Has anyone had GCA and is now over it

Hello, I have had GCA/Polymyalgia now for almost 3 years, I am now down to 1 pred a day now for the past 5 weeks, and my Dr wants me to finish now, but it's silly but that 1 pred is like a sort of comfort blanket, I am just frightened that my GCA may return, I feel fine, bit of lower back pain, but X/Ray shows just wear & tear.

So has anyone been clear of GCA and did you feel ok when off the pred?

12 Replies

  • I can't answer your question, but well done in getting down to 1mg daily. I can understand the comfort blanket feeling. I should talk to your gp and see if s/he understands better than your rheumy. I was dx in Jan 2013 and am just about to start reducing to 7mg

  • Grimo, I can so understand your fear that coming off Pred will result in a return of symptoms. I felt exactly the same way even on just half a mg daily, and began to wonder whether after 5.5 years on Pred, I was completely hooked!! I had actually spent almost a year on 1mg mainly due to a really long bout of sciatica resulting in pain from my buttock to my foot. I had experienced a couple of long bouts of sciatic pain long before PMR/GCA/Pred, due to a long-standing spondylolisthesis (slipped vertebra). However, just in case PMR was lurking, I opted not to come off this tiny dose until the sciatic pain subsided. I then decided to do a really slow reduction to half a mg, tapering slowly over about 7 weeks before eventually feeling really brave one day and saying goodbye to Pred. I have now been Pred-free for over three years. I did experience some continuing stiffness in my knees and ankles for some time and put this down to steroid-weakened muscles, probably not helped by having been in bed for some 4 months at the outset due to non-diagnosis.

    You are doing really well to be down to 1mg in just under three years and, as long as you feel confident that your lower back pain is definitely due to "wear and tear" and not PMR-related, then why not spend another few weeks on 1mg followed by a slow taper to half a mg and then see how you feel. That may just give you that bit of extra confidence to 'take the plunge' and come off altogether. It can take a good year for our bodies to completely recover after coming off Pred, not just our adrenal glands which have been suppressed by the steroids, but also various other hormones that have to adjust. Remaining on a tiny dose of 1mg for a considerable length of time can allow much of this adjustment to take place. Good luck!

  • I only have GCA no sign of PMR diagnosed 1year ago started on half mg yesterday GP has said timetable up to me hope to be free by November. One thing GP has said is to keep one dose of 40mg at home for year or so just in case

  • I had GCA only and never had PMR.

    Yes, I can understand that reluctance to stop. My Rheumatologist was also reluctant to stop. However I was lucky the Tabul Study was taking place and a machine was available, albeit it was supposed to be for helping to diagnose GCA. But he arranged for a scan to see if it would work for an 'end' result. It re-assured him and I stopped when on 2mg, which I had been on for well over 6 months. Coming up to 5 years pred free.

    Yes, I had a supply of Pred 60mg for a year afterward, just had to keep checking the use by date.

    I also had an ACTH test to see if my adrenal glands were fully functional. The test showed they were as I had been below 7.5mg for nearly 2 years. Worth asking for one.

    I still found I could get fatigued easily but put this down to being 5 years older.

    I also went for Bowen Therapy and found this great and it helped me to walk again properly and also the 'lower back' pain. Give this a try - OK you have to pay for it and book three sessions of one hour for three consecutive weeks, but if it is not going to work for you in that time, the therapist will tell you. They don't want you to keep going and paying. I found that refreshing. I still go for a booster.

    The best thing is - you know exactly what the symptoms are not like when you first had it. That is the upside.

  • I think I will stick on 2pred for a couple more months, I still get the odd temple pain, not for long, just a couple of minutes, So when you ssay you were pred free for 5 years, is that when you actually finished 5 years ago.?

    I started on 60 Pred November 2012.

    I live in the Channel Islands, and we just deal with our Dr, there is no rheumatologist as such, but I will ask about the Adrenalin Test, I do get really tired in the afternoons.

    And can I ask are you on an Anedrolic Acid weekly tablet?

    It's really helpful chatting to someone who has had GCA.


  • 5 years on 1 Jan 2016, I took my last dose on 31 December 2015.

    Here we go, I never ever took AA or any other biophosonates.

    I had a Dexa scan within 6 months of starting pred. Bone density97%, two years down the line another Dexa, same machine, same denisty - five years down the line another Dexa, same machine same density. Never bothered with another one since coming off pred.

    Now I am an odd ball and would never advocate what I did as it is a very personal decision. I was offered various steroid sparing agents, I refused all of them. They all come with their own side effects and I had plenty of those with pred, without adding to them. My body had enough to cope with I reasoned and as none of the cure, as there is not cure, why bother.

    I was given Calcihew which I took, until I got pseudo-gout, caused by calcium crystals. I did not need the extra calcium. I did not know at that time that I should have asked to have all levels checked, calcium, Vit D (absolutely essential as I learned to my cost later on) and all mineral levels. Knowledge is power.

    I learned the hard way and have since become a founder member of the Charity that runs this site and also am Chair of PMR & GCA UK North East Support. You can read my story (well most of it) on that website.

    PS Two years into GCA you need and Aorta and Pulmonary scan.

    Read the guidelines on Treatment and Diagnosis of GCA, issued by the BSR, they can be found on the BHS website and the British Society of Rheumatologists website and our website. As I said, knowledge is power.

  • OH, I knew I had forgotten something. Two people I know who had GCA were also clear of it one within 2 years and the other 3 years.

  • Thankyou samba ca, that's encouraging I will think positive.

  • Hi, ritter here, yes I am off preds and have been since 23/2/ this year, after three years on them, I have osteo so do get a lot of back pain, rhumy said i am ok now and he does not need to see me unless it comes back GCA, that is, have pain all over my body but not drastic, hope you succeed just do the very slow slow remedy,it works, and thank the lord for this forum, i never took much notice of my Doc or rhumy as they would have had me off the preds ages ago, good luck, Anne

  • Thank you Ritter, that is encouraging, I will be 3 years on press this November, I'm going to stay on 2 until November, then 1 for another couple of months. It seems most people still have some aches & pains when finished with preds,I guess that's the part you have put up with, but not sure you how you telll if it's a flare up return GCA?????

    Just a blood test I expect?

    Thank you

  • Yes that is a good way, you still need to look out for the normal symptoms, top of head very sore when brushing hair temples sore and possible swollen and flu like symptoms including( slight headache,s some people bad) good luck and plenty of excellent food that is good for your artery,s x Anne

  • At the National Vasculitis Symposium this year a Spanish consultant recommended that from 2.5mgs her patients take their tablets alternate days to give their adrenal glands an opportunity to kick in again. Have you considered taking your low dose alternate days; then every 3 days etc. Might be a way to put the comfort blanket down without panicking.

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