Methotrexate......

[Jo883]

Just wondering how many of you have had success on methotrexate? Both positive and negative. I have just been offered this drug, but atm don't feel like I have been well/stable long enough to take on this med and potential side effects - it scares me!! If you did take it what were your side effects? If it didn't suit you - what were the alternatives given? Thanking you in advance for yr help xx

[Hidden]

Sorry jo883, my reply is a negative one. I took some time to get used to metho. I had a lot of nausea, even with though I upped my frolic acid to help. Then after about 3 months, I started to get the benefit of it, and it was good. Another 3 mths on and I developed a cough. I soon noticed that it was worse on the day I took it. I reported this to my GP and rheumy, more than once. A year later, and I was having my monthly bloods, and mentioned the cough to the phlebotomist. She asked if I had a lung function test as according to her, metho can affect the lungs. My bloods kept showing tripling of my liver results, so the metho was stopped for that reason. I had to have routine chest X-ray which has led to numerous ct scans. The end result is that I have liver and lung damage due to metho and lupus. Consequently, I am not on any immunosuppressants as they don't know what to do with me, except give lots of steroids.

Now that I have scared the living daylight out of you I must balance the difference. Metho has been used for years, a lot of RA patients take it. I often read on this site about the positive effect it has had for lots of sufferers. You may cope very well on it, and as I said, you have very regular blood tests to check. Usually, any side effects stop, once the drug is out of your system with no damage. I was not getting the best care at the time, so I was ignored. Just be self aware if you take it, and report any changes immediately. Hopefully you will do well on this drug if you decide to take it.

[Jo883 in reply to Hidden]

6161

Thks for your reply. I'm sorry for what you've been through this illness sucks enough without adding insult to injury. My gut instinct is telling me just not to take it - I understand why and realise that I need daily steroids to feel as normal as possible and this isn't good long term - but not prepared to sacrifice 2 days a week feeling sick and potentially other organs that are perfectly fine atm - I'm just wondering if you get a choice in the matter - ie I'm not sure I want to take metho Dr, but would it be ok if I try mycophenelate?! Or is it the case that we are all started on metho and then changed if it doesn't suit us and is there a reason for that? I have heard it's successful on RA, but I don't have RA! I am scared to take this. Pros and cons on long term steroid use or chemo?!? Thank you so much for ur reply, sending love and well wishes xxx

[Hidden in reply to Jo883]

Hi jo888, I've never been offered myco. We all react differently and it's our bodies so yes, we have a choice. The idea of steroids is to dampen our immune system, but as you know they too are not good. I have always needed steroids whatever other meds I'm on. There are only a couple of drugs that are actually for lupus. I know bellimubub (spelling) is one , and hydroxy is another I think!!!!! We do share a lot of RA drugs, which are usually helpful. Just don't be bullied into anything, but remember the lupus can cause as much damage as the meds, if not under control.

[joannebond360]

Hi. I took methotrexate injections for 3 months, although it helped a lot with my joints I was feeling wiped out on the day of the injection and very sick. My consultant changed me to mycophenolate and I have had zero side effects and it's helped me so much. Good luck with it, just trial and error til you find something that suits you and works.

Jo x

[Jo883 in reply to joannebond360]

Hi Jo

Thank you for yr reply - I just don't feel ready for it, Taking steroids have made me feel the best I have in 2 years - I do understand they cause osteoporosis long term, but I can't think of anything worse then going through the trial of it all and feeling sick and wiped out only to be taken off it and back to square one again. I'm wondering if it the first drug of choice that we are all put on or if we can discuss it and ask about alternatives. Scares the hell out of me to be honest. I'm glad to hear you have found something that is helping you. I can imagine totally rubbing the drs up the wrong way by saying - no I don't want to take this, but can I try..... However It is something I'm going to discuss further. Thank you Jo - sending well wishes xx Jo

[joannebond360 in reply to Jo883]

Steroids were great for me too for a good while but they can become less effective, found my dose creeping up to keep me well. Now after the new meds I am down to 6mg and feeling good. Coming down monthly. Be honest with your doctor and tell him your worries. They might let you try mycophenolate first.

Take care, keep us posted on how u get on x

[Jo883 in reply to joannebond360]

Thank you Jo - no one explains anything properly - and research is left up to us - just by you explaining that has helped me understand - my dose has been creeping up, what is considered a high dose though?! I'm on 15 mg and I can function relatively well atm. I do still flare monthly with my period but not as bad. I just know I have to down tools for awhile - I don't know what I'd do without this site! Many thanks Jo xx

[joannebond360 in reply to Jo883]

Yeah this site is fab! Helped me so much. I was on 15mg and then 20 mg if I felt worse. Was still flaring all the time. Steroids also make me a bit crazy the higher doses. Gp said that anything over 7.5 is considered a high dose. I have managed to stay well on mycophenolate with so far no flare ups, feeling so much better. Dread every month coming down on the steroids and feel yukky for a week then settle down. Aim is to get to 5mg by June.

