When will I feel a tiny bit better

I'm on 15mg of MTX for 3 weeks now, still have my cold, can't shift it, also weaned myself off of predisone 2 weeks ago. I think this might be the problem of feeling so ill. I think it may to the comedown of being of the steroids. I haven't done a full week at work for the last month, can't sleep, exhausted all the time, still have aches and pains, still have flare up in my collar bone, shoulder and left elbow, resulting in not being able to use my left arm most of the time unless I dose myself out with pain killers. I feel every bit of life is being drained out of me. i had my bloods done today ( don't know how I made it to the hospital & back) seeing rheumy next week but the way I'm feeling I can't see my bloods coming back normal. I'm getting so tearful worrying about when I will ever feel normal again. Sorry for the moan, but has anyone else felt or feel like this. I feel like I have a terminal illness or something . I take folic acid 2days before MTX.


29 Replies

  • Hi Sandra. Speak to your doctor about it, but it could be that you have stopped the Pred before the MTX has been given a chance to kick in, leaving yourself with no crutch to lean on. You shouldn't be left in pain like this. Angela.

  • I'm seeing him a week on weds, it's not even so much the pain it's the way I'm generally feeling, just completely run down, lethargic and depressed. I'm hoping it's all because I didn't wean myself off steroids well enough. Thanks for your reply Angela.

  • Hi Sandra,

    I've been on the MTX for about 10 weeks and it really started to work at about the seventh week, but they say it can be up to twelve weeks for the benefits to be felt. My rheumatologist said that MTX isn't pain relief so to carry on with ibuprofen if I needed it, which was most of the time, but I haven't had it for just over two weeks. Not completely pain free but enough to get by.

    I did have a couple of weeks near the beginning where the day or two after the MTX I felt at a low when nothing seemed to be happening.

    My advice would be stick with it and I really hope that it starts to work for you.


  • Thanks mike

    I have to continue as I've put off going on it for years and my arthritis is just getting worse. I can't wait to feel normal again without this fog brain,tiredness and headaches. I just want to smile again. Week 4 this week, roll on the12th.


  • No not a terminal illness Sandra but you do have a chronic disease & recently started on a med you've resisted so the likelihood is that you're not controlled & the MTX is battling your cold as well. I'm sure you know the reason why most Rheumys prefer to treat with MTX as the first DMARD so if, like me, you were started on a generally less effective DMARD then that's only going give the MTX a head start. It's not known as the gold standard first line treatment for no reason!

    I'm sure in a couple of months you'll think differently, if you respond as well as I have. Hindsight is a wonderful thing but I wish my Consultant had put me straight onto MTX instead of preferring a softly softly approach & knocked mine on the head earlier!

    I would think anyone with a terminal illness wishes they had a chronic disease, don't you think so too?! If RD has taught me antything it's to be patient & of course having come to the end of steroids will have made a difference as they'll have masked your symptoms to a degree. I'm assuming you followed his advice on tapering to the letter? You probably know but it's really important to reduce over a period of time, specifics depend on the dose & length of time you've been taking them as, amongst others you could experience the problems you describe if you've come off them too quickly. Did he not prescribe any additional pain relief or NSAID to take in between tapering & the MTX reaching full effectiveness? If he doesn't think to your symptoms are due to incorrect tapering it might be an idea to ask if he could prescribe something even if it's only a short course, it may help you over this rocky period. Be honest with him, whatever your bloods show, they're only part of the whole & listening to you may give him more info as to which route to take.

    Let us know how it goes next week.

  • I did try hydrochloride about 6 month ago, but it effected my eyes so only lasted a week on them. It's just because I'm feeling so low and fragile at the moment that's why I compared how I feel to a terminal illness and can't see the light at the end of the tunnel- but i will get there, like yourself and many other people on this site. Thanks for your reply it really helps to talk to people who are going/been through the same as you.

    Sandra :)

  • Hydrochloride or hydroxychloroquine? If the latter, & forgive me if I've told you this before, that was my first DMARD & whilst it worked at the beginning it wasn't effective enough so my Consultant added MTX as double therapy. That didn't do the trick so HCQ was withdrawn & for some reason MTX as my only DMARD did. Been on it now coming up to 4 years & as I said just wish it had been my first DMARD.

