I have just had a Rheumy appointment and she is pushing for me to go onto METX or LUFL as a steroid sparer to aid my steroid reduction
Started 40 mg Pred August 2024 very quick taper to 20mg (2 weeks at 40mg then tapered by 5mg a week to 20mg)
From my previous post .....
s Started to get stabbing headaches a number of times a day for a a few seconds at a time increased to 25mg and slow taper 22.5mg/20mg/18mgto 17mg.
Then increase to 20mg on holiday, and stays there for 2 weeks.
I have now been on 18mg for 2 weeks and getting mild headaches occasionally.
My question is .......
I seem to be getting stuck as 18- 20mg pred, my GCA is still in its first year would you consider this to be a a reasonable taper, and a that is the dose that my GCA needs at the moment, and that taking METX or LUFL is not going to make a difference as that is the dose I need to clear the inflamation.
Or should I just take it from Rheumy that I need one of the above to manage to taper down further, and I do which is preferred METX or LUFL ?
Looking forward to all of your advice !!
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hbp01
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I can't really comment on your tapering regime other than to do it slowly especially on lower doses. I have been taking MTX for just over a year now with good result. I don't have any side-effects from it at this point. But everybody is different, so you probably won't know unless you try. MTX and Leflunomide, I think, have similar safety and efficacy profiles. I remember my rheumy asked me to read on both and tell him which one I wanted. So, to me it meant that from the medical point of view he did not see difference for my case. I did some reading and decided on MTX mainly due to the fact that it is usually the first line of treatment. They both have potentially nasty side-effects but many people have been on them for many years without any issues. So, I took the plunge and so far so good. I have blood tests every three months (initially every two weeks).
"as that is the dose that my GCA needs at the moment, and that taking METX or LUFL is not going to make a difference as that is the dose I need to clear the inflammation" - just a thought about this: DEMARDs (M&L) also have anti-inflammatory effect, only it can take several months for them to start working. So, after a few months on MTX you would (theoretically) need less prednisolone to control inflammation, as it it will also be controlled by DMARDs. This is where their steroid-sparing properties come from. This is my understanding.
If you're stuck, then you might need something else to get you lower. Lots of people get offered MTX, and for the lucky few it actually helps. One thing though, it may be that your rheumy has to try you on MTX, which is cheap, before giving you something much more expensive, such as TCZ. I was stuck on 15mg, so obviously that was the dose I needed to clear the inflammation. MTX didn't help at all, but then the TCZ has got me to 3mg after 4 yrs. Who wouldn't want to reduce their steroid intake like that?
You will find plenty about MTX and LEF in the FAQs
It was a shame that you were challenged with such a quick reduction initially which led you into a mild yo-yoing situation. I was kept on 40mg for 6 weeks to make sure my symptoms were controlled after, like you, having a rapid resolution of symptoms within hours. I was lucky in that they left me to my own devices for 6 months so I was able to reduce at a pace I could set myself and avoid a flare. It sounds like your plan didn’t suit you.
Have you been reducing recently even though you have symptoms?
One option is to go back to a level where you were comfortable and reduce more slowly. This does mean you would have to argue you case and possibly be ‘awkward’ and stand your ground. I was one of those and it was quite stressful but successful. Or try one of the DMARDs suggested and hope it works while not being hurried off Pred in case you are one of those who still need it, especially as you are in your first year. As Sharitone says, they may need to try the cheaper option before being able to offer you the much more expensive biologics. They can give you a biologic if you have refractive GCA but it seems to my non-professional eye that you haven’t ‘failed’ enough to call it refractive yet.
Hi, I was diagnosed with GCA in January 2024 and put on 60mg pred for 6 weeks then 40mg , I started MTX in August 15mg weekly and have been fine. Before MTX my inflamation levels kept going up when trying to taper pred and my rheumy suggested MTX. I am now on 9mg pred and tapering 1mg every 4 weeks. I had to go back to 10 for 4 weeks after having a heavy cold but now back on track again on 9. I also had blood tests every 2 weeks for 6 week and now every three months. You can only try and see how you go on with it, good luck
I was diagnosed with GCA in August’22. Had a flare in May ‘23 and was offered Tocilizumab. After the year was up my rheumatologist put me on Methotrexate. It didn’t suit me at all (liver issues) so I started on Leflunomide in July ‘24. Problems with diarrhoea initially but then tried alternate days. Seems to be ok. Down to 5mgs of Prednisolone and not tapering until I return from holiday mid May. You have to try these steroid sparers to see if they suit you.
I was on Prednisolone for about a year starting on 60mg per day then when I tapered down to 11mg I had a flare up. Methotrexate was then advised. All was going well up to 18 months ago after a number of minor flares, but eventually Leflunomide was advised in addition to the Methotrexate. My dose is now 5mg Prednisolone daily, 25mg Methotrexate weekly and 10mg per day Leflunomide. My blood is monitored regularly but thankfully all is well so far and I don't notice any side effects. I still struggle to do what I used to do normally like daily walking and jobs round the house, gardening etc. and I have good days and bad days. Not sure if this helps you as I know we are all individuals and each of us has different needs and tolerance levels. All the best to you
There are some of us still on here, and many no longer around who managed very successfully to get through GCA on Pred alone…and mainly by doctors who allowed us to be on a sensible taper and [perhaps more importantly] recognised that GCA cannot be rushed.
