One week till my Rheumy appt. scans and biologic nurse... following a Methotrexate failure...

[Brushwork]

Not sure what the plan is beyond that but another biologic seems to be on the cards.

RA is being a difficult lately and I am living on Naproxen, which does take things down a notch.

I have had a break from Methotrexate for 4 weeks now, I ran out of lower dose and was just not able to tolerate the 20ml (metoject). What I have discovered is that Mtx seriously affects my mental health over time, it seems to gradually build up as the drug builds up in my system. It was like a dark cloud, and I was honestly hoping and wishing for death but didn't go as far as wanting to kill myself (with one momentary exception). I was in a state of functioning rather than engaging with life. Now, after 4 weeks, and actually it too has been gradual, I feel normal and have come to realise that I prefer the pain to the mental darkness, not that the Mtx was dealing with the pain and inflammation at the 15ml that I was physically able to tolerate, which of course was the reason for the increase.

Please do not think this reaction is normal or common, I am quite sure it is not. It is just me. Mtx is renowned as a wonder drug for many and is well tolerated too.

I am not looking forward to the appointment. DMARD's are off the table and 2 biologics have already joined them.

I lost 50% of my hair on Benepali and had a nasty allergic reaction to boot.

Stay safe and go gently through the days....

[Buckybri]

Mtx don’t seem to work for me either I hate the drug. Every Monday when I take it I get so depressed, I remember when I took the pill form it made me so ill it ruined me but I thought if I want to walk I have to take it , and now when I go to inject it I can smell it it’s horrible and the day after I’m so down but the pen is better than the pils . But thank god the biological meds worked for me . Good luck

[Marionfromhappydays]

The way I look at it is they have developed and keep on developing biologics because they know a particular one won't be the "fit" for everyone, you just haven't tried the one for you yet but hopefully it's soon 🤞

It's tiring having to try new ones and live with the pain, alot of it is the administration time to get these drugs but I'm just thankful we don't have an American style health service as I would never be able to afford them !

Glad you are feeling more like you, it's good you can define its the methotrexate that has this affect. Like you said it works for so many but not everyone.

The psychological affect of RA is not to be underestimated so coupled with side effects of medications compounding this you've got to be proud of yourself for coming through and being able to move on the face the next. You are made of strong stuff.

I hope your appointment brings a new plan of action x

Good luck for next week👍

[Brushwork in reply to Marionfromhappydays]

Thank you. I think I’ve been through enough life drama and trauma to recognise depression. I’ve been to the depths of it. But I refuse to allow myself to return there, it’s not a nice place. So I work at maintaining a balance. I guess that’s why I can pin it down to Mtx.

You’re right, there’s plenty more to try and about the admin process - it’s ridiculously long winded, but like you, I’m grateful for it.

[oldtimer]

There are a large number of different biological treatments now. The only problem is finding the right one for you! Have you looked at the treatments pages on the NRAS site so that you are prepared for a discussion of the options? I hope that you have a satisfactory consultation next week.

[Brushwork in reply to oldtimer]

Thanks.Yes, I read as much as I can find and write notes for myself. I’m fairly well informed I think, but will keep searching.

[medway-lady]

I take Benapali and its been slow but it never affected my hair although MTX did. Taking it was like being set alight inside so these things affect everyone differently and its a lottery of Hobson's choice. I don't know what the solution is but hope you find some respite very soon.

[charisma]

Good to know how things are going with you, Brushwork.

MTX failed me after several months during which we reached temporary drug induced remission. It also gave me depression.

Wishing good discussions and discussions for the appropriate next step. 💐

[Brushwork in reply to charisma]

At least I am not alone with the depression from Mtx! I don't think it is a common side effect though.Thank you for your good wishes

[Hidden]

I know how you feel Brushwork MTX /Sulfa & Lefluomide all left me feeling awful and depressed and rebooted after 2 weeks off Benepali. Hoping this one works for me and no hair loss as loss of hair happened on the other 3 for me. Its a real rollercoaster for some of us to find the drug that works and works well.I had 12 weeks of no RA drugs just co codamol and pred but like you prefer pain to depression.

Take care we will get there in the end x

[Brushwork in reply to Hidden]

It is a rollercoaster, you're quite right.Look after yourself and go gently

[springcross]

You've really been going through the mill Brushwork and I really feel for you - RA is a very cruel condition and seems to know no bounds. I hope you get the relief you need soon. All the best to you. xx

[Brushwork in reply to springcross]

Thank you

[Neonkittie17]

Oh I’m sorry to hear of your troubles and hope a new med will work well for you. I hope your hair will settle too when your RA is under control on an effective med with no side effects. It will soon be time to see the rheumy and there are many other biologics to try and let’s 🤞🏻🤞🏻 what you get next will be the one. 💗

[Brushwork in reply to Neonkittie17]

Really hope so.Thank you, go gently

[LinaM]

Hi Brushwork! I’m sorry to hear you’re still looking for the wonder drug for you ( as am I) Do you mind me asking how the clinic know the mtx not good for you? Are they keeping your appointments or do you have to phone them when it gets too much . I’m not having any treatment at all now for almost ten months because my appointments are constantly being cancelled by them 😭

[Brushwork in reply to LinaM]

My problems with Mtx are to do with side effects, together with the ineffective control of RA as I was still flaring after 8 months, not blood works. A note here that my CRP and ESR are never high even when I have visible and very noticeable swelling and inflammation, but liver, kidney and fb are all fine. I decided I was really struggling so phoned the RA nurse, explained my situation and made it clear I couldn’t tolerate Mtx at 20ml, she spoke with Rheumatologist and called me back with an appointment to review my meds, have sans and then see the Biologic nurse.

My measure is; if the pain feels more acceptable than the side effects of the drug, that is when I stop taking the drug. I am firmly of the opinion that it’s my body and my choice. In this case the physical side effects were the trigger and only when I’d been off Mtx for a couple of weeks did I realise that my mental health improved dramatically, even though we were just entering another lockdown, and it has continued to improve while my pain has increased.

[LinaM in reply to Brushwork]

Thank you ... that’s been my experience of mtx too. Feel better off it than on.