1. Community
  2. Bones, joints and muscles
  3. Polymyalgia Rheumatica and GCA

Reducing Pred from 60mgs - this time VERY SLOWLY

Posted , 8 users are following.

jean05221
jean05221

Eighteen years down the line, a 2nd opinion rheumy has given diagnosis of Takayasu's Arteritis and recognised that I need to reduce from 60mg VERY SLOWLY when I'm stable - no GCA symptoms, blood tests are "normal", I'm stress free and feeling very well!

I don't think I've ever had a day like that in years.

So can anyone help with how symptom free does one have to be?

I usually experience niggles of temple pain every day, but nothing like a flare-up or an attack. My scalp can feel senstive one day, then have short stabs of pain the next - but again, nothing like a flare or an attack.

Does this mean that the 60mg Pred hasn't calmed the inflammation enough for me to reduce?

Or would a small 2.5 reduction at this level continue to treat the inflammation?

2 likes, 14 replies

14 Replies

  • EileenH
    EileenH jean05221

    Posted

    I really don't know a lot about Takayasu's arteritis - but there is another forum in the UK for PMR and alongside is a Vasculitis forum which is very very good - and I bet there is someone there who could make suggestions.

    Follow this link:

    https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316

    and then the PMRGCAUK link for their forum/community, it's about half way down the post.

    Then look for the Vasculitis forum.

    In the case of GCA I'd say it was a case of reducing the pred to find the lowest dose that gives the best result you have achieved - does that make sense? The high doses are felt to be enough to combat most things - then you find a lower dose that works for you. But not sure if that would work with Takayasu's.

    Do keep in touch though  - I love learning about the variations.

    • jean05221
      jean05221 EileenH

      Posted

      Thanks Eileen for the info.

      Yes what you say makes sense.

      If I'm reducing in 2.5s from 60mg, then I should still be reducing any inflammation on the way down through the therapeutic dose.

      I will continue to post & am hoping for my 1st reduction after b tests next Thursday.

      Typical though - hubby has been sneezing & blowing his nose all day.

      Hope he keeps it to himself.

       

  • tina-uk_cwall
    tina-uk_cwall jean05221

    Posted

    Hello Jean, have I understood you correctly. You were originally diagnosed with GCA and treated for that but now the diagnosis has been reversed and you have been diagnosed with takayasus arteritis.

    i have just looked up this condition, how old are you and are you of Asian decent. If you do have takayasus arteritis I would not presume to think that I could offer any suggestions regarding your diagnosis. This condition is very complicated and I think it will take a medical professional to offer a treatment plan. But please let me know if I have the facts right, all the best, christina 

    • jean05221
      jean05221 tina-uk_cwall

      Posted

      Hi Christina

      Takayasu's Arteritis usually surfaces in 30/40 year olds - mainly women - and is also prevalent among younger Asian girls/women..

      There was an opportunity to diagnose it when I was hospitalised for 9 days at age 49. However, the consultant (not a rheumy) was adamant that I didn't have arteritis and despite my GP's intervention refused me a biopsy & steroids.

      Since then the atreritis has recurred many times and become more severe each time until I'm where I am today. 

      With Takayasu's Arteritis, the older the patient becomes, the arteritis is classified as GCA.....something to do with then being old enough to have GCA!

      The treatment is the same - the only difference being the unpredictable nature of the condition which makes it more difficult, but not impossible to manage.

      Hence the very slow drops, blood tests etc.which I will be monitoring so that I find optimum times for the drops.

      Regular scans of large blood vessels & echocardiograms can identify potential problems. 

      Otherwise it's the same as for GCA. 

      As I'm 66, I'm a GCA patient, with a little bit of baggage!

    • tina-uk_cwall
      tina-uk_cwall jean05221

      Posted

      Hello Jean, thanks for the information. Isn't it odd that the older a patient is the classification of the condition changes to GCA although the patient still has the original condition, that being in this case, takayasus arthritis.

      i wish you all the best, christina 

    • jean05221
      jean05221 tina-uk_cwall

      Posted

      I think it's for convenience - Rheumy said it was generally referred to as GCA when diagnosed in older patients.

      Thanks for your good wishes

    • EileenH
      EileenH jean05221

      Posted

      I don't think it is for convenience - I think it is because they refuse to acknowledge they are the the same thing because it would mean a sea change in attitude on the part of all rheumatologists. And in my experience most of them aren't interested enough to admit they've been wrong.

