methotrexate worry

hi everyone hope you are all as well as can be.

my rheumatologist is very good and lovely. on my last visit 12th January 2017,i told the rheumy how well I had felt after the steroid injection in my bottom given on 12th November 2016, so she thought it would help if I started methotrexate with my hydroxychloroquine. I am waiting to see the rheumy nurse to organize this.

to-day 1/2/17, I only have slight pain in my feet, thumbs and shoulders, is this because my steroid injection is still working?

my blood results are sero negative rf. esr 29 and crp 8, I know these aren't high and wonder If I should delay starting this medication. but am I really worried about starting methotrexate.

if anyone has any thoughts on this or advice it would be very much appreciated. xxx

18 Replies

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  • What about your ccp?

  • thanks for quick reply, I've never heard that mentioned, or could I have mis- heard and she said ccp and not crp. what is ccp test x

  • I don't think you heard wrong. These are usually the results given but they do no explicitly tell you if you have RA. The ccp however predicts or tells you with high probability that you eather have RA or going to get it. Your blood work doesn't show active inflammation perhaps the hydrochloriq helps? Usually the steroid injection doesn't help that long. When was your bloodwork done?

  • hi, blood work done 12/11/2016

  • It's not an easy decision to make in your situation. Mtx has side effects for most users, especially the first months.It works for around60%. After having followed experiences on different forums have noticed that sero-negative patients have more problems with mtx. For me it was a question of finding out when a hard med was really needed, instead of just taking the same route as everyone else. The fact remains that there are so many varieties of RA and it is nearly impossible to know in the beginning which one you have. When I was diagnosed Dec.2015 all my blood readings were high I had ccp and was sero negative. I wanted to try the nontoxic alternative and see if I needed hard drugs. Since my diagnosis I have been on astrict diet, LDN and supplements. My RA is under control so far but do need occational ibuprofen and Tylenol. Hoping I will be able to leave these too. In my case I have been lucky to make the right choice, so far at least.😊

  • Hi there- new to site - newly diagnosed with seri negative RA or another connective tissue disease ( nicely specific!) trying to decide about going on Methotrexate or not. I have delayed because of things being fairly tough right now ( single parent of 2, one disabled, critically il mother and other caring responsibilities... Scared of such toxic medicine and dealing with side effects with no support. To top it all I just had a nasty car crash and have whiplash and all the joints that hurt are hurting more!) could u tell me more about your approach? I have radically changed my diet to gluten, sugar and dairy free which was helping until car crash! What is LDN? My rheumy was very dismissive about my concerns- cold t understand why I would risk future joint damage, but my OT is more nuanced in her approach.., sorry to but in- I just follow anything to do with Methotrexate !!! Ness

  • Hello Ness,

    It seems you have a lot stress going on in your life at present:( which ofcourse doesn't help your condition. Taking care of your gut and body is always essential even when, and perhaps perticularly, when you take hard meds. I am on AIP diet and important supplements and I am also sure that LDN makes a big difference. Here you can find all the info you need: ldnresearchtrust.org and ldnscience.org. You didn't say anything about your blood results so it's hard to say anything about your current situation in relation to taking mtx. Many have started with mtx and after starting AIP or Paddison have been able to reduce the med or even leave it all together.

  • hi,

    thank you, you have been very helpful, sorry for asking what is LDN. hope your way continues to keep working for you

  • Here sites with all the info you need to know about LDN: www.ldnresearchtrust@org and ldnscience.org. Worth looking into😊

  • My RA is very active but my bloods apart from the anti ccp are all normal. I get no change from steroid injections or tablets. At the moment I a man trying to persevere with mtx but at a much lower dose. Trouble with RA is that it can be damaging your internal organs without you noticing which is why I opted for treatment.

    I don't know where you are but I found out recently that not every area in the UK tests for anti ccp as a matter of course. Relying instead on just RF. anti ccp is a much more sensitive test and might Ben worth asking for

  • hi, thanks for your reply, I have only been told of sero negative rheumatoid factor, esr and crp. how are you coping with the methotrexate. hope you find something that works for you

  • Adding to this my CCP is classed as high but not sure what others are on here. Mine was 154. RF was low, CRP and esr were all low but my joints are extremely painful. Only been diagnosed for 10 mths. I would try and get the CCP as I was told its best to hit it hard and fast to prevent permanent damage to the joints. Once under control the drugs could be weaned off to a control level. I'm not there yet but will keep plodding on. Good luck.

  • I was diagnosed 4 months ago - my anti CCP was classed as high too at 231 and my RF low CRP and ESR are also normal MRI of hands showed synovitis and some early damage At the time I was presenting with very few symptoms although had had problems with my knees and feet over the last 2 years which hsd come and gone Started in 15mg MTX and hydroxychloroquine Although my hands do become inflamed now my other joints - particularly knees and feet/ankles are so stiff with a gnawing pain but don't show obvious inflammation I also often feel poorly and so fatigued The rheumy has suggested now I may have 'chronic pain ' - whatever that means !- rather than my RA becoming more active The second steroid wasn't very successful As you say it is important to hit this hard and fast and I'm worried about further damage I am having an MRI of my knees but I was wondering how many other people have active RA without obvious inflammation ?

  • I believe your steroid injection is begining to wear off, that is why you are starting to feel pain.

    If you start mtx & hydroxy now with another steroid jab, your RA has a good chance of being controlled at a lower dose of mtx.

    I will always be upset with my first rheumy. He kept telling me my RA was mild and refused to give me mtx. At the time I was thrilled that I had "mild" RA. I had placed all my trust in him as my RA snowballed out of control.

    That was 2014, It took me 2years to find another rheumatologist who placed me on mtx. I am now on 20mg mtx, 2000mg sulfa and 400mg hydroxy....I can not help but think that if I was put on 10mg mtx back when i had mild RA, I wouldn't have suffered so.

    I wish you the best.

  • I had serious problems with methotrexate - it gave me the liver of an alcoholic (I don't drink alcohol) after 4 months. I know everyone's tolerance of drugs is different, but it scares me when I see people are given methoxtrexate and are still complaining of problems. Ask if there is an alternative such as leflunomide.

  • be careful with the steroid injections and methatrexate,,lots of side effects later,at least in my case, i use turmeric,coconut oil ,ceyenne, ginger, cinnamon,garcinia cambogia,cocoa, to relieve my rhum and sugar issues, my ra caused me to go septic in 2008,at that time i was on 23 pharma meds, currently i am on 3 pharma and 9 natural supplements.Go natural, 3,000mg of turmeric per day will diminish inflammation in 7-10 days.

  • many thanks

  • I've been on Methatrexate for about 20 years now only had one blip but would recommend it hope it works well for you too 🌟 Dawn

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