Jo

[Jo883 in reply to joannebond360]

It is really good to know that you have found something that is working for you it also gives me hope. I understand a lot better now. If u don't mind me asking do u have an increase in symptoms again when reducing the steroids? Jo x

[joannebond360 in reply to Jo883]

I had given up all hope on anything working! You will find something that helps you. I just feel very tired, achy and tearful for a week, almost feels like a flare is coming but it eases up every time. Never been good tapering down on steroids.

Jo x

[Bebe76 in reply to Jo883]

Don't be afraid theask your doctors about different meds. It is all basically trial and error unfortunately. There is not one med that works best for us all. I too was switched to mycophenolate (azathioprine did not work for me) and feel better than I have the past 4years, however still very slowly weaning off steriods.

[baba in reply to Jo883]

You absolutely should be able to"discuss it and ask about alternatives" otherwise the doctor is not doing his/her job.

[Hidden]

Hi Jo883,

I am lucky as I have had no major side effects with MTX ( apart from a bit of hair thinning ). I take 25 mg by injection and my bloods are fine. It has enabled me to reduce my steroids down. My only problem is that the effect wears off after 5 days leaving me symptomatic again. For that reason I am due to start mycophenolate motefil soon.

I don't have a definitive diagnosis, my lupus bloods are equivocal and C3 complement low.

Best wishes

Keyes

[Jo883 in reply to Hidden]

Hiya Keyes

Thank you for replying - glad to hear your doing ok on it

I'm petrified...... Just wondering what dose of steroids you were taking and what have you managed to get it down to by being on Metho? I'm on 15mg and if I try to reduce them I just flare. As I've said above it's taken me awhile to feel like a human being again after a very bad 2 years. I'm not sure I want to rock the apple cart yet!!! Well wishes xx Jo

[Hidden in reply to Jo883]

Hi Jo,

As I have never had a definitive diagnosis and because of my symptoms I was on a very high dose of pred at the start, 60mg. I tapered ok down to 15mg, then I got stuck. The methotrexate ( MTX ) is the only reason I managed to get down to 8mg. As I said unfortunately the MTX wears off and is the only reason I am switching to mycophenolate motefil ( MMF ).

I think the reason that they start with MTX as it is a " weaker " immunosuppressant than MMF. Prednisolone can be a life saver but the cumulative side effects can be very severe and it is very difficult to taper down. You can stop the likes of MTX etc if the side effects are unbearable/ dangerous. My understanding is that you won't suffer long term liver damage if you are monitored properly and blood results acted upon.

Have a further chat with your Dr. I know it's scary to change meds but your consultant only has your best interests at heart. The effects of long term, high dose steroids are insidious, they would be negligent if they didn't at least explore other options with you.

I hope you manage to come to a decision that you are comfortable with.

Best wishes

Keyes

[Jo883 in reply to Hidden]

Thank you Keyes

I can relate to your situation as on Thursday for the first time I was told by my rheumy that I had sero- neg lupus. It has been skirted around and I've been told it's 'Lupus like' but nothing definitive - on Thursday I showed her a picture of a facial rash - she said that's a very typical Lupus rash - I don't have the blood work to back it but I have quite a few on the lupus criteria list. I'm still a bit shocked really - I've been I'll since I was 19 and I'm now 42 - I have been put through the ring and have had a few diagnosis's/misdiagnosis along the way - so I do go through doubt still. I really appreciate everybody's replies they have all helped me understand of the what and why's a lot more then just being handed a leaflet!! So thank you one and all. Hope you have a good weekend xx

[bam1993]

Hi Jo883 ....I am sorry to have to tell you this but I had a bad experience with Metho too, (although it did help my symptoms and with it I managed to get off steroids).....I started taking it in Feb 13 and gradually upped it to 17.5mg once a week (tablets) by the August I had managed to come off of steroids-then at my Oct Rhuemy Appt I was told to put it back down to 12mgs as my liver results were high....As I put the dose down I had a return of symptoms-so in Nov I had to go in for a steroid shot-they took bloods and I got a phone call next day to say stop taking Metho immediately!! So I was back to square one-and back on steroids!!

