To doubt or not to doubt

[Boozsa]

I need advice! I am a 43 year old female suffering for 3+ years now and believe it’s PMR and now GCA. Her goes: I first presented with the classic PMR symptoms: hip/back/leg pain, joint pain, low fever on off, fatigue and stiffness. I had a positive ANA so got sent to a Rheumatologist who did labs. Here is the kicker, normal labs. My ANA remains positive, my ESR always negative and my CRP only mildy(1-2 points) elevated at times. So, roadblock after roadblock to any diagnosis. Now fast forward about 1 1/2 years and I stated getting jaw, face , head pain. Now headaches with some vision disturbances and a hard swollen sometimes bulging temporal artery. Pain flares up and down throughout the day and night. Sensatibe scalp, touching it can trigger it, or laying on a pillow,I’ve had little blisters on my scalp and acrosss my pelvic bone where I sometimes experience pain and swelling there as well. Primary care dr put me on prednisone 60 mg. I got better in 2 days, reduced it to 40mg and then took me off completely when he consulted another dr about a TAB for me who said I was too young and my labs were negative. Symptoms are back now and I just got back from the ER having a flare up of pain. BP was elevated 140/105

I’m home now waiting for a general surgeon to hopefully see me for a TAB, not scheduled yet office is calling me Monday after they talk to surgeon.

Does this sound like PMR/GCA to anyone else? Is diagnosis almost impossible if your young? And should I take the prednisone again like the ER doc said? I’m terrified of finally getting a TAB and having it be negative because I’ve been on steroids. I was already on them 1 week, now off for 3 days with symptom return. What to do? I will know something Monday or Tuesday I think

Please help. Any and all advice is appreciated. This has been so incredibly diffficult

[Joaclp]

I saw this earlier and was concerned about you. You say ER and not A & E, so I'm guessing you are in the US. The people who have the best answers about GCA are in England and elsewhere in Europe and are probably asleep right now. They most likely would say that symptoms are more important than blood work or age. Personally, I would want to treat the possible GCA rather than risk loss of sight, so I'd take the pred as the ER dr instructed. And, then worry later about the TAB result. Someone should be able to advise you about risks and what to emphasize with the drs. The positive ANA and the blisters might suggest another autoimmune condition. You might ask.

My limited "authority" here is as someone who has all the classic PMR symptoms, but who also has a rheumatologist who is skeptical because I've had other autoimmune conditions. I'm waiting to take enough pred to see.

All the best in getting a diagnosis and treatment.

[Boozsa in reply to Joaclp]

Thanks. I’m in the US. Hope I can get some more feedback tomorrow. I think the little blisters are common with flare ups, especially when the scalp is super sensitive like mine.

I’m just concerned with all the heart/ chest pain issues at the moment.

[PMRpro Ambassador]

It COULD be GCA - and yes, diagnosis if you are young is almost impossible unless you are very lucky in your doctor.

There is medical literature that warns against missing GCA because of assuming it never happens under 50 - though there are plenty of doctors who won't accept patients in the 50s having GCA. and most of what you find online supports that blinkered view.

There is another form of arteritis found in under 40s called Takayashu's arteritis and it can mimic all of GCA's symptoms - in fact, I know someone who was diagnosed with Takayashu's in her 40s but noticed in her early 50s that her diagnosis was now GCA. When she queried it she was told that it was the same disease but they call it GCA in over 50s.

vasculitisfoundation.org/mc...

I really don't know what to suggest - whereabouts in the US are you? You didn't mention chest/heart pain in the original post - but if you read the link you will see that Takayashu's can present with chest pain. However - if you have any more visual symptoms make sure you see a doctor urgently. There are all sorts of things that can lead to visual loss.

[Boozsa in reply to PMRpro]

I’m in Washington state. The elevated blood pressure and chest pressure and pain is new.

[PMRpro Ambassador in reply to Boozsa]

The best I can suggest is to google GCA vasculitis and Seattle and see what you can find - you need a specialist unit to consider rare possibilities.

[Boozsa in reply to PMRpro]

Ok thank you

[Boozsa in reply to Boozsa]

Also sorry for the double post, mistake

[PMRpro Ambassador in reply to Boozsa]

Doesn't matter - often happens

[Boozsa in reply to PMRpro]

Do you know of anyone or experienced an elevated WBC and elevated absolute neutrophils with PMR or GCA? I just finished two rounds of antibiotics and these just came back elevated on me. My CRP and ESR were at the high end of normal and came down after the big dose of prednisone for a week, but these went up. Just looking for a similar circumstance. I have an appointment Tuesday with a new GP, so fingers crossed for some answers.

[PMRpro Ambassador in reply to Boozsa]

No - although they tend to rise once a patient is on pred they are not usually raised in PMR or GCA before pred. Were they raised soon after the big dose of pred? Is that why they gave you antibiotics?

However - PMR is only a symptom of an underlying health condition. In our case it is an autoimmune disorder but there are several different causes and some would register in a full blood count.