Worn out

I saw the rheumy today, and she wants to take me up to the maximum dose of mtx. She's prescribing leucovorin as well, instead of follic acid to try to lessen the side effects but mtx makes me feel gross for about 3 days after the shot...and then it's nearly time for the next one. I've always been kind of reactive to meds, but this one frustrates me, at least in part because I'm not seeing much improvement. I know, 2 months isn't very long in the scope of mtx, but I just feel wrung out like a dishrag. I've decided to name my RA, though. It's called Weevil, and I hates it.

Ah well. Today I am grateful for hot baths, clean sheets, a ridiculous cat, and a place to vent.

22 Replies

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  • I used to be on MTX I got to the point where I was spending most of the week feeling crap and felt I could no longer live like that

  • Hi Sunflower.

    Can I ask you how long you've been of MTX and have you been better or worse re RA. I have had RA or 14 years and after taking MTX for over 10 years I just felt I had to give up. My doctors were very much against this. I went back on it and now I'm off it again.

  • It's good to go with your gut feeling I have learned. I was on Mtx for 12 yrs and now off altogether for last year and I am no worse. I think we have all become too dependent on drugs (chemicals) and are slowly poisoning our bodies for a quick fix. I am on the alternative road again and now take 3g of Vit C a day and looking forward to my Niacinamide order to come through. Also on Hyaluronic Acid for joints, Glucosamine, Omega 3. Have stopped the Omeprazole, Naproxen, Calcium too. Good luck.

  • Finally someone who thinks like me! I'm trying all the alternative stuff too - in fact have done it for many years. If I'd left it to the doctors I would be in a wheel chair for sure. Beware the niacin - you will get a hot flush for a while - I couldn't deal with that so I stopped taking it. For the last few months I have given up all dairy and meat and eat only fruit vegetables and beans etc with loads of ginger, onions and turmeric all natural anti-inflammatories and I feel great. I also exercise in the gym and use the steam room followed by a cold shower! I actually feel really good. Please keep in touch. x

  • Pleased to meet you Rosemina. The Niacin I am getting is non flush - Niacinamine, so hope that works, will report back. I too am thinking about being meat free, goodness knows what anti-biotics etc have been injected into the animals during their life. I refused DMARDS for the first 10 yrs. as I was researching and using natural products. I wish I had stayed that course but hey we all think the docs are gods with their fear mongering tactics. It depresses me seeing so many hop from drug to drug ever hopeful the next will be better.

  • I agree it's very sad to see the total blind acceptance of drugs by so many even though their condition is not improving and their energy levels are completely depleted. If only people would realise the massive amount of money made by drug companies and the powerful lobbying going on.

  • It is and I don't seeing it getting any better. I doubt if they record death by drug, just heart attack or cancer which can encompass all manor of causes. I even hear of children being taken from their homes in the States and forcing them to have Chemo, against their will ! At the weekend I had a toothache and a small abscess on the gum, I put Bongela on it and nothing, I did not take Paracetamol as may need it again in the night. So I had my what is usual now, Liposomal Vit C sachet in with fruit juice and guess what? Pain gone! Abscess hardly there! Could not believe it. Oh and rang a dentist for disabled - sees you in wheelchair - FIVE months waiting list!! What!

    Have messaged you, Rosemina. x

  • I can assure you that whatever the cause or causes of death it is recorded at post mortem. If there is a questionable death the coroner or next of kin can order further investigations. Ever heard of the word forensics?

    Do you believe that to be true about children in the US?

  • I should think many relatives would not question cause and anyway true root cause may not be final cause.

    Yes I do, have a read. naturalnews.com/048343_chem...

  • Did you ever question your folate levels or Vit B12 levels rosemina? This can very much have an effect on tolerance of MTX. I've been on MTX for over 6 years, both tablets & injections & in no doubt it works for me. I know when I've been off it by 3 weeks it's long enough as I feel my symptoms returning. It's always best to talk over any concerns with your Rheumatologist. There is the possibility that it now has limited effect after 10 years, it does happen & if that is he case I'm sure there is an alternative you could be offered. Uncontrolled you risk problems in the future & as it sounds as though your Rheumy is concerned about this I'm sure he will do all he can to help you.

  • I know exactly how you feel I was on mtx for over 2 years and for the rest of the week after my injection or tablets I felt like crap so I stopped over 8 weeks ago my mouth ulcers vanished I feel fantastic no more sickness but the pains have started to creep back in pins and needles in the feet and hands again so using gabapenton which works seeing the Rheumy nurse and consultant on Friday but I won't take mtx again.

  • Hi,I've been on methertrexate on and off over ten years. It does make you feel vile but in the early days worked wonders but I don't think it does any thing for me now apart from make me un well for most of the week.i start embrel on Friday and hoping for good results

  • Hello, Do I take it you are on MTX by injection/pen not oral? If still on oral MTX it might be worth asking about subcut MTX, but if you already on subcut then do ensure you know what your DAS (disease activity score) is. If greater than 5.1 and MTX isn't holding your RA at bay then it is time to talk to your consultant about perhaps moving onto a biologic drug. I do hope you begin to feel better soon but if you need any help please contact our helpline 0800 2987650 or email helpline@nras.org.uk or visit the website nras.org.uk/5-ongoing-care

    Good luck and remember we are here to help.