    Again, describe to your Rheumy exactly how you feel so he can determine exactly how to treat you.

  • Oops I meant hydroxychloroquine - I chose that one because I was too scared to go on methotrexate. Should have just listened to the doctors first time round. Four years - that's a long time. Do you have many flare ups ?

  • I wasn't given an option at that stage. A diagnostic clinician made the decision for me to give some relief until I had my initial consultation & along with a Cox 2 NSAID, steroids & pain relief it did for that 3 months. This was why he decided to keep me HCQ as it was pointless giving me MTX if I didn't need it. It was only that after a while HCQ lost it's effectiveness & as I'd been prescribed 400mg from diagnosis he asked if I was happy to add MTX into the mix. He fully explained about it's likely pro's & con's & decided that as he had the knowledge I'd be guided by him. I think what helped was seeing the comparison charts from no drugs & the lessening use of HCQ. I obviously wanted something else to lower the pain & inflammation & also to be able to walk properly again as I had with HCQ played a huge part!

    I'm pretty well controlled, always in the DAS 28 low disease activity range but I do have issues with my feet. If I flare it's generally my own fault for not listening to my body or if I come down with something. I am on long term low dose steroids though because towards the end of a 2 month taper I flare & since the last attempt my OA has worsened. It means I have to take a weekly med & Adcal-D3 daily to preserve my bone density though as I'm osteopenic borderline osteoporotic.

    I hope MTX works as well for you as well as it does for me & your cold goes soon.

  • Hi there I'm sorry you not feeling fab at the moment I have been on mtx for 9 weeks now on my 4th week I was still feeling pain in my joints and so so tired luckily I has a check up with my rhumy nurse she gave me a steroid injection to help pick me up. I have to say that it worked. Although 9 weeks into mtx I'm suffering severe headaches and still very tired and feel extremely low as you have described but I will say that I don't feel as much pain in my joints and my hands and fingers are no longer swollen, I can actually wear my wedding ring now. I sympathise with how you are felling right now I have felt so unwell for so long I have forgotten what it feels like to feel normal, like I used to before RD. Hang in there like people before have said it can take upto 12 weeks for it to do what's it meant to. I also take 5mg of folic acid 6 days. I hope it starts to work real soon for you.

  • Sorry to hear you feel the same, it's not a good feeling is it. I only take folic acid once a week and that's 2 days before MXT. I just want my energy back. I just hope after the 12 weeks all them horrible effects will go. So Jan 2015 I hopefully will feel a live again.

  • Hi Sandra, I wonder if you are feeling so drained because you came off steroids too fast as this can affect your adrenal system causing it to play up and feel pretty much like you are. I hope your rheumy can help you. I have been on mtx for coming up 3 weeks and am still weaning down from steroids which will take quite some months. I feel no difference and am looking forward to it eventually feeling a bit like a normal person again. I was like you and put off taking mtx for fear of side effects. Hope you get some answers soon

  • I'm so sorry these things take time to kick in, but I hope you can get support. You're not alone xx

  • Thank you :)

  • Yes I thinking that too, I can remember when I was on steroids before and feeling awful when I come off them. Also the MXT lowers your cells to fight infections. So it could be a combination of both. Hope you feel better soon and the meds kick in.

  • Just to say mtx prob took a while to work for me and I did get the runs, but it helped enormously. Had to come off it because of my lver, but I'd go on it again if I could

  • Hi 02tkwillx,

    so sorry to hear that you are feeling so bad. If you feel the need to talk to someone please do ring the helpline and have a chat. Our number is:

    0800 298 7650 Monday - Friday 9.30am - 4.30pm

    Best wishes

    Beverley (NRAS Helpine)

  • Hi beverley

    Thanks so much for that number, I will save it. I'm due to see my consultant next week, had my blood done yesterday so I'm hoping something will show up and then will answer the reason to why I'm feeling like this.



  • Hiya Sandra. I've been mulling over how you're feeling. How were you directed to taper your steroids? I'm a bit concerned that you may have done it too quickly. To give you an idea the way I was directed to taper in Jan this year after 16 months on a low dose (3mg) is

    normal dose (half of a 6mg tablet) alternate days for a month then

    halve the above dose (quarter of a 6mg tablet) alternate days for a month then

    as above but every third day for a month then stop.

