Methotrexate or azathioprine?

[sezzie]

Hi All, I was diagnosed with sle in february & started on plaquenil, prednisone & tramadol for knee pain. When I last saw my rhuemy he said I have arthritis too & need to go on either methotrexate or azathioprine as plaquenil alone isn't working. Researched both & don't want to go on either. I would greatly appreciate any advice from anyone who has been on these drugs & who they affected/helped you. Many thanks in advance, Sezzie.

[uzi41]

Hi im on plaquinil, steroids and have been on azathioprine since march, I am on 150 mg of azathioprine and I must say nothing has eased my knee and back pain. Each time I go to the hospital every 2 months my dose of something goes up and I wait to see that I am getting pain free but no. Doc now is saying pain is due to my weight which I don't believe I have gained that much weight to be in this much pain. Also because of all these meds especially the azathioprine I have a blooutest every 2 weeks. But this may haya different affect on you, all the best.Xx

Uzi

[sezzie in reply to uzi41]

I'm sorry to hear that you are still in pain, I can totally sympathize with you. I must admit I'm not holding out much hope of being pain free on either of them. I've gained a stone & a half from the steroids but still only weigh 10 stone & in a lot of pain like you, so blaming your weight for the pain is unjustified. I agree they are too willing to just throw meds at us which don't help much. Thank you for your advice & I hope you feel better soon. Keep me posted.

[uzi41]

X

[madmagz]

Hi uzi41

I came off azothiaprine to go on to methotrexate and am so glad I did. I do however have to take folic acid too to help my liver cope with it but the benefits have been great. I only need to take it once a week and the reduction in joint pain is incredible, I don't even use a stick all the time now - I take a fold up stick out in my bag in case I need it once I am out. I did suffer with mouth ulcers and sores on my lips to start with but once the folic acid was in my system they cleared up. I have no side effects and already had to have frequent blood tests so the regular blood test I have are now part of my routine. I have been able to get and doo more which helps me keep my weight down, I am on prednisolone 15mg daily - previously 40mg and have not put on any weight as I lead an active life.

If you decide to try Methotrexate I sincerely hope you find it as beneficial as I have,

Good luck

Madmagz x

[sezzie in reply to madmagz]

Thank you your message has helped me a lot and restored some of my hope & faith. Stay well

[madmagz in reply to sezzie]

Glad to have been a help I know what it's like when you have such an illness and you get fed up with so much negativity around you. All the best hope you get on as well as I am doing

Madmagz x

[mstr]

Hi there, for me too methotrexate has been positive. I had two bad weeks with it but that was just because I was in a flare up rather than the methotrexate causing it. Like Uzi my joint pain is a lot less (though often starts to ache and is sore on an evening). It has reduced my flare ups and the intensity of them and I feel less fatigued and have started to be able to go out(though in a planned way and not walking too far).

Apart from the two weeks when I was having the bad flare up I have never been sick (felt a little nausea at first but take it after a slice of toast and two tablets at a time (I take eight on a thur evening and go straight to bed). Friday am....I often feel sluggish in the morning but by 12 pm I can feel it is working. I was on 6 tablets weekly but still getting the flare ups more often so increased to 8 but as reluctant as I was to go on it .....I think I would have struggled massively without it. I think the idea is for it to be increased to 10 tablets weekly and then to see if I can cut down my placquenil gradually (at present on 400mg daily). Tried to cut down on this recently but couldn't as was in pain. So I'm putting my trust in the rheumatologists hands on this one.....so far I wouldn't change it. Understand how you feel as felt the same but worth thinking about. Good luck xx

[kittykat68]

hi , ive been on metho 2 years in november i take 3 x2,5mg every monday, i was on plaquinil for 2 years and the clever dermy decided i was on too many meds (156 a week) so i weened off of them last nov and by jan i was screaming for them back , it took until june this year (and for me to loose hair my hair again)for them to re prescribe but like mstr i take them just before i go to bed as otherwise i feel sick and get stomach cramps , i would highly recommend it and if they told me i would have to come off of it then i would be kicking and screaming, however ive had to reduce the plaquinil to 200 a night as i was suffering cluster headache and nose/mouth ulcers, AND you do know that metho suppresses wot immune system that we do have ( i was not given any information so im just trying to make u more aware as im sure you were like us all shocked and confused with lupus diagnoises)so i suffer with chest infections a lot as i have copd and emphazema obviously lupus attacks my lungs not my kidneys the drs tell me usually if your a drinker not even heavy then lupus tends to go for ur kidneys but smokers tend to go for lungs how true this is we may never know as every consultant i see ie thoracic/derm/rheumy seem to be of difference opinion sometime si wish they would say sorry i dont know rather than sumize but sadly i was diagnoised feb 2010 after 12 years of being told o you are going through an early change/nervous breakdown/allergic to washing powder/stressed and thats just to name a few so im not good in believing what drs say, i always asked for a copy of every letter from all my consultants as benefits have been a fight to so i keep these copys for my reference and i took them to my tribunals , hope ive helped and not scared you, but just remember every lupus suffer is different its not like having say diabetes and all the symptons are the same , during the course of a week my symptons are just ridiculous they go from one extreme to another no two days are the same but thats me not every sending spoons

