im worried

redpoppy
redpoppy Member Posts: 108
edited 13. Feb 2009, 04:28 in Living with Arthritis archive
im waiting for the funding to come through as im supposed to be starting on humira any time now.i have now changed my mind for many reasons and i dont want to go on it.my rheumy did say it was my choice.i had a word with the rhuemy nurse about 3 weeks ago and told her i was unsure about it.she just said have a think about it,but she still left the funding going through.now i dare not ring her i feel so bad,i keep putting it off every day.also she said they dont know what medication they going to put me on if i dont go on humira as ive been on nearly all of them.any help would be appriciated.thanks.

Comments

  • livinglegend
    livinglegend Member Posts: 1,425
    edited 30. Nov -1, 00:00
    you won't be the first and you won't be the last patient to change their mind on treatment. :? But you must tell your rheumy nurse as the medicine can then be allocated to someone else who could also be waiting.

    If you say nothing and don't take the medicine it's a load of money, time and effort wasted. If you feel under pressure to take it, then you may regret it when asked how you are progressing and it may colour your viewpoint.

    I would encourage you to phone up and discuss the situation and not get too stressed out about things. :):)

    Let us know how you get on. :):)

    Joseph 8)
    Josephm0310.gif
  • colinone
    colinone Member Posts: 1,039
    edited 30. Nov -1, 00:00
    redpoppy wrote:
    im waiting for the funding to come through as im supposed to be starting on humira any time now.i have now changed my mind for many reasons and i dont want to go on it.my rheumy did say it was my choice.i had a word with the rhuemy nurse about 3 weeks ago and told her i was unsure about it.she just said have a think about it,but she still left the funding going through.now i dare not ring her i feel so bad,i keep putting it off every day.also she said they dont know what medication they going to put me on if i dont go on humira as ive been on nearly all of them.any help would be appriciated.thanks.

    I think the medication road is long and hard for some of us and some suffer more than others with the side effects. I was once told by an old Rheumy that he would not treat me if I never took the methotrexate. I had
    Tried all other drugs apart from anti TNF. His stance was that he could not help me as he had tried all the other drugs and that NICE would not let me have any of the expensive drugs as I had not tried the Methotrexate.
    Now three years on I’m on Methotrexate 20mg injection Embrel 50mg injection, Prednisolone, Omeprazole, celebrex, Amitriptyline, folic acid,
    Metoclopramide anti sickness and buckets full of pain killers. That’s along with the treatment for the sore and dry mouth the creams and lotions and the antibiotics for the infections I get from time to time. Now the truth is that my condition has worsened over the past few years despite them trying to slow it down and I wont knock my Rheumy she is fantastic. Its just that I am so sick and fed up being sick and feeling ill with side effects of medication some days I cant even think or read or take anything in. When I don’t take the medication I am bedridden, at the moment I am just taking the metx embrel and prednisolone so that I could feel better over Christmas it was good for a while but now the pain is hard to bear. There must come a time when Rheumy does not know what to do for the best to help you, all I can say is try to get the progression of Arthur slowed down.

    Colin
  • woodbon
    woodbon Member Posts: 4,969
    edited 30. Nov -1, 00:00
    If you have made a considered decision, then you have a right to be respected, BUT I think you must tell the people treating you as soon as possible so that any funding can be re-allocated. They should respect your reasons and you should'nt be afraid to tell them. I do know that it is sometimes difficult to refuse help, but if you're honest, and brave about it, they should be understanding and helpful. Good luck :) and best wishes Sue
  • lindalegs
    lindalegs Member Posts: 5,397
    edited 30. Nov -1, 00:00
    I would say ring and tell them as soon as possible because the longer you leave it the more worked up you're getting about it. If you're sure that you've made the right decision then make the phone call and let them know. Write down what you want to say first if that helps, I often do, and once you've made the call you'll feel relieved you've told them. I'm sure that you've not gone into this lightly and they won't rant and rave at you for having changed your mind, they'll possibly just use the funding for 'someone else' and just think that 'someone else' may be very grateful to you:wink:

    Luv Legs :D
    Love, Legs x
    'Make a life out of what you have, not what you're missing'
  • oneday
    oneday Member Posts: 1,434
    edited 30. Nov -1, 00:00
    if theres any doubt in YOUR mind dont take them and dont take them to satisfy someone else either, its your life and your decision!
  • redpoppy
    redpoppy Member Posts: 108
    edited 30. Nov -1, 00:00
    hi,thanks everyone for taking the time to help me and give me advice.im having to rethink everything my arthritis is realy bad at the mo,im feeling realy depressed and dont know what to do for the best, i went to see my gp today and he advised me to try the humira as my hands are getting worse.im so tired too i cant get out of bed till 10am then it takes me about an hour to realy get going.im going to ring my rhuemy nurse tomorrow and have a talk to her again.i honestly dont know what to do for the best,when im in realy bad pain i do think about going on humira but the potential side affects realy scare me.
  • poppy30
    poppy30 Member Posts: 67
    edited 30. Nov -1, 00:00
    Hi Redpoppy,

    Just wondered how you were getting on? It's hard making a decision about which meds to take at the best of times, but if you are not on "top form" then it makes it even harder.
    I'm sure you've made a well thought out decision about Humira and I don't want to confuse you any further but I was taking Humira for two years and would be happy to share my experience if you think it might help. Feel free to drop me a PM...

