Methotrexate

[Skysey]

Hi everyone. I wanted to ask if anyone who has GCA and where tapering pred has not worked, has been put on Methotrexate? I am about to go onto 7.5 mgs weekly with my 40 mgs of pred. I have read the side effects of this steroid sparing drug and just wanted to hear other’s experiences on Methotrexate. I have been told by my rheumatologist that I will need very close monitoring and fortnightly blood tests plus baseline chest x ray. Many thanks.

[PMRpro Ambassador]

Looking at your past posts, I'm mystified how anyone can say having started at 60mg in January and having tapered to 40mg now that tapering hasn't worked. And THAT is perhaps the question you should be asking here - how others tapered from 60mg and how long it took.

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Me - 13 weeks!

[Skysey in reply to PMRpro]

Thank you PMRpro. Very good point. It feels like a long journey but I know it hasn’t been very long. It is interesting to see that others have tapered slowly over a longer period and this has generally been successful.

[DorsetLady PMRGCAuk volunteer]

No experience of MTX, but others will come along shortly.

My comment would be, your Rheumy is a bit premature in putting you on it - 60mg to 40mg within 3 months sounds reasonable - so why the rush to add in another drug.

Who says your tapering isn’t working? Probably the Rheumy who is trying to reduce you too quickly.

What has been your tapering schedule so far? Perhaps we could advise a more sensible approach, and avoid the need for MTX.

[Skysey in reply to DorsetLady]

Thank you for your prompt reply. I have had 3 flares when reducing the pred to 30 mgs. I think I have read somewhere that the protocol says if there are two or more flares when tapering, then add a steroid sparing drug.

I have a new rheumatologist as my care has recently been transferred to a teaching hospital. He seems experienced. I have had my first telephone consultation with him and I am seeing him in 2/3 weeks time.

I will talk to him about my concerns.

I will keep you updated. Thanks again.

[PMRpro Ambassador in reply to Skysey]

They don't mean flares because the doctor is trying an utterly unrealistic approach to tapering in the first 6 months!

There is study evidence from the UK GCA guru and an Imperial College team, Dasgupta et al, that there are still histological signs of active disease even after 6 months at high dose pred, i.e. over 20mg. As long as the disease activity is high, you will need a higher dose of pred to manage the inflammation. It is said that mtx takes up to a year to show a significant reduction in pred dose - and in a year you will have reduced a long way without pred and without adding in an additional layer of potential adverse affects.

[Tamtan2 in reply to PMRpro]

Gives me hope I don’t want to be put on secondary medication I want to just take prednisone and taper eventually is this a possibility Mtx has put me off taking spacers..🙏🏽

[PMRpro Ambassador in reply to Tamtan2]

That is what most of us did - people on sparers are a minority.

[Tamtan2 in reply to PMRpro]

🙏🏽 thanks

[DorsetLady PMRGCAuk volunteer in reply to Skysey]

If you’ve tried to go from 40mg to 30mg in one drop - then no wonder you’ve had issues. Too big!

40-35-30 more sensible - but that’s not achievable for everybody.

The guidelines are just that - guidelines - everybody’s circumstances are different.

None of us want be be on a high dose for longer than necessary - but you need ENOUGH to control inflammation- or there’s no point in being on it!

I do wish doctors would “get” that - maybe yours will!

Hope so.

[Tamtan2 in reply to DorsetLady]

Just received letter from respiratory doctor who notified me after 7 weeks I have a nodule on my right lung due to mtx Which I stopped on getting breathless but the dr seemingly stopped it I’ve never even heard of him or met a rhuemy for over 3 months now. the cause of my breathing problems which bother me everyday are scary. He will see me late august to check on lung and breathing I have aLso had the shakes for 8 weeks which means there are days I can’t do much As I shake from top to bottom And feel everyone can see it. Mtx wish I’d never heard of it I have more problems now than I had at diagnoses.

[PMRpro Ambassador in reply to Tamtan2]

So sorry - were you warned beforehand?

[DorsetLady PMRGCAuk volunteer in reply to Tamtan2]

As PMRpro says were you warned?

I think as and when you feel strong enough, both physically and mentally this needs to be followed up - and if MTX is the cause as the respiratory specialist advises - then that needs to be logged in the system.

[jinasc]

Follow this link:

healthunlocked.com/pmrgcauk... .

Tip 10.

I refused all steroid sparing agents, preferring to stick with Pred. We know all the side effects and, to date, I don't know anyone who has had them all. It is always a very personal decision and can only be made when you have taken a good look and listened to your medics. Always realising it is Your body and Your decision.

Methotextrate is a gold standard treatment for RA and also if you develop LORA (late onset RA). You can read up on Metho on the net.

Your body = Your decision

I had GCA for 5 years, it took me from February to October to get from 60mg to 40mg and then I had a 'flare' back up and this time, more more than 10% at a time and a drop only once a month and providing no symptoms re-appeared.

I am now coming up to my 8th year in remission.

We know so much more now.............ie tapering plans and the Golden Rule before you get to 10mg, is no more than 10% at a time.

[Skysey in reply to jinasc]

This is really useful to know. I now realise that I need to taper really slowly 5 mgs at a time over a longer period. Thank you for your advice.

