Another Scary Update :(

Posted , 5 users are following.

Hi all,

I've just returned from my Rheumy appointment. After taking two injections of MTX with newly raised dose (12.5mg) a week. Liver enzymes were OK according to the latest blood test. joints pain and swelling is still up and down ( seven days good, five days in agony). He decided to raise the dose again to 20 mg. I'm thin (42 Kilos) and generally weak . the same old question: Will I survive this dose, I'm scared and crying. I don't know if I'm going in the right direction. He said dose will be reduced if I get better, do you think so???

Hala

1 like, 8 replies

8 Replies

  • Posted

    It just depends on your body, Hala. The MTX definitely makes me more nauseous than the Leflunomide did. I had no nausea on 10mg of Leflunomide, but got a little bit when it was increased to 20mg. I had nausea with 12.5mg of MTX and even more so now with my dosage increased to 15mg. It lasts for 3-4 days after taking it for me. I know it's frustrating because we already feel bad enough without having to deal with the side effects of the drugs. I wish I had a magic answer for you, but just know that we're here for you and we all know what you're going through. Try to keep positive.

     

  • Posted

    Hi Hala...I cannot give you a lot in advising re your medications, as I do not suffer from Rheumatoid Arthrites, or take Prednisone/Methotrexate;  however, wondering is there  not an anti-emetic that docs can prescribe to go with these meds?  I do believe the Old Remedy of either Parsley and Ginger, also working on Nausea....it certainly worked for myself and daughters with early Pregnancy...it may not remove it completly, but alleviate some of the symptoms?   As you say, you really are feeling  desperate emotionally;  perhaps it maybe time to take some measures for this....I have used the aid of a Psychologist/counsellor, just to have some-one being there for me, to listen and encourage me on my road...I have seen tooo many people try to cope on their own (with whatever issues they are facing in their lives, and not succeed...).  When we have a Chronic Medical Condition, there are a lot of Extra Issues that we face...one big one being Finances and lack of understanding from others....this to me, calls for someone specially trained to guide us, and keep us emotionally healthy....please keep blogging on this site, and let us all know, even daily, how you are coping, and all ups and downs...for even as the other old saying goes "a problem shared, is a problem halved/eased"...talk again soon (and of course, let me know if this blog didn't  help, as I would hate to think that I am making things worse for you)...Bron
  • Posted

    The injections by-pass the stomach and are supposed to prevent nausea, so you shouldn't have to worry about that – I hope not anyway!

    And of course the dose will be reduced as you get better... that's their job – to monitor your progress, your blood reports, your symptoms... and adjust the treatment accordingly.

    And as to your weight... if the rheumy thinks your body can take that dose, then trust her/him. It's not such a big dose. I've been on higher than that for over a year and I'm still here (so far!).

    Just a little less hair!

    I can tell from your posts that you are very anxious about the whole treatment and I want to reassure you... It's hard enough for you to be suffering so much from the pain of the disease itself not to have to add to your already heavy load an anxiety about the treatment you're getting.

    I don't know where you are located or why you feel so mistrustful, but now you've decided to take the pharma route, how about you let the doctors do their thing and trust them to take good care of you? If some treatment is not working perfectly, there'll be alternative ways he'll figure out for you.

    It's always trial and error with this condition, and it does change over time.

    We are called patients because we must be patient. See if some yoga or meditation can help you relax.

    I wish you well...

    • Posted

      Thanks Light, I'll keep your words in mind. They make a lot of sense for me.

      I'm located in Egypt where there isn't a proper decent health care system. Hope this explains  bit why I'm usually anxious and mistrustful. Doctors here can be very mistaken !

    • Posted

      Ah. I understand.

      I've never been to Egypt, but I can imagine.... Maybe, if you have a choice, look out for those medics trained in the US, Europe or Australia.... I bet there are many.

  • Posted

    Hi hala, I take 20mg mtx weekly (tablets),    I can still remember the panic I felt when my dose was raised, from 15 to 20 mg , it took me all day to build up the courage to take the higher dose -  I was convinced I would not survive, I think the thing that calmed me down was after I had had my first blood test after the raised dose - I tend to trust the fact that I am monitored whilst taking these tablets.  

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