    In the past I've tapered from a short course (a month) of 6mg as follows

    6mg & 3mg on alternate days for a month then

    3mg every day for a month then stop.

    I am always prescribed deflazacort (Calcort) so the above are based on that specific steroid. The two steroids are of the same group, glucocorticoids, but as they're not exactly the same drug (deflazacort is an oxazolone derivative of prednisone) it would obviously be best to double check if this would be a safe way to taper prednisone. If you tapered more quickly it could well be withdrawal symptoms you're having.

    This PubMed link may be of interest to you ncbi.nlm.nih.gov/pubmed/123...

  • Hi there

    When I had a really bad flare about 7weeks ago, I dragged myself to my GP, I was put on 30mg of predisone. ( my elbow was the worse and so swollen I couldn't use my arm)I then called my consultants secretary at guys hospital and she brought my dec. app forward. I continued taking the 30mg. But when I saw my consultant about 10 days after he wasn't happy about me being on steroids,he thinks they are lethal. Although he didn't want to flare to go back to the worse stage he asked me to wean myself off them. I started taking MXT and reduced the steroids. I came off them in about 10days , going down to 4 (20mg) for a few days, then 2 (10mg) for a fews days then 1 a day. Then stopped completely that was about 3weeks ago. That's when I started feeling dreadful which makes me think it is the comedown from the steroids. Actually today I feel slightly more with it :) but that could be because I've had lots of sleep, I only woke up once last night Also I'm off work this week as I work in a school and it's half term. So I'm not rushing around and can rest when I need to. x

  • Lethal??? Not sure just what he means but many people find them very useful in bringing inflammation down & bridging between meds, in RD anyway! I suppose each Rheumy has their own idea of treating & the meds they prefer so I suppose steroids aren't his for some reason.

    I guess if that's how your Rheumy directed you to taper then he considers it a safe way, all you can do is reduce as he instructed isn't it? It is rather different though from how I've been directed on a much smaller dose after taking them little more than twice as long. I'm pleased you feel a little more with it & think all you can do is hope all you've experienced will improve. At least you're not worrying about work & you can rest up this week, it just seems waste, poor you. x

  • He thinks they harm your body especially the stomach. But done wonders for reducing my inflammation and when you're in extreme pain they are wonderful. He told me to come off them and keep taking ibufen every 4 hours so they built up in your system and work on your pain. I suppose he's right as I never get a comedown from pain relief but I'm sure I'm feeling like this because of predisone.

  • You can only do as your Rheumy suggests but I've always been advised to take my meds with food anyway as many can irritate the stomach. I would have thought ibuprofen was a stomach irritant too taken regularly but if he's suggested or prescribed a ppi you should be covered. I hope they work on the pain for you, but if they don't tell him & he should offer you something with a bit more oomph.

  • Hello, hope you feel bit better reading all these comments.They are trying to reduce my steroids and I felt really rough, especially hands, wrists and feet & blood test went sky high again. I was told I should of phone the hosp help line and not been in so much pain, they have put my steroids dose up again and feel loads better, while I start yet another drug. It is hard going. best wishes

  • Yes when I was taking steroids I felt ok, just weaned yourself off them correctly when you have to and good luck with your new meds. Have you tried methotrexate?

  • Hello yes I am on metho tablets, hydrox, and sulfa, about to try metho injections, as when steroids gradually reduced to low dose, the pain increased. Thanks

  • I thought you could only be weaned off Pred gradually, and under the doctor's instructions. I started on 40mg for 28 days, then 3x1,000ml infusions,followed by 30mg tablets for 28 days, now on 20mg for 14 days, then will be on 15mg until reduced further. Won't reduce my dose or stop them until advised by my consultant.

  • My consultant wanted me off them as quick as poss. and striaght onto methotrexate and pain killers. You have been on them for a while, are you on any DMARDS ? would be great to know how you are when eventually off them. :)

  • Hi Sandra, In me, the fatigue is just active disease. I get it and have just come out of a period of about a month where I couldn't function at all because I was so tired. I am on low dose steroids but nothing else at the moment and a steroid injection a couple of months ago is wearing off. It's really hard but, if and when the mtx kicks in, you should feel better.

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