34 yr old with Temperal Arteritis?

[Hmc10]

Anyone out there younger with this diagnosis? I believe this is what I'm dealing with but docs don't even want to entertain the idea because I'm too young. I'm 34. I'm feeling lost & scared. I'm on 4mg dose pack of Medrol steroid. It isn't helping much. I took this same dose pack a month ago & it helped. But not so much this time. Waiting to see nuero doc. 9 more days to go til I see doc but I really feel like I should not be sitting here waiting.

[SnazzyD]

Hello, sorry you’re feeling so lost. There isn’t much information in your post for anyone to be able to comment. Nobody can give you specific medical advice but information and experience from those who have been around these conditions a long time . It would help if you could state your symptoms. Is that 4mg prescribed or self medication? Is there a reason for that dose level?

[Polywotsit PMRGCAuk team member]

Hello! I can understand you feeling alone and confused. But don't let yourself get into a panic. You haven't really said anything about your symptoms, but in any case we are not in a position to say one way or the other. Just be assured that GCA in people under 50 is extremely rare so it is much more likely that you have something else causing your problems. For example, there are other forms of vasculitis, also autoimmune disorders, that cause symptoms similar to GCA. For cranial symptoms, there is a condition called Crowned Dens disease which is caused by crystals forming in the dens, the dip at the top of the vertebrae where your skull sits. So while it's awful to have to wait, it's worth taking the time to find out the true cause of your symptoms. Good luck!

[Hmc10]

Thank you for the replies. I apologize for the lack of information. I have just not been myself lately. As far as symptoms go I have pain in my temples, left temple mostly. Also, pain in & around my eyes. My jaw. My ear. My neck. I can eat without pain. I have heard of others having pain when eating but also I have a blood vessel in my temple that is raised & very tender. I can't touch it hardly or it will trigger more pain. I can't see it raised, but can feel it. My 4mg Medrol was prescribed for the pain in my head. I get told its sinus related but I do not believe that any longer. MRI only showed some sinus in my right cheek. I was just wondering if anyone heard of someone my age having this condition? I know its rare, but I seem to have these symptoms. I am very scared. Most docs won't really listen to me because of my age so I'm feeling very lost. I am a single mother & have to be healthy for my daughter. Thank you for any replies or advice!

[HeronNS]

Although GCA is considered a disease of the elderly (over 50) there is another vasculitis which sometimes presents like GCA, Takayasu's arteritis, and is found in younger patients. In fact there is some thought, a bit controversial, that the two diseases are different manifestations of the same disorder. mayoclinic.org/diseases-con...

So KateGilbert is right, it is definitely worth getting a proper diagnosis. If you have visual changes at any time while you are waiting for your appointment go to the emergency department as this is something to be treated as seriously as a heart attack or stroke.

[PMRpro Ambassador]

It isn't impossible (and I could give references if you want them) but it is fairly unlikely - but there are, as has been said, other sorts of vasculitis which could cause similar symptoms. Takayasu's is one option.

Really all any of us can say is you need to find a doctor who will take you seriously - and is there any chance of you getting to a Mayo Clinic or another university hospital? If/when you do, then take someone with you - somehow it seems to concentrate their minds a bit. Especially if the accompanying person is male. It's wrong - but that is often the way it is.

Hopefully the neuro will be more helpful.

[Hmc10 in reply to PMRpro]

Would Takayasu show on MRI & MRA? I had both tests done 2 about 10 days ago. No contrast. MRI only revealed sinus in right cheek. I know TA usually doesn't show. Which kind of left me thinking its more of a possibility that I could have it since nothing showed. I feel it will be hard to find a doc to truly take me serious. Thank you for your help.

[PMRpro Ambassador in reply to Hmc10]

I honestly don't know. Not my field at all.

Though it is fair to say that many things will only be found if they are looking for them.

[Hmc10 in reply to PMRpro]

So true!

[PMRpro Ambassador in reply to Hmc10]

However, I just looked. MRI SHOULD show it. So would CT. If they were looking!

[Hmc10 in reply to PMRpro]

Thanks! I'm actually at ER now. They are checking my SED rate. Again. First time was normal reading at my primary doc. The ER doc is already telling me he doesn't think I have TA. I hope he's right. But I did tell him I need a doc to listen & take me seriously.

[Hollyseden in reply to Hmc10]

Such a worry for you. Hope you got some satisfaction from your ER visit.

[sondya]

A rheumatologist should be more helpful than a GP as they are more conversant with vascular diseases. An opthalmologist will do tests to see if there is pressure on the eye and also advise that a biopsy of the temporal artery is done.

