After 3 years of taking it, no more Methotrexate for me !!!!!

[petalnumber2]

Hi everyone,

Well I'd like just a penny for all the times I said, "I don't feel happy taking Methotrexate". Now, I have been taken off it under the guidance of my GP, the Clinical Nurse at rheumatology and my Optician !

Apart from my Vitamin D being low recently (I have started on Adcal-D3 and I feel much better). However, I've had some difficulties with my eyes too, a bit of double vision, blurred vision and some funny eye disturbances since the beginning of the year. I saw my Doc about it and he sent me for a pressure test and I had a complete eye test at the same time. New lenses needed, so ordered new glasses.

I picked up new glasses in April just before hubby and I went down with this awful chest virus which spread like wildfire amongst people I know. Armed with antibiotics, cough mixture etc, I left my MTX and Enbrel off to give my immune system a chance to put up a fight, as you do......

After 2weeks off meds I noticed that I could see better without my new glasses and my old ones were doing the job again !!

I've had 3 Enbrel injections since recovering, but no MTX as my Doc thinks it is responsible for my eye problems, (it is one of the possible side effects). The clinical nurse agrees that eyesight is paramount, but I could suffer more joint damage as a result of stopping it, anyway she is agreeable to leaving it off.

I have already noticed a difference in joint pain and swelling, particularly my toes, ankles and knees which have always been the worst areas for me, but there's no contest when it comes to eyes, I believe.

I've read a little bit on here recently about the concerns of taking MTX for the first time after reading all the info and being terrified to take it. I really do identify with that feeling of terror because it is a daunting prospect when you've just been diagnosed and it takes some time to settle down to accepting that you have this disease and the drugs are seriously strong. So my heart goes out to those people.

As for myself, I have taken MTX for 3 years this month and though I do have damaged ankles/toes and knees I'm pretty sure the initial damage was done before diagnosis and medication. I know MTX has done a good job of protecting me against further damage, which is important, I know. Now, Enbrel is really under my microscope, will it look after me on it's own ???? We shall see, given time.

Good wishes to all, especially those newly diagnosed and going through a minefield of emotions and decisions about medication. June xx

[cathie]

I'm sorry to read about your problems with mtx. However we should remember that for many people it has been a dependable and effective medicine. It's difficult for those starting off to understand the side effects. I hope you continue to do well on what you've been prescribed. I've had to come off mtx too because of liver problems, but it's all abit inconclusive and I know mtx has helped with both RA and oa

[petalnumber2 in reply to cathie]

Thanks Cathie,

I didn't mean to come across as totally against MTX which was why I said it has done a good job in protecting my joints from further damage, and I really do sympathise with those who are starting out on new meds and learning about the various side effects.

My memory isn't so good these days, but I will never forget those first very daunting and upsetting months after being diagnosed, so much to come to terms with.

At my last app with my clinical nurse last year, she said we will wean you off MTX and see how you get on with Enbrel alone. she added, after all most patients don't feel comfortable taking it, and want to come off it. I was surprised at her openness. So, I would be coming off it anyway, I've just had a very good reason to stop it abruptly, earlier.

I'm sorry to hear of your liver problems. All the best to you. June xx

[cathie in reply to petalnumber2]

I didn't intend to sound so sanctimonious -sorry! I'm just starting enbrel without mtx so can we compare notes? Tomorrow is week 2 and although I noticed a few little improvements earlier in the week, today was a shocker. I can't wait for injection tomorrow morning. I hope things improve for you.

[petalnumber2 in reply to cathie]

Hello Cathie,

Your comments did make me think about what I had written and I told myself off for not thinking through what I was saying and how it would come across to newly diagnosed people. That's not a bad thing at all.

Anyway, we are in the same boat with our meds aren't we.

I have been on Enbrel for a year this month. It is very successful for me so far.

I must put my thinking cap on now, I think it was about 6 weeks into my weekly injections that my morning stiffness began to ease off. I haven't had any stiffness at all for a long time now.

People kept telling me to be patient and that it takes 3-6 months to settle down on it, like you I look forward positively to my injection each week. It's very early days for you, so I would say "go with the flow and hopefully Enbrel will do just as well for you as it has for me. It's so unsettling chopping and changing meds.

I had a very thorough eye examination this morning and my eyes are back to much the same as they were this time last year, it's such a relief.

Take care Cathie, and if I can answer any other questions about Enbrel just ask away on private mail if you like.

P.S One important point is to press the top of the pen firmly against the skin before injecting. I had a few problems with the needle not releasing and I read a blog recently about people having some difficulty too, but this resolved the problem for me. June xx

[cathie in reply to petalnumber2]

Thanks, I'll take you up on the messages! My second Enbrel this morning, the top of the pen is stiff, but I had Paddy to help me - he likes following directions precisely. I'm definitely feeling better than I did yesterday, less pains. But its hard to tell whether something is making a difference isn't it.

