Advice, please, from a new PMR, GCA.: I was... - PMRGCAuk

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Advice, please, from a new PMR, GCA.

61EllieCheshire profile image

I was diagnosed with PMR five weeks ago after suffering symptoms for several weeks. Then diagnosed with GCA two weeks ago following a constant headache. I have been grateful for the prompt attention given to me - temporal artery biopsy, CT scan etc - and know I have been fortunate in this. However, although I thought I could cope with PMR and had already started to plan a healthy diet/lifestyle to try to offset the side effects of the steroids, the thought of the risk of blindness caused by GCA terrifies me.

I was initially on 20mgs for two weeks for PMR, then when this was reduced to 15mgs for the next week and the headache began and GCA was confirmed.

I now have to take 40mgs for four weeks (now in the second of those weeks), 30gms for two weeks, 20gms for two weeks and so on.

I feel worried having read the posts on this marvellous website that these reductions seem very steep and very rapid.

The hospital consultant worked out the timetable for me to be overseen by my GP. My only symptom for GCA was the headache - no visual problems - so was told that 40gsm would be adequate but I worry that such a quick reduction will make things worse.

Also, will four weeks on 40mgs be long enough to get things stabilised?

I would appreciate any views on this. I know I am probably worrying unecessarily, but you all seem to have such a wealth of knowledge through personal experience, I would query my instructions if I felt my worries had foundation.

This is a marvellous site and I have learned such a lot from it already. Thankyou.

18 Replies

I have been on 60mg for nearly 3 weeks and following a negative biopsy and review at hospital have started a reduction plan which started with a big drop from 60 to 30 and then 5mg reduction per week down to 15 and then 1mg a month if possible, i am now on 25mg and although i do have some 'weird' days, so far things are ok (ish) however i would still struggle to be back in work full time, not sure how thats going to sort itself out yet!

Sealine30

Your reduction timetable appears to be more rapid than mine. I am starting to feel more relaxed now having read the replies to my post and I don't think I will feel so panicky if I experience 'weird' days too.

Fortunately, I am now retired so have lots of time to devote to managing this annoying condition. I feel so sorry for anyone having to cope with work too.

PMRpro profile image
PMRproAmbassador

I personally feel that that is too fast a reduction in GCA but I'm not a rheumatologist and maybe this doctor has had experience with GCA with no visual symptoms responding well to this approach. I probably have something more akin to GCA than merely PMR and when I had symptoms that could have been due to GCA after several years of PMR the rheumatologist here put me back to 15mg/day and advised watchful waiting. It has been fine.

This is a link to a guide for the diagnosis and management of PMR and GCA by a top UK consultant which is aimed at GPs. They work over a much longer reduction, remaining at each dose for a month down to 20mg, but they start higher. Then they slow down a lot from 20mg. This results in fewer flares.

rcpe.ac.uk/sites/default/fi...

I suspect you will be OK down to 20mg - what has the consultant said to do from there? You have GCA with PMR symptoms - it is possible it is the PMR symptoms that will pose the bigger problems with the reduction but that will only surface once you get back to under 15mg, probably well under 15mg.

PMRpro

Thankyou for the link.

Following two weeks at 20mgs, I have been told to go to four weeks each of 17.5, 15, 12.5 and 10 before reducing by 1mg every following four weeks.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Hi,

When you refer to consultant, do you mean an Ophthamologist or a rheumatologist? I may be too sceptical, but from my own experience I'm not sure rheumatologists are too good with GCA symptoms. If you didn't see an Ophthamologist , and even though you have had no visual problems, if you are still worried about your GCA it might be an idea to ask for a referral.

Although PMR and GCA are supposedly related (open to discussion by lots of people) the effect they can have on the individual can be very different, and life changing. Speaking from personal experience, unfortunately.

You may well be okay on the reduction plan outlined if things have been diagnosed and treated quickly but do monitor your symptoms, and if in doubt get advice. DorsetLady

I am such a novice when it comes to hospitals, I had no idea which area the initial doctor, who worked out my timetable, specialised in.

I was take to Primary Assessment Area for the day, and looking at my notes, I now see that he was a doctor, not a consultant, in General Medecine.

My next appointment was with a young rheumotologist who kept disappearing to consult with her next in command (in a different room) and she seemed happy when I showed her that my timetable had already been worked out. My next appointment with her will be in eight weeks.

Thankyou for your advice. I am feeling more confident now about monitoring my own symptoms. I do think that I am fortunate in that I have been diagnosed quite early .

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to 61EllieCheshire

Hiya Ellie,

Yes you are fortunate in being diagnosed early, it means you will not be on very high doses of Pred, which, as you are aware, brings its own problems, and hopefully, you won't get any further "head" symptoms.

