Does lenght of time before diagnosis result in longer time on steroids?


I was diagnosed in June 15 with PMR/CGCA after 5 years of not being diagnosed. 40mgs preds was prescribed and I am still unable to be comfortable below 20mgs. Intermittent pain between 20 and 18 but once down to 17.5 headache and general pain and feeling of illness.

I read an article whiich says:

"Your outlook for temporal arteritis will depend on how quickly you’re diagnosed and start treatment. Untreated temporal arteritis can cause serious damage to the blood vessels in your body. Call your doctor if you notice new symptoms. This will make it more likely that you’ll be diagnosed with a condition when it’s in the early stages."

So my question is, if not diagnosed quickly does it take longer to reduce the steroids? Has long term damage been done to the blood vessels?

Thank y ou

15 Replies

  • I think you'll find that it's not necessarily the case.  I was undiagnosed for about 14 months, but in the ten months since diagnosis I've tapered from 15 to 5, which is pretty good.  The issue really is any tissue damage caused by PMR before treatment, but the actual inflammatory disease is probably going to last as long as it wants and go when it wants, whether or not you've been treated.  Sure the experts will have some research documentation about this - I'm just speculating.  

    Reduction in steroids will depend on several things, main one being the underlying disease which has a mind of its own, the other factors are how well you can manage your general health, and especially whether you're able to reduce stress and give your body a chance to rest and heal.

  • Thanks HeronNS, if that is the case I guess stress maybe my main challenge .... its an ongoing issue .

    Thanks for your comments

  • Hi Lesley,

    Interesting question. I was diagnosed with GCA in April 2012 - 18 months after symptoms originally started, and only after I'd lost the sight in one eye. I started at 80mg and now have just got down to 1.5mg, although since reaching single figures I have deliberately taken a very slow reduction plan. 

    I have always thought that because someone with GCA, whether diagnosed quickly or not starts on a much higher dose than someone with PMR, then the reduction time would obviously be longer. However, It could be because the blood vessels are more damaged - although one could also argue that the high doses of Pred would act more efficiently on those vessels - so that would counteract the effect! 

    In your own instance, 40mg is not a particularly high dose in respect of GCA, so your continuing problems could mean that you have not been prescribed enough Pred to get, and keep the inflammation under control originally, or you may have reduced too quickly. If you are okay at 20mg then why not stay on that level for longer before you try reducing again. Have you spoken to your doctor about this, if not then perhaps you should. 

  • Thanks Dorsetlady

    Yes, the Rheumy and gp seem happy to keep trying to reduce and to be honest I am struggling on the steroids, working with pred head as I call it, is not always easy. I seem to hit a brick wall at about 1pm so have temporarily reduced my hours so I go home rest for a bit then pick up emails later etc.

    Thanks for your comments

  • Lesley, you are extremely lucky if you had GCA symptoms for as long as 5 years without treatment that you didn't experience much more serious consequences.  Did you experience 'just' body pain during all that time or did you experience the severe head pain affecting the temporal arteries during all that time?  If you are still struggling to reduce from the high doses,  I would think the main cause could point to not having been on the 40mg starting dose for long enough in the first instance or reducing thereafter by too large amounts rather than depending on the length of time before diagnosis.  However, you are only some 9 months into your treatment and it can be difficult to reduce the steroids without flares in the inflammation in the first year or so.  I had severe body pain rendering me unable to get out of bed for several months during my first undiagnosed year.  All the pain resolved spontaneously within that year but within a few weeks returned together with even more severe symptoms eventually diagnosed as both PMR and GCA.  A steroid starting dose of 40mg proved successful for me with all the head/jaw pain, vomiting and nausea disappearing as if by magic within a couple of hours.  The PMR symptoms proved a more difficult nut to crack.  

    It is now important for you to be monitored annually to rule out any sign of an evolving aortic aneurysm - a risk due to GCA.




