I have both APS and SLE (plus plethora of other AIs). My Rhuemy wants me to take Methotrexate (MX),

[KatieA]

which I believe is more of a Rhuematoid Arthristis drug, with a bad reputation for side-effects. Has anyone with SLE been prescribed MX and if so, what is your opinion of the drug? K.

[pipilonglegs1]

Hi I have sle, and been on methotrexate for about four years. I feel like I am getting a cold for about three days after taking it, then I am fine . I also find its best to take it at lunchtime, for some reason it makes me sick if taken any later. It also thins my hair with the odd bald patch .

[Hidden]

I'm about to add another negative, but please remember we all react differently. I took metho for a couple of years. Had a lot of nausea at first, but found the drug to be helping after about 12 weeks. I noticed I had developed a cough which was worse immediately after taking my dose. Annoyingly, nobody, (Drs ), was interested when I kept reporting it. I was told much later by my phlebotomist, that I should have been given a lung function test. I've since had one and the metho has damaged my lungs. I also have high liver blood tests, which have still not settled, despite stopping metho 18 mths ago. Am actually coughing non stop as I type this. I'm sure I've probably put you off, and that was not my intention. Just be self aware of any new problems if you decide to take this. You will have regular bloods to monitor your liver, and usually, withdrawal of the drug, reverses any problems. I think I was left too long, regarding my lungs, but my liver probs are still being investigated, so can't say for defo it was metho, at this stage. You are right, a lot of people with RA, take this too. Hope it's ok for you.

[Purpletop in reply to Hidden]

Goodness me, that's awful, we can't win, can we - if we don't take meds, lupus will get us, if we do take them, the side effects will. Not wishing to hijack the post, what's being done about your lungs now?

[Hidden in reply to Purpletop]

Hi ptop, not much now, I have inhalers which seem to make it worse. I think NHS are worried I may complain about this,(which I wouldn't ,) no one seems to want to admit fault, especially as it took a phlebotomist to tell me. Phoned blf and they say metho does do this. Funny because when X-ray, ct scans were done, I was told that lupus and metho have damaged my lungs. Rheumy read report from notes on screen while I was there. Had to see thoracic, and they say take pumps and come back if worse. , Damage was caused by smoking in the past. Whilst I accept some of the blame, you don't have Drs panicking making me have all these tests, saying bronchiectasis, lung cysts, etc...were possible problems. Blf say they are using smoking to hide their shame.

[Lupylass]

I've been on it for 5 months and it's completely cleared my lupus and vasculitis symptoms

However it can have side effects which your rheumatologist has to weigh up against the requirement to control the disease and potential damage being caused by the disease.

I get blood tests every 2 weeks as my bloods haven't stabilised on the methotrexate, but I know my GP is keeping a close eye on me and is in regular contact with rheumatology regarding my bloods. Minor abnormalities are ok and are reversible. With me, some abnormalities (eg low lymphocytes) are just as likely to be caused by the SLE itself, rather than the methotrexate.

You should receive counselling prior to starting this drug, and then ultimately given the choice of whether to start it or offered an alternative

Unfortunately many of the Disease Modifying Anti-Rheumatic Drugs all have potential nasty side effects. But in my opinion if you have a rheumatologist that you trust, who feels you need that level of treatment, you might need to explore one of these therapies with them.

Good luck. X

[misty14]

Hi KatieA

Methotrexate is a good drug for joint and muscle involvement in SLE. You take it once a week and on the other days of the week you take Folic Acod that helps prevent some of the potential side effects but as 6161 has said we all respond and react differently to drugs! I also totally agree that if you have a good medical team Rheumy and GP working together then it would be a good drug to try. Hope I've helped what is a very tough decision to make!. X

[farmerfester in reply to misty14]

And remember the blood tests

[bam1993]

Hi KatieA, I am sorry about this, but I have to add my '2penth', as well, but forewarned is forearmed !!! And as 6161 points out, we do all react differently BUT I too have liver damage and KNOW that it is due to the Metho..... I started on a low dose 7.5 weekly (I think) in Feb 2013, and increased as suggested by my Rhuemy to 17.5mg - having regular bloods taken exactly as told to do, I was feeling better, and had managed to wean myself of the Pred (I had stopped taking that by the August), still had some aches and pains but was coping with ibruprohen and paracetomal-had a Rhuemy appt in the October and was told to lower the Metho to 12mg as I had high liver enzymes - the Lupus started coming up again-went back in the November for a steroid 'shot' and had a blood test whilst there, got a phone call next day and was told 'stop taking the Metho immediately!!! Now have to see a liver specialist in April - and am back to sq 1- on Pred and Quinorix!!! It has made me so wary of the 'toxic meds', my GP sent me for a scan and that was showing 'fatty liver-possible cirrhosis' I had a Rheumy appt at end of Jan and had bloods taken-Rheumy has now written saying that he thinks my liver has returned to normal-as bloods were okay-and he is willing to start me on Aza or Cellcept now if I wish, or I can wait until after I have seen the Liver dept BUT, as I had had every blood test that he had suggested, I just wonder why it was left to get so bad (I will add here that I am Tee total, and do not have a high fat content diet) I KNOW it was Metho that has done this!! Saying that, it this not the case for everyone, and many people are on it- successfully-it just maybe is NOT the drug for me or 6161!! It may well work ok for you-but DO make sure you have every blood test and check the results yourself if you can! All the best Juliex