      There is a form of giant cell arteritis - and referred to as that, not Takayasu's - that occurs in teenagers, early 20s. Then there's Takayasu's for young middle-aged women and then GCA for older middle aged women. I refuse to believe that there is any difference at all other than it gets more common with age and am sure that if they did PET-CT imaging on a lot of younger patients they'd find far more out there. It isn't going to happen - it is too expensive yet and there are long queues.

      Of course, it is only relatively recently that they have been able to do the imaging that shows it affects the rest of the body. The mantra has been that temporal arteritis only affects older patients and has been called temporal arteritis because that is the only place where they have been able to see it. Which has all led most people to believe that is all it affects - and I also suspect that the older patients with generalised GCA have been the difficult to manage PMR patients.

      " Rheumy said it was generally referred to as GCA when diagnosed in older patients" - if that is so, why, when faced with someone in their 40s (still the age range for Takayasu's), do so many rheumies deny there is anything wrong at all? I know a few people who have been really poorly with typical GCA symptoms for a couple of years but denied ANY diagnosis because they're "too young".

      Where are you Jean? Where did you find this broad-minded rheumy?

  • Chirsy42210
    Chirsy42210 jean05221

    Posted

    I would be very careful reducing pred without something else to take its place I used 80units?? Not to sure of humira which worked well for my sed rate and crp levels( they monitor other stuff but these are the big ones) however after two years I developed severe psoriasis after much back and forth I was changed to actemra which fingers crossed so far so good I was diagnosed in 2007 and know very little about TA and vasculitis altogether but my understanding is that it's like diabetes it has to be treated with some sort of medication I hope this helps stay strong
    • EileenH
      EileenH Chirsy42210

      Posted

      Since pred is the drug of choice for GCA and PMR and nothing else has been proven to work reliably there is no reason at all not to reduce the pred dose without anything else being used in parallel. Lowering the sed rate and CRP are only dealing with symptoms and have no effect on the underlying cause. 

      You use the pred to manage the symptoms, the cause of which is an autoimmune disorder which is probably totally unaffected by the pred. However, in the majority of people the autoimmune bit is self-limiting and it burns out eventually and goes into remission. Sometimes it is in a couple of years, sometimes it takes much longer.

    • jean05221
      jean05221 Chirsy42210

      Posted

      There is nothing that can take the place of Pred for GCA. If there was, I'd be on it! 

      As Eileen says, Pred is used to mange the symptoms & the underlying autoimmune disorder takes its own time to burn out. 

      That's what we're all aiming for but it's a long slow process & needs careful handling.

      Thanks for taking the time to reply. All the best.

       

    • Chirsy42210
      Chirsy42210 jean05221

      Posted

      Did I misread something? Do you have Takayasu arteritis? I thought it was TA but they called it something different cause of your age?
    • jean05221
      jean05221 Chirsy42210

      Posted

      I was hospitalised in 1997 with suspected TA. Consultant said I was too young to have TA & was told to "chill", given paracetamol & kept in for 9 days whilst various tests were carried out. Inflamm markers were consistently high - but all I can remember fromthat is i was sent home with viscosity of 2.2. Symptoms were blurry eyes,headache, feeling terrible, sweats

      Years down the line & repeated worsening flare ups of whatever was going wrong, led to GP again sending me to hospital in 2011 with same symptoms (only worse) & high inflamms.

      Consultant rheumy wouldn't diagnoseTA & agreed with triage nurse that I looked well!! It was the sen Reg who refused to let consultant send me home withour Pred.

      After 2 years I was off the Pred but feeling terrIble. 9 months later- JUly 2014, I was "attacked" by another most severe episode & this is where I find myself today - the arteritis unresponsive at times to the Pred and flaring up even when I'm taking 60/50 mgs.

      2nd opinion rheumy has agreed diagnosis of Refractory GCA and is wondering if way back in 1997, the diagnosis could have been Takayasu's. 

      However, he can't change what happened in the past & going by his findings now & me presenting at 66 years, he's named it as above as the treatment & mangement is the same (for some people!).

      Unfortunately my Arteritis is proving difficult to treat and it's a trial & error

      situation finding what my "woosy" body will tolerate.

      We're getting there though & I've just made my 1st move down from 50mgs to 47.5. (fingers crossed)

    • tina-uk_cwall
      tina-uk_cwall jean05221

      Posted

      Good luck Jean, it must have been an absolutely terrifying situation to be in all those years back, with no conclusive diagnosis or medication.

      hopefully you can now move forward albeit tentatively. 

      I do not suffer from GCA, but like PMR the advise is the same, never reduce if you are feeling unwell and if you feel the symptoms returning, and then getting worse over the week, especially following a reduction up your dose back up to the level were you did feel well. All the best, tina

Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.