Methotrexate

[Phed]

I had a really good appointment with a rheumatologist in Sevenoaks last week and will now be trying Methotrexate to see how I get on with it, needless to say I had lots of questions to ask before I committed myself to go on it, but I forgot to ask if taking Prednisone and Methotrexate together would help to reduce the level of stiffness I’m getting especially first thing in the morning with out increasing the steroids, I know I should go up on the Prednisone to help ease the stiffness but I’m reluctant to do it at the moment as I want to try the Methotrexate first along with the steroids, (for some reason I can’t start them till I get the letter from the consultant even though I have the prescription just waiting to be made up) I was wondering if anyone had noticed if taking the 2 tablets together helped reduce the stiffness, rather than increasing the steroids.

[Sharitone]

For me the short answer is No. After 4 weeks on MTX I felt a bit less fatigued and was able to go back to work for one morning a week. However, after another 4 weeks it got worse again, and I haven't worked since, 7 months on. I didn't wee any improvement in stiffness. However, it does work for some people. Mrs Nails has done some pinned posts on the subject. One good thing about it is that, even if it doesn't help, it may be the stepping stone to tocilizumab, as apparently in the UK you have to have tried a DMARD before getting a biologic.

[Phed]

Thank you for your reply, what a shame it didn’t work for you and you haven’t been able to work for 7 months, it will be nice if it helps with the fatigue as that is a big problem at the moment. I will look at Mrs Nails pinned posts.

[Pawscat11]

Sadly it didnt work for me and the fatigue increased ten fold adding nausea as well to the mix. I now have upped my steroids instead and feel so much better. I will stay on a higher dose of 15mg for a while to get stable then try to reduce much slower.

[MrsNails]

My Methotrexate Journey is in FAQ’s along with other info on MTX

healthunlocked.com/pmrgcauk...

I hope you find it helpful - if you have any questions please ask.

Kind Regards

MrsN

[MrsNails]

In answer to your question about stiffness - the aim of adding in a ‘Steroid Sparer’ is to hopefully make the Prednisolone more effective ie to get you to a lower dose without encountering any issues.It takes up to 12weeks for MXT to start to work, so you may not notice the difference at first.

What dose of Pred are you on currently & how long have you been on it?

I’ve also added a reply a bit further down in replies.

MrsN

[Phed in reply to MrsNails]

Thank you for your reply, I’m currently on 9mg of Pred but I know I should really go up as the stiffness in the morning is quite bad, I have been on the above dose for 5weeks now, I have read some of your articles on the link you sent through and they are really helpfully thank you, I’m sure once I’m on the MXT (he doesn’t want me to start until I receive the letter from him with all the instructions on it) I will have more questions to ask you, I was interested to see you mentioned it can take up to 12 weeks to work as he has given me enough prescriptions for 3 months along with Folic Acid tablets as well, the dose on the prescription for MXT is 15mg, I’m looking on the positive side and always have since being diagnosed with GCA August 2019 and PMR in March 2021, my biggest disappointment was getting down to 2mg of Pred in February 2021 and then the PMR kicked in pushing Pred up once again. Thank you once again for the link. Pauline

[MrsNails in reply to Phed]

It is difficult Pauline 😞 what time of day do you take your Pred? It seems a shame you have to start it when the dose you are on isn’t keeping your symptoms at bay.

Do you have a helpline number for the Rheumy Nurses, as it might be worth a chat with them in the first instance.

When l reduced l went down by 1mg per month until l got to 9mg (l started at 18mg) but from 9mg l tapered by 0.5mg per month Consultants Instructions & it worked to 7.5mg

I’m currently sitting it out at 10mg & hoping to start to taper again very soon but unfortunately PMR tends to have its own ideas!…..

[Phed]

I usually take Pred about 9am with my breakfast, I do have a helpline number for the Rheumy nurse, so I will give her a ring, the Rheumy has suggested once I start the MXT after 6 weeks to cut down by 1mg with the view to eventually come of eventually which would be lovely.

[MrsNails in reply to Phed]

The Rheumy Nurses are very good & very knowledgeable on MTX My Team are great, just be prepared to leave a message & your telephone number, hospital details then they’ll get back to you. (During Clinic Hours 9-1 & 2-5 they are usually in the clinics)

[PMRCanada]

I found splitting my pred dose and taking part of it around 2-3 am, and the remainder around 11am, virtually eliminated morning stiffness. If you have access to enteric coated pred where you’re located, you can take the first part of your split dose before bed and it will be delayed coming on board around 2am (so you don’t have to get up at that hour every night).

I’ve recently started Methotrexate and was advised to get my COVID vaccine booster (3rd shot) two weeks before starting MTX, as I would get a better response. Being on both pred and MTX means my immune system is more suppressed than had I only been on one. My rheumy also wanted bloodwork done before I started MTX, and monthly thereafter to monitor any changes.

I’m only on week 5 of MTX and haven’t noticed much change thus far, except my CRP level is the lowest it’s been in 3.5 years. I started a slow 6-week taper last week dropping 1mg from 9 down to 8. I’ll know better about it’s effectiveness in a months time, as I had flared multiple times in the past trying to taper down by only .5 mg to 8.5. Time will tell.

Wishing you all the best as you start this new medication. Glad to hear your rheumy/consultant are being thorough before you begin. Lots of info to wade through when on-boarding a new medication.

[Phed in reply to PMRCanada]

Thank you for your reply, I asked the Rheumatologist last week about splitting Pred into twice a day but he told me to stick with what I was doing, we’re you advised to split your dose to help with the stiffness which seems to be working really well for you, I’ve had the blood work done before I start Methotrexate and once I start the Methotrexate I will have to go every 2 weeks for blood tests, I understand from what people say it can take up to 12 weeks before you feel any benefits from Methotrexate, I’m about to book my 4th Covid injection as I have been advised by my Rheumatologist due low immune problems (I have an under active thyroid as well). Thank you for your best wishes on starting this new medication, this might sound daft but I’m really looking forward to trying MXT I’m a positive person and hope to get off steroids and be pain free, Mrs Nails has lots of interesting articles on MXT that I’m reading through and find very helpful.

[PMRCanada]

I did discuss splitting my dose with my GP who was open to me trying it. I wasn't under the supervision of a rheumatologist then, only at very beginning and now again 3.5 years later.

Hope MTX works well for you!

[Phed in reply to PMRCanada]

Thank you fingers 🤞it will.

[Phed]

Update on MTX, I have just had a call from my Rheumatologist and he now wants me to wait a while longer before trying MTX and have another blood test in a couple of weeks time ( he has just had the results from my blood test last week) and see how my liver and kidney functions are as they have changed slightly since when they did them in November, I can’t fault the care I’m getting.