When I was recently diagnosed with GCA I was put on 60mg of Prednisolone for 2 weeks, reduced to 50mg for the next 2 weeks and am currently taking 40mg for this 2 weeks. GP has advised me to drop down to 30mg for the following 2 weeks then to 20mg.
This is beginning to feel a bit too quick to me.
Has anyone any thoughts please ? Feeling quite "nervy" and anxious anyway since I started Pred anyway so I may be over-reacting.
Thanks.
I think you are right to be nervous. I am new to this too and others will be able to advise you a lot better than me on how Pred should be tapered. But here is my experience of the effects of Steroid withdrawal.
Recently I was admitted to hospital with stoke like symptoms and a neurologist insisted I didn’t have GCA and told me I needed to come off the Pred within a month. The first week I had to drop from 60mg to 40mg. I found this very hard physically and mentally, it took me a week to feel better. But it was during the second week when I dropped from 40mg to 20 mg that the effects really kicked in. I can honestly say I have never felt so poorly. All the GCA symptoms came back but were twice as bad especially the headaches and the pain in my jaws. I really struggled to eat . Additionally I had flu like symptoms, all my body ached. It was like I had been run over by a train. I couldn’t sleep…. I was exhausted and weepy. I’m now back up to 50mg with the plan to reduce me to 40mg in a few days. My Rheumy wanted to see me in a couple of weeks to check how I am. But my appointment is not until the end of July and is a telephone appointment. I have not seen her since May 9th when she put me on 60mg. At the time she said she would see me 3 weeks later. This just hasn’t happened. I feel in limbo as I am experiencing all these changes due to my body but not really sure what is going on. I have had no biopsy or confirmed diagnosis, but I have got most of the symptoms of GCA and had high inflammatory markers in my blood.
I would advise you to contact your Rheumy and seek advice from them regarding tapering. I am like you nervous of being on Pred… I dislike all the side effects but I also understand that I need to be on them. I was really suffering when I was on the lower dose.
Go on your gut instinct. If you feel something isn’t right question it. I wished I had.
Take care
Thank you Hazeleyes48, sounds like you have been here and know what I mean.I have not yet seen or spoken to a Rheumy - my GP contacts him then relays the advice to me, no consultant appointment face to face or telephone has beèn offered.
I think I will speak to the GP about it all and be a bit pushier. Thanks
If GCA is suspected - it is a medical emergency and should result in an EMERGENCY referral to a specialist. Just as a stroke or heart attack would.
This paper from a renowned team in Bristol is an outline of how they dealt with PMR and GCA. The approach is still being used as it is by Prof Vanessa Quick, GCA lead at Luton and Dunstable hospital
rcpe.ac.uk/sites/default/fi...
It was written and presented to GPs at a meeting in Edinburgh to assist them n managing their patients when access to a specialist is difficult. It works better than most other approaches to be found in the literature as it really does avoid flares - flares inevitably require a return to a much higher dose and following reductions are often even harder.
If it we me I would refer your GP to it and ask to go more slowly. Fast reductions are fine if they work and so far yours seems to have. But any step down should be 10% max of your current dose - not the 25% he is advocating. Halving the dose in 4 weeks is far too much for safety
Thank you PMRpro.I have just read that file. It sets out all the explanations and procedures for treating us safely.
I am definitely printing that out and taking it to my GP on Monday . It gives me grounds for getting safer guidelines.
Thankyou
Please help PMRpro.
Please help I have totally lost the plot .Feel awful don't know whether I have taken my 35 mgPrednisolone this morning, don't know what day it is,what shall I do
Have answered your new post
Your tapering is within the NICE guidelines. Once you get to 20mg, slow down to say 2.5 mg every 2 weeks. I recently had a recurrence of GCA after being in remission, and I am following the same tapering schedule as you, except that I started on 40mg pred, not 60mg. But guidelines are just that and and not suit everyone. Just be vigilant for symptoms reappearing.
Personal opinion, yes it is a bit quick, but some patients can decrease more quickly on the higher doses…….
FYI my taper down to 15mg - albeit slightly different circumstances due to sight loss and very conservative doctors was as follows- not suggesting you need as long as 6weeks at any dose- but certainly more than 2weeks. Plus I always had bloods tested prior to reducing and discussion with GP to confirm I felt okay.
The issue with reducing every 2 weeks, is that it can take that long for a flare to materialise, and if you reduce in quite big steps it’s very easy to lose control.
Result for me no flares.
I fully appreciate doctors are a bit twitchy about high doses, but if you reduce too quickly - all you do is end up flaring, having to increase Pred, and invariably taking more anyway.
Always worth discussing with GP….good luck
80mg - 2 weeks
60mg - 8 weeks
55mg - 2 weeks
50mg - 3 weeks
40mg - 2 weeks
30mg - 3 weeks
25mg - 4 weeks
20mg - 5 weeks
17.5mg - 4 weeks
15mg - 6 weeks
Thank you Dorset lady. I think I realĺy neèd to talk to the GP and your reply will help..I think what you say about CRP test and review before each reduction is logical and I neèd to ask for that.
Your own pattern of reduction seems more sensible too.
I will ask GP also to refer me to consultant so hopefully I can have personal face to face or telephone appt.
Thanks
All I can say is - it served me well….but I’m sure many doctors wouldn’t have approved!
Reducing Prednisolone
Reducing prednisolone
Reducing Prednisolone
Reducing Prednisolone to reduce side effects?