    Poppy x
  • granter
    granter Member Posts: 24
    edited 30. Nov -1, 00:00
    redpoppy wrote:
    hi,thanks everyone for taking the time to help me and give me advice.im having to rethink everything my arthritis is realy bad at the mo,im feeling realy depressed and dont know what to do for the best, i went to see my gp today and he advised me to try the humira as my hands are getting worse.im so tired too i cant get out of bed till 10am then it takes me about an hour to realy get going.im going to ring my rhuemy nurse tomorrow and have a talk to her again.i honestly dont know what to do for the best,when im in realy bad pain i do think about going on humira but the potential side affects realy scare me.

    Hello
    I am in the same position as you were about Humira. I am really in so much pain and have had arthritis for 40 years so have had every other drug but the possible side effects are terrifying me. Would you mind telling me what you decided? I have told the docs yes but am having second thoughts.
  • redpoppy
    redpoppy Member Posts: 108
    edited 30. Nov -1, 00:00
    granter wrote:
    redpoppy wrote:
    hi,thanks everyone for taking the time to help me and give me advice.im having to rethink everything my arthritis is realy bad at the mo,im feeling realy depressed and dont know what to do for the best, i went to see my gp today and he advised me to try the humira as my hands are getting worse.im so tired too i cant get out of bed till 10am then it takes me about an hour to realy get going.im going to ring my rhuemy nurse tomorrow and have a talk to her again.i honestly dont know what to do for the best,when im in realy bad pain i do think about going on humira but the potential side affects realy scare me.

    Hello
    I am in the same position as you were about Humira. I am really in so much pain and have had arthritis for 40 years so have had every other drug but the possible side effects are terrifying me. Would you mind telling me what you decided? I have told the docs yes but am having second thoughts.
    ...hi,well ive changed my mind a few times over the 2and half months ive been waiting for the funding to come through.but ive decided not to go on humira i have weighed up everything and its not been an easy descion to get to.but i feel a weights been lifted off my shoulders.i know its works very well for most people and i stand by anyones descion to take it.we all have choices.i was also worried if in the future i would be turned down for it if i needed it but my rhuemy nurse said no i wudnt be turned down if i needed it in the future.im having a realy bad flare at the mo,but i still think i made the best descion for now.like you its the potential side affects that scare me and it being a new drug too.i know we wudnt take anything if we took into account all the possible side affects of our medications.all can say to you is you have to try and weigh up the pros and cons its not easy.my immune system is not good at the mo so thats one of the reasons i decided not to go on it.hope i helped you a bit to make an informed choice.i have read peoples experiances on here with humira and most have been positive.please feel free to ask me anything im happy to help.take care.
  • Wonkylegs
    Wonkylegs Member Posts: 3,504
    edited 30. Nov -1, 00:00
    well done for making a decision! it is SOOOOOOOOO hard to weigh up all the unknowns and come up with the way forward.

    I hope that they can find something that works for you, but it is good that you won't have given yourself no chance of funding in the future. After all, the info about the drug is increasing all the time, and in a few years some of the unanswerable questions at the moment may actually have been answered!

    good lluck!
  • redpoppy
    redpoppy Member Posts: 108
    edited 30. Nov -1, 00:00
    hi wonky,yes i feel like a weights been lifted as i made the descion and the nurse was fine with me and she said dont worry people have turned it down before.i felt guilty as i knew they were just trying to help me, that made it worse.and i know some people dont always get the funding for it too so i was grateful they offerd it to me.
  • redpoppy
    redpoppy Member Posts: 108
    edited 30. Nov -1, 00:00
    scottishlass wrote:
    Hiya Redpoppy,good to hear you got things sorted out and your feeling better about your decision...at the end of the day we have choices.(thankfully)
    Ive had my 1st assessment for Anti-tnf(and "passed")due my 2nd assessment next week,and my rheumatologist told me i would get more information about Etanercept after my 2nd assessment if I choose to go ahead with the treatment.
    Ironicaly tho,in the last few weeks i feel my MTX 25 injection is finaly having a better effect on my RA,so even if my DAS is still raised and confirming that my RA is still highly active I may also ask for a postponement on the Anti-tnf therapy...not because im worried about side effects(hopefully if i can cope with MTX then i can cope with Enbrel too,according to my rheumatologist they both carry similar risks anyway)But because ive read MTX normaly has a limited time of being effective,id rather get as much use from it as possible before switching,and then try Anti-tnf when MTX stops working..(if you know what i mean),anyway,il see how things are over the next week or so,but like yourself its not a decsion il be taking lightly.
    I hope they can find another solution for you,and i would assume the option of Ant-tnf will still be available in the future if you decide to give it a try.Good luck.
    hi scottishlass,im glad your MTX is working for you at the mo.i was on it for a few years but just the tablets never tried the injections.ive been on sulpha too thats the first DMD i took.i think its a good idea maybe to stick withMTX while its working good on you,then at least you have the option to try the anti tnfs at a later time.it is a very hard decsion to make i agree,we want to feel better but to do that we have to put these toxic drugs into our bodys.im still on leflunomide but its been increased from 10mg to 20mg.im just waiting to see if it kicks in and starts getting my arthritis under control,if not there is another coulple of drugs i can try ive been told.my rheumy nurse said i could still go on the anti tnfs in the future if i wanted,so im pleased the door has not been closed alltogether.good luck to you and hope you stay stable on your MTX. :)
  • woodbon
    woodbon Member Posts: 4,969
    edited 30. Nov -1, 00:00
    Hi,
    At the end of the day we have to make our own decisions about our bodies and the medics should help us by providing as much information as possible. Most of us now have the means, with the internet to research our conditions and medications ourselves. I am glad you have reached a decision based on your feelings and knowledge. Scotishlass, if you're OK with the medications your on at the moment, then postponing it is giving you the option of another drug to fall back on (no pun intended :oops: ) if at some time in the future you should need it.

    Good on you both for making your own decisions!!! :) Good luck! Sue

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