Grrrrrrr frustratated

In need of venting my frustration I started anti tnf embrel 9 weeks ago, things seemed to be going well till 4th injection a slight reaction by 6th body couldn't tolerate it, (I'm lucky that my RA team will fit you in quickly.) It was agreed I stop and would find something to suit me. However would need to allow 2 weeks for it to get out my system, Before they could introduce another drug, not sure how I managed the 2 week, back to clinic yesterday with yet another plan of attack, this time to increase MTX to 30mgs. Pharmacy at hospital don't keep that dosage, would have to order i which would take. 10 days they contacted RA unit who said need to take it ASAP so issued with 2 x 15mg injections (joy) till they arrive.

RA diagnosed 25 years ago luckily it went into remission till 3 years ago. Over 3 years Ive tried so many combinations of drugs without success. I try to keep positive and active, although at moment I'm neither.

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  • My heart goes out to you,hope it settles down soon. xx

  • sylvi thank for your kind words. love reading your blogs makes me realise I'm not the only one. keep well Anna

  • Good morning,

    Do you min me asking what reaction you had?

    I was at week 7 of enbrel when I got a huge reaction and my skin firmed up and went hard. I am now in the inbetween stage of waiting to see what they do next. Although I was told it takes 5 days to get out of your system??

    Hope the next drugs help you

    Good luck x

  • Hi Marnie

    Mine was a skin reaction, it started off as a raised red mark, which

  • Hi again Marnie.. grrr fingers not working this morning.. at injection site it became red, inflamed and the injection site became ulcerated. each week it got worse travelling length of my leg. They think i've an allergy to latex or mice (its laughable MICE!!!)

    Sorry to hear your having a bad time, hope they sort you out soon.

    Anna

  • Hi Anna

    The latex thing is very interesting as i get itchy when using latex gloves maybe I am allergic to latex too. Although nobody ever asked about an allergy to it.

    Mice!!! Kind of scary what the drug contains if they think that's the allergy.

    All very interesting. I love this site as I would not know half the stuff I no now.

    Hope your sorted soon

    Marnie x

  • Hi, I so hate to read of you young ones having so much trouble with getting meds that work well. Was wondering what did you take 25 yrs ago when you went into a remission until just 3 yrs ago?

    I know the same thing might have no effect now, but I'm thinking there mightt be any number of us looking for something to bring about a remission! Keep on keeping on, Loret

  • Hi Loret, I wish I had an answer for you , it just disappeared as quickly as it arrived, as I said until 3 years ago when it returned with vengeance causing me to be hospitalised for 10 days. Since then its been a constant struggle I know once they find the right combination, things will improve.

    keep well

    Anna

  • Good Morning Anna,

    So, now you have 30mg MTX, weekly? And waiting for another tnf inhibitor. Do you have adequate pain meds to cover your pain during the day?

    Good to think positive, keep the faith in the system, and vent here whenever you need to. But, if you are in pain that keeps you from normal daily activities, you need to holler! At the Dr.

    My "endurance meds" I call them, do keep me going, but sometimes I get busy and forget them until it's too late, then I am in so much pain, in my back and legs and hands and feet, all at once. Then I just have to squirm, I can't sit still, can't relax and keep my legs still. Restless leg syndrome kicks in, then I have to take the muscle relaxant, which makes me sleepy, so I'm done for the day. Hate that.

    I really need a better system of reminding me to take the doses at 4-5:00. I live alone, so atleast I don't have to prepare meals for anyone, so I can go to bed for awhile.

    Biggest problem is if I am out in the afternoon, I miss taking the meds, by the time I get back home I can hardly walk, even with the walker, and I don't want my friends to know I was that forgetful, or unorganized, or just plain stupid :)

    My closest friends are all arthritis patients, so we often compare situations and can laugh at some of the things we have to do to accomplish somethings.

    Best of wishes to you, I sure hope you can get more comfortable and feeling better every day. God bless. Loret

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