Once you are on a GCA-level dose of pred there should be no PMR-type symptoms and PMR is characteristic in responding to a moderate dose of 15-20mg/day and requiring more to manage PMR should trigger consideration this is not "just" PMR.

What I am far from clear about from your post is what your current dose is? And what your GP is playing about at if he thinks this is GCA - it belongs in the hands of a specialist as a medical emergency in the same way he would have sent you to a hospital for a potential heart attack or stroke. Where are you - in terms of nearest hospital that is.

Right - having scrolled down - what IS your GP playing at? At the very least he should have followed the advice available to him for managing GCA without a specialist:

rcpe.ac.uk/sites/default/fi...

You will find the reduction plan for GCA in Table 5 on p346.

To leave a patient on 50mg of pred for 5 months is downright negligent in my book (I am well known for my forthrightness) and it is time for one of two things: either your GP contacts the local rheumatology department as an emergency move or you find a local rheumy privately. My optician in Scotland would have had you at the local eye department within an hour or so, which is as it should be. If he could - so can a GP. Come to that - my paramedic daughter would take a query GCA patient to the most appropriate hospital without feeling a need to ask a GP.

This

academic.oup.com/rheumatolo...

shows in Fig 1 and Table 1how PMR and GCA overlap with large vessel vasculitis and so how the various symptoms may be triggered.

In the first 18 months of GCA flares are common. If the 50mg starting dose wasn't actually quite enough to clear out all the existing inflammation it is possibly that you are now flaring and symptoms reappearing - or that you are beginning to suffer from the effects of 5 months of high dose pred. At 50mg I doubt it is PMR symptoms - it could be the effects of large vessel vasculitis that has not be diagnosed and managed.

OR - and it is possible - this is not GCA/PMR. You mention back pain - when and here?

Thank you so much for the prompt reply PMR Pro.

Your first paragraph tells me much of what I wanted to know: "Once you are on a GCA-level dose of pred there should be no PMR-type symptoms and PMR is characteristic in responding to a moderate dose of 15-20mg/day and requiring more to manage PMR should trigger consideration this is not "just" PMR."

My thoughts were that this was probably the case, the high dose of 50mg would most likely have been managing any PMR type symptoms. I just wasn't sure how the preferential "use" of the prednisolone went, did it get used up in combatting the GCA first and so if there was PMR did that then show up as a symptom if there wasn't enough prednisolone to deal with everything? Clearly this isnt the case.

So the fact that I now have leg pains, (which I had mistakenly assumed were perhaps a sign of PMR) could well be something else. Could easily be a side effect of the Pred, or indeed some other complication.

In terms of the original diagnosis of GCA, I still remain very confident in this, I originally went to the doctor (for the first time in 25 years) with these symptoms:

Jaw claudication + scalp

tenderness + new headache

+ night sweats + tenderness at temples

I was seen by a practitioner nurse, she seemed very confident as to what the issue was, but couldn't tell me without confirmation by a GP. From what I could tell the practitioner nurse had difficulty getting hold of the duty GP, couldn't get anyone to see me immediately as she requested. I subsequently found out that the practitioner nurse was on her first day at the practice, and I am guessing that the duty GP was not buying it that the "new girl" had single handedly diagnosed a quite rare illness on her first day. The practitioner nurse was very determined and clearly unhappy, she still didn't tell me what she though it was but very firmly asked me to go immediately for an eye test, and tell the optician my symptoms. (she also said that if I couldn't get a test the same day and experienced any blurring of vision I should go straight to emergency). The optician did give me his opinion of GCA, and sent me straight back to the GP's with a letter, he repeated the warning of going to emergency if I experienced any changes in vision. I will remain eternally grateful to these two people who realised what might be going on.

First GP put me on 50mg. Did blood test. I have seen three different GP's since then, only just returning to the original one in the last two weeks.

Not having been to the doctors for the previous 25 years, and not having read up on my symptoms, I am pretty happy with the "fit" of what I was experiencing as being GCA. All these symptoms were gone within days once I was on the 50mg, just leaving me with the exhaustion (which I could manage with).

My analysis now begins to concur with what you have written:

"If the 50mg starting dose wasn't actually quite enough to clear out all the existing inflammation it is possibly that you are now flaring and symptoms reappearing - or that you are beginning to suffer from the effects of 5 months of high dose pred. At 50mg I doubt it is PMR symptoms"

That's what I now need to see a specialist about, as you say, " it could be the effects of large vessel vasculitis that has not be diagnosed and managed"

Or even simpler, the dose is too much, or still too little.

Or jut pred side effects; or anything else.

For instance I blindly accepted the prescriptions, which includes a Calcium supplement. That's good, we know pred can cause osteoporosis, but then again, I am a man, only 60. So do I need the same dose? I do know from my farm experience that excess calcium can also be an issue, for instance competing with and inhibiting magnesium uptake.

