Hiya everyone. I was diagnosed with GCA in October and put on 60mg Pred. I've taken this dose for 7 wks and see my Rheumy nxt week,1st app.

[Marybach]

I am hoping he will reduce my dosage. Do any of you know what the first reduction could be and how long between each reduction? Thanx for your help as I'm a newbie at all this and still trying to get my head around it all.

[mickt]

Hi mary.I was on 80mg reduced to 20 over 7 weeks it was too quick had a flare ,ive gca pmr too.Next time was on 80 in sept reduced down In 2 weekly doses of 5mg.Now on 20 one day and 15 next for a month.Your consultant will guide you but don't go too quickly is the general message you will get from this forum.Been on higher dose for 7 weeks should keep gca at bay,my eyesite was attacked was in hosp to save my sight which I thank god they did was on iv methyl prednisone..Best of luck with it all.

[Marybach in reply to mickt]

Hiya Mickt, thank you for your reply. I thank goodness too that they acted quickly and my sight is good, just a little blurry now and again. Did you get off days where you just felt completely drained and had to sit or lie down. I seem to get them every 8-10 days or so. In between tho I'm ok except for the usual shakes and breathlessness etc. I'm just hoping that when I can reduce the side effects of the pred will too . Well thanx again Mickt and good luck with yoyr treatment too. x

[mickt in reply to Marybach]

hi most I suffer from fatigue with all this im a type 1 diabetic and have addisons which add to it I think.I walk for 30 mins daily but im done in for rest of day.Ive had chemo for suppression of my immune sysyem and was started on azathiporene,got rash with it so been told to stop till I see rheumatologist next wed.Ive had the shakes since june I can sympathise.I have been off work for 6 mth and still don't feel well enough for return.We are all different and it is a lot to get your head around with this disease.A good forum is google PMRGCANE you will get plenty of advice on there by good people ,mostly women who have been and still are in your situation.All the best mickt.

[Marybach in reply to mickt]

Aaah! Mickt you have got so much to cope with. Sincerely hope things get a lot better for you and thank you again for supporting me. Good luck. luv Mary x

[polkadotcom]

Sorry you've already had a tough journey, Mary, but glad your eyesight was saved. PMR and GCA are strange conditions as I think you are discovering!

There isn't any set reduction plan for steroids as each one of us reacts differently both to the condition(s) and to the steroids. It such an individual thing and can baffle even the medics if they haven't seen it before.

The only real advice is to listen to what your own body is telling you and act on it and has Mickt has said, don't let them reduce you too quickly as it so often leads to disaster. If you feel uncomfortable with the idea of reducing the dose at any one time, then don't do it. A good many of us have had to be assertive about this, but it is gradually being accepted by more and more doctors.

We are usually around here to answer any questions or to help out with suggestions/advice. Don't hesitate to ask!

[Marybach in reply to polkadotcom]

Hi Polkadotcom. Thank you for your reply. I am starting to realise that this reducing is a two way thing, not just the Dr decision. I thought the reduction would go according to my blood results? I'll let you know how I get on in my appointment nxt Tues.I am so glad I joined your forums everyone is so helpful and I am very grateful yo you all. luv Mary x

[polkadotcom]

If you have sensitive blood markers then that is a very good way of coping with steroid reductions - have bloods done first and act on the result. Unfortunately it doesn't work for everyone, about 20% never have raised markers so cannot use this as a guide. You might also be a little confused with your results from time to time - it will show that you are normal when you feel like something the cat dragged in and on those days when you could take over the world, according to your blood results you are really feeling very ill indeed. Inflammation markers should be used as a guideline only as they are rarely completely reliable, unless you are one of the very lucky ones.

Do let us know what happens on Tuesday, you may have some surprises!

[Marybach in reply to polkadotcom]

Thank you for that Polkadotcom. What a confusing condition to have!! Well we'll see what happens Tues. x

[Marybach in reply to Marybach]

Hiya Polkadotcom. Sorry I have taken so long to get back. I saw my Rheumy before Christmas and he reduced my preds by 10mg to 50mg, for a month and then to 40mg on Jan 7th. I have been ok on 50mg but am noticing I get very breathless. Is this jyst another side effect to contend with. I am hoping it will not get any worse when I reduce to 40mg!! I see myy Rheumy on the 21st Jan and have to have bloods done the week before so he will have those results and the bloods I had taken before Christmas to compare. I'll let you know how it goes. Thank you for your reply. Take care now and good luck. Happy new year and let's hope 2014 will bring mire answers for us all. xx

[tomasina]

Hi Marybach,

Sorry to hear of your diagnosis and wish you well. However, take things gently and slowly with the reduction, as most of us are saying. I was diagnosed with GCA three years ago and started on 60mgs. Prednisolone. Slowly that was reduced and I also took Methotrexate when I got down to 10mgs. Prednisolone. When I eventually got my Pred down to zero, it only lasted three months and I had a flare up and had to go up to 10mgs. Prednisolone, plus my Methotrexate at 10mgs. per week. I am reducing by 1mg. Prednisolone per month and have reached 6mgs. daily, but I am quite cautious and concerned about reducing. I hate taking steroids because of the long term side effects, but know it is the only answer. My Rheumatologist is great and understands my concerns, so slowly we go. Good luck and listen to your body. Rest when needed, but try to keep active in between.