Saying this, as 6161 says....there are plenty of people on this site that ARE helped by Metho-so I may just be very unlucky that my liver couldn't cope with it. I had to see the liver specialist yesterday and had loads of blood tests-as there is damage there-but they are just going to monitor it through my Rhuemy with regular bloods as it is stable now.

I have now started a treatment that I have had to get privately Low Dose Naltrexone (LDN) - and it is helping, I even went through having a cold (which would normally make me really flare and make me bed bound) without even taking a paracetomal-and manged to get through my shifts at work!!-I am managing to reduce my steroids with this, and soon hope to be off of them.....although, I know it is not a cure-and I do still have symptoms and bad days.

If you do go for the Metho, just make sure that you get your bloods checked really regularly!! Good Luck x

[Jo883 in reply to bam1993]

Bam1993

Thank you for replying x I'm petrified, not ready for this - I feel ok on steroids - I know they are not ideal long term - but surely neither is having a damaged liver?! Thank you for all yr advice. I'm glad you have found something that is helping you. I need to discuss this with my rheumy more rather then being given a leaflet and sent on my way. Like are there other options.... Maybe! Well wishes to you Jo xxx

[mstr]

Hi....I was on methotrexate for one year. I took it on a Thur night and often felt wiped out totally until the Saturday am.....It did help with stiffness/pains but my memory deteriorated greatly with it. Hence change to liflunomide which is not yet into my system so just had to have a back up steroid injection due to a bad arthritic flare up this past week. I think methotrexate is more relevant if you have joint/muscle pains....... unfortunately it wasn't effective enough for me as I swapped some symptoms for others. I just wish we could all go straight to rituximab. If I won the lottery the one luxury it would buy would be the best most effective treatment and not the cheapest treatment just saving the NHS!

[misty14]

Hi Jo883

I can be positive about Methotrexate as when I took it a few years ago it helped me greatly with joint pain. It was well monitored and I had no problems with sickness or side effects. We all react differently to drugs and my guess is you've been offered it to bring your steroids down as 15 mg daily is too high a dose to stay on permanently! It's a terrible dilemma weighing up risks and benefits to all these treatments. Metho is regarded as a very safe drug and has been used for years so the docs know a lot about it. Is there a Lupus nurse you could ask at the clinic about Metho?. Did you get any further info about a diagnosis?. It's hard to know what to do but whatever you decide will be the right decision for you. Best of luck. Hugs X

[Jo883 in reply to misty14]

Hiya Misty x

Thanks for replying - just by all your replies I understand a lot better now - I wish there was a lupus nurse that I could talk to! The rheumy has basically said sero neg lupus. I showed her the photo of facial rash and she said that is a very typical example of a lupus malar rash - I know there's probably not much difference but up till now I have been sero neg connective tissue disease - this is the first time she has used the term lupus. I've had such a long journey and battle, it still doesn't feel real. My husband came with me this time and he said about the bloods and she herself said it may take years for yr bloods to turn positive or they may never change. She also said that you are on all the meds for lupus and even if I saw a different Rhuemy the meds are the same - I think we all seek that definitive diagnosis - which I still don't have really but the words have finally come out of her mouth after a lot of skirting around the issue xx I know ur in the same boat as me - I'm just casting my mind back to all the various drs that gave me different labels over the years, I'd never really heard of Lupus!

I will discuss this more with my Dr and give it a go I guess - time to be a big girl!! Take care Misty xxx well wishes

[Hidden in reply to Jo883]

Hello again Jo,

In the past 2 years the search for a definitive diagnosis became an obsession for me. I travelled from 1 end of the UK to the other and spent a significant amount of money on second opinions.

Now I am slowly beginning to realise that in many ways it doesn't matter. My rheumy has always taken me seriously and treated my symptoms. There are very few drugs used to treat auto immune disorders, methotrexate, steroids and mycophenolate are widely used in vasculitis treatment as well. There are also lots of crossovers, overlaps and a real lack of definitive tests.

I truly hope you can have an honest conversation with your consultant and find a treatment that works. Steroids are wonderful drugs in the short term but I can echo other people's experience coming off them.

