GCA, Methotrexate and Pred update - how long does Metho take to make a difference?

[Fieldofdreams]

Dear PMRGCAUk friends,

Thank you for all your advice last week re my appointment with the specialist nurse to talk about beginning Metho. My appointment was postponed until Monday. As a result I began taking Methotrexate yesterday. By evening I felt quite woosey, very tearful, my heart was racing and at one point for only about ten mins though it was as it the room was smokey, I was very tired but not feeling too bad today after a lie in. I hope the nausea doesn't kick in that some people experience.

Following advice on this forum (PMRpro) and DorsetLady tapering plan I examined my Pred tapering. I had got down to 25mg (from 27.5) but was in considerable pain. I began to experience increased pain when tapering from 30 to 27.5. After 5 bad days I decided to go up to 30 mg to get me through an intensive work period.

At my appointment (with nurse not rheumy) I was told all about Metho and understand how they work in tandem with Pred. She also said that they can take 3 months to show a difference. So now on 15 mg for 2 weeks, then 20 mg for 2 weeks then up to 25 mg for as long as necessary. With a folic acid does once a week 4 days after taking Metho. I have blood tests booked in for each 2 weeks with a Blood Record book in my keeping. They were quite strong on telling me about liver issues. What I was told by my dentist though was to make sure if I get any kind of infection to tell the doctor... not sure what this is unless it is because the immune system is dormant on all this medication and it can quickly cause problems. I had flu and pneumonia jabs.

the nurse (in consultation with rheumy) also recommended amotryptalene after discussing the pain I was having. I have nerve pain damage in my calf and have taken it (intermittently 10 mg at night over a 12 month period) when it has been really bad and I noticed that i did sleep better and my head although not pain free felt less foggy. She said it can help and suggested I take it alongside Pred, Metho and aspirin. I was prescribed aspirin but stopped taking it at Christmas when experiencing stomach pain. I am also on one omeprazonal per day.

So, 30 mg Pred.

15 mg Methotrexate.

1 omeprazonal

10 mg amatryptaline

Folic Acid

I am also taking calcium supplement, vit E, C, B12 and multi vit. I was taking milk thistle and tumeric but the nurse told me to stop milk thistle and that tumeric had no affect whatsoever.

I feel like there is a path here but what a tricky journey. I felt quite desperate last night but just keep giving myself an assertive kick up the derriere and as always counting my blessings.

I am keeping daily log now of how things are as I lose track and when I have a good day I am so happy that I forget the long difficult days.

Thank you so much for being everyone's support. I have taken note of Kate's recent post and trying to keep this post factual and succinct, but always huge thanks from the bottom of my heart. Living on my own (lol, with the 2 fur babies - cats who are very helpful) this forum is hugely reassuring and has given me a real lifeline of advice and reassurance.

FODxx

[MhairiP]

Just wondered if you're taking vit D as well?

I think the jury's out on turmeric! Some people find it helpful for inflammation, others find it makes no difference. Until there's proper research carried out, we don't know for sure.

I do hope the methotrexate does the trick without too many side effects (I can't offer any words of wisdom as I have never taken it!).

[Fieldofdreams in reply to MhairiP]

Yes i am taking vit D as well. Will take anything natural if it helps. Thank you for your msg. X

[PMRpro Ambassador]

I wonder why he leaves it 4 days before taking the folic acid? Most say next day. Even so my hair started falling out almost immediately!

Do hope it helps you.

[Fieldofdreams in reply to PMRpro]

Hair loss!? Omg. Its already been going on Pred. Just had a 'thin hair style' 3 wks ago.

Takung folic now! X

[PMRpro Ambassador in reply to Fieldofdreams]

1 dose per week of folic acid may not be enough - many rheumies increase the dose according to adverse effects and someone (I think MrsNails) took it daily except for the mtx dose day. Like everyone else, everyone is different.

My yuk pred hair improved eventaully and once I stopped mtx it has come back to normal very well - but it was exceptionally thick beforehand, drives my hairdresser nuts!

[Fieldofdreams in reply to PMRpro]

Thank you PMRpro. I did read somewhere that it might help to be more and your advice seconds it. So sorry about your hair. My was long and not too thick but after the biopsy I had a nasty biopsy and then it's been going fine and fine so I went down a trendy medium length Style but now I have to do my hair every day but hey it could be worse. I'm so pleased that it does eventually come back. Warmest wishes x

[PMRpro Ambassador in reply to Fieldofdreams]

It was fine until I was put on Medrol (methyl prednisolone) and then it turned into a brillo pad!! But once I came off that - OK, just had to be patient. Same as last year, my 5-year hairdresser must have learnt some new idea at a course and decided to use it on me despite naturally curly hair which I'm now told this thinning technique shouldn't be used for. It has taken a year with a new hairdresser to grow out...

[Suet3942 in reply to Fieldofdreams]

I’ve been told to take it every day.