[altywhite]

Hi, in reply to the Methotrexate I would say that I was tried on it and felt quite 'off' on it. I also started to lose my hair very early on and that was a 'no no' for me!! But everyone is different, I have a friend who has been on it for almost 20 years and has a lovely head of hair!! Seriously though, I felt it didn't agree with me so came off it. I had had GCA for about 18 months when I was on it and looking at what PMRpro has said about your history I would defer to her great knowledge, DL too.

Just a little aside.....I have been on this 'journey' for 5 years now with lots of ups and downs. I am trying to get down to 5.5mg of pred for the second time but have been told that I will probably have to stay on a low dose for the rest of my life.

How do you feel, by the way? Are you struggling with the symptoms? I wish you well.

Linda

[Skysey in reply to altywhite]

Thank you for sharing your experience of Methotrexate.It is reassuring to know that your friend has coped well with this medication. I am feeling ok on pred but have good and bad days. I have a buzzing feeling in the back of my head at times and occasional aches and pains in my temple and in my shoulder and hip. I have been experiencing flashes of light in the outer quadrant of my eyes every day particularly when moving from a light to a darker room or when bending down. My neuroopthamologist thinks this may be auras associated with migraine although these are not accompanied by headaches.

I read that it might be the vitreous gel that thins or breaks up which can happen with age.

I really appreciate all the advice and support from you and all the forum members.

[SnazzyD]

It is a shame that they are treating this like a failed response to Pred when you haven’t been dosed adequately and then reduced too fast. This is the time when disease activity is high and you need a consistent and effective level of Pred, not exposing you with a rapid decrease. I would want to know where their evidence comes from that this is good care.

[PMRpro Ambassador in reply to SnazzyD]

Was just reading the new GCA guidelines: reducing suggestion is 10mg every 2 weeks. Which we all know is a recipe for disaster ...

[Skysey in reply to PMRpro]

Yes I agree. That does seem too much too soon.

[SnazzyD in reply to PMRpro]

Makes you wonder what it’s based on.

[PMRpro Ambassador in reply to SnazzyD]

Not patient experience!!!!

[jinasc in reply to PMRpro]

Lost the argument.............🙁

[PMRpro Ambassador in reply to jinasc]

I know how much he has done - but a little bit of me hopes HE gets PMR one day. Just so he knows ...

[jinasc in reply to PMRpro]

Mind not the first time I have lost In all honesty there were a few who thought like I did.

[Devoid in reply to PMRpro]

There should be a way of logging personal experience and then it be collated for doctors to see , I am a midwife and the number of times I’ve experienced women been told ( I haven’t come across that / its highly unlikely it’s to do with pregnancy ) by doctors/ obstetrician and I am aware that this is 3rd time it’s been mentioned in the past 10 women!!!!! Do they actually think these things will go away if they don’t acknowledge them???

[PMRpro Ambassador in reply to Devoid]

They must do - it is beyond me ...

[Hidden in reply to PMRpro]

🤦‍♀️

[Tamtan2]

I was put on methotrexate 26 March 2020 10mg injection which self injected then upped to 15 April 2020 started to feel unwell then 20 on 23 April felt really poorly breathing difficulties and fatigue couldn’t do anything without getting so tired in bed most of the time. Rang dr who put me down to 15 still feeling unwell Rang my nurse at hospital3 weeks later I was told to come off straight away. Have had a ct scan 4 days ago to see what’s going on with lungs abdomen no results yet.bloods being done Friday to see how things are going, I maybe be one of the unfortunate one who just can’t take methotrexate hopefully I will be put on alternative or taken off completely by the way I did not have a bone density scan before going on methotrexate and I should have been given one. Good luck take care.

[PMRpro Ambassador in reply to Tamtan2]

Most of us have not taken methotrexate - especially people with GCA. There is not a great deal of evidence for benefit in GCA unless started in the first month - and that means they can't really tell if you are getting anything from it.

I too had the most appalling fatigue with methotrexate - none of the usual problems though. But it created pred adverse effects I had never had before!

[Skysey in reply to PMRpro]

Thanks PMRpro. Interesting to hear of your experience of taking methotrexate. I am currently taking 7.5 mg of methotrexate once a week and 5 mg of folic acid the day before. Taken my second weekly dose. Early days, but noticed I am feeling more fatigued than usual. I am having a chest x ray and fortnightly blood tests and close monitoring which is reassuring. Will keep you updated.

[PMRpro Ambassador in reply to Skysey]

Why are you taking the folic acid the day before? The usual instruction is to take it the day AFTER - and some people need it every day except the day they take mtx.

[Skysey in reply to PMRpro]

The consultant told me to take folic acid the day before. I am seeing him tomorrow so will double check. Thanks for your help.

[Tamtan2 in reply to PMRpro]

Can’t believe I have had so much pain and fatigue taking methotrexate and it doesn’t appear to help GCA. Thank you for letting me know have learnt so much over the last few days .

[PMRpro Ambassador in reply to Tamtan2]

Oh I can!!! It made me feel as if the PMR was back and I was on no pred!!! It was really strange.

[Tamtan2 in reply to PMRpro]

🙏🏽🙏🏽🙏🏽

[Skysey in reply to Tamtan2]

Thanks for your reply Tamtan2. You have been through a hard time with methotrexate. Hope you are starting to feel better now you are off this medication. Hope they find the right treatment to relieve your symptoms.