As others have said, take your reductions slowly, keep active without overdoing it, and just be aware of any unexplained aches and pains (without being paranoid)... and just get on with life. Good luck, DL

Celtic profile image
CelticPMRGCAuk volunteer

Ellie, I was also diagnosed with PMR/GCA, started on 40mg of Pred and successfully reduced to 15mg via 30 and 20mg in one month under the guidance of an excellent rheumy who is involved in research into these conditions. Apart from the horrendous head pain, I also had jaw claudication, blurred vision, nausea and vomiting. The advice from my rheumy was to contact him immediately should the head pain return, but it vanished, together with the jaw pain, within a few hours.

Having said this, we can all respond differently to the treatment, but the recommendation is to get you to the lowest dose possible that controls the inflammation. My rheumy told me at my first appointment that 15mg usually controls it.

Once at 15mg, we slowed the reductions, stepping down to 12.5mgs for 2 weeks and then 10mgs for two weeks. My blood tests had returned to normal by this stage.

Although my GCA symptoms subsided almost immediately on commencing steroids, the PMR symptoms reduced but by no means disappeared. It is expected that we can achieve around a 70% reduction in our pain within a few days of starting treatment.

So see how you are at each new dose and, if you had raised markers of inflammation in your blood at diagnosis, then it is a good idea to have the tests repeated before each reduction and used as a guide along with how you feel. If the markers have not improved significantly, then you know to mark time for a while longer at whichever is your present dose.

Celtic . . Thankyou for your reply and advice. I am feeling more relaxed about everything now that I have more information from this site. My initial GCA symptoms were not as severe as yours but I was worried that something terrible could happen overnight. Now I realise that, like everyone else, I can monitor my own progress and just go with the flow.

Hi Ellie,

I feel I can give just a bit of guidance on GCA but not PMR. It is just over two years now since I was started on a high dose of Prednisolone 60mg. I had double vision problems plus very, very severe headaches. The Pred reduced the headaches to a manageable level and all major vision problems went very quickly; just a period of a little blurriness for a while. My eyesight is now excellent, confirmed by a DVLA specified test.

I am now on 3mg of Pred and hope that reduces to 2mg in a couple of weeks time. I still have a headache but it is very mild (but varies a bit in intensity). If the headache troubles me I take a paracetamol tablet (just one) usually to get me off to sleep. In the early days I could not sleep at all as the headache was too strong.

What I believe helped me a lot was following my GP's advice to go on a wheat free diet. Leaving out all the detail as to why, the theory is that wheat (a very modified food product) prolongs an inflammatory condition. Of course, because I am on Pred I cannot say that the softening of the headache has been helped by my going wheat free, but I think/believe it has helped. Perhaps you could discuss this with your doctor.

On the question of tapering down on the Pred, my taper was quite fast down to 10mg and since it has been in 1mg steps. A typical pattern following a reduction is to have over a period of two weeks (plus or minus a few days, maybe more) is to feel unwell, less energy and a slight jump up in headache level. This settles down for most taper steps. However, there have been three stages when I have got a bit stuck and had to maintain the current Pred level for several weeks more than expected. I have never had to increase the Pred level.

As a bit more of a general guide I used to do walks of about 10 miles fairly often. After GCA hit I could only manage less than a mile on fairly level ground. I have slowly built up to about six miles now including some not too steep slopes. The biggest challenge for me was learning to not do too much, especially in the early days (but it still applies now). I was used to being very hands-on with DIY and in the garden etc. My mental error was 'I'll just do a bit more' and that was when the GCA let me know that I was being too keen. I still am tempted to do a bit too much on occasions but I am better at regulating myself now - most of the time.

My ambition now is to build up my strength again once free of GCA. If I have drivelled on for too long please forgive me. My intention has been to give you some guidance on expectations and progress. Of course, your progress will be individual to you,but as you have been on the high dose of Pred I would guess that your eyesight will be safe.

Very best wishes for a complete recovery with both conditions.

Richard

Richard

Thankyou for your info.

It is so helpful to know what to expect with the reduction of Pred. I won't feel so worried now at each step.

The point about a wheat free diet particularly interested me. I have been a vegetarian for over 20 years but I think I have recently become rather lazy about ensuring that my diet was balanced.

Now I have revamped my diet to include lots of fish and to make it high protein, low carb, both to try to offset the side effects of the steroids and to make myself stronger to help get over this.

I hadn't considered the effect of some foods on inflammatory conditions so I will look into this too.

Also a keen walker, this came to an end with the pain of the PMR. However, on the higher dose of Pred, the pain went and I could walk again but couldn't understand why I felt wiped out the next day. I now know to pace myself.