I hadn't really given much thought to how the NHS or any medical system works, hadn't seen a doc in 25 years! So didn't really think about asking for a referral, assumed that I was under treatment and it would all flow from there! I sense that the last GP is realising that I seem to have dropped through the net to some extent, but she still hasn't managed so far to get me any closer than 2 months from a referral. I will definitely be looking for a private consultation immediately.

Many, many thanks for the help and advice. Sorry for the information dump!

PMRpro
PMRproAmbassador in reply to FowlerVF

You still haven't told me where you are!!!!!

SnazzyD
SnazzyD in reply to FowlerVF

I do hope you are prescribed vitamin D as well in order for the calcium to work properly getting into bones. Most of us also take Vitamin K2 to facilitate said process and it helps prevent calcification of the arteries. For bone health you should also be given a DEXA scan in order for a baseline bone density to be ascertained, especially when you’re embarking on long term use of Pred.

If you don't feel comfortable telling all and sundry where you live and are being treated you can private message PMRpro. Just click on her name and you will be taken to a page where you can send a private message. She is asking because often location makes a difference in the kind of advice we can give. Shouldn't, but it does.

PMRpro
PMRproAmbassador in reply to HeronNS

And where the nearest fast track set-up for GCA is to be found!

Hereford UK; Sorry, too busy typing and ringing round for a private appointment!!

Just got one, for next week. Just need to get the GP practice to give me a referral letter now.

PMRpro
PMRproAmbassador in reply to FowlerVF

Good start - hope they are decent, they do vary even when private.

I was born in Hereford County Hosp ;)

FowlerVF
FowlerVF in reply to PMRpro

Me too!

Yes I know it might be pot luck going private but needs must!! The nhs guy in Hereford also did private. But still wasn’t available for another month.

PMRpro
PMRproAmbassador in reply to FowlerVF

Is this a risk factor for PMR?????

FowlerVF
FowlerVF in reply to PMRpro

its either the water or the cider then!!

In my case it probably isn't the water!

PMRpro
PMRproAmbassador in reply to FowlerVF

Ah - under-age exposuse to Bulmers or Symonds cider maybe??

DorsetLady
DorsetLadyPMRGCAuk volunteer

Between 40mg and 60mg is usual starting dose for GCA depending on whether there are any sight issues, so your starting dose was fine.

However, you shouldn’t still be on that dose 5 months in. A month at initial dose is usually considered sufficient to clear out accumulated inflammation. Some patients stay 6 weeks, I stayed 2 months but that was because I had sight issues.

After that initial period, then you begin to taper - and that’s why the Rheumy has come back with that response to GP.

Plus as others have said, at that dose then any PMR symptoms would be well controlled (they wouldn’t be expected to appear until you got into tge lower teens) , so you obviously have something else going on.

You need to push for referral to Rheumy, whether that be through the NHS or privately.

Update. Got to see a rheumatologist at last. (privately, the NHS one is still two months off!) She was very good and v thorough. Very professional, but I think not very happy that I had not had a referral from the outset, and not very happy with the dose level I had been put on, (50mg) for the last 6 months. Confirms GCA pretty much, but cant be so definitive so late after initial onset, and with the high dose. Pretty sure that all the symptoms I have had building up this last month are due to the size of dose. Yes, she can see that the blood tests are still showing unusual inflammatory indicators, but she also said, "its all very well saying its above normal, but we don't have any way of knowing what your normal is or was". She also said "we should be treating the patient, not the blood test". She has started off by immediately reducing to 40mg, and subject to my symptoms etc plans to drop that to 20 over the next month or so. Because the dose has been too high for too long she is wary of dropping too fast.

PMpro; I took that rcpe.ac.uk/sites/default/fi... document with me. Turns out that my consultant had worked with those guys and knew all about that approach and ideas. Very reassuring.

She is writing to my GP's and asking for some more tests. She is pretty sure that the leg pains and other newer symptoms are side effects of pred. But doesn't rule out the potential of some other underlying issue as well as GCA. Wants to check out for some other vasculitis, just in case.

I am seeing her again in a few weeks, and she suggested keeping the NHS appointment open so I get yet another opinion and keep the access to NHS tests open.

Feeling a bit better already, I doubt its the effect of lower dose yet, more likely just feeling better because someone is actually on the case!!

PMRpro
PMRproAmbassador in reply to FowlerVF

Oooohhh - is this another to add to Dr Quick. Where is she? Can she not add you to her NHS list? Or is it too far away?

Worcester; Spire Clinic is where I saw her. I think she works out of Birmingham otherwise.

PMRpro
PMRproAmbassador in reply to FowlerVF

Bell?????

Vasta

spirehealthcare.com/spire-s...

PMRpro
PMRproAmbassador in reply to FowlerVF

Good credentials and background. Especially if she picked up some ethic from Bristol - Bath can sometimes be a bit dismissive of PMR. Not real rheumatoid disease ...

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