Best wishes

Keyes

[Jo883 in reply to Hidden]

Thank you Keyes - everyone has been sooo helpful and for that I'm grateful my Rhuemy is nice enough - but did kinda say time is short and here is a leaflet sort of thing. Thank goodness for this site

[misty14 in reply to Jo883]

Hi Jo

You've been hit by two important things to get your head round, a diagnosis and new treatment!. I'm going to feel like you if I get an Answer after so long, huge mixed feelings, we've been ill a similar amount of time as I was 14 and I'm now 41!. We've lost such important years to being ill. Maybe you could see Methotrexate as getting something back- life begins at 40 they say!. Have you a good GP? See what he thinks, shame no Lupus Nurse, that was a tough way to be given important info which doesn't help!. Did the Consultant give you a plan for reducing the steroids ?. You could ask to see her again sooner via your GP as you have further questions!. Good luckMistyx

[charls]

I have been on that for nearly 3 years. If I'm honest my lupus has pretty much been so much better. I'm not a doctor so I do not know which out of my 6 tablets has helped!

All I would say is I have found they are very helpful and if when you go back to see the doctor you ask everything and if things are not working they will help! Well mine do!

Well I hope that helps

[loopy-lou]

Hi Jo883, I totally understand the predicament you are in. I sat on the fence about this drug for an entire year as I was very scared to try it. In the end I decided to give it a go as I felt so ill, continual flares, pain and very bad mobility. I have been on methotrexate for 16 months now and it has helped me mainly in reducing the burning feeling of the malar rash, reduced joint pain and swelling and has improved my mobility. I have been well monitored, initially with weekly blood tests, then fortnightly and now monthly blood tests. I started on 12.5mg slowly increased to 15mg and now take 17.5mg. I have felt a slight sense of nausea and a feeling of exhaustion the day after taking it. I have managed to reduce my steroids down to 2.5mg after higher doses over the last 7 years. I am not "perfect" on it and still walk with a stick but there has been a marked improvement. I hope things improve for you.

[Jo883 in reply to loopy-lou]

Thank you loopy-lou

It really does help - I've gone from feeling like there's utterly no way on this earth that I would willingly take this to understanding why I may need to take this. I'm glad that you have found it helps you I'm still learning and mainly from this site - I was basically just given a leaflet on metho and it's side effects - doesn't fill u with joy after reading it!! I'm also wondering about the steroid taper and how it makes you feel also? All my best wishes to you xx

[loopy-lou in reply to Jo883]

Hi Jo888

I had exactly the same-just handed a leaflet on methotrexate in the corridor by the nurse after seeing the consultant. No one actually discussed how it could help me. It was more just take it if you want to improve. I was concerned after reading about it. I have reduced the steroids slowly by 1mg a month but have been told to remain on this dose for the moment. I have found it difficult reducing the steroids, feeling odd and jittery quite a lot of the time - almost like having too much caffeine. I was advised to reduce slowly as I have been on steroids continually for 7 years. Good luck deciding what is best for you. Let us know how you get on.x

[Alexandria]

I have been on this med for about two years and have not experienced any real problems. My rheumatology department keeps a close eye on me and because you will have to have monthly blood tests they can spot any potential problems quickly. Good luck whatever your decision.

[Jo883 in reply to Alexandria]

Thank you Alexandria - it's always good to hear the positives - a lot of people say that the injections cause less side effects then the tablets so maybe will ask to try these first. Well wishes Jo

[nettie]

I was on prednisalone which worked for a while, then started to have bad flares in my fingers and feet .So painful and depressing.

I was then offered methotrexate, and like you was sceptical but from day one of taking it my symptoms eased and I am now stable and off steroids completely for the past 6 months. I am a positive for this medication. Its changed my life I am now able to play my golf and walk my dog pain free. One happy bunny! Hope this helps you,.

[Jo883 in reply to nettie]

Thank u for your reply Nettie

I'm glad to hear it's working for you I'm going to psych myself up and give it a go! I'm learning more from this site and others then from any Dr or consultant and thank goodness really! Well wishes x

[gwesler]

Had methotrexate for a short time for Lupus. Didn't really do anything. Do you have cancer?

[Jo883 in reply to gwesler]

Hi gwesler

No I don't have cancer - it's to treat Lupus!

[gwesler]

Yeah it didn't do anything for me. I'm pretty more or less symptom free if you don't count joint pain. But my shoulder has been completely destroyed and my ankle/heel is somehow damaged. I was in a wheelchair for a year back in '09.

A lot of pain killers (naprosyn, hydrocodone...enough to kill a horse)

[gwesler]

Sorry. I didn't realize this was a Lupus board. I just joined last night when I was all over the internet.