I am feeling so much more positive now with a little more knowledge. Thankyou.

Ellie

Dear Ellie,

I'm glad my info will be of help, and Just a bit more info. I have been a vegetarian for about 30 years and tried to keep a balanced diet. The only mistake I think I made was no to eat fish as well. I have corrected this recently by supplementing my diet with a daily dose of Flaxseed oil to boost my omega 3 level. This seems to have helped a lot though the inclusion of this oil took a bit of time to have an effect. The diet you describe for yourself seems spot on. I wonder whether you have read "The Big Fat Surprise" by Nina Teicholz. It took her nine years of research and she seems to have been very thorough in her work.

Best wishes,

Richard

Ellie

Where in Cheshire?

Sambucca

Nantwich . . . Anywhere near?

61EllieCheshire: I am in the states. I think that sometimes the docs play with the dose to see if and where you flare. My biopsied artery showed an arteritis, but no giant cells. I also had had classic PMR symptoms, for a short time. Therefore, the docs diagnosed the arteritis as probable GCA (and for example probably not Wegeners Granulomatosis--or whatever it is). But since there were no giant cells they wanted to see if I were already in remission. I had had a lot of prednisone for 2 months prior to the biopsy with 60 mg for about 11 days immediately before. I, like you, had a relatively rapid decrease in dose. After 60 for about 20 days, I almost was put on 30, but changed to 40 for about a month. (I still had pain in the arteries on the sides of my nose which made the Rheumy try 40 and not a direct descent to 30.) Then I had about a month of 30 and then a month of 20. Then it was to be a 1 mg reduction a week until I got to some number--maybe 10. I got my personal eye problem symptom which is a cloudy mosaic at 17 and went to a neuro ophthalmologist relatively quickly--3 days. This is a less serious eye symptom than some. (If you have problems don't wait--go to the emergency room immediately. Don't be stupid like me.) The ophthalmologist played with the Prednisone some--back to 30 for about 2 weeks, then relatively rapidly down to 5. I flared with PMR at 15, 10 and definitely was fairly bad at 5--having way too much trouble moving with lousy blood tests. We settled on 12 mgs and the recent flare of the PMR went away. And no more eye symptoms. I think that the docs were trying to see what I wound up with, PMR, GCA or none of the above, and what I should take for a near future of very slow reduction. Turns out that I still have both GCA and PMR, pretty well managed at 7.5 mg Prednisone. I also had symptoms even on 60 mg. However, they were minor, and I misunderstood them. I still have minor symptoms and pay special attention to the GCA symptoms. I am able to see a Rheumy and a neuro ophthalmologist each, about once a month. So I am closely monitored They watch me pretty carefully. I think that they heartily believe that I have the 2 diseases and definitely ordered me to stop reducing when I hit 6.75 mgs. I couldn't get there--major GCA symptoms and some pretty bad PMR symptoms (never together). The docs seem happy at 7.5. This is just one story. But maybe it will help us ascertain how the doctors think then they are starting at 60 mgs. I think that they try for a much lower maintenance dose my reducing the crazy high doses rapidly.

Greater Manchester and North West Support Group.

pmrgcauk-nw.com

or

pmrgca.co.uk/group-pages and you can find other groups that may be nearer to you.

Also visit pmr-gca-northeast.org.uk.

Ellie I was diagnosed in early febuary with PMR, I started off with neck pain, flu like symptoms aching all over, Loss of appetite, and then I got pains in front and back of my thighs, went to doctor had blood taken, and my CRP was 83, I was told to go to A and E where I was treated as emergency iwas put on 20mg of pred,

But like you I came Down to 12.5 in 13 days, that was 2 weeks ago when I went to eat I had terrible jaw pain when I went to eat, a headache, sensitive scalp, pain and swelling in temples, and jaw pain when eating, I went to A and E and was treated as emergency a rheumatoligist came to see me and iwas admitted, i was put on 60mg said it was temporal arteritis, had biopsy the next day, didn't get results yet,I had eye exam that was ok, I was in hospital for 4 days, felt fine coming out, but next day headaches started and jaw pain back, went back to hospital last Monday cause I was so scared, I have appointment in morning but had blurred vision today so really scared.

Elizcarroll

I'm so sorry you are having such a tough time. I know how frightening this all is. I have been reassured by the information given on this marvellous site and it helped me to relax more, knowing that my eyesight was protected once I was taking the Pred.

If you put a new post on the main part of the forum, you will get excellent advice from more experienced, knowledgable people, but please come back to this thread and let me know how you get on at your appointment and how you are feeling.

I'll be thinking of you . . . . Ellie

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