Diagnosed by vascular vs rheumatology

[Boozsa]

Was anyone here diagnosed PMR/GCA by a vascular surgeon and not a rheumatologist? I’ve had zero luck with rheumatology/ they can’t get past my labs, mildly elevated CRP at times, “normal” ESR. Yet my symptoms are textbook and I had a rapid response to 60 mg of prednisone. *note I was taken off after a week because of my labs and age (44) I have a vascular appointment in December. Any advice??

[PMRpro Ambassador]

Are you sure it was a surgeon and not a medical vascular specialist? They do tend to work together and in some places they would look after patients with GCA.

To be honest - a lot of things would respond to a dose of 60mg so it is no proof of PMR and to start treating GCA and then stop the pred so quickly is a risky approach. If it is GCA you would expect them to be back very quickly - is that the case?

[Boozsa in reply to PMRpro]

He is a vascular specialist/vascular surgeon. Yes my symptoms returned quickly after the removal of prednisone. This all began with hip/pelvic pain, low grade fever, joint pain, and fatigue. Over the course of 2 years it progressed to neck and shoulder pain as well(one side) and I started having jaw pain. And now, scalp sensitivity( brushing hair, laying on pillow etc) swollen throbbing temporal artery and temple throb, unbearable at times, I’ve lost 18# in 4 weeks because I have zero appetite. I’m also getting inflammatory rashes on hands and feet and blistering of the scalp. I have photos of these and dr has seen them. I’m concerned about the lack of concern and the obvious progression of symptoms.

[PMRpro Ambassador in reply to Boozsa]

The trouble is your age and lack of raised blood markers - and there are a lot of rheumies who simply won't have it that young patients can have it and markers must be raised. Which is utter rubbish and I can quote examples of young patients - in whom "normal" blood markers are more common.

However - has no-one mentioned Takayasu's arteritis? You are the right sort of age for that (just) and it is identical to GCA, histologically speaking.

I don't really know what to say - except you could try going to an optometrist and asking for an examination of your retina and the optic nerve to see if there are any signs of poor blood flow there. When in December will you be seen - by the same guy?

Where are you?

[Boozsa in reply to PMRpro]

No one has mentioned TA or done any testing of my large arteries to rule this out. It’s beyond frustrating as I have read about the younger age and low blood markers too. The vascular specialists is a new doctor for me. I am in the US in Washington State. I did go to an eye doc in August because I was worried and I did not have ocular inflammation at the time only a kinked appearance of the optic nerve. I’m keeping a daily journal and have listed all my elevated CRP tests. It has been elevated numerous times only mildly(2-4 points) whenever I’ve complained of PMR symptoms and had a same day appointments hence same day labs. I guess I’m just wondering if vascular has a different approach to diagnosis compared to rheumatologist? I’m so sick and have nothing to manage symptoms it’s really wearing on me. Good vibes for a diagnosis this time , would be helpful

[PMRpro Ambassador in reply to Boozsa]

Sorry can't really help with suggestions for the USA. All the best...

[Boozsa in reply to PMRpro]

I understand. Sometimes this site is nice to just vent and get a little feed back. I appreciate all of you and wish you wellness in your journey

[PMRpro Ambassador in reply to Boozsa]

To be more accurate - not for Washington State off the top of my head! Philadelphia maybe, Rochester, You could try a new post asking if there is anyone in Washington State who could recommend someone

[Boozsa in reply to PMRpro]

Also I don’t think anyone can help the USA and the healthcare mess we are in just sayin

[piglette in reply to Boozsa]

I must admit, we complain about the NHS in U.K. but the US seems to have even more problems unless you are rich.

[Boozsa in reply to piglette]

Yes it’s really a mess and near impossible to navigate. This experience has been an eye opener in more ways than one.

[Marilyn1959]

Hi Boozsa. Text book symptoms of what? PMR and / or GCA? 60 mgs is a high dose so no wonder symptoms dissipated. If PMR symptoms only, then 15mgs should be enough to make a significant difference and this dose and response to it will often be the indicator for an experienced Rheumy to firmly diagnose PMR. If GCA then I would be very concerned that you were only given a dose for a week!

[Boozsa in reply to Marilyn1959]

Boozsa

BoozsaPMRpro

a few seconds ago

He is a vascular specialist/vascular surgeon. PMR first progressing to GCA. I should also say I’ve been given smaller doses 10-20mg of prednisone in the past that helped before I started having temporal artery involvement just never for longer than a few weeks at a time. Yes my symptoms returned quickly after the removal of prednisone. This all began with hip/pelvic pain, low grade fever, joint pain, and fatigue. Over the course of 2 years it progressed to neck and shoulder pain as well(one side) and I started having jaw pain. And now, scalp sensitivity( brushing hair, laying on pillow etc) swollen throbbing temporal artery and temple throb, unbearable at times, I’ve lost 18# in 4 weeks because I have zero appetite. I’m also getting inflammatory rashes on hands and feet and blistering of the scalp. I have photos of these and dr has seen them. I’m concerned about the lack of concern and the obvious progression of symptoms.

[Marilyn1959 in reply to Boozsa]

Go to A&E urgently if you suspect GCA, since your sight is at risk. Giving you just a short course of predisolone is tantamount to negligence if that is what you have. GCA is considered a medical emergency which you need to stress on arrival at A&E.

[Boozsa in reply to Marilyn1959]

I understand. I’ve been to ER and just got referred back to GP then to rheumatology twice since this started. Both rheumatologist did labs CRP, ESR and ANCA all normal limits at the time of appointments so I was dismissed. I did go to the eye doctor in August of 2018 bevause I was concerned and I did not have ocular inflammation at that time only a kinked appearance of the optic nerve. My GP wanted me back on prednisone but we are both concerned about it interfering with diagnosis because as of now I only have a vascular specialist consult not a scheduled TAB or other testing. I am mostly wondering if vascular approaches diagnosis differently than rheumatologist?

[piglette]

The vascular surgeon I saw for something different seemed to know very little about PMR, except the wife of a friend of his had it.

[Boozsa in reply to piglette]

Thank you I’m more hoping for a GCA diagnosis or vascilitus from the vascular doctor and then maybe it can be linked back to my early PMR symptoms so then the PMR diagnosis as well.

[piglette in reply to Boozsa]

It will be interesting to see how you get on.

[Boozsa in reply to piglette]

I will post an update after my appointment. I just appreciate this site for the simple reason that I’ve seen other posts of people who were in similar circumstances. It gives me hope for a diagnosis and proper treatment.

[pmrkitty]

You might request an ultrasound, that is a new way of diagnosing GCA and is a lot easier than a biopsy. I hope you get the help you need quickly and out of pain.

[Boozsa in reply to pmrkitty]

Yes. I have read some about that and noticed the vascular doc does head and neck US so fingers crossed

[HeronNS]

A couple of articles I have in my rather vast bookmarks list!

nature.com/articles/eye2013208

reviewofoptometry.com/artic...

[Boozsa in reply to HeronNS]

Thank you

[HeronNS in reply to Boozsa]

Considering up to 20% of PMR patients have normal inflammatory markers and the same is probably true for GCA, your doctors should not be dismissing you on that basis. Furthermore, if they refuse to say it's GCA/PMR they should be doing their utmost to determine the cause of your symptoms which are obviously severely affecting your quality of life, not to mention the possibility of long term issues if your eyesight is at risk. I hope you get some help soon and appropriate treatment. Good luck!

[Boozsa]

Thanks so much. I agree completely. I will follow up on my post after the new doc(vascular) on December 13th 🤞