Coud I have PMR and/or GCA?

Bones, joints and muscles
1

Hello all,

I know attempts to self diagnose are not the best and I'm in the process of seeing a neurologist and will see a rheumatologist (but long wait).

I am so tired of feeling like cr*p for years now, particularly when I'm only 33 years old! I would be very thankful for any time you take to read and answer.

Symptoms

My problems began almost 3 years ago, suddenly, I developed a throbbing right temple headache. The worst headache I had ever had and I could literally feel the throbbing sensation like in a vein. The headaches continued but grew less throbbing and more chronic - but with recurring 'attacks' which floored me.

I then began developing jaw pain, not so much strong pain but more like muscle strain feeling in my right side jaw (same as the headache).

Now two years later my neck is an absolute mess of cracking and sounds like I imagine an 80 year old would sound like. I have very frequent and debilitating neck pain and my shoulders are incredibly sore. I have constant lower back pain, knee pain, muscular pain in my hips and arms frequently also. I have gotten two negative MRIs of my lower back and knee - NOTHING to be seen of disc problems. I do have an disc prolapse in my neck on MRI.

I have also had some balance problems now for 3 months which is why I am seeing a neurologist.

On top of that, and maybe the worst, is the extreme fatigue, feel like I don't sleep and is exhausted all day, I have only a few hours of functioning a day.

I also had some positive ACLA lab results, but don't know if that is related to PMR also.

Neurologists look at MS now and some other neurologists considered Vasculitis.

The worst thing is that despite the headache I was in good shape until this latest 'flare up' about 3 months ago.

Things against PMR?

- Young, male, 33 years old

- Low CRP (but high normal (8+) leukocytes for months)

Does what I describe sound like something you recognize?

 

2

You are not too young and I can vouch for that statement and back it up if necessary.

Tell you GP, you are not prepared to wait any longer.

Neither your ESR or CRP need to be raised and in some cases of both PMR and GCA they are never raised at all.

There is a simple test use the search button on this page and type in Diagnosis and Treatment of PMR and GCA.

When everything else has been discounted a few days trial on a dose of Pred, at least 15mg to 20mg a day for about a week, if everything disappears quickly, it is PMR. But you must read the British Society of Rheumatologists Diagnosis and Treatment of PMR and then GCA.

Self-diagnosis is NOT A GOOD IDEA.

3

Sounds very like GCA/PMR which is a form of vasculitis.  The Drs do a biopsy and can diagonise that way and also as Lodger says prednisone for PMR 20mg or higher for GCA for a few days and the difference will tell you if the answer is yes.

The sooner you get started the better the outcome & before you develop other problems... Good luck and so sorry it has taken so many years to diagonise

4

Hello ericdk, all this uncertainty will be doing you no good at all no matter what condition you are eventually diagnosed with.

pmr/GCA is diagnosed by a method of exclusion and your dr's should be diagnosing you like that. You say that your neurologist is considering Ms, well there is a test for Ms so that condition should be easily confirmed or dismissed. And so on through all the possibilities of conditions that can be diagnosed by tests.

hang on in there, hopefully a diagnosis will come very soon. Regards, tina

5

Eric, although the confirmed prolapsed disc in your neck could be the root of all your problems, have both Ankylosing Spondylitis and Reactive Arthritis been ruled out?  Both your symptoms and your positive ACLA could fit with either of these conditions.

​As the others have said, you're certainly not too young for Giant Cell Arteritis, and the only way to confirm this would be to put you on a trial dose of the steroid, Prednisolone - however, it could need a high dose (much higher than for PMR), and many other conditions will also respond to the high doses.

​You need a second opinion from a good rheumatologist.  If in the UK, whereabouts are you?  We might just be able to point you in the right direction for a recommended rheumatologist. 

6

Hi lodgerUk. I was wondering if maybe you could advise me.

I am 44 female. With every symptom of PMR I have slightly high esr 34 & crp 21.

I saw a specialist rhummy nurse who gave me a trial pred 120mg injection. It was miraculous. Within 18 hours I was 95% pain free just some stiffness remained in my neck shoulders and hips.

I then got to see the top dog rhummy. Who said i categorically did NOT have PMR as I was too young. I tried to debate this but he said he was the expert.

