PMRGCAuk
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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?

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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

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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!

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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

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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.

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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.

Thanks.

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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.

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Hi jinasc, like your rundown but am interested in your PS statement as I've just been diagnosed with LBBB from an abnormal ECG, have worn a heart monitor for 3 days and waiting to see a Cardiologist. Is this to do with the GCA then? was diagnosed with GCA March 2014 and PMR within that year. Started on 50mg daily Prednisolone and currently down to 3mg daily cannot get lower - been told it's okay. See my Rheumatologist in April and would like more info before I see him. I'm having all kinds of problems which I won't go into right now but broadly suffering from extreme dryness below and to date have seen a dermatologist, urologist, gynaecologist and lastly an endoscopist, due to becoming anaemic, since September. Waiting to see the cardiolist and they want me to have a colonoscopy next. I'm thinking these MUST be due to the illness?

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She isn't around at present - winter bugs felled her and she is still recovering.

However - the need for the scan is to screen for aortic aneurysm which is a possible risk in GCA.

The extreme dryness below COULD be due to Sjogren's syndrome, or something called sicca (dry) syndrome which is basically Sjogren's without the antibodies being present. I probably have it - and mentioned it to the first real rheumy I have seen and he agrees it is a possible answer. I also have dry eyes.

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We spoke about this before and my GP ruled out Sjogren's - he said I had too much mouth saliva for it to be that! Dermatologist thinks I've may have Sicca syndrome, sounds the better of the two from what you say about the antibodies, thanks for that. The problem I'm having is how painful down below I am with this dryness. Just like severe systitus - I've recently been diagnosed with Vulvodynia and am waiting to be seen at the Vulvo clinic! watch this space

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Your GP may well be wrong - even rheumies get it pretty wrong sometimes! Just google "can you have sjogren's without dry mouth" and have a look!

Tell me about it - I've always dreaded a pap test but this last time my poor doctor was so upset as I was in tears! But she was the first one to admit the level of dryness. I do occsionally have periods of dry mouth - I really don't think the symptoms are set in stone.

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What can I say except I agree with everything you say particularly re the symptoms and that is the difficulty the consultants are having - they don't mean to pass me around but the reality is they don't know what to do with me. I am getting second opinions because of it. I often tell them you need to treat me holistically.

I see Prof D in April and as he is not aware of a lot of this (it's all happened since I saw him 6 months ago) and am eagerly waiting to hear what he has to say - this latest heart scare is the tipping point for me.

All the best to you

PS What is the treatment for Sicca et al?

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Symptomatic management I suspect - like most other a/i stuff. Artificial tears for eyes, the gynae gave me an oestrogen cream - I haven't tried it yet. But the label doesn't matter so much other than the monitoring and watching for the things that may turn up - it is the management of the problems that is most important for us as patients.

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That's makes sense, rheumy said last year they would monitor Sicca. I've had dry eye for many years and always use prescribed artificial tears so as it worsened and 'spread' to the nasal passages and mouth knew it was something different - seeing eye consultant in April for check up.

Re gynae: it's a problem as to its cause, I just wanted to know if AI illness was the underlying cause and the cancer drug has exacerbated it (my cancer was oestrogen fuelled so drying out was inevitable but took the drug and steroids for 2 half years symptom free) so process of elimination now - under oncology advice stopped taking cancer drug for 3 months only and symptoms did improve - prior to that used very low oestrogen cream for 3 months - didn't work at all. Went back on cancer drug last week and symptoms came flooding back (did it get my already weak spot due to AI or is it the real cause) see Oncologist next week going to try another drug. In between saw dermatology who diagnosed Vulvodynia, now referred to a Vulvo clinic as Gynea consultant said it was for dermatology to deal with and dermatology say it's gynea - getting nowhere - at least found out about the vulvo clinic - so long winded..

All I want to know is is the AI the underlying cause - seeing you have similiar gynae problems makes me think that might be so - I find the cancer makes professionals more wary.

Thanks PMRpro for a very useful discussion.

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A strange question occurs to me: does the nasal dryness extend to when you have a cold? I almost never get a runny/stuffed nose or phlegmwhen I have a cold, very non-productive. And occasionally I feel my nose is dry and it is helped with a bit of water.

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No it doesn't but then I never get normal colds like I used to, I use a small dab of vaseline to alleviate the nasal dryness, what I continually have is a dry throat with a pithy cough. Have a cough medicine for when it's really irritating otherwise put up with it!

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I suppose that's what I meant - I don't get "normal" colds really. Got the nearest at the moment - but it has been taking a massage (for back problems) to result in a chance to have a good nose clearing session!

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Result there then!

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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.

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

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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

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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

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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

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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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