[Hidden]

Hi Fieldofdreams

Not sure if l posted my Methotrexate Experience to you last week? If not, l can send it to you.

It really does take a while for the MTX to kick in & then it’s quite subtle at first.

Make sure you take it with a full glass of water & if you do have any nausea keep your food light on MXT Day.

I always kept a ‘free’ day following MXT Day just incase l was tired!

The blood tests are important & they will pick up any issues with your liver long before you suffered any side effects.

I’ve been off it since August & am really feeling the difference it’s made to me 😟 so I’m hoping l can restart it when l get to see another Rheumatologist.

If you have any specific questions, l’m happy to help if l can & l can send you ‘My MXT Story’ if l haven’t already.

Best Wishes

MrsN x

[Fieldofdreams in reply to Hidden]

Dear Mrs Nails thank you so much. I wasn't told to take with a full glass of water. In someways I wish I could do the injections as I believe they dont have the same side effects. I will drop you a line via messages with any questions. Be great to be almost pain free and get the Pred down. All best wishes FOD xx

[Dontwannabesick]

I was advised 6 to 12 weeks. I think it was around 6 weeks when I started to feel 'better' somehow. It's really helped me taper from 55mg to 25mg of pred in the 12 weeks. Hair's thin, but I still have some. You need 5mg of folic acid every day except mtx day. Hope it helps.

[Fieldofdreams in reply to Dontwannabesick]

Thank you so much for the advice, especially re folic acid. I didn't know about the hair loss; thats going to be tough... KI got a moustache and round face with Pred. Once you got down on the Pred down did your hair improve? x

[Dontwannabesick in reply to Fieldofdreams]

Hair not improved noticeably, but I think it,'s the methotrexate that has done the most damage.

[aladymo]

I was told from my experience takes about 3 to 4 months to enter the body and then it starts to work where you will feel a difference. So far I am one of the lucky ones because I have had no side effects. I am on 1 mg of folic acid every day but methotrexate day. Drink water ( not only because you’re on meds because it’s good for you!!).

Plus I forgot to mention , I split my dose. 1/2 in morning with breakfast and 1/2 with supper.

[Fieldofdreams in reply to aladymo]

thank you so much aladymo. Do you mean splitting your dose of Metho? I am always afraid of forgetting (I work away from home quite often). I am going to take 1 mg of folic acid per day except metho day. So many people have said that on this forum. Best wishes

[aladymo in reply to Fieldofdreams]

Yes I split meth. The doctor said it would be easier on the stomach. I did feel a tiny bit queasy the first time I took it after that I felt nothing. 1mg folic acid seems to work for me. I also got a couple of mouth sores but I just rinsed for a couple days with salt water and they were gone.

[PMRpro Ambassador in reply to Fieldofdreams]

If you feel you need it ask about more than 1mg folic acid per day - that is the bottom of the ladder. My rheumy also said to take half the mtx at bedtime and the rest next morning - it was fine in terms of nausea, that was never a problem!!! Just the rest...

[aladymo in reply to Fieldofdreams]

You are welcome. Good luck.

[Brantuk]

Hi FoD - I don't know exactly how long it takes for Mtx to take effect - I assume pretty quickly cos my rheumy was emphatic I take folic acid 3 days after my Mtx every week (folic acid reduces the effectiveness of Mtx). I'm on 20mg Mtx and two folic acid pills weekly, plus 9mg Pred daily to control inflammation, and a lanzaprozole pill daily for indigestion and stomach protection.

Mtx supresses the immune system and acts as a "steroid sparer" - in theory that should aid pred tapering and help reduce inflammation. I've learned to live with the daily "wooziness" caused by all the pills, I just take 40 winks and sleep it off. My bloods are checked every two months now (with special attention to liver function). Vitamin B6 helps repair nerve damage - I take a 10mg per day and it seems to help. We're all different I know, but I hope thats useful for you.

[Fieldofdreams in reply to Brantuk]

thank you so much Brantuk. This helps greatly and I am going to add B 6 to my tablet cocktail. I would dearly like to get the Pred down. I am on 30 mg at the moment. I had got down to 25 mg but had a flare and much pain so went back to 30 mg. I seem to be ok there when I am working. I am going to have to schedule work when I can so its not too heavy on the day after Mthx days. I wasn't too bad on the first dose but I imagine as it builds up in your body that the side effects might kick in. Thank you so much and I send you good wishes for your continued recovery.

[Suet3942]

I have been on methotrexate for about 2 years. Took about 5 weeks to kick in. Recently I decided to stop taking it because my hair was thinning and in my naivety, thought perhaps it wasn’t doing much. Ok for 4 weeks and then a big flare. Back on it now. Hope you get some relief soon. X

[Fieldofdreams in reply to Suet3942]

Thank you so much. I hope the benefits kick in. Today my mood is quite lowl so the support from those on here with personal experience really helps. Good luck to you too.

[Suet3942 in reply to Fieldofdreams]

Thank you, x