[Hidden]

Hi KatieA,

I have been taking MTX for the past 6 months to treat an auto immune connective tissue disorder which may be Lupus ( my bloods are equivocal! ) I have had no side effects at all. I am now on the maximum dose of 25mg which I take by injection, the beneficial effects of the MTX were wearing off by the end of the week and the injectable MTX has a better bioavailability.

As regards blood tests, I have a MTX booklet which has space to write in blood results. The receptionists at my GP surgery look up my results and write them in for me, that way I can monitor them too ( am a bit of a control freak ).

Although MTX is the gold standard treatment for RA it is also used for other auto immune diseases such as vasculitis. The unfortunate thing about all these auto immune drugs is that they can take up to 12 weeks, on the correct dose, to make a difference.

Unfortunately the only way to see if these types of meds will make a difference or cause you side effects is to try them, I realise that this is probably not much help!

Best wishes

Keyes

[tmh66 in reply to Hidden]

It has been helpful thanks Keyes. Im off to see the rhumy nurse on the 29 to have my consultation about mtx. I will ask for a booklet so I can keep my results as you have said. Im a tad scared though now to start these drugs after reading all of the above. I work 4 full days, just managed to drop a day due to being so tired etc and am worried how I'll cope and what to do if I don't?

[KatieA]

Thanks all for your input.

Unfortunately, a) I don't have a good relationship with my Rhuemy and GP; and

b) I already have abnormal LFTs. My rhuemy wants me to start on a 15mg dose, but this feels too high?

I was on hydroxychloroquine for 2 years, but didn't feel any benefit, and had a facial skin rash for 18mths. 2 GPs dx the rash as shingles, but the consultant says thats nonsense...

But as soon as I stopped taking hydroxy the rash cleared up, so there was definitely a connection.

Currently suffering a reaction to steroid injection, 2 vision losses and a spontaneous black eye (bruising). I just don't know what to do; my body seems to react to every drug badly.

[Hidden]

Hi katieA, you sound like you need a big hug. What an awful dilemma. You have answered your own question in the end. The reactions you are having so far, are not the norm, I hope not anyway. Which tells us that we all react differently. Can you do anything to change your Drs ? Lupus is bad enough to cope with, let alone a non productive medical team. Just make the right decision for you, there are no guarantees with any of this, but I really hope you get some relief, and soon.

[madmagz]

Hi, I have had SLE for nearly twenty years but have only taken methotrexate for just over a year and to me it has been a wonder drug! The difference in my health since I have been taking it along with Folic Acid has been amazing, before taking it I was regularly hospitalised and my poor children saw me in conditions that no children should have to see their parent in but I take the Meth one day a week and the Folic acid on two others. I have hair coming back - I have been bald for almost four years, my skin is relatively clear and the fatigue is there but manageable. My pain I cope with but can live a full and active life compared with what I had previously. I do however avoid public transport when it is peak times or packed with school children as they are often carriers of all sorts of nasties and with taking Methotrexate you immune system will be suppressed even more than it is naturally, also when I go to my G.P.'s I have a little waiting area all of my own I am not allowed in the main waiting area so that I don't risk picking up any nasties that other people in there might be carrying. If by any chance I am unfortunate enough to get taken to A&E I tell the staff there what I have wrong with me and the meds I am on and often get moved away from others and seen quickly so to cut down the risk of picking anything up. Which is a bonus a waiting time can be reduced quite considerably.

I know people hear that this is a cancer drug and it scares them but quite honestly it is taken in pretty small doses when used as an immune suppressant for us lupies compared to what it is taken in by others. It really has been fantastic for me I did have a few mouth ulcers to start with but that just meant that the folic acid needed to be increased and since it was I have felt fantastic and would certainly recommend that you give it a go - nothing ventured nothing gained and I have even struck up quite a friendship with the lady who takes my blood regularly to monitor how I am doing - we are on first name terms now.

Good luck if you decide to give it a go, I hope it works as well for you as it has done for me. I look forward to seeing positive updates

Madmagz x

[crazyasthedayislong]

I thought i was the only one who got more than her share of ai diseases. I'm literally eaten up with them.