Temporal Arteritis

[Lin-63]

Hi, I went to see my Rheumatologist last week ( a very nice man) and my O.H. came with me, so that if I forgot anything maybe he would remember. Anyway even though Dr. explained they didn't find anything in the biopsy, but also explained how it can be missed. However due to something in my blood tests and clinical observations he is confident that I did /do have Temporal Arteritis. I am now on 30mg a day of prednisolone , on a sliding scale from 60mg. My question is this, I still get pains in my head, but, nothing like at first. So how do you know when you have reached the right dose ? I'm still slightly confused !

[orsen-trapp]

Unfortunately Pred can also cause headaches at a certain dose - I called them 'predaches'. As for the correct dose, I get the impression it's all trial and error as everyone's different. If worried, see your doctor. (Or, as a quirky notice on the Flam railway helpfully puts it, 'If anything unusual happens, call the guard'.)

[JontyW]

The "right" dose is that when the vasculitis symptoms are 'contained' and so not causing a problem, and probably, but not definitely, confirmed with blood results showing reduced CRP (inflammation marker) or other indicators.

So the current dose of 60 -> 30 mg has reduced the activity, which is what normally happens with a large pred dose, but the vasculitis is still active. You may need to also be on an immuno suppressant drug to calm the immune system & stop it from attacking you, which is the root cause.

This is a good link here is what it says about Temporal Vacsulitis. You will see that steroids are usually required for 'up to one or two years'

vasculitis.org.uk/about-vas...

"Treatment

============

The two aims of treatment are to relieve patient’s symptoms and prevent damage to organs (especially the eyes) due to reduced blood supply. High dose oral steroids (Prednisolone) are usually given and the dose is reduced slowly over months, using the ESR marker as a guide to response. Treatment with steroids is usually given for at least one or two years.

In some patients with resistant or problematic disease other drugs are sometimes used such as methotrexate, Azathioprine or antibody therapy such as infliximab. While some patients may respond well to these drugs there is no current evidence that they are effective in all patients."

[Hidden]

I'm surprised your consultant hasn't suggested methyl pred infusions. I had five in the beginning, all 1,000 mg each. Also on a sliding scale of pred tablets. Down to 10mg now. Been on them since September when I was on 40mg. It's a long haul.

[Hidden]

Hi Lin, you raise a good point that everyone with the label of temporal arteritis asks. Temporal arteritis is the most common form of vasculitis and is caused by giant cells which attack the walls of the arteries causing inflammation. These giant cells are found in the large and medium arteries throughout the body, not just in the temporal region. There is no way of knowing what other arteries are involved. The illness has flares and remissions, the remissions are usually due to the level of medication being sufficient. Throughout my 2 years, I have had a lot of headaches in the region of my temples, sensitivity across my skull (cranial area), earache and ringing in my ears, stiffness in my jaw joints, discomfort at the front of my neck and cracking of my neck joints. There was some concern that the roots of my back teeth are dead. That's just the head region! I have a preference for not being in pain and discomfort but my doctors dn't feel the same about this as I do!

[Lin-63]

Hi WMTuk, the headaches are a *******. Pain to Drs however well meaning they are seems a side issue. I have various other "ailments" so pain killers .............! My pain in my head is on both sides of my temple. Trying to explain that its a "pain" not a headache seems to go over their heads as well !

[AndrewT in reply to Lin-63]

Yes that Is always difficult Lin. I don't have your 'sort' of vasculitis and my pains tend to be more 'tummy troubles' (mostly constipation related). Some Doctors/Consultants are more understanding though. Can you get to Cambridge-I'm only asking because Dr David Jane, the leading authority in the country (world?) is based there. He is also a consultant to Vasculitis UK our sister organisation, so, if you can get a referral-and you don't live on the moon-please do try his team. In any event I wish you well.

AndrewT

[Lin-63 in reply to AndrewT]

Thank you Andrew, but travelling at the moment isn't easy as I have several other health problems. But I will bear this in mind.