I am new here

[Abikitty]

I just recently fell upon your site and have already learned so much, thanks to your posts. My symptoms have been "overwhelming" to say the least. Tomorrow I see my Optometrist for my double-vision and have tested positive on ANA-DNA with my primary who is trying to get me in to see a Rheumatologist for a diagnosis. The earliest I can see anyone is June 6th. Just finding your group site is a relief.

[winfong]

Welcome! Let us know what your results say. What kind of symptoms were you having?

[Abikitty in reply to winfong]

Thanks to everyone for your quick response. Symptoms: high blood pressure, rapid pulse, pain at base of scull, headache in back of head , throat discomfort, difficult to chew & swallow (>R), (B) ear pain, ringing in ears , joint pain, chills, profound fatigue, hands feel cold, muscle weakness, double-vision. No one has said anything about PMR or GCA yet. My Cardiologist increased my BP meds dosage which is lowering the BP. I told my primary care that the symptoms felt "systemic". Now I just have to wait until June 6th for a possible diagnosis with a Rhumatolgist.

[Abikitty in reply to Abikitty]

Also, I had pain at temples (bulging arteries), & top of scull painful to touch.

[PMRpro Ambassador in reply to Abikitty]

If you develop ANY other visual symptoms at all - please don't wait for June 6th, get to the ED/A&E immediately. Too many of those symptoms tick boxes for possible GCA already. However - the ANA being positive does balance against that but other things can cause similar symptoms. In fact, I wouldn't wait ...

[Abikitty in reply to PMRpro]

Just returned from my eye doctor who checked my eyes and also advised me to contact my primary care doctor to ask for a referral to obtain a biopsy of temporal artery to rule out GCA. That appointment is a 1PM EST, so wish me luck. . .

[piglette]

Has anyone said you might have PMR? If so can you get a trial dose of steroids?

[Abikitty in reply to piglette]

No one has mentioned PMR, at this point. Any advice on standard "trial" dose of steroids?

[DorsetLady PMRGCAuk volunteer in reply to Abikitty]

Don’t think there is a set protocol-but 15mg per day for a week to 14 days may be enough to persuade your doctors you have PMR. If they are thinking about GCA then higher dose and a maybe a TAB ( biopsy of temporal artery) is required

[Abikitty in reply to DorsetLady]

Would beginning prednisone prior to TAB possibly have an effect on results ? Just wondered.

[PMRpro Ambassador in reply to Abikitty]

Depends on the dose and for how long. The opinions are mixed - but a TAB isn't absolute certainty anyway. If it is positive then it is 100% confirmation it is GCA. If it is negative it isn't proof it isn't GCA - it just means they didn't find what they were looking for and then they have to go by the signs and symptoms and make a clinical diagnosis.

[Abikitty in reply to PMRpro]

Got it! Lots to learn 😌You are the BEST!

[DorsetLady PMRGCAuk volunteer in reply to Abikitty]

Ditto to PMRpro’s answer.

[Nextoneplease]

Hi Culo and welcome 😊

I’m sorry to hear you’ve been so unwell. I have to admit I didn’t know what an ANA-DNA test was but I looked it up and see it indicates you almost certainly have one of a range of autoimmune diseases. I wonder what your symptoms have been? As your primary care doctor is referring you to a rheumatologist I guess that narrows it down a bit. Could you let us know a bit more please?

In the meantime I wish you well and look forward to hearing more 😊xx

[PMRpro Ambassador]

Having a positive ANA indicates a range of autoimmune disorders - but is usually normal in PMR. But we'll hold your hand in the meantime - if they choose something else there may be more appropriate forums for you but many of the aspects of living with a chronic rheumatic disorder are the same whether it is PMR or something else.

[67Blue]

Hi, welcome, I'm still learning from the experts on here, but with a lot of your symptoms plus high inflammation in my blood test I was put on 40mg of pred, which sorted most of my pain within a few days, but still had the bad jaw and the most horrendous pain in the muscles of my tongue for some time. It took 6 weeks to see a Rhumat. is it was a bad covid time in the hospitals winter 20' so I missed the Neurologist? I should have seen for a biopsy on my temple as the pred would have masked it anyway. I was diagnosed with GCA/PRM thankfully by my Dr and eventually the Rhunmat. the fact the dr got me on the steroids so quickly certainly stopped me losing my eye sight -- or going blind as he so brutally put it. Sadly though since then he hasn't been very forthcoming. And was useless when i was diagnosed with high eye pressure, just said it wasn't very high. Luckily I ignored him. The best help I get is from a specialist nurse at the Rhumat. section at the Helpline at the hospital. As they are so short of staff she just relates my worries to a rhumat. (sometimes a bit muddled) and then gets back to me. So if you get involved with the hospital ask if they have one as I only found out by accident about 8 months into the diseases. Good luck

[Abikitty in reply to 67Blue]

Thanks for the great information, I so appreciate you sharing: It made me feel much less "alone".My televisit with primary resulted in her ordering lab work, scheduling an MRI, and TAB (no prednisone suggested). Called primary back to ask if we should go ahead with prednisone, and she hasn't called back yet. My lab work came back: low RDW, high Platelets, high AG ratio, high alpha-2-globulin, high globulin, suspicious monoclonal immunoglobulin, high, C-reactive protein, and normal sed. rate.

I have no idea what these indicate, as my primary still has not called me back and it is late Friday, so I don't expect to hear from her until Monday am. Meanwhile I will "tough-out" the weekend with hopes of feeling a little better.

[PMRpro Ambassador in reply to Abikitty]

High CRP suggests suggests systemic inflammation as does the high globulin results - and both commonly seen in autoimmune diseases.

However, overall, there is a lot to suggest GCA is a possibility which I'd also say she isn't necessarily taking as seriously as she should - there is no reason not to start steroids in the meantime while waiting an undefined time for a TAB that may not be conclusive anyway. If you get ANY increasing visual symptoms please go to the ED immediately with the results and details of all your symptoms. Once visual symptoms excalate in GCA there is no time to lose.