I'm really glad to hear that your eyes are back to normal, long may that last. I had a worrying moment on one of the DMARDS and ended up having good checks on my eyes.

Keep well!

CX

[petalnumber2 in reply to cathie]

The plunger is a bit stiff on the Enbrel pens, a bit of a nuisance really, it took me a while to get used to them.

Sounds like you've had your fair share of difficulties with side effects, Kathie.

I have tenderness everywhere today, hands, knees and feet mainly, but it's to be expected I think, without MTX.

Hope you're having a good day today June xx

[cathie in reply to petalnumber2]

It does help to hear about your experience, thank you! Last Tuesday I was very tired, and I am again today. But another session with the physio working gently on my knees and they feel so much better afterwards. At least the sun is shining and I feel ready to go after about an hours sleep just now!

[JAC22]

Hi June,

I was diagnosed with RA 3 yrs. ago --- have been on MTX for most of that time. I keep quite well on the whole.

My RA came with dry eyes, for which i use eye drops & gel tears plus a warm flannel every day.

I was interested to read your blog -- i have recently had to have another eye test & i need new lenses after just 8 months from the last spec's . It seems i get blurred vision then i realize i need new lenses -- this has been happening for about the past 3 yrs. !! ?? I am starting to wonder if MTX has anything to do with this ??

My next app. at the RA Clinic is early June -- think i might have a word with a nurse before then.

Is there a site i can check out the side effects of MTX ??

Thanks. Hope you are keeping well now. Take care.

Jane .

P.S I am 61yrs.old. Retired last year due to fatigue doing a kitchen Assistant job -- just 2 hrs. a day. !! Still feel tired after a short walk -- not as much energy as i thought i would have after retirement !!

[petalnumber2]

Hello Jane,

I think it so important to write about our own personal experiences, because that is how we help each other understand what is going on in our bodies and how the treatments work for us.

Actually, I too had blurred vision for a long time which was steadily getting worse, I noticed it mostly when I was driving which began to really concern me. Then eye disturbances started in January which affected my peripheral vision, that's when I went to my GP.

I have had to leave my meds off a couple of times in the past for minor ailments, and only for a week. This time I had bad virus and left my meds off for 3 weeks which gave me a chance to notice the change in my sight. Otherwise I wouldn't have known.

I think you should mention your concerns at your next appointment in June, and in the meantime you could call the NRAS helpline on: 0800 2987650, I've used the helpline when I had concerns about starting ANTI-tnf medication. I found them very helpful and they have lots of info at their fingertips and can also direct you to the most useful site to find out about the side effects of MTX.

My MTX has been provided in the original box for the past few months which contained the leaflet about the drug, so that is where I looked first and then my GP confirmed that blurred vision is a side effect. Is your MTX already counted out for you and put into a bottle with no leaflet ?

I wish you well in your fact finding journey and I would love to know how you get on, if you prefer you could send me a private message on this site.

P.S I am 67 in June, we're not youngsters are we, but we're not old either and we still have some quality life left to live, so it's important to get things right for ourselves. I have always had this vision of being in my 80s and still pottering in my garden, but I hardly manage it now. Yes, I run out of steam too and my legs will only let me walk short distances. It's disappointing isn't it. All the best Jane. June xx

[Hidden]

Hi petalnumber2,

so glad that you are feeling much better now and that your eyesight appears to have improved. It seems that methotrexate was not the best choice of medication for you.

Just to reiterate what Cathie has said, methotrexate does work very well for a lot of people.

The treatment of rheumatoid arthritis is not simple, if only it were. it would be lovely if there was one medication that could treat everybody. Hope everything carries on well for you,

Regards

Beverley (NRAS Helpline)

[petalnumber2 in reply to Hidden]

Hello Beverly,

I have spent a few months of worry about my worsening eyesight (driving my car particularly) and it was by shear chance that I discovered that blurred vision is a side effect of Methotrexate and it was the cause of my own problems.

I was so relieved to have some answers that went off at a tangent, wanting to share my news with everyone, not thinking about others and how it might worry them. "Very short sighted of me". excuse the pun !!.

I'll always think carefully about what I write in future. Regards, June

[Hidden]

Hi petalnumber2,

Well just glad that your eye problems have been sorted out. I think that losing ones eyesight is something that is extremely worrying for everybody. Bad enough on its own but combined with all the other things that you may have to face. Hope everything works out well for you and that they get you sorted,

Regards

Beverley (NRAS Helpline)