METHOTREXATE INJECTIONS

[JGBH]

Hello everyone...

I have had a total knee replacement operation on 11 December last year and am recovering now. naturally I had to stop injecting Enbrel (Etanercept) 2 weeks before the oeration and wait 2 weeks post operation to start the injections again. My level of inflammation went sky high - it did not help that on top of major surgery, hence shock to the body, my other knee is extremely painful as it too needs to be replaced, so is very swollen, hence inflammation. When I saw my rheumatologist on 16 January she recommended I started injecting with methotrexate once a week (have not started yet) because of high inflammation. I used to take a Methorexate tablet once a week when I first started to inject Enbrel but discontinued the tablets after a while because it did not suit me and really upset my stomack (have problems with reflux,etc...). The Enbrel worked well without the methotrexate tablet, so am wondering whether I really need to add the Methotrexate injection now. Am rather reluctant... Had many blood tests done + X-rays of chest to ensure I can have methotrexate again. Since I have not had any results from hospital I must assume it's all clear for me to have methotrexate in injection form. It has been left with me to phone the rheumatology department to go in and have a first methotrexate injection (will self inject thereafter).

I am just wondering whether I should let the inflammation "settle" post knee operation, and perhaps it is not really necessary to have these injections... Although I am aware a high level of inflammation is not really desirable and can be dangerous. So I have a dilemma regarding methotrexate: to inject or not to inject?... that is the question!

I am not very keen to have methotrexate again... therefore I would really appreciate any feef back from anyone who has or had these injections, telling me whether or not they benefited from them and/or what problems they caused...

Thank you if you are able to give me any feed back or advice.

[JayneN]

Hi ... I started on the tablets but after 5 weeks had to come off them because of too many side effects . Stomach cramps n upset stomach were real bad as I have Colitis also . I started on the injections 12 weeks ago and no stomach upsets whatsoever. I think it's an individual thing on how your body reacts . Each of us are different. Some it's amazing for and some it isn't . But good luck and hope you get better soon .

[JGBH in reply to JayneN]

JayneN - thanks for replying. Indeed I ha read the methotrexate injections did not upset the stomach because it bypasses it. However wondered if there were any other side effects to be aware of. From your reply I assume you do not have any side effects. Hope it carries on being helpful to you.

[JayneN in reply to JGBH]

I do have side effects from nausea, hair thinning and mouth ulcers but I'd sooner have these than pain from the RA. Each individual is different . I'm going for a full MRI on Thursday so see if I qualify for biologics as they won't up my MTX from 10 mg due to past illness . U can only try it and see how it works for you . It could be just what you need x

[JGBH in reply to JayneN]

Thanks again for letting me know about side effects while using methotrexate injections. I do have nausea at times so do not wish to have this more often (had that in the past with tablets). Also I have experienced hair thinning over the past 3 years, yet I used to have beautiful shinny very thick long hair... had I not had so much hair to start with I believe I would be boldish by now.... so not keen to let the hair thinning continue.

Of course rherumatologists want to help patients feel better and will prescribe drugs... without really understanding the devastating effects such drugs have on patients. So am not sure I will have the injections now... Just hoping the biologic, the use of which is cumulative, will work better again as it did before. Also time is needed for the healing of major operation to take place so perhaps inflammation with lessen in time soon.

I do hope you will be offered biologics, indeed Enbrel has given me my life back.just hitting this problem since I had the operation which is a shock to the body.

Good luck. Please let me knoe how you get on with MRI. x

[JayneN in reply to JGBH]

Thankyou so much and fingers crossed your well soon x

[JGBH in reply to JayneN]

Much thinking to do before I make a decision. thanks and take care.x

[Kings1 in reply to JGBH]

Hi. I have been on injections 20 mg for a few months now and have had no problems at all. Started off going to hospital once a week for them but was injecting myself. It took time for paperwork to be sorted n order to get prescription to inject at home. So far so good and bloods are done regular too making sure all is ok. I hope all goes well for you. Take care xx

[JGBH in reply to Kings1]

Thank you for your reply. Methotrexate seems to upset many people, and be fine for others.

In my case when I used to have the tablet form and had to stop taking them I felt really unwell, like my body was being poisoned.... so can imagine it will be the same feeling with the injection since it is the same drug but in a different form saving problems with the stomach, Glad it does help you,

Take good care too. x

[helixhelix]

It is said that one of the reasons that you take methotrexate alongside a biologic is to stop your body producing antibodies to the biologic which would stop it working. And that that's particularly important to do if you stop and restart the biologic as your body could reject them second time round... I don't know how true this is as I don't take biologics, but it's just what I've read.

But I am on Methotrexate injections and they've caused me no problems, and that was such as positive change from the tablets.

[JGBH in reply to helixhelix]

Hi helishelix - thank you for your reply. it is very lucky methotrexate does not cause any side effects for you and pleased it is helpful to you. So you do not have any side effects at all? How long have you been having injections for?