We were all scared, Hmc10 - but thankfully I got a diagnosis relatively quickly.

It if is GCA and not treated immediately, it puts you at risk of losing your eyesight in one or both eyes. The scary bit is not knowing. Fingers crossed for you!

Google GCA, look through the summaries. These will help.

[Hmc10]

I went to the ER today. The thought of sitting around with these symptoms until I see my nuero doc on the 22nd just had me in a panic. The doctor took my SED rate. It was 26. He said that was "okay". I'm already on low dose steroid so I worry it would have been higher without the steroid. But the doc doesn't think I have GCA. He thinks it could be TMJ. Or either a nerve issue that I forgot what he called it. He did put me on 20mg of pred 3 times a day for now until I see my nuero doc on the 22nd. I'm still having symptoms. But seems not as bad. For some reason I just know in my heart its GCA. I hope not. I hope there is a less scarey answer to my symptoms. I've had MRI & MRA already. Results were normal. But I know GCA won't show usually on those tests. I'm scared of a biopsy because it isn't that reliable & the risks don't seem worth it. I just want to feel like me again & get back to happy days with my daughter. I appreciate all responses!

[Nethyman in reply to Hmc10]

Hi,

All I can add to the very helpful comments above is, as a GCA sufferer since May 2016, I have made excellent progress with the right treatment. That is the high dose of Prednisolone that you have now been prescribed. It is difficult to say do not worry, but keeping pressing the medical profession for the best advice. Also, make notes of what you need to ask the Consultant, etc and do take someone with you. I had great difficulty in remembering what I wanted to ask and also remembering what had been said.

David

[Ruadh]

Hi - definitely a quandary. Instead of a biopsy, have you - or the ER doctor - thought of an Vascular Doppler Ultrasound ? Not invasive, no contrast dyes, straight Doppler vascular Ultrasound. Painless. Is considered a good Dx for GCA : much information on the internet. Courage - go well -

[Rosedail]

Hello Hmc10

I really encourage you to prepare for your appointment in the 22nd by keeping a health journal of your symptoms each day while on these medications and by writing all your questions this week in a list. AND by asking a good friend to accompany you. Ideally, you want someone who will think clearly, take lots of notes on what the physician says, and who won't be afraid to ask the questions (from your list and as they come up) you may forget to ask while you are trying to process everything the physician is telling you...and the emotions that naturally accompany them. I did that with my mother several months ago when she was facing open heart surgery and she found it clarifying and reassuring when facing a very frightening decision. One of your questions might be "If it is possible that this is a form of vasculitis, should I see a Rheumatologist?" And other questions that have arisen from this forum.

Also, you seem to be very proactive in getting to the bottom of this health issue. Good for you!!! Your daughter has a smart, brave and committed Mom who will get through these challenging times! Best wishes! Jenn

[Hmc10]

Thank you all for any help & advice. Its nice to know I'm not alone. I started my journal today. Still feeling pain & pressure in my temple & some jaw pain today. I notice sometimes when I bend over its worse. I'm just praying for the best outcome. And trying my best to keep my spirits up.

[PMRnewbie2017]

Please talk to your pharmacist about taking your corticosteroid three times a day. This is not considered best practice in the UK. It is more usual to take the full dose (in your case 60mg I believe) at once,and early in the day (before 8am if you can). There is a lot of information supporting this on the "www" .

[Hmc10 in reply to PMRnewbie2017]

Thank you. I was wondering this myself. I thought maybe this why I feel pain still. But I was scared to take so much at once without a doctor telling me so. I believe that doctor prescribed it that way because he doesn't think I have TA/GCA. He thinks its either TMJ or some nerve issue. ER docs never listen to me. And the fact that I'm only 34 really makes up their mind that I'm just fine. Frustrating. I hope they are right! Thank you for your advice!

[HeronNS in reply to Hmc10]

PMRnewbie is correct, and especially in the case of GCA it's recommended to take the full dose at once. People with PMR eventually may choose to split their dose but that is another issue altogether and we are all told to have a single dose in the early morning to begin. Pred is not like some other meds where you must spread the dosage out.

[Hmc10]

I meant to ask, has anyone ever had itching as a symptom? I notice in the area I hurt it itches lightly. Off & on. Mostly itches around my temple.

[Hmc10]

I looked on my prescription bottle & I have been taking them wrong. So today I took all at once! Thank you for pointing that out or I may have not have checked again!!

[PMRnewbie2017]

Well done. Glad that's sorted.

Best wishes

[Rosedail]

Hello HMc10: Did you have your appointment and how did it go? More importantly, how are you doing?