    Clare

  • I'm on subcut mtx, but I'm such a new dx that I don't know what DAS even is! Thank you all, I'm glad to know I'm not alone, that this drug isn't just hard for me. I'll try with the leucovorin and see how it goes, but I'm not prepared to spend the rest of my life recovering from my shot. I do see my gp on Wednesday, so I'll ask him about my bloodwork. The rheumy said it was 'fine' and I didn't think to ask what exactly she meant by that till after the appointment. There's so much to learn!

  • I agree with you this site is great for a vent and just knowing that it's not just you.

    I'm Just on my second week of mtx and so far not sure what's worse being in pain or feeling spaced out and sick.

  • I know what you mean :P I have found the mtx has improved my energy levels, though. On the fourth day after the shot I plan my heavier chores and appointments. We'll hope together, shall we?

  • No, 2 months isn't long unless the med that's supposed to make you feel better makes you feel wretched. I do well on 15mg MTX & 5mg folic acid every day except the day I inject but I've touched on that before & this isn't about me! I don't know the protocol in Canada but leucovorin is more widely used here at much higher doses with MTX but I've had a quick look & PubMed recorded a double blind trial where it was used with low dose MTX & found "leucovorin did not decrease the therapeutic effect of MTX", so that's a positive.

    What surprises me is that even though your Rheumy's prescribed leucovorin she's being a bit gung ho increasing the MTX to maximum dose so soon after introducing it. You don't say what maximum is for you but if it was me I would be questioning if it was the better option to just add the folinic acid or even add an NSAID if you don't already take one (or a different one if you do), or even a short course of steroids to sort out the inflammation & in turn pain to give your body a chance to get used to the MTX, use it as a foundation to build other things on almost. Let's face it it's not exactly paracetamol is it & your body needs the chance to get used to a stronger type of med. This is my personal thinking, what I would expect, you may not wish to rock the boat. It's just that given you already react adversely to MTX just now surely increasing the dose could make things worse at the mo even with the addition of leucovorin & you won't necessarily know if it would have worked with a slower increase.

    Obviously you need to be guided by your Rheumy, she is the Specialist & she knows your history I take it? It just seems odd to me she's increasing a med to maximum dose which after only 2 months makes you feel rotten with or without a supplement when there may be other options to consider & keep your dose as it is to see if the leucovorin does help tolerating MTX better if it's proving to do good. Sorry if I've spoken bluntly or my thoughts are simplistic but sometimes Rheumy's don't always consider that side effects can be so distressing for their patients. I just want you to be given the chance to change the name of MTX to your antidote like I have! :(

  • I think she's worried about my hands, mostly. I'm a pianist and a writer, and there's a history of inflammatory disease in my family, but yeah...it does feel like pushing things. I'm still hanging onto the idea of an antidote, though. I will hope and you hope, and maybe it'll all work out? I'm in the process of applying for a guide dog, so I'm hoping really really hard!

  • Aw, I really hope you're successful Azabat, for both your antidote & your guide dog. :)

  • Hi azabat

    Sorry to hear you are no further forward. Naughty weevil!!! I agree with no more heels in that it seems a little previous to increase the mtx when you have only been on it 8 weeks. My rheumy told me mtx takes up to 12 weeks to work and if my memory serves me right it was 12 weeks with me. I felt unwell too at first but now I just get a sort of stuffy nose or sore throat the next morning, very mild. Apparently this is common. Your rheumy is trying to help because you are telling her you hurt but if it was me I would suggested waiting 4 weeks before increasing the dose.

    The DAS score is the disease activity score. On exam your rheumy should press on specific joints and test for pain and swelling . Your score is one point for each sore joint and one point for each swollen joint. The joints are shoulders, knees and all fingers and thumbs. In the uk your score has implications for treatment options. If you cannot tolerate mtx after you have been on it at least 12 weeks your rheumy will/ should try you with another drug/s. There are loads so don't worry. Have you looked on the NRAS website? (National rheumatoid arthritis society). There is loads of useful info on there!

    Www.nras.org.uk

    You may have a similar organisation in Canada. Our is fab.

    The hot bath and clean sheets made me laugh as I have just had a bath and am getting into bed with crisp white cotton clean sheets. Ah bliss!

    What's your cat called? I have a little black girl Tess who I rescued from a sanctuary. She's very timid and we love her.

    Take care and come back anytime to ask, vent, share. We are here for you.

    Kikideelili x

  • hmmm, I guess my DAS could be why she wants to be so aggressive with the mtx. Both hands (knuckles and first joints of all my fingers) are all sore and swollen), plus thumbs, knees, shoulders, and ankles are at least sore. and one wrist. I have an appointment booked for April, but I know I can call earlier and speak to the nurse if I need to. My gp is also incredibly accessible. I'll check into something like nras, but honestly I've been getting most of my information from the UK site.

    My cat is also a little black rescue, named Elsa. I said I wanted a talker, but Elsa is practically operatic. *grin* Her very favourite toy in the world is a hair tie - she actually throws them in the air and jumps after them. I'm very glad we found each other. Thanks for being here :)

  • Hey AZABAT, hang in there,i,ve had RA for over 20 years and i,ve never had a RA med that didn,t have an unpleasant side affect. Eventually you,ll find one that works best for you. good luck!

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