Flare up?

[Daisymay]

Hi, thought I had this condition sussed but think I have a flare up but the Dr says it's sinuses. Had pain since the 6th Feb in my nose and brow and was given a steroid spray but didn't do anything. Pain in my head now and sore scalp sometimes and I feel inflamed in my head and body. The pain doesn't seem to be in my temples but I do get it in my jaw off and on and my shoulders are painful. It's the hot feeling that's getting to me. I have to take paracetamol to sleep just a few hours. I asked the Dr for a blood test but he said it would be raised anyway if I had a sinus problem and didn't want to overmedicate me . Phoned again this morning and waiting for a callback but don't have much faith in anyone any longer .I'm on 3mg pred. Did go up to 5mg for a few days but no difference. Have been on low amounts for a couple of years. Can I try 10mg for a few days to see if it helps and if it does can I come back down to say, 4? Sorry for the ramble.

[DorsetLady PMRGCAuk volunteer]

See this post re dealing with a flare - healthunlocked.com/pmrgcauk...

Also just replied to previous post on similar subject see that as well as related posts

[Daisymay in reply to DorsetLady]

Thank you for the swift reply. Have read and makes total sense. Just needed an action plan.

[DorsetLady PMRGCAuk volunteer in reply to Daisymay]

Action plans are us! 😊

[SheffieldJane]

As one of the people on here who developed GCA and Large Vessel Vasculitis after tapering down to 3 mgs following about 5 years of PMR only, I tend to see this as a possibility in other people. My symptoms didn’t affect my jaw, or anything consistent in my temples or scalp. I believe that my Rheumatologist considered it to be non cranial initially, I think the term was GCA in the peripheral arteries. I have certainly experienced pain everywhere except my jaw when chewing, since diagnosis. My diagnosis was achieved via specialist ultrasound scan. I would like to think that your doctor was investigating this possibility in you. I certainly felt unwell in a feverish way. Our pains have been dismissed as sinus trouble before. Perhaps a referral up the line to Rheumatologist or Vasculitis specialist would be in order. Look out for the typical signs of Temporal Arteritis such as an unusual headache, jaw claudication and any symptoms that affect your eyesight - this would be a medical emergency requiring an ambulance/A&E.

[Daisymay in reply to SheffieldJane]

.Just had a call from the Dr who is going to book me in fir a blood test today which is something but after three calls I still havnt managed to see one in person. My rheumatologist signed me off after the last call as stable (we don't see them in person any more either) so I will have to make contact again. Thanks for your help

[PMRpro Ambassador]

To be fair, if paracetamol helps we tend to think it it less likely to be GCA. Is the "on and off" jaw pain linked to chewing/stopping chewing? If chewing gum for 3 mins or so at 1 chew per second elicits pain, that is strong evidence for GCA.

[Daisymay in reply to PMRpro]

I can eat without any pain and its a face ache type of pain. The paracetamol helps me get back to sleep so hopefully not GCA. My scalp is sensitive to the touch but not all the time. I fel hit inside my head like I would expect inflammation to feel if you know what I mean. Even my lips and cheeks feel inflamed. Not sure what it is realy but was assuming a flare up. Thanks for the reply .

[PMRpro Ambassador in reply to Daisymay]

Then it isn't the claudication that is typical of GCA - that is pain associated with movement. But if you get any visual symptoms - don't mess about, you must see a doctor quickly, go to A&E is necessary.

[Telian in reply to Daisymay]

Whatever symptoms you get just be mindful of visual disturbance above all. Treat it as a medical emergency and go to A&E. I had a positive diagnosis of GCA via ultrasound with a negative biopsy 4 days later. Being on steroids and not getting the inflamed artery at biopsy is quite common in giving a negative but doesn’t mean you haven’t got it - as in my case. I never had jaw claudication either but regularly had facial numbness on the affected side. Headaches were like no other and didn’t respond to any painkillers. I was being treated for migraines until I lost vision in one eye. My GP knew about GCA and fast tracked me to Rheumatology where swift action and Prednisolone took all symptoms away including returning lost eye sight . I was so lucky. Symptoms over rule blood tests Professor Dasgupta taught me. You do need a referral to Rheumatology to get the correct diagnosis.

[Daisymay in reply to Telian]

Thank you. I am going to re refer myself to rheumatology . They took me off their list as they said I was stable but I felt that I he'd to he in the loop again. I wil be mindful of my symptoms . Its nice to have back up here for advice, from the people who I feel know the most about this condition.

[Telian in reply to Daisymay]

Make notes of your symptoms to take with you and enforce how you feel remembering symptoms over rule blood results. It’s important to get the correct diagnosis in the first instance.

[Daisymay in reply to Telian]

Thank you. Will do .