Beyond frustrating visit to rheumatologist - PMRGCAuk


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Beyond frustrating visit to rheumatologist

Maggiemuffins profile image
15 Replies

So had my first consult with rheumatologist today . The results are frustrating and I feel like its back to square one with my headache. ( began in April in left temple artery ). So in a nutshell 1) the rheumatologist does not feel that I have giant cell based upon all clear blood and MRI results . AND that I’m not 50 years old ( I’m 48 - close enough). She is referring me to a neurologist now .

Also 2) she wants me to taper myself off of prednisone beginning tomorrow because it’s not GCA. I told her that the prednisone is the only thing keeping my headache at 1/10 pain wise. And if I go down to 5 mgs then the pain shoots up to 6/7 out of 10. She just shrugged and said well my family doctor can give me something for the pain . I told her my doctor has given me many pain pills and NONE of them worked only the prednisone and she wants me off of it . I won’t see a neurologist for months now and was given a really crappy game plan here.

I’m usually a patient person but I cried all the way home today . I really thought today would be a great day instead it was just a kick in the teeth . I tried telling her that some people are younger than 50 and have normal blood results and yet still have GCA but she said it was only 2% and she did not feel I had it . I just want my headache pain to go away. I’ve had it for 4 months now !! I’m so tired of this . 😞

15 Replies
Dream21 profile image

I do not have an answer. Someone in this group will know more than me, but I empathize with your feelings of frustration and vulnerability. Any disease makes one vulnerable, scared, and frustrated when not getting answers. Be gentle on yourself. I am sending you a HUG. I hope this is resolved for you soon.

Maggiemuffins profile image
Maggiemuffins in reply to Dream21

Thank you Dream21. Sending you a hug right back .

piglette profile image

Can you ignore the rheumatologist and get Pred from your family doctor?

Maggiemuffins profile image
Maggiemuffins in reply to piglette

My family doctor was the one who prescribed it so I hope she will . I will talk to my doctor early next week to discuss a better plan than this .

bunnymom profile image
bunnymom in reply to Maggiemuffins

Yes go to the sympathetic doctor

Caro12line profile image

Can you get a referral to another Rheumatologist? I had a similar experience and finally dx after a PETCT Scan. LVV of the Aorta and arteries leading off. Carotid was the one causing head pains. The fact that Pred is the only thing that will control the pain is highly suggestive of some form of Vasculitis. Good luck x

skibarski2 profile image

Hi Maggiemuffins

I know exactly how you feel, my headache right side of face on temple started in June 2017. Before I was even diagnosed with PMR, the Pred did not really help mines though, & I was very worried about GCA. Although never investigated for that by GP.. I was at the doctor constantly as the pain really was unbearable, this was not a headache as such, more of a stabbing of knives on that side of my face. It was so bad that I had to stop driving as my hands would automatically grab at my head. I had umpteen of these attacks a day by the time I asked my GP to please just try something if it is not GCA. She said there was something she could prescribe, try treating it with that, & if it worked then she would know we were on the right track. She diagnosed TRIGEMINAL NEURALGIA, the treatment is Carbamazepine, this starts on low dose & build up, I was stuck in the middle for sometime, but am now building to the highest dose available. This was suggested by. NEUROLOGIST who I saw a couple of months ago. Who agreed with GPS diagnoses. I have been stuck on 9MG Prednisilone March of this year. As GP just didn’t want to take the risk of it being GCA. Maybe you could ask your GP about this condition. I only get a couple of attacks a day now & NEITHER are anywhere as near severe as they used to be..This condition also gets referred to as the “suicide headache” that is how painful it can be, & was for me. Hope you get rid soon..

Take care.

Kate x

SnazzyD profile image
SnazzyD in reply to skibarski2

I’ve had neuralgia and it’s electric shock characteristic that makes one jump and clasp the face is so not like the pain i had with GCA. It came in ‘attacks ‘ that in way was worse because it caught me by surprise each time and I could never relax. GCA was constant and I felt very much on a different planet unlike neuralgia.

PMRpro profile image

So sorry - and the GP is no real help either. I really struggle to understand why they can't get their heads around someone being on under 10mg pred being less of a problem than being on potentially addictive painkillers - especially when pred works, painkillers don't.

And she is wrong - the figures quoted for normal range blood markers are between 6 and 20% of patients depending which study you look at. There are articles all over the medical literature warning about dismissing patients on grounds of age. An ordinary MRI doesn't show a lot either.

I do hope that your GP will be helpful and you can find another rheumy. I know it is difficult everywhere.

Hello Maggie

That is very frustrating & you feel so helpless that you can’t get any answers. I think seeing your GP is a good idea to discuss the outcome of the Consultation.

Very Best Wishes

Mrs N 💅🏼

Mike1964 profile image

Hi Maggie. It really is so frustrating and upsetting, you wait ages for an appointment in the expectation that things will be sorted, you then leave feeling like you've been dismissed and not listened too. I to hope your GP will be able to come up with a solution, also sending a hug. Kind regards, Mike

Jackoh profile image

Seem to have a lot of trouble with this site at the mo. Lost a couple of things yesterday so had to give up. Already wrote you a reply today- lost that!! But just to say how upsetting and annoying for you. I had burning, boring pains at the side of my head about 12 months after diagnosis of PMR. My bloods have never been significantly raised ( with only one exception) during the whole time of my PMR /GCA journey- so I am one of the 20% not 2% as PMRpro pointed out. I would certainly seek advice from your GP and maybe consider going to another Rheumatologist for a second opinion ( which many on this site have had to resort to) Let us know how you get on.

PMRCanada profile image

How awful Maggiemuffins!! Frustrating when you spend a majority of you appointment challenging the specialist who is supposed to be supporting and treating you. Being dismissed as the patient who is an expert in their own experience and symptoms is maddening!

I had a very similar appt with my Rheumy where she said she suspects I do t have PMR, rather seronegative arthritis (despite classic PMR symptoms, a positive response to pred, and negative for both RA tests). She said I was young for PMR (I’m 56), and pressed me to taper the pred according to a textbook (despite already having a flare trying to adhere to it).

I held my ground, got suggestions on how to taper from the folks on this site, and will meet with my GP later this month to request a second opinion. or ask him to monitor me (or my gp’s colleague who practises and has PMR!).

Lots of good advice and support shared already. Continue to listen to your body and ask to see someone else mo omg forward.

Good luck!

I am sooooo sorry... I can't even imagine how frustrating this must be for you. : ( I see others have already suggested what I would have; ask family doctor to keep prescribing, at least until you see Neurologist. I hope you can work something out. Best of luck, let us know how it works out.

arthur463 profile image

You simply must find another (expert) opinion - and very very soon. Pay for it if you have to. I was told that I had trigeminal neuralgia by my Doc, and given codeine. Instead, it turned-out that I had GCA, and I lost the sight of one eye before they woke up.

Do it!

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