[sezzie in reply to kittykat68]

Thank you so much to all of who have taken the time to reply, I'm very grateful & you can't beat hands on experience! I still don't know what to do but I can't go on like this for much longer. I'm in constant pain, swelling up & can only walk for a few minutes before I have to go in a wheelchair, which at only 38 years old & with a young family is extremely upsetting & frustrating as I'm sure it would be at any age I might add. Lupus really is a vile illness & I've not had 1 single day since christmas that I've not been sick & in pain. My heart goes out to all you fellow sufferers & I pray that they find a cure soon! Cheers guys, sezzie.

[Malteser]

As I have just posted... on another thread... always always check the meds your rheumy advises you to take... see the interactions, and discuss this with your specialist. Sometimes the interactions are actually worse than your symptoms. at one time, like kittykat, I too was on allot of meds, and they really did more harm than good over the years. Now today almost 40 yrs since I was first diagnosed, I am whoopptidoo antibiotic resistant ... which means most meds have to be given via I.V and those that don't have caused internal haemorrhage. Wish I listened to others who pre warned me 20 yrs ago, but there you are... beware.

[sezzie in reply to Malteser]

I too already take a lot of meds everyday which seem to be causing more harm than good, & have to take meds for the side effects! sometimes I feel like coming off everything but im too scared. 40 years living with lupus! I bet you're more knowledgeable than the consultants! Thank you for your advice & wishing you good health.

[ijeasike]

i have had both and am still on aziotiaprine, which works better for me. the other made my stomy ache.

[juneybells]

Hi I am on both, my rheumy believes all Lupus sufferers should take plaquenil as it helps keep flares down and for me it does, doesn't help the painful joints but I have less chronic flare. however, because I wasn't having many flares my liver became inflamed from a lupus flare and went un noticed for a long time, so now I have AIH and have lost more than half my liver, to keep the inflammation in my liver under control and avoid a possible transplant I take azathioprine as well as prednisone and again for me this works. I think every SLE sufferer is different and you need to try any medication that might work, if they don't work tell your doctors and try something else until you find what works for you.

I really hope you get the pain under control soon

thinking of you

June

[sezzie in reply to juneybells]

My god, it sounds like you've really been through a rough time. I hate the thought of taking more meds but on the other hand I can't go on like this for much longer & I've been flaring for so long now that I too worry about internal damage. Stay well & i'll keep you all posted. Best wishes. X

[juneybells in reply to sezzie]

I'm stable now and that's what you need to be, I know taking more meds long term is not good, but short term they can stop flare. Good luck hope you feel better soon x

[sezzie in reply to juneybells]

Once the lupus is under control do they wean you off the methotrexate or azathioprine? Also as it can be damaging to your liver does this mean I won't be able to have a glass of red with my evening meal? I've already had to give up smoking & would hate to give up my wine too! Sorry to throw all these questions at you but there's certain things you wouldn't want to ask your rheumy. Also they now think I have osteoarthritis in my knees, is that something we all eventually get from steroid use? X

[juneybells in reply to sezzie]

I have never taken methotrexate just azathioprine and have been taking this for over 2 years now have been told will be on this for life! But have also been told a glass of wine won't hurt but to lay off bottles lol everyone is different so ask if its OK for you too have the odd glass of wine. Really hope you start to feel better soon

[sezzie in reply to juneybells]

Thanks for that. My days of more than 1 glass are long gone, think i'd sleep for a week Take care & thanks for all the advice.

[Slowmo]

Hi, I was on azathioprine for approx 18 months and didn't feel it improved my symptoms that much, until that is the rheumy took it off me due to the increase in liver enzymes it caused and then I realised how much it had been helping. I'm waiting for my liver to normalise so that I can go on something, either azathioprine or methotrexate. Overall it did help me more than I realised and despite the damage caused to my liver, I'm pretty sure I'll end up back on one or the other.

All the best - I think it's a very individual thing and you'll have to see how your body reacts.

[Deysi]

Hi I'm from Peru so I hope you can understand what I write, I'm not very good at writing in English. 1 ½ years ago I was diagnosed with SLE start with hydroxychloroquine, azathioprine and prednisone. At first the pain was very strong in the hands, chest pain, fatigue, nausea, could not walk, could not sleep lying down, I was diagnosed with cardiomegaly, pericardial effusion (fluid in the heart), lupus nephritis, I'm a nurse so that all the discomfort I had to stop working for a while but now I feel great, continued with the same treatment but in low doses and for me it worked very well azathioprine. What you have to keep in mind is that the treatment is customized for that not all patients respond well to treatment with the same drugs so you should trust your doctor. I understand what you're going through, I know it's hard to adapt to as SLE diagnosis taking into account all the pain and complications occur but you have faith and patience do not lose hope and see that anger slowly improving, is very important that you calm, zero stress a healthy eating, sleep, have a healthy lifestyle, and much family support. I wish you luck and hope you find a treatment that makes you feel much better.