I’m not saying other meds shouldn’t be introduced if a patient is really struggling to reduce Pred, but I do wish some doctors would give them a reasonable chance by not insisting on a ridiculously quick taper initially- and then wondering why it’s not working.
I know Pred has side effects [but then so do others offered] and no one wants to be on them longer than necessary- but the negativity around them from some clinicians worries me at times.
I’m sorry you are yet another patient that seems to be pushed to taper too quickly.
Hello there. I think your point about slow slow taper is the best. As we get older , we need to be a bit « bolshie » , especially with « young » rheumies . Mine said he wanted me off pred within 2 years for my GCA/PMR …..my response was « Well if my GCA agrees »….we had a laugh at that and both my GP and rheumy are content to let me taper slowly. Maybe we sufferers should offer to do a few lectures for these doctors 😊
I was diagnosed in Aug 2020 and put on 60mg Pred. Diagnosis of cranial GCA uncertain so rheumy wanted me off them quite quickly so a PETCT scan could be done. Large vessel vasculitis diagnosed in Feb 2021. Returned to 20mg Pred after scan and then began Leflunomide in July 2021. By increasing Lef dose to max managed to get off Pred by July 2022. Since then have slowly reduced Lef until present when I currently take it 10mg ev 4 days. I could probably stop altogether but for other health reasons I’ll probably stay on that dose to hopefully prevent a flare. Side effects for me on higher doses were just some diarrhoea but only once per day and quite manageable.
like you my Rheumatology Consultant was really pushing me to start Methotrexate or Leflunomide and at my consultation at the end of January told me to read the two leaflets and let his secretary know which one I wanted TCZ which he would have preferred was ruled out because my PET scan had showed up Diverticulitis. My concern was taking on another drug which I couldn’t see would be of much benefit to me and may give me side effects to make things worse. (So far my symptoms haven’t included headaches or joint pains) and I know how badly my granddaughter suffered from stomach cramps and severe headaches when put on MTX for psoriatic arthritis. Also a lot of people said they had fatigue which is my main Symptom leading to diagnosis. After a lot of online research and seeking views on the forum I concluded at this stage I would prefer to continue a taper of Pred only. I went on 60 mg in August 2024 for 2 weeks 50mg for 3 weeks then a fortnightly 10mg taper. My only problem with Pred was a big setback when (against my better judgement) I went from 30 to 20mg in October. It took a bit of a while of more gradual tapering to get back on track but I will hopefully now be tapering to 10mg in April. My consultant went into a bit of a sulk when I advised of my decision and wrote an unhelpful letter which concluded with “I won’t compel you to have a treatment against your wishes” This letter included a reference to European Against Rheumatology Guidelines ref Large Vessel Vasculitis (which I had already read) and this only said that in 3 random trials MTX showed a modest improvement for LVV/GCA patients in respect of accumulative effects of steroids and in managing relapse. I didn’t find this particularly convincing. I’m sure MTX works well for some people and if I get to a point where I have real problems tapering to what’s considered an appropriate level of Pred I might give Leflunemide a try but at the moment I feel I’ve made the right decision for me. It’s a difficult one because you’ll never really know until you give it a try. Good luck
I'm no rheumatologist.....but I've been on pred and Actemra since August 2019. I would go up and down like a rollercoaster with the prednisone dose. Occasionally, I would flare...need IV of prednisolone..finally my rheumy learned, my body had to take it slow. We are all different, but slow and steady wins this race. Presently, I am taking 8mg plus Actemra but the two specialists I work with have decided 5 is as low as I will go.
I'm okay with 5 mg because, after 4.5 years, I got to zero and crashed one month later...that was a problem and required three days of mega doses of prednisolone.
Zero is not a hero....is my mantra: seeing and feeling well IS~! Go slowly and be well.💞
Thank you for all your replies !! I cannot go onto TCZ, because I did not have a biopsy to confirm diagnosis, and that seems to be the criteria.
I also had a chest and thorax CT scan with dye to check for inflammation in the major arteries which came back negative, this also means I cannot have TCZ.
I think I will persevere with slow taper until end August ( Diagnosis August 2024) and see how it goes. Its just the side effects of the pred that are so nasty !!
Sorry I'm late to the party but I just noticed your post so wanted to update on my experience. I think some of my history is on my profile but essentially, PMR diagnosed June 2020. 15mg pred and eventually down to about 2mg November 2023. Then GCA diagnosed by biopsy December 2023 and pred upped to 60mg, quickly reduced to 40mg January 2024.
Rheumy encouraged me (!) to go on Leflunomide which I did January 2024. Some diarrhoea / urgency type symptoms possibly down to Leflunomide but possibly just me. But I've stuck with it. I got pred down to 5mg by end of 2024 at which point (and in absence of any great interest from Rheumy who via a student simply said I should continue sudden reductions of 1mg per month) I decided to continue reducing by 1/2 mg every four weeks or so. I've just started tapering to 2.5mg.
I have to say I feel good most of the time but do get tired easily. And I'm struggling to build up any muscle strength. I'm worried about my adrenal glands kicking in - or not. But at the moment I just try to get on with life! (Which also explains my lack of involvement here.)
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