Just started Methotrexate

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I was diagnosed at age 35 when I lost my first child as still birth. My initial was anti-cardio lipin antibody syndrome, protein C and S complications. I was told at time it would manifest as one of the auto-immune diseases. I had manageable pain, never took more than a Tylenol. I am a police trainer and on my feet for up to 12 hours. As I aged I would notice swollen feet mainly left. Everything always ck out fine. 2014 I had catastrophic injury to shoulder requiring 4 surgeries ending my career at 50. At this point my markers for RA was off charts and fibromyalgia kicked in for giggles. I have resisted medication bc I thought it was age, over weight from being sedentary, blah, blah. Pain unbearable daily - managed bc of shoulder with oxycodone. Want to come off that so decided to go RA drug methotrexate. 2 weeks in - pain considerably less but I feel horrid days 2-4 with nausea, energy, tired and like a truck hit me on day 6 until next dose. This will be my 3rd dose and I now have a burning sensation in my esophagus to my stomach, thinning hair, and what I think is quite possibly hives. Has anyone experienced this? Does it get better? Is there another better drug. I need HELP please.

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  • Posted

    Sorry to hear this!  Do you take it in pill form?  From all that I've read about Metho people are suggesting injections that don't cause stomach upset.  Can't give you any info on all the other side affects!

    I wish you luck!

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    • Posted

      I take (took) pill form 15mg per week (6 - 2.5 mg tabs). After just two doses progression of side effects ; felt as if my insides and skin were burning. 4 Benadryl later and no ease of pain. ER diagnosed UTI and lung infection. Opportunistic - I guess meaning peripherally caused? I'm stopping this med... I will either have to find another or go holistic or deal with it. Feeling like this is crazy.

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    • Posted

      I ended up with interstial lung disease apparently from the RA and my cardiologist suggested I not take it because it could make it worse.  The only thing I'm on is Enbrel and doing quite well.  The only symptoms I have is some swelling in my left hand and achy wrists at times.

      Hope you get your RA sorted out!

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  • Posted

    I had similar reaction but when I started over I took three instead of sux the first week and added one each week until at six.  I had no nausea that way.  It does take time for methotrexate to work.  I have had rash on face and back in the beginning as well.  If I am n the sun without sunscreen I break out now where I never had before.  Sulfasalazne is blamed fir that I guess.

    Be patient and if you have pan take Tylenol.  

    I wish you the best.

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  • Posted

    Hi Tamil

    Sorry to hear that you have this awful desease. With methotrexate you can have it injected so you don't have to swallow pills. If these don't agree with you they may try other drugs. Best of luck

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  • Posted

    I started on Methotrexate a few weeks ago for RA.  Five days after my first dose, I came down with shingles for the second time.  The first time was about 15 years ago.  Luckily, this second case hasn't been too bad because they immediately put me on an anitviral and the rheumatologist said to stop the Methotrexate till the shingles clears up.  They think I got it because of the physical and emotional stress of my various autoimmune conditions (trigeminal neuropathy, connective tissue disease, vitiligo, Raynaud's, now RA), but I wonder if the Methotrexate brought on the shingles.  If you have a rash with blisters that appears on only one side of your body, get to the doctor quickly.  They will even prescribe an antiviral for you by phone.

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    • Posted

      Hello😀, Firstly, I am sorry you have RA and other autoimmne diseases.  I as well have multiple autoimmne diseases.

      I had shingkes at the age of 27.  It was a stressful time in my life (divorce, new job, new relationship, second job).  I doubt Methotrexate had anything to do with it though it does lower our rsistance to illness.  

      I would like to learn more about multiple autoimmune diseases.   I believe it has something to do with stress and wondering if chemicals are an issue as well.  I have cleaned with a lot of bleach over the years.  Even inhaled too mch one time and had to get out of bathroom to breath.  Never again did I use it straight.  

      I am almost 65 now with four autoimmune diseases.  If youor anyone else knoes anything about this subject please let me know.  

       Shingles is no fun.  Mine was around waist.  Where is yours? 

      I wish you nothing but better health.

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    • Posted

      Hi Babyboomer27.  My first episode of shingles was light.  I just had a few sores on my lower face and inside my mouth. Like this time, I took antiviral right away.  It is scary, though, when you have it on your face.  Yes, I remember that it was an extremely stressful time at work.  This time, I have it on the upper part of my breast, in my armpit and it wraps around to my back.  I think the antiviral kept it light on my back.  Both of my episodes have been on my left side.

      I have had Raynaud's Disease since my late teens.  I didn't know what it was till I was in my forties.  Although it often accompanies other diseases, I was never diagnosed with anything else, so just accepted it as itself.  A few years ago, I was diagnosed with vitiligo.  They never tested me for any autoimmune factors even though I had the two conditions.  Now, I have supposed connective tissue disease and supposed RA as well. I say supposed because I am somewhat of a mystery.  They can't find anyone else with my exact symptoms.

      What are your other autoimmune diseases and what medications are you taking?