Tomasina x

[Marybach in reply to tomasina]

Hi Tomsina

Thank you so much for your helpful response. I will do as you advise me and take it slowly. On my good days I do get on with things and am active and then on my "off" days I just have to rest. I can't do anyt andhing else really. It's early days for me but hopefully I will get more used to it and be able to help other sufferers as you are doing. Can't wait to see my rheumy next Tues now. I just hope I see Dr Humphreys. Thank you once again Tomasina and good luck with everything. xx

[optimist-ok]

My PMR/GCA was diagnosed just over 2 rs ago. I, too, have been on 60mg prednisolone, reducing at first by 5 mg every few weeks then by 1mg per month. Now down to 8mg this week! Like tomasina I had a 'flare' in August, when down to 5mg so went back to 10mg . I also take 15mg methotrexate a week. Good luck with your medication, there does seem a lot to take! I do write mine down each day or I'd never keep track of it.

[Marybach in reply to optimist-ok]

Hi optomist-ok

Thanx for ur input. I have a tablet wallet that I put mine in but I also write them down. I'm on a really good day today and hope I get another tomorrow a I'm going out for a girlie Christmas lunch Take care and good luck with your meds. x

[raymck]

Hi there, Just joined the Club Zero group after almost 2 yrs of pred, slowly reduced to zero and not wishing to ruin anyone's Christmas I am finding the withdrawal a bit disappointing! Most of the symptoms stay much the same, such as stiff joints, skin-rashes, etc., but am beginning to realise that the "cure" is as bad as the "illness". At least I got my licence to drive back, which gives some return to normality, but as you will see there is no magic solution!

Living with one eye is a bit of a pain, but we must be grateful for what we have got. Good luck with the run down to zero!

raymck

[Marybach in reply to raymck]

Hiya Raymck

Thanx for ur response. The more I read on here the more I am beginning to realise that it is a very unforgiving illness with treatment much the same, but if this is the only treatment available we have to go with it don't we because the consequences of not taking it would be horrendous. So sorry about your sight, it must be awful for you but thank goodness you can drive again now. You have your independence back. We must all try and remain positive musn't we and with each others support I'm sure we can. Take care and good luck. x

[masonc3]

Hello Marybach. You may find my experience useful. I have had GCA five years and am now on a sustaining dose of 5 mg prednisone. Both blood tests (ESR and CRP) and symptoms are used to guide the withdrawal. Each person is different. See my "One Man's Experience" web site at: you can get the book from Amazon or just download it from the web site. Please comment or question, here or by e-mail..

[Marybach in reply to masonc3]

Hiya Masonc3.

Thank you for your response. I will have a look at "One Mans Experience". Thanx again. X

[Marybach]

Hiya all. Well here I am again. My reduction has continued with pretty good results until this month! I reduced to 15mg at the end of March and things seemed fine until last week. About 6-7 days into my reduction I had 3 days where I felt good for nothing and very unsteady on my legs. However that passed. On Fri evening though I was just sitting down having a cup of tea when my right index finger starred to feel stiff. When I looked at it my knuckle was really swollen and red. As I looked at it I could see the swelling increasing to cover the whole back of my hand and turning black as if it was badly bruised. I went to A&E and the Dr said it could be due to my GCA and medication. He sent me for an xray which didn't show anything. He didn't have a clue to be honest and told me if it got worse to go back or see my Dr today. So I am seeing my GP later on today. The swelling has gone down but remains sore and discoloured. Watch this space. I'll get back to you all later. X X

[polkadotcom]

Mary, this seems to be an unusual presentation, not heard of this - in just one hand - previously. Do let us know what the GP says, I'll be very interested.

[Marybach]

Hiya Polkadotcom. I saw my GP this afternoon and he said it isn't a usual presentation in GCA. He thinks it may be to do with the aspirin I'm on. He asked me who put me on it and I told him it was my Rheumatologist. He said he thinks I had a spontaneous bleed which could be down to my clotting levels. So he's taken bloods for my clotting levels and Platelets. I should have the results on Wednesday so I will post as soon as I know. Dr said he isn't concerned about my hand now even though it is still discoloured as it's re-absorbing and the swelling has gone down considerably although my knuckle is still a bit sore. Thank you for your concern.

[polkadotcom]

Yes, that does sound likely, I had facial spontaneous bleeding at one point, but I was on a higher dose of Pred then. Although I take a daily aspirin now, I wasn't at the time so it was put down to Pred and I reduced the dose quickly under close supervision. I haven't had it since then.

[Marybach in reply to polkadotcom]

Hiya Polkadotcom. From what you say if my clotting levels are low do you think they may stop the aspirin as I am on 15mg now as opposed to 60mg when I was prescribed the aspirin? Well at least if it does happen again I will know what's causing it. Hopefully it won't though. Thank you for your support, I really appreciate it. X