[sezzie in reply to Deysi]

Thank you for your post & im thrilled that your meds are working well for, it also gives me some hope! I'll keep you posted on how I get on.

[Malteser]

Sezzie, having lupus for 40 yrs helps. Meds are for individual needs, not one person is the same as the next person. The first time I went on 'strike' and refused any medications, my rheumy in the Ashstead hospital, refused to have me as her patient. I did turn for the worse, and I panicked, and went on all the meds all over again, then gradually I started to cut back, and thankfully 10 yrs ago, I was not on any meds at all, in fact was in 'dormant' state for over 10 yrs, then mega stressful situation a yr ago, and I was given 5mg of prednisolone which I am still taking today, as well as warfarin. Unfortunately, all the yrs of having a cocktail of meds, has really ruined my system, so that as stated in previous post, I am antibiotic resistant, so wish I had done it earlier. I have had to make some serious changes in my life, to ensure peace, and live now partly in Malta, where the warmer weather suits me. Kind of scared returning to the uk next week, for winter... but one day at a time... fingers crossed. x

[sezzie]

10 years wow I wouldn't say no to that Thats fantastic that today you are only on steroids although it sounds like you've had way more than your fare share of illness. I'm surprised the heat is better for you I have really struggled this summer although I have been flaring for 5 months so that doesn't help. sounds like you should stay in malta? it's so nice to hear from other people who suffer like I do as I've been so unwell and sometimes think it's all in my head as surely little old lupus couldn't be so debilitating and cause so many problems and pain. I hope you don't suffer too much coming back to the uk and remain well. X

[joannebond360]

Hi. I have just started on methotrexate injections yesterday. Other than feeling a little bit queezy and tired last night that's all and I feel fine now. Tried azatthioprine but it gave me a really bad tummy. Also on plaquenil and 6mg prednisilone. Was also scared before trying either of them, the side effects sound terrible, but had got to such a bad point that I think I would try anything! Good luck, let us know how you get on.

Jo x

[sezzie in reply to joannebond360]

Thank you for your reply jo. I too have got to the stage now where i'll do anything for a bit of normality & pain free would be nice! I hope the methotrexate works for you & with no side effects. Please keep me posted on your progress. Good luck. X

[joannebond360 in reply to sezzie]

Thank you sezzie. Here's hoping for some good days for us very soon. Forgot to say also that methotrexate injections are meant to have less side effects. Good luck on which ever you decide xxx

[sezzie in reply to joannebond360]

Hi Jo, how's day 2 on the methotrexate going? Spoke to my rheumy today as I've been really struggling & they said they think I should try methotrexate first so i'd appreciate any feedback. I've also heard that self injecting is much better, lets hope my rheumy thinks the same. I hope your'e still feeling well on it, I've got everything crossed for you. X

[joannebond360 in reply to sezzie]

Hi Sezzie. I'm ok thank you. Felt a bit sicky and tired but feeling better this evening. Got some anti sickness tablets from the gp but haven't needed to take them. I felt really tired the day I had it and yesterday. Sorry to hear you are struggling, I would give it a go! I was terrified after reading the side effects and was waiting for something drastic to happen but so far so good and the side effects should pass soon. Couldn't go on with feeling so ill. Good luck, let me know what you decide. Got my gp to inject me as I could not face doing it myself, have to have bloods done weekly so can have it done at the same time. Thinking of you.

Jo xx

[sezzie in reply to joannebond360]

Hi Jo, I'm thrilled to hear your doing so well. Are the painful joints improving? I'm not seeing my consultant til the 22nd of october & to be honest by then I think i'd take anything he offered me! Good luck love & we WILL get better! X

[joannebond360 in reply to sezzie]

Thank you so much. It's meant to take between 2 and 6 weeks to start working but my joints have felt pretty good today so not sure if just a good day which I haven't seen for a while or it's helped already. We will get better good luck for your appointment and message me any time with any questions or anything. Lots of love xx

[Blueeyes57]

Hi. I have had slept for twenty years but up till recently it has been pretty stable though I have all the symptoms and the fatigue us crippling. I am only in 2mg steroids which I can't seem to reduce like they want me to and hydroxy. They did want me to start azathioprine but refused as really reluctant as already have loads of infections and many gastric problems and I believe azathioprine can worsen these. However have been in flare for weeks now and can't go on feeling so bad and lonely and isolated as I can't get out and live on my own. Thinking of asking for mthotextrate injections instead as they look to be better tolerated. I feel my rheumatologist doesn't listen now I refused azathioprine however so low now that I am willing to try something but perhaps weekly injections might be better.?? That is if he agrees to it of course! I have a rare condition linked to Lupus called GAVE (similar to Gastric vasculitis) so restricted to drugs that won't irritate stomach lining. Any suggestions welcome.