Lowered the dose of MTX - big improvement in energy levels and mind working. But can't walk, sciatica, flares, pain...dose back up.

[MaryLockhart]

I live alone, need my mind to be working, and need to be able to reach the toilet in time, to clean, to cook.A little gardening would be great too! I have been on MTX for over a year, but difference to my mobility is slight, and it makes me a zombie 5 days a week. My muscles are wasting away. I'm in my eighties, and would rather have six months of being alert and fairly mobile than six more years of life like this....Is there any other treatment I can try ?- MTX is the third

[Hidden]

Hi Mary. I can sympathise with you about MTX side effects. I have had my dose lowered and feel mentally better but physically not that good.

Have you been told to take folic acid tablets, and if so, how often. I was told to take them every day except MTX day, and I think it helped.

Are you on any other meds. I have to have MTX, Sulfasalazine and Hydroxychloroquine, and Diclofenac when needed.

I hate to see my muscles losing their tone and I do try some gentle exercises regularly, but its a balancing act to do enough but not too much.

Maybe you can get some help with safe strengthening exercises from a Physiotherapist?

[MaryLockhart]

Thnks, Phoebe. The Sulfasalazine was making me so sick the other meds did not stay down. Sp, Penecillamine, and Diclofenac. I do take folic acid as you suggest, and the Physio gave me exercises which I do religiously, but although I seem to be better muscularly around the knees, my thighs hang loose, and my arms are pitiful! 5 years ago, I was walking 15 miles in the hills every Saturday. Now, I have to haul myself up the ramp to the swimming pool, and sometimes have to crawl to the loo!

[cathie]

Is there a tai chi group near you? It's a nice gentle exercise which helps to keep you supple and balanced. I think it's good for your state of mind too. I take mtxate too and have found recently that the unpleasant side effects of the rushing to the loo variety have eased a bit. I also take an anti tnf which sounded alarming but I'd rather have quality of life now..

I hope you can reestablish some activity

Xx cathi

[Judi]

Hi Mary,

Ive been on methotrexate for years because of the RA (plus other meds.) then January 2011 I got up one morning and sciatica hit me.

Excrutiating pain in my right leg.

I took paracetamol until I could see my RA team who then told me I had sciatica but didn't give me anything for the pain.

I then went to my GP who gave me co-codomol. This didn't do much.

I then rang my RA nurse who suggested acupuncture, this didn't work for me either. I rang my RA nurse again and this time she suggested that I ask my GP to prescribe Tramadol (50mg capsules 2, 4 times a day). Tramadol do help me (plus paracetamol) but before Christmas I asked for and was given a steroid injection and at last I saw some relief. I have since had another steroid injection (which again I asked for) as it appears that the major benefit from the steroid injection only lasts for me for about 6 weeks ............. but what a relief!

I've relayed my story at length because these are the things which didn't work for me, they might work for you who knows.

Would it be possible for you to speak to whoever prescribed the methotrexate and ask them if you could have something stronger? Emphasise the difficulty you are having getting to the bathroom in time and getting off of the toilet because of the pain.

Also I went off of eating, I just couldn't face food because I felt sick all of the time because of the pain, if you are finding this tell them this as well.

Everyone experiences a different amount of pain with sciatica apparently - mine was excrutiating.

Bless you, I know what you are going through.

Judi

[MaryLockhart in reply to Judi]

Hi Judi, and thankyou so much for your detailed reply...I am so very grateful. Yes, I have gone off food. But for some reason I am not suitable for steroidal injections, possibly because of my other medications for heart and asthma. Never the less, I am certainly going to ask for an alternative to metho, whose side effects are not worth the slight improvement it confers.

Best wishes,

Mary

[kstinson3]

Hello from Texas! I begged my doctor to get off mtx after 10 years because the fatigue makes me a zombie. I am a full-time high school teacher and wanted to stop spending the weekends and evenings in bed. More pain but I am more active. I agree about the Tramadol. I take a 24-hour pill and it takes the edge off for about eight hours, just enough to get me through work. I recently began Trazadone in combination with Cymbalta each night (on top of Ambien because the pain keeps me awake). Fantastic results! Finally getting "good" sleep. Without biologics (Actemra now) I would not have a life. Thank God for medical progress.

[helixhelix]

I know some of the newer drugs do have a slightly increased risk of infection, so this may make them less suitable the older you are. But just because you're a bit older it shouldn't make it any less important to find a combination of meds that works better for you. I'd keep on at your Docs, and ask to try something else if you don't think MTX is helping enough. There are about 8 or 9 DMARDS I think so plenty more for you to try! Don't give up. Polly

[Hidden]

It does sound like you need to add one of the DMARDS, like leflunomide (Arava), or one of the biologics, to be taken with MTX. Biologics are all formulated to act with MTX, for best results. Let your Rheumatologist consultant know how things are with you. You should be able to be more comfortable, and good for you to want to stay active. All the best, Loret