Methotrexate side effects

Katherine

I was originally referred to rheumy after my back pain was still chronic after 3 years and a history of psoriasis. I was put on lodine which really helped my back pain, whilst I was going for all my scans etc.

Even though they showed no inflammation the rheumy thought I would benefit from methotrexate. After my first blood test my Dr advised me to stop as I was showing signs of anemia.Whilst waiting to see my rheumy I developed costochondritis so he stopped the lodine which he thought was the cause of the anemia restarted my methotrexate with a 5 week course of steroids.

I have now finished my steroids and now only on methotrexate these last 2 weeks my pain in my back is once again unbearable and I feel like I have a constant migraine. I contact the gp they said to contact my consultant their phone lines are closed due to no staff so I send emails but its normal a week later and they say give it time. I haven't seen anyone since starting methotrexate as bloods are done by whatever nurse is free and they say speak to rheumy.

Will this every get better? Right now I want to just stop as I would rather just have chronic pain rather than feeling rubbish a not being up to doing anything, but sleep most of the day.

MaryL44

Hi @Katherine

So sorry to hear about your experience with your medication. I've just started on methotrexate so I do get what you're saying and it's a shame that you can't get through to the rheumatology team easily.

Can I suggest that you contact our Helpline team who may be able to give you some advice? Look under Our Community on the right of the screen and choose Chat to our Helpline Team - you can message or call them.

Mary (Moderator)

frogmorton

Oh gosh @Katherine I am so sorry you are struggling so much.

Are you taking any folic acid at all? I only ask as a lot of us take this on days other that MTX day to mitigate some of the side effects of the drug.

Have you got an appt due with a rheumatologist? If not I think you really ought to request one ringing their secretary is one way of getting one.

I totally understand you wanting to come off your MTX given how bad you feel but seeing the rheumatologist first would be the best idea.

Sending you some supportive ((()))

Toni x

Katherine

Yes I've been on increased folic acid for 2 weeks. Thier phone lines are permanently closed so all I can do is wait for them to answer emails.

frogmorton

That's so unfair. Make sure those emails are clear just how you can't cope on it.

I'm sure you're doing that anyway of course.

Let us know how you get on.

Toni x

Katherine

Just tried to get a gp appointment 3 week waiting. I've I not heard anything soon my next day I can get out of bed will be a trip to A & E to be a time waster.

frogmorton

Any progress yet @Katherine ?

Toni x

Katherine

@frogmorton sort of did manage to speak to the nurse end of last week, she wasn't sure what to do so was going to talk to my consultant to see if I could have a follow-up with a different consultant so now just have to wait for an appointment.

frogmorton

Ok well good luck and I hope it's sooner rather than later ((()))

Toni x

Mya

I totally understand where you’re coming from. Due to an op I had to stop my treatment which was Lefludomide for 2 weeks but for various reasons had no medication for my rheumatoid for 5 almost 6 months and now feel worse and am in more pain than I have been for about 30 years. I have been put on methotrexate, which was effective for about 15 years but due to serious complications had to come off and was then put on Lefludomide which was great till told to stop for a short spell due to op. Having been put back on Methotrexate I find it certainly doesn’t agree with me and like you am finding it extremely difficult to get help. It seems so unfair when you can’t get anyone to seriously appreciate how this totally ruins your ability to enjoy life due to the pain and side effects. My open heart surgery went so well but this change in medication has removed any pleasure in its success and has left me feeling worse off.

frogmorton

Morning @Mya

It really is very wrong to be ignored like this and unable to get help. Is it worth talking to PALs? I know some people have had success with medical issues via them.

Tricky though when you don't want to 'cause trouble' or be thought of as trouble by your healthcare team 😕

Katherine

@Mya hope you get answers soon sending love.

I did try PALs after my first urgent care nurse. The laughable thing was agai they only had answer machine and email. Got an email back the day of my consult after being in hospital, you can imagine the strongly worded reply I sent.

Mya

I appreciate the replies. It helps to feel someone has heard and totally gets it. I need to join in the chats more frequent so that I don’t feel so isolated and ignored. Thanks

Mya

It’s taken too long for me to add anything but it was great to hear from others and so reassuring.I don’t know if I should start a new post or continue on this one. Unfortunately, my story doesn’t really improve any. We are now three months further on and I feel worse. Due to having to come off Lefludomide for my open heart surgery it is taken till now for my specialist to increase the dose of Methotrexate or perhaps trying one of the new drugs which I should inject. Meantime, my pain is worse and osteoarthritis is now severe in some joints on top of that I’m suffering from Balance issues perhaps related to rheumatoid, who knows. Another long wait to see a specialist.. I so wish, as I am sure you all do, that the NHS was up to looking after us as they once did. The personnel involved at excellent it’s more the political situation that finds us and so many others waiting and deteriorating for so long. Of course I’m not alone that are so many others suffering and waiting and waiting while the pain worsens.