Methotrexate ??????

[Mumager]

Hi this is my first post !!

Today I'm struggling to get my head round yesterday so I'm hoping someone out there in our lupy world will help. I've just had a bank of bloods and a chest X-ray done in preparation to start methotrexate but I'm really unsure about taking it . Any advise greatly appreciated

[whisperit]

Welcome Mumager,

Do you want to say a little more about your situation like what diagnosis you have got (if any), why you are starting on methotrexate and what specific questions or worries you have?

I'm sure there will be lots of people here who will be glad to help

Mx

[Mumager in reply to whisperit]

Sorry it was a bit cryptic my heads spinning today. I've got Sjogrens SLE and raynaulds. I've tried taking hydroxy but it gave me bad migraine and upset stomach, I've been in a "flare" for a while now and went to see consultant yesterday and after a long discussion it was thought Methotrexate would be worth a try, but I'm really not sure I'm not good with medication and after stopping hydroxy have managed to stay drug free up to now bloody minded maybe but feeling a bit of a failure and very emotional today.

[samlewis67]

hello ive been on methatrexate for about 9 months now and have no side effects from it now , at the beginning i had bad headaches but they didnt last long and slight sickness but now nothing . my dose keeps going up but was started quite small , i found taking them before bed worked better for me , drink plenty of water and dont hesitate to contact someone if you struggle good luck and best wishes x

[Mumager in reply to samlewis67]

Oh thankyou for the info samlewis67 good to know your side effects haven't been too bad. Are you feeling any benefit from taking it yet ? Do you have to have regular bloods done I've got to have them every 2wks for 4 months ?? I'm assuming to check liver ok.

[samlewis67 in reply to Mumager]

hello i've been taking it for about 9 months but am now finding its not as effective as at the beginning so the dose will probably get upped again .i have blood tests done every 3 months now no problems with the liver ,i drink alot of water which helps xx

[IffatA]

Hi. I've been having Methotrexate since June 2016. Before I say how I feel about it I want to tell you my side effects, but don't get scared/worried because everyone is different! After taking Methotrexate I get a lot of nausea, sleepiness/tiredness, and I lose my appetite. I take it on a Friday so that I can recover over the weekend, but I do usually feel down when I take it. It hasn't helped me a great deal but has made some difference. It is definitely worth a try though as even the smallest relief of pain can be enough for people like us I don't love taking this medication but I know I have to in order to feel a bit better overall. It doesn't hurt when taking the injection, just be sure to numb with ice before.

Hope this helps.

[Mumager in reply to IffatA]

Thank you for your insight it's appreciated. I think now I've stopped freaking out I'll give it a go nothing ventured nothing gained. Sorry to hear it's not been very beneficial for you but yes some relief is indeed better than the hideous pain we can experience.

[Ianrussell69]

Hi I've been on methatrexate and hydroxy for about 12mth everybody's different sometimes I have no side effects but if I do I gat headache,and generally feal like I'm coming down with a good head cold but in my opinion the plus dose out way the bad that said I have a mone on the lupus site from time to time as it can drag u down ,when I'm a bit run down and take it I do feal quite bad I had to laf I'm 48 and the nurse told me to expect duvet days she was right .also just resently it has given me high bp and migraine aparantly due to being a bit run down try them my jelly legs are a lot better you will need 2weekly blood tests though

[Mumager in reply to Ianrussell69]

Thanks Ianrussell69 yes been to,d 2wk blood tests. I like being able to thrash things out on here everyone so supportive and helpful.

[Ianrussell69]

Forgot to say after 4/6 months the bloods go monthly

[Bacardibabe76]

Hi

I have been on methotrexate for a year now and I have to say it definitely helped with my aches and pains and strangely not got any bad infections (which is not the norm) although I'm coming down with something now 😞.

At first I felt a little iffy the day after taking the tablets, but it's much better now. I take them on a Friday evening so hubby can help with the kids if I feel crappy the next day. I also switched my folic acid around and took it the day before rather than day after and I've been much better that way round. If I do feel sick the day after I take another folic acid.

I think it had definitely helped me and worth a go.

Please remember you must get your flu shot each year and you are also entitled to the pneumonia one too. They usually do that once in the lifetime for the elderly but immunosuppressed have it repeated (not sure on frequency).

What dose have they started you on?

All the best

L xx

[Mumager in reply to Bacardibabe76]

Thank you for taking time to reply and the heads up on the flu jab. I've been started on 10mg a week to see how I go to be increase if needed just waiting on chest X-ray results before I start it.

[Mrsrkendall]

Hey, welcome aboard!!! I you can follow me and my posts if you like. Im just starting on mtx as well. My first dose was two weeks ago and my third will be on Monday with an 3mg increase. My Max will be around 25mg a week unless they don't see what they want and may increase it more.

It's true, everyone's body responds different. So far I feel tired the day after my injection (not sure where you are at but fore the injections are cheaper than the tabs and supposedly less side effects). I will say that nausea is and beaches are by far my worst symptoms but they're not overwhelming by any means. I've also had hair thinning (I'll post about that on Monday or Tuesday), but it can also be caused by my inflammation and other meds I'm taking.

I know methotrexate is a scary sounding drug but you have to weigh out your long term health and the med. And with this awesome forum of people to chat with it makes it a little less scary!!! This was the first place I found that was encouraging and people weren't hateful. They'll try to support you through it in only ways that other chronic disease suffers...no survivers can!!!

Good luck and look forward to seeing you on!

[Mumager in reply to Mrsrkendall]

Thanks for the support Mrsrkendall I go from yes I'll give it a go to total anxiety but the sensible me knows I've got to try it. Good luck with your journey on it hope it makes a difference for you. X

[Chanpreet_Walia LUPUS UK]

Hi Mumager,

Methotrexate suppresses the immune system and is used to treat moderate to severe SLE. Methotrexate can be taken orally or injected under the skin once a week. The Arthritis Research UK’s website provides a detailed overview of methotrexate which you can read here: arthritisresearchuk.org/art...

We offer a free lupus information pack containing factsheets, guides, a list of helplines and LUPUS UK contacts which you can download or request here:

lupusuk.org.uk/request-info...