However methotrexate has caused me unpleasant side effects before (in tablet form) so am still very reluctant to put myself in that situation again... So difficult to make the "right" decision...

Can you remember where you have read the information about methotrexate?

Best wishes.

[helixhelix in reply to JGBH]

I've been on MTX for 7 years, and the last 5 by injection. When I was on tablets I developed awful mouth ulcers.

Do remember that you can stop MTX just as easily as you can start it....

Here's a link to one of the things I read.

ncbi.nlm.nih.gov/pubmed/242...

[JGBH in reply to helixhelix]

Thank you for link.

[medway-lady]

I had an operation in October and was advised to stay on the meds Lefludamide as the risk of not taking out did not outweigh the difference in recovery time. I carried on no problem so I'd just do as the RA doctor said and hopefully the flare will go down quickly.

[JGBH in reply to medway-lady]

Thanks for reply. However Lefludamide is not a biologic drug and works differently to Enbrel. I was on Lefludamine many years ago and had to stop using it as I had seroius side effects.

I don't trust rheunmatologists blindly simply because we are all different and have different reaction to drugs and rheumatologists cannot know how a specific drug is going to affect individual patients. it is not easy and is a question of trial and error.

Having had methotrexate in tablet form in the past and it did cause side effects I had to stop taking it along with my biologic injection. The fact the biologic worked very well without taking methotrexate was a proof it is not always necessary. The less drug we take the better for the body. It's only because of the increased inflammation the rheumatologist thought methotrexate injections might help... but methotrexate is not a "nice" drug so am natutally reluctant.

Glad Lefludamide works well for you. best wishes.

[medway-lady in reply to JGBH]

I know LEF is not biologic nor is MTX isn't that the point ? no medications are nice. I used to take MTX and was taken off it too, but we're not medically qualified and I'm unsure if you know that the MTX is not needed what your asking.

[JGBH in reply to medway-lady]

It was advised to take methotrexate while injecting with Enbrel. However, in the PIL (patient information leaflet) it stated not everyone could cope with it and should then stop taking it. This was the case for me and many other people i understand.

The very fact the biologic injection has worked very well for me for over 15 years without the methotrexate must indicate that methotrexate is not necessary for the drug to work well for everyone. Having to stop the biologic for a few week has made the RA flare up badly on top of having a major operation... so the inflammation level has increased. I suppose the rheumatologist wanted the inflammation to reduce when she suggested having the methotrexate injections. Having had such bad reactions to that drug i do not feel I want to risk that again.

My interest was in investigating people's reactions (side effects or not) to Methorexate, and finding out what were the side effects they experience. having read a few replies I will now do a little more research and decide what to do, probably not having injections as it is more likely I will have the same nasty side effects again I had while having the tablet. After all it's the same drug but in a different form.

[nomoreheels]

Pleased to hear you're recovering from your TKN. I've been on MTX 8 years, injecting 7 & have to say it's been my most effective DMARD in 9 years of being diagnosed seropositive. No side effects of note, just less appetite & a little more tired the day after, enough I try not to arrange a meal out or a long journey. I'm prescribed folic acid every day except MTX day although I have taken it just twice a week years ago.

If you had stomach problems on tablets it's less likely with injections because of course with injecting it goes straight into your blood stream & unlike tablets which have to go through the digestive system.

Personally, I'd be phoning up & getting your appointment to show you how to inject, to my mind it's going to help you recover more quickly as you still have inflammation. If you think about it the MTX will help it settle, more so than not taking anything, maybe you're trying to talk yourself out of it, do you think? Either way if or when you do choose to go ahead I hope you find as most do that injections are much better than tablets.

[JGBH in reply to nomoreheels]

Hello nomorheels....

Yes am recovering well from total knee replacement op... but it's a slow recovery with much pain and it has taken its toll on my failing energy levels... Am only just able to sleep a few hours in the night , and it's now 2 months post op.

Thanks for replying to my Methotrexate query. Obviously it is working well for you and am pleased it does help you. Do you inject a biologic too?

I do understand that injections bypass the stomach but my other symptoms were incredible nausea, feeling i could not "digest" food properly (probably related to liver having problem dealing with methotrexate) and therefore can imagine methotrexate injections will have the same side effects as the tablet since it is the same drug but in a different form. It was cheer misery and I am rather reluctant to have the same problems again. So will probably decide against methotrexate injections in the end.

I feel it is quite normal to have an increased level of inflammation post a major operation, plus my "good" knee is swollen up and painful, waiting to be replaced too... and of course the RA has been flaring up, so perhaps the inflammation will diminish as I get better... and then after recovery of second knee replacement operation... Such a difficult situation. I do think the inflammation is getting less, so keeping my fingers crossed.

Hope you are keeping as well as possible.

