Why do I still have temple ache?

[Akino]

I'm on 60 mg Prednisone for almost two month and on Prednisone since January 2017. I still get temple ache, headache and jaw stiffness. I'm having temple ache almost daily and wonder why?

Why do I still have pain in my temples?

[jinasc]

You need to talk to your Consultant and/or GP or failing that go to A&E.

It looks to me as though the dose they have started you on is not enough.

Sometimes people have to have a higher starter dose (ie 80mg or more) and you could be admitted to hospital and be monitored and perhaps given the pred intravenously.

You really need to take action and swiftly. If your sight becomes impaired in any way and not treated timeously whatever is lost is lost and gone forever.

GCA is not to be messed around with or ignored by anyone. Those symptoms have to be controlled and now.

[Chrissielil]

Hi

You must get this sorted before you could lose sight. I'm not trying to a at a your sight. Go to A /E. You must not let this thing take anymore please?. It's suffering and enduring for all of us as it is.

If only other people realise the suffering? Plus their families.

Please let me know how you're how you're getting on. because doctors should not be leaving this.

Speaking from my experience of this bxxxzxxd disease. It humseems the pain is that bad right now. I'm quite young for this so my immune system is strong. I rarely get a respite from pain. I've got a little baby grandson I love him so much. I've also got a medical degree I underastand what this is. However I have never seen it before.my collages have. It presents with all sorts of ways.

I had pain I couldn't move with. They through steroids at me and tramodol.

I knew about autoimmune diseases you're own immune system attacking your body the muscles in this case. However what's makes the thing turn on you and starts chopping your life away depends on your own doctors.

I decided to tell it to xxxxxxxx xxxxxc but that didn't work either.

Go back to whoever is looking after you and don't take no take no for an answer.

Take care and please look after you x

[Celtic PMRGCAuk volunteer]

Akino, I agree with the others. You need expert investigation and advice, and you need it now.

At my very first appointment with my rheumatologist, having been started on 40mg a week by my GP a week or so previously for GCA/PMR, he gave me a steroid reduction plan and a telephone number, advising me to get in touch immediately should my head/temple pain return

As Sambucca has said, you may need a slightly higher steroid dose to get the inflammation completely under control, and having continuing temple pain after 2 months on 60mg does suggest the need.

[Akino in reply to Celtic]

Funny thing is, when it all begun my symptoms weren't as strong as they're now. The pain in my temple now is much more like pain. Before it was more like discomfort. The stiffness of my jaw comes with chewing now and wasn't there before as much.

Tomorrow I can get my blood work done and when I got the results I'll take action. Thank you Celtic!

[PMRpro Ambassador]

Either the dose is not enough or it isn't GCA. Your doctor should be concerned and looking for answers. I assume you are under a rheumatologist? And how was the diagnosis made? Just on symptoms or a biopsy?

[Akino in reply to PMRpro]

Hi PMRpro,

diagnosis was not clear, biopsy negative, ESL normal, CRP 59. Symptoms: 8 days nausea and new headache and temple ache left. I thought its Vertigo. Jaw stiffness after chewing. Sometime I feel my hearing is compromised, but it comes and goes. Chronic cough for more than two years. I see a rheumy, next appointment is June 6. CRP count will be done tomorrow.

I got my eyes checked this week and the optical nerves are perfectly healthy, what gives me some relief.

I noticed that even everyday things can stress me out and make me feel pain in my temple. And I have stress that can't be prevented. I'm not great with meditation.

[PMRpro Ambassador in reply to Akino]

All sounds very suggestive of GCA - or at the very least, it needs consideration if nothing else. All of those are listed as GCA symptoms.

[Akino in reply to PMRpro]

yeah, I agree. It really looks like it. Even with all the ' not so typical' symptoms.

Thank you for responding again. You're such a great helper and I just want to give you a big hug!!!

[SnazzyD]

Hello,

Just a thought while you are waiting (but not too long!). Have a look at Temporomandibular Joint Dysfunction. It is similar but there are differences and this site tells you which bits to poke to test for it. If you are a jaw clencher or teeth grinder with all this stress with every day stuff, you might have this instead of or as well as.

patient.info/doctor/temporo...

[Akino in reply to SnazzyD]

Will do! Thank you!

[Trixiechamp]

Hi Akins

I have been having this too...in fact this morning I was struggling eat my oatibix flakes because the pain is so bad...I'll still to oatabix hot, it's difficult to grab something so I get something down me to take the mountains of tablets...something to mention on Monday....

[Akino]

We should perhaps have as smoothy instead, something we can drink instead of chew. Worth trying?

[Trixiechamp in reply to Akino]

Like I said, normal oatabix with warm milk is fine...I worry about the sugar though and same with smoothies, going to try and get up and make scrambled eggs instead...

[Akino]

I'll have an appointment with my Rheumy next Thursday and try to take it easy till then. I just had my eyes checked (last week) and all looks good.

Thank for making me aware of the seriousness of the headache situation. If I feel things are changing I'll go to ER! I have to admit I'm still learning. Especially how unpredictable each new day can be. Today was a bad day, I felt just really sick. Hope for a better Sunday. Thank you for your post!!! And I'm so glad for you your eye sight returned!

[Akino]

I like to know my monthly CRP as well. Nothing wrong with a bit of obsession!