  • HI Celtic

    I had the PRm for 5 years and the GCA for about 2 years, I was being treated for TMJ, I had many of the symptoms, jaw claudiation, face pain - although they kept saying the eye pain and the surrounding area was sinusitis! I had put the constant headache down to stress. Pain went as soon as I was on steroids,  but reducing seems to be a bit of a pain. 

    If I go to low pain comes first to neck and shoulders, then head. So taking it slow but it was just the article made me curious ....

    Thanks for your comments - always interesting to hear other peoples experiences.

  • Lesley, "reducing seems to be a bit of a pain" is a bit of an understatement if many of our experiences are anything to go by!  It is all a bit of a learning curve but you will gradually get used to knowing the signs to look out for as you reduce, and how to manage your own personal 'journey' (we can all be a little different in how we respond to both the illness and the treatment), and if we learn anything else whilst facing the challenge of living with PMR and/or GCA, it is patience!

  • Dammit, I struggle with patience !

  • I can't wait to learn patience!   😃

  • I was diagnosed within 4 weeks. Since starting on 15 mg in Aug 15 I am now on 13 mg. so no speedy reduction here even though diagnosed very quickly. I think other factors at play. I work full time, which I think doesn't help but needs must.

  • I think you are right- I also work and stress seems to increase fatigue and discomfort - but as you say - needs must etc 

  • Hi

    I was diagnosed with PMR in Aug 15 started on 15 preds now down to 10 was undiagnosed for 3 years or more as was told I had CFS .

    I think I am reducing more slowly than some but work full time

    Thiers no hurry to get of preds no medals at the end

    Best Wishes


  • Thanks Rose54

    I think I am quite sensitive to the steroids (well thats what Rheumy and GP says),so I seem to have collected quite a few of the side effects, hence I would like to reduce as soon as comfortably possible.

    Thanks for your comments.

  • Having a diagnosis and being given pred doesn't have any effect on the CAUSE of the symptoms so I don't think it can have any effect on how long it goes on/being able to reduce the dose. The symptoms are due to an underlying autoimmune disease for which there is no cure as yet and all that can be done is manage the symptoms using medication: pred. It isn't like cancer being found in its early stages where there is a greater chance of being able to remove the tumour before it spreads so you are more likely to survive, it is now a question of waiting for the underlying autoimmune disorder to die down. That can take anything from 2 to 10 or more years - and there is no way of knowing in advance which you might be. High ESR/CRP seems to correlate with long lasting disease, but mine's been going on ages, my ESR and CRP have never been raised.

    GCA (sometimes, not entirely accurately, called temporal arteritis) can affect any artery with an elastic component to its wall. That can lead to damage of the artery walls which, later on, can lead to other problems. That is why it is important to identify it earlier rather than later so the inflammation can be controlled with pred.

    I'm assuming you mean you had PMR for a long time and then it became full-blown GCA last year - but there is no real evidence that undiagnosed PMR always progresses to GCA although a few experts were of the opinion that untreated PMR was more likely to do so. Celtic and I as sure we've seen an expert opinion that this is so but other experts disagree. There are other people on the forums like you who have had PMR symptoms for a few years and then it became GCA. GCA itself can present as "just" PMR - it only gets called GCA if it appears with headache and the typical "temporal arteritis" symptoms. I have had other symptoms such as claudication, cough and so on that said to be typical of GCA, but although I have asked a few times, no-one is interested in considering whether my long-lasting PMR is really due to underlying GCA-type inflammation of large vessels? I had PMR for 5 years, then had a major flare that eventually led to a diagnosis and after some ups and downs got down to 5mg at Christmas over a year ago and was doing well (I thought) after 6 more years. I've recently had a flare, the cough and wobbly/weak legs are back in the mornings - back to 15mg though I am on the way down again.

  • Thanks I find it all confusing and frustrating. I had gca for about 2 years claudication which was treated as TMJ - with plastic teeth protectors etc, face and head pain - very lucky no loss of sight. I am now struggling to drop Snd have neck shoulder elbow and knee pain - taking pain relief as rheumy advised but it is not helping - just not seeming to make much progress !

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