[Jo883 in reply to gwesler]

That's Ok, glad yr symptoms are under control that's a positive - I was more worried about being sick/nauseous, loosing more hair and feeling whacked out for a day or so per week and any other problems it might throw up - I've had 2 quite bad years and just starting to manage better - didn't feel ready to rock the apple cart, so to speak!! Well wishes x

[Purpletop]

You don't say why Methrotraxate was proposed in your case. It is a drug that is more effective for joint pain but doesn't make much difference for organ involvement, for example. Mycophenolate mofetil on the other hand is more of a general immunosuppressive, less effective in joint pain but useful for organ involvement and vasculitis. If your lupus manifests itself mainly through joint pain, then I can see why you're being guided towards MTX. However, if you're unsure about taking it, ask your doctor about mycophenolate - it has far less side effects. You can suggest trialing it for few months and see. Your doctor may then suggest that you're trialing the MTX first but remind him/her that you're uncomfortable with MTX but willing to try myco. Hopefully the message gets through at that point!

[Jo883 in reply to Purpletop]

Hi purpletop - the Rhuemy didn't really say why it was being given - just gave me a leaflet and told me to think about it. I would imagine because I can't lower my steroids without flaring. I do have joint pain in most of my joints which I'm keeping a lid on being on 15 mg of prednisolone. I guess it's just the chemo thing I find scary and also the potential side effects. Nothing was really explained I was given 1 leaflet on methotrexate and one on steroids and more or less told to research it and think about it - I think I will also have a chat with my GP and see what he thinks. I will speak to him about mycophenelate. I have a new GP as mines left and I'm not even sure how it will be received as the last time I went in he more or less said 'well if we are going to follow the route of connective tissue disease' as if he's not convinced! It's a continual battle! Thank you for yr reply

Sending well wishes Jo x

[gwesler]

As I understand it, Methotrexate is an anti-mitotic (kills cells in mitosis phase) in high doses used for cancer but with smaller doses it is an immunsuppressant. Wasn't aware of such side effect at light doses. Have you had any?

[Jo883 in reply to gwesler]

Thank u - not started it yet, just seeing how others have found it, as the thought scares me a bit. Seeing how others have coped and side effects etc so I'm forewarned and can prepare myself! X

[madmagz]

Hi I have been on Methotrexate for over a year and it has worked wonders for me, I take it along with Folic acid as I have a few problems with my liver so my liver needs help to process it but to me the two together have certainly been fantastic! I was in an awful state before taking it had been hospitalised for weeks and my poor children saw me in conditions that children shouldn't have to see a parent in. Since taking the methotrexate though I have improved so much I am feeling really quite well now my pain has decreased quite a lot and my skin has improved a lot. My fatigue is still noticeable but not nearly as bad as it was.

The only side effects that I suffered were right at the beginning i had a few mouth ulcers which soon disappeared with a slight increase in the folic acid. I do however avoid crowded public transport when it is school run time due to the risk of picking up illnesses. One advantage however is when I go to my G.P. or hospital appointments I am seen quickly as they don't want me in the waiting room risking picking up any "nasties". At my G.P.'s surgery I even have my own waiting area away from the waiting room and if I am unfortunate enough to end up in A&E I mention that I have SLE and the meds I am on and I get taken away from the main waiting area and often get seen quickly.

Good luck if you decide to try it I hope it works as well for you as it has for me

Madmagz x

[Jo883 in reply to madmagz]

Hi Madmagz

Thank you for taking the time to reply - All of the comments have really helped as not much explanation was given at my appointment and the idea of taking a chemo med freaked me out a little. Reading everyone's replies has helped put everything into perspective and thank goodness for everyone on here, because I'm not getting the help/knowledge from where you would most expect too!! I'm really glad you find it's helping you manage this dreadful illness - I understand how you feel regarding your family as I've had 2 bad years and just finding a balance - since January really, felt reluctant to rock the apple cart and scared of taking a 'Chemo' med. I have learnt a lot more - and now know what questions to ask my Dr and more importantly know that I need regular blood tests etc to make sure it's not effecting my liver/lungs and that also I need folic acid. I don't feel quite so alarmed and I understand that it could help me, but that if it doesn't help there are other options to try. I'm better prepared for it and forewarned is forearmed - I have little trust in Drs.....lol !!!

Thank you once again - well wishes

[john140]

I have been taking MTX for over 5 years, or should say struggling with MTX. On one hand it works pretty well in controlling my RA, on the other hand as I take the injection either on Friday or Saturday morning, I never know if I will be able to do anything on the weekend due to headaches tiredness and nausea. Sometimes it is fine other times terrible. I have tried every other DMARD and they have all been worse in one way or another, culminating in Ciclosporine which didn't work caused anxiety and hypertension and caused a flare-up. So I have come back to MTX even with its unpleasant side-effects. I dont take a large dose only 7.5mG but it certainly seems toxic. Some peopl seem to be able to handle MTX well though, my sister in law had no problems on a higher dose.