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Mtx not working, what now?

Posted , 9 users are following.

shabarr
shabarr

I've been on 25 mg of Mtx for several months with minimum improvement in symptoms. I have noticed that about a day or two before my injection in due, I have increased pain; however, I have to yet to feel relief from pain.

Last week, I got shingles and my doctor told me to stop taking the Mtx until my next appointment (8/10). If have noticed a slight increase in pain, but it's not much. Should I assume that the Mtx was not working? My doctor has already mentioned the possibility of biologics, but I am really scared to try them. Are the risks worth it? If so, which one has the least side effects?

One more question, both of my ankles are affected, and I've already had surgery on one this summer that resulted in even more pain. I'm an elementary school teacher and am on my feet all day, and right now, walking at all is very painful. Any suggestions on what can be done until I get the pain under control? I'm a single parent of two in university and a an 11 year old with severe autism. I can't afford to not work, but at this rate I'm worried I won't make it through the day.

I'm sorry this is so long, I'm feeling a lot of anxiety right now and Hoping somebody can give me some insight on what I can do.

Thanks.

0 likes, 10 replies

10 Replies

  • janis06023
    janis06023 shabarr

    Posted

    Hi, I am sorry you are in so much pain. I have been on Humira since 2005, I was also very concerned about the side effects but my doctor stressed that it is better to treat RA aggressively with biologigics as soon as possible.  I think they all have about the same side effects.  I was in so much pain that I decided I would take my chances with the medicine.  I too was on Mtx but stopped that, I also take 10 mg. of Arava.  I am 67 years old, I am pretty much pain free and have very little joint damage.  I do have fatigue but maybe that is old age!  You have to make the decision for yourself but for me it was the best decision.  I decided I wanted to feel good while I was here, so I took my chances!  It is really expensive now that I am on Medicare but my new doctor (my first one retired) wants me to keep using it because it works so well for me.  I hope this helps, good luck and God Bless!  
    • jo66120
      jo66120 janis06023

      Posted

      Hi Janis, I wish we could talk privately.  I am also on Medicare and was told that I had very limited coverage as to the drugs Medicare would cover.  I assumed it would not cover pills or shots, only infusions.
    • janis06023
      janis06023

      Posted

      Someone replied to my comment concerning Medicare but I cannot find it?
    • janis06023
      janis06023 jo66120

      Posted

      Hi Jo,

      I am not sure what was going on but I could not find your reply, now it is there!  Every January my supplemental insurance, BC & BS, has to approve the Humira.  My doctor has to contact them and state that other less costy medications will not work for me.  She will give me samples if I run out before it is approved.  It costs about $1,500.00 a month for the first few months, then I have spent the amount it takes to get out of the donut hole.  The rest of the year it costs between $150 and $200 dollars a month.  This is quite expensive but I am spending less a year than I was for insurance before Medicare and I feel good, not a bad trade off.  My doctor said that she has found that people who try other meds when they go on Medicare do not have very good luck.  I know that I am fortunate that my husband and I can afford the medicine.  Everytime I suggest trying something not so costly, my husband says it is worth any price to be able to walk!  He remembers what my pain was like before I was on Humira.  Do you have a supplement to your Medicare?  I looked at all of the plans and they seemed to all have the same coverage for the biologics, that was several years ago.  What really makes me mad is the drug companies, I was paying $5.00 a month before Medicare but now that I am on a government program they will not help.  They do have a program to help but a person has to be amost destitute to qualify.  I hope you can talk to your doctor and your supplemental insurance company and see if biologics could be covered.  Good luck and let me know how you are doing.

  • kristin3351
    kristin3351 shabarr

    Posted

    I wish I could help but I am newly diagnosed and have only taken one dose of methotrexate so far. Sounds like you have a lot on your plate and all that stress must not be helping how you feel. I take Tramadol for pain. It doesn't take it away but has helped to take the edge off so I can function. Other people I know that take tramadol can function normally but I get sleepy so if you get a Rx for it try it out on a day you don't have to drive etc. Good luck. I hope you can get things worked out so you are feeling better.

  • sherry29159
    sherry29159 shabarr

    Posted

    Shabarr get on biologicals! I was on Methotrexate for a few years but it stopped working and I was told I could go on bios. I have started on rituximab and 2 months since taking it I have no side effects. It has not done much for pain yet but it can take 3 months or more to work. I think any risks of such drugs just doesn't compare with the long term damage RA can do to you. It will just get worse. Good luck and keep us informed!

  • esther77657
    esther77657 shabarr

    Posted

    I am sorry to hear of the pain you are in. I have had RA for 28 years since I was 20.  It is only in the last 3 years that I have been put on Cimzia, one of the biologics.  I honestly feel as though I have been given my life back. I am pain free. I have been working as a primary school teacher for those 3 years. Prior to taking Cimzia, I would have found this impossible.  I was very frightened to start taking Cimzia, and I still have concerns about what it is doing to me unseen...I probably worry about that a little too much!  However, it has completely changed my life and I can honestly say that I have almost forgotten what RA pain is like. Life is hard to enjoy and live to the full with that level of constant pain.  I hope you get relief very soon.  In the meantime, try researching olive oil. It has anti-inflammatory properties. Taken daily, it may help you a little. All the best in your treatment. 
  • mary76396
    mary76396 shabarr

    Posted

    Hi Shabarr, I feel for you it must be so hard to carry on. I have it in my ankles feet toes wrists hands and fingers. I always say it's like walking with broken glass in my ankles and it must be very hard to be on your feet so long and looking after a family. I have been on MTX tablets for some time with no adverse effects but inflammation didn't go off so I had steroids for a while. I was then given Plaquenil tablets too. The inflammation levels still didn't lower and after a bone scan my specialist put me on Cimzia injections about six weeks ago. I've noticed my hands and feet are not so hot and burning as much but unfortunately my liver function was compromised so I've been taken off MTX and I've noticed an increase in pain levels since. I'm hoping that once the Cimzia builds up it will decrease again. I know there are risks with taking biologics and we must all decide for ourselves if they are worth it but for me I will try anything to get rid of this pain. I also take Endep to sleep at night as I find Tramadol too strong.

  • sinead7777777
    sinead7777777 shabarr

    Posted

    Hi Shabarr

    Sorry I haven't tried bologics yet but believe the mxt is still in your

    system as it normally takes a couple of weeks to kick in so would

    assume it's the same with coming out of your system.

    Hopefully you can get over shingles before pain becomes too bad .

    Bye the way I have had shingles and it really brings your

    system low so be careful that you dont come down with flus

    and viruses especially in the coming months.

    Really suffer with anxiety since I developed RA and

    I didn't seek help untill I found myself in a right

    State. Don't make my mistake make sure and treat this RA

    symptom too.

    Best of luck

    Sinead

  • patyrod
    patyrod shabarr

    Posted

    Hi shabarr.

    I am so sorry for you.  I don't know how you can cope with working and taking care of an autistic child while you have this disease.  Hopefully, you get some help from family and friends.

    I am 70 and was struck with two autoimmune diseases (RA is the latest one)  during the past year when I was already retired, so I am very lucky.  I had just started on methotrexate a few weeks ago when I got shingles (I wonder if the medication is related).  My rheumatologist told me to stop the medication until the shingles clears up.  Try to keep your stress level down if possible because that could bring shingles out again in the future.

    From what I understand, the joint damage caused by RA can be devastating, so I think it is worth taking any medication that could help.  As long as we are monitored by our doctors, medication seems to be the best way to go.

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