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    • Posted

      Hi

        I am new to this site and new to RA --started Methotrexate 3 weeks ago.   I have 2 other autoimmune disease so I am responding to your question.  I have read an excellent book titled The autoimmune connection.  Even though written in 2003 I still think it is relevant.   It discusses what they call  

      clusters of autoimmune diseases and groups them according to which ones generally go together.   Stress and chemicals can play a part but no one knows for sure from what I gather.  Also attended an all day course on autoimmune conditions and what can trigger them.  Way too many chemicals in the environment to try to avoid them all but I try to be very careful in what I come in contact with--avoiding harsh chemicals

         My first dose of MTX I took 3 pills together and I had terrible diarrhea for almost 3 days.  I was not going to take ever again but I read some info that you can take the pills spread out over the one day you are to take them and today I am on week 3 and increased to 10 mg at present.  So will see.    I see the doc in 2 wks and he said I could switch to another drug--he is thinking Humera.    I also have vitilgo and Crohn's so I start to think what's next --

         Best wishes for your improved health and everyone else on this site

         

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    • Posted

      I will get that book definitely. I know I have several and I am u sure which is worse on daily basis. Woke up this am and my left arm and shoulder hurt and I couldn't move it. I zapped with tens unit and 2 perc and it's tolerable.

      I've learned on this site that turmeric is good so going to try that in capsule and black cherry juice. I was at 15mg at one time and doc wanted to increase. Thankfully I had the allergic reaction before he attempted the lower dose was awful. I may never take that again. I will find another doctor or another way.

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    • Posted

      If you can't work with the current MD then I do hope you search out another. Sometimes that is what it takes.  There are many different medications that can be tried.  From what i recall reading in another book and online medical sites the belief is MTX is the one that works very well and supposedly fewer side effects.  Only talking about the oral medications now.   I read the side effects and they are scary for sure!

        I have been taking tumeric for a yr or 2 but before this diagnosis for what I thought was osteoarthritis / pain.  A doc told my sister about it.  Also take Fish Oil and Evening Primrose and probiotic for the bowel disease

         I try to get out and walk daily / try and stay as active as I can.  I stopped my senior aerobics class--too afraid of joint damage

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  • Posted

    Hi I've just come across your post I'm 29 and just being diagnosed in September last year but as symptoms have to got worse I'm

    Now on my 3rd week of methatexate and my hair is falling out in clumps ! I've felt much better in myself but as I've lost my self confidence through all this already now hair loss is completely freaking me out !!

    As I'm a hair dresser I know this isn't normal have you tried anything to help this ??

    Thanks Katie

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    • Posted

      Dr told me my hair would "thin" in the tone of "you ridiculously vain woman". 2 weeks in I had hair loss significant and allergy developed AFTER 2nd dose. I will NEVER go back to this drug. Maybe I am weak and couldn't let it runs its course but I had hives and felt my body was burning from inside out .listen to YOUR body. I am told there are other drugs that may be better suited for my body . It did relieve pain but at what price? I couldn't have continued.

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    • Posted

      I know this is the problem I will just stop taking it , my consultant and nurse are pretty rubbish as I vowed I wouldn't go on this drug but felt like they were saying I had no choice ! I feel my life completely changed already now for hair loss I don't think I can cope with that too !!!

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    • Posted

      Katielou ... I exact experience w/my doc and nurse. First they parented this drug as treatment course then doctor left and nurse and counselor came in with forms to sign and discuss side effects. I had to sign consent to treat w/this drug and say I understood side effects were the chemo side effects. I took the paper came home and discussed w/ hubby, primary care and hemotologist. Blood doc said no I had too weakened of system. Primary said he sat on fence but if it relieved any pain it was a widely used drug and everyone had different reposnses. Took me 6 months to decide bc I was THAT hesitant. RA doc was cavalier when after week 1 I said something is not right. Week 2 I landed in ER. It's powerful. MY body didn't like it. I had gut before, after 1st dose w/vomiting and nausea. So that all was my way of saying go with YOUR GUT. Don't let arrogant medical community bully you into something. Do your research, join forums such as this, find others on FB who have had treatment and ask what they use. Mm

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    • Posted

      Hi Katie

      I was on methotrexate when I was first diagnosed. I was scared but persevered and after a few weeks I went in total remission great. But the side effects liver function test went up and hair loss but not as bad as you said. I had to stop taking them and on Sulfasalazine and my symptoms are much worse. Really inflamed joints. Neck shoulders wrist and fingers and now knees. Really painful. But I wish you luck

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    • Posted

      Every drug has side effects.  You have to weigh them with the pan and odds of your RA getting wirse.  I stopped Methotrexate and within two months had more pain than I ever want to experience.  I am back on.  I am feelng so much better two months back on.  I cannot begin to tell you what you shoukd di.  I was told Methotrexate slows RA down which means fewer oanful symptoms.  I would rather give up two to fve years if lfe feeling good than being in pain all the time.  Also, the more I move the better I feel.  If your ankles hurt at night you may want to wear an ankle brace by day.
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    • Posted

      I know well I haven't being able to walk for 6 weeks before starting methatexate due to swelling on my knee constantly having it drained and now have onset of osteoarthritis! I think it's because I've had to change who I am so much in such a short time this hair loss is now freaking me out even more , I've lost my confidence already and now to start to worry my hair is thinning I don't know if I can cope with that vein it seem!!

      Let's see if it slows down another 3 weeks till see consultant , someone has advised me sea kelp is good for hair loss so of to Holland and Barrett I go ! Thanks ladies

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    • Posted

      Sorry about your hair, katielou2016.  I have very long hair that I have lost about 1/3 of since I have been on various medications at different times.  However, it could be the disease(s) that cause the hair loss as well.  It is devastating.  At least so far, mine is not coming out in clumps.
      Report / Delete Reply

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