[nomoreheels in reply to JGBH]

No, I'm not on biologics, though I have failed 3 DMARDs MTX being the only one I can tolerate or hasn't failed me. I understand why you have a fear of nausea, it was one of the side effects (& vomiting) that came with sulfasalazine, even the antiemetic prescribed by a GP didn't help. I also had liver issues with MTX at 20mg but a slight reduction in dose solved that, about 3 years ago I think, so as long as I don't go above 17.5mg inj I'm fine (I do also take NSAIDs which of course can affect the liver so there's always those to consider).

Nobody can make you take a drug, or if you decide to give it another try (maybe at a lower dose than previously) you can always stop it. I don't know if you took max folic acid but I do, maybe has some bearing on my tolerance, don't know but I'm thankful either way because without MTX I'd be in deep poop!

[Hidden]

Don't want to put damper on but i find no difference in nausea with injections of mtx, generally up to 3 days, sorry. I read somewhere to do with nausea receptor in brain rather than anything gastric but who knows you may be one of the ones it works for, can but try.

[JGBH in reply to Hidden]

Hi Kerena,

Don't worry, you are not putting the damper on at all. I somehow suspect that if one has nausea with methotrexate tablets then one wil have nausea with the injections. After all it is the same drug in a different form that is easier on the stomach but the nausea and other symtoms I felt while taking methotrexate tablets are bound to be the same with the injections. It did not suit me then and feel it would not suit me now.... It is why I am so ery reluctant to have this drug circulating in my body again.. Have enough problems to cope with at the moment.

However it is good to hear from different people's experiences and I am grateful to all who have taken the time to reply so far. So it looks more and more like I am not going to go ahead with it.. some more thinking and some research to do before I make my mind up one way or another.

Incidentally, do you have the biologic injection too, and in what way do you find methotrexate beneficial?

[Hidden]

No I don't jgbh, but hope it works well for you. I'm dx 6 months but had it about a year. Had mtx reduced from 20 to 12.5 due to side effects, still hate the stuff. However just stopped additional Hydroxychloroquine due to 7 days nausea and inability to sleep, so 3 days better than that! Suggested sulfasalazine or leflunomide add in at next appt so really looking forward to that lol. Know i'm not on enough as joints flaring. Real breakthrough in this will be someone finding drug that works and doesn't make you sick 😄

[JGBH in reply to Hidden]

I had sulphasalazine plus something else in combination many years ago (can't remember the name because I have had so many drugs to try before i was offered a biologic) and that made me very sick.... not easy to tolerate, but I was very ill and frail then, staying in hospital for a year! It might work for you. It's like any drug.. you have to try it and see how your body copes with it... or not. I could not tolerate Leflunomide either... Oh Joy! Sorry if I can't cheer you up. Still it will probably work well for you, and certainly hope so.

Indeed a breakthrough would be wonderful... to STOP the dreadful disease completely... Let's dream on meanwhile.

[Hidden]

Oh dear, it's all suck it and see (tempted to put an 'f' there but bit rude for site!) i do wonder tho why different drugs affect us all differently. I went to rheumatology event where they said pharmas don't let on which cytokines their drugs target due to patents. Does this mean we ve all got different active ones: it's obviously same disease effects tho'? I have weeks where i'm interested in RD but others where i wish I'd never heard of the damn thing 😊

[JGBH in reply to Hidden]

I totally understand how you feel, many if not most of us do...

RA is a complex autoimmune disease still not totally understood. However many steps have been made in research and understanding of the disease. The medics don't seem to understand that we are all individuals and that we all react differently to different drugs. It works fairly well for some and not at all for others... It can't be easy for the medics and scientists doing research either... what a complex task, but they are making progress. one day they will understand what causes our bodies to break down and why our own body attacks our organs, etc... probably not in my time (am 71) but it would be good to save younger people's lives... HOPE.

Of course some days you will feel interested in doing research to understand that disease but often it becomes too much... we need a break from the illness we live with. So when feeling better, let's forget it.

[HevJ]

Hi

I couldn’t tolerate anything over 15mg so they swapped me to injections. No sickness whatsoever! However over 2017 it stopped working as well and they tried me on 2 other combos which I had bad reactions too. Oct I went down with a tooth infection so had to come off it as well as liver enzymes rocketing due to reaction to leflunomide. I then had a foot op in Nov. By Dec I was doubled over in pain. Every joint had seized. I couldn’t stand it sit without someone helping me. I was assessed for Benepali but in the meantime told to restart methotrexate. Over the next 3 weeks I feel it took the edge off and gave me some more mobility while I waited to start the Benepali. Once starting that in combo with MTX within 2 weeks I felt like a totally different person!

For me the MTX helped in the interim but has obviously lost the magical effect on its own.

[JGBH in reply to HevJ]

Glad you are feeling better at long last, and thanks for your feedback. We all have difficult decisions to make...