My gp finally gave way yesterday and gave me 2 wks of pred 10mg daily. Basically he said he has given them me to shut me up. He said he can't go against the consultant. I asked had he ever know a consultant to be wrong. He said we all make mistakes but I have to stand by his diagnosis.

I feel unheard and lost...

I should also mention my mom has PMR.

Any advice would be greatly appreciated. I am in Birmingham UK.

7

Your GP is talking rubbish - of course he can diagnose and manage PMR without recourse to a rheumatologist. Two weeks of pred won't do anything much in the long term though. Follow this link

https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316

About half way down the first post you will see a heading "Bristol paper", Print it off and go to your GP with it and insist he read it carefully. If he won't listen and cooperate then see another. It was written for GPs to enable them to manage PMR without the aid of a consultant. They do say a rheumatolgist should be seen in "atypical" cases so he may use this as a get-out.

I'm assuming the 10mg dose has had a similar effect to that initial injection? It is possible you have something else - all things are possible - but your response to the injection would be regarded as confirming the suspicion of PMR by many doctors. Especially of course if you were over 50. It is a typical response by doctors who do not understand statistics to say you can't have it because you don't fit the norm - 5% of all patients lie outside that norm.

About two years ago a 37-year old man in South Wales died of a stroke - at the post mortem the pathologist said the cause of death was due to stroke possibly caused by undiagnosed and untreated GCA which he had found evidence of. But your rheumy would probably say that it was impossible because of the age of the patient - unfortunately, pathologists know the whole truth but it is too late. If someone of that age can have GCA - someone of that age can also have PMR since they are both due to a form of vasculitis and are related.

Is going privately an option? You need a rheumatologist who is prepared to think outside the box and there are some we know of. Not that we know of in B'ham unfortunately so you would have to have a day trip further south!

8

I would suggest that - just for a start - you try to find a Bowen therapist locally and have a few sessions to see if it improves any of the back and neck pain. I know it sounds crazy but even small problems can lead to severe back/shoulder/neck pain when neglected and allowed to progress over years. In my case it was a wisdom tooth that was erupting at an angle, it affected my bite and that was enough to unbalance all my back muscles which went into spasm. Bowen may achieve an improvement in that because there are a few things that can happen alone or alongside PMR which makes the PMR even worse and which would produce problems like you describe. You will know within 3 sessions, if it doesn't help in that time it probably won't. What you describe is typical of muscular problems and they won't show up on an MRI. They are all also enough to cause balance problems. At least if you can clear some of the discomfort you can see more clearly what your non-muscular related symptoms are.

I'm assuming that you are in the US - if you are seeing a neurologist they are also capable of making a diagnosis of GCA and in some countries you would be under the care of a neurologist. GCA is just one of a range of diseases involving vasculitis and if it is a vasculitis it would be most likely to show up on a special form of MRI or CT using PET (positron emission tomography). They are relatively new and also far more expensive than an ordinary MRI or CT so tend only to be used when there is a high suspicion of something. Vasculitis is an autoimmune disorder and they are often accompanied by excessive degree of fatigue - of the sort you describe, feeling as if you have had no sleep despite a good night. I have to say I'm surprised your doctors haven't followed up the excessive fatigue, especially in combination with the headache and your age. I presume they have ruled out all the things that can present with PMR/GCA symptoms? PMR is a diagnosis of exclusion, it is the name given to a set of symptoms and they can be caused by many things, including GCA, and it is important to rule them out before coming to any conclusion.

Why did you have ACLA testing? Have you had a thrombosis? I don't think it is usually something relevant to PMR - but it probably is relevant to some forms of vasculitis.

9

Was it at the QE you saw your Consultant or elswhere?

Normally these people at the QE Hospital, Birmingham,

Professor Simon Bowman et al are normally excellent.

 

10

Hi Eileen,

Thanks for your comment. I have 30+ white subtance changes in my brain, which coupled with negative MS (but very MS like symptoms), led one team of neurologists to suspect vasculitis.

The problem is then that a new team of neurologists at a different hospital took one look at MR scans and said 'it isn't vasculitis'. Two so differing opinions from two competent teams?

I was talking to my doctor about fatigue and he basically just gave me sleeping pills. He also said he wasn't qualified to comment on the neurology or reumatology.

The neurologist told me to see a reumatologist as he wasn't qualified to understand the reumatology.

Should I push him to pursue that auto-immune theory also or would it be better to see the reumatologist first (in 3-4 weeks)?

I had the ACLA testing during a very thourough 1 week admission to hospital because of the balance problems. The other auto-immune results (ANA and such) were negative only the ACLA, which in turn my white spots have been described by a radiologist as could be from exactly anti-phospholid syndrome. So I have one lab marker for that disease AND one radiologist saying the white matter change could be that and yet my neurologist passes it off to a reumatologist and continues with that MS theory despite me telling him it was negative (lumbar puncture all together negative).

I really don't know how to handle this. I am not in the US, so at the mercy of labyrinthine public health care here and each department seems to only want to deal with their very specific field, no communication what so ever across departments.

 

11

Thank you for your reply. I will print out the report for when i next visit.

I only started on the 10mg yesterday and today after 2 doses I feel brighter but I wouldn't yet say brilliant. Hopefully tomorrow I will feel brighter still.

I cleaned the kitchen today. Sat and had a chat with my sis in law and then had to go to bed for a nap. Exhaustion is massive... Its a good job my twins have xboxes lol.

I saw a Mr Grindulis from Sandwell hospital. I now intend to ask my GP to refer me for a second opinion.

I would take out a loan to go private if I knew it would solve my problem but after having IVF privately 11 yrs ago I know how my GP would react. Not favourable..

Thank you once again. If its ok could I contact you again in the future x

12

No problem about contacting me, just use the PM on here or send a message to the email address you will find on the PMR&GCAuk North East Support website and say you are Charlieschoc from Patient.co.uk

Do get a referral to that team in the QE at Brum.

13

PMR has been diagnosed in younger people - as young as 18!!

Rare is RARE, not impossible!

14

Sleeping pills for fatigue? What a prat! Thorough medical investigation was needed. And I don't understand the non-professional attitude of disdaining the opinions of other professional - come across it all the time in the UK. If nothing else it is rude.

I suggest you google VasculitisUK and I think they have a helpline. They certainly have a forum at healthunlocked. The best place to try to get to is Addenbrookes which I gather has not only a top vasculitis guy but also a multidisciplinary team so you get one-stop management. The charity will provide a lot of support and advice for your search for a competent specialist. 

I'm sending you a pm with a link. Good luck

15

DON'T clean the kitchen - management of PMR isn't just with pred! You have to do your bit too. Anything you do when you have PMR is far more effort and your muscles are unable to recover the way they would normally. I realise it is difficult if you have 10 year old (?) twins but maybe they can help a bit instead of their xboxes? 

The dose you are on is a bit low as a starter so it may take a week or so to feel significantly better. If it is working your GP may be prepared to let you have a bit more after reading that paper.

Good luck - and get thee to the QE!

16

Should have said - google the Spoon Theory by Christina Miseriando. Read, mark, learn and inwardly digest! It will help you get through PMR better. 

17

I will ask my gp if I can be reffered. Or phone his secretary to see if I can self refer. I dobt the 2nd one will be feasable though xx

18

I would TELL the GP you wish to be referred to the QE if he isn't prepared to manage you as having PMR - which he is quite able to do if he wants to. To say he can't go against the consultant is drivel - many doctors diagnose and manage PMR without ever speaking to a conusltant. 

19

Thanks for that Eileen. My biggest fear is losing my business. I was running a luxury chocolate business from my home. My kitchen was awarded 5star hygeine rating. It scares my that I will lose all that I have acheived over the last four years. I am barely working now. I am finding it such a struggle. In my head giving up is the right thing to do but I feel I need a firm diagnosis to do it. Don't ask why I'm not sure I know myself. At 44 the though of giving up scares the hell out of me...

20

Aah   that explains Charlieschoc  - yummy.

Do not give up - just fight your corner and take some one with you to listen and note and you will find the medics take more notice when you have someone with you.  Either a tough, no nonsense person or a quiet, deadly one.

We cannot lose a chocolatier - that would make me