Update on my infusions

i had my 5th infusion yesterday and got told that it might not be working as im still in alot of pain and having alot of flare ups and it dont help with my baby who is going to be 2 next month.

Have been told to get in touch with my rummy doc to get an appointment but not sure what else they can do as im on alot of tablets as it is and dont know what other anti tnf's are or would be availble to me.

I just feel so ill all the time and my joints r so sore .

7 Replies

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  • I know how you feel as i am having a flare myself. Its no fun is it. Sending you cyber hugs. sylvi. xx

  • Hi Charhunt,

    I do urge you to make that call, and explain that it appears not to be working, and the amount of pain you are in. As you have a young child is there anyone you can call on to give you some rest for a couple of hours, also to enable you to accept any cancelations that the hospital may have.

    I really do feel for you at this time, treat this blog as a big hug to you from me.

    Take care,

    Elaine

    xxx

  • Hi Charhunt,

    For what it's worth I agree with Elaine - ring them asap and tell them that you are not coping with so much pain and a toddler to look after.

    Have you been referred to an OT to assess your needs in the house at all? If not then it may be worth asking for a referral to the rheumatology OT in the first instance and maybe then the social services OT who may be able to recommend someone to come in and hoover or do some shopping for you for a short while until they get your RA settled.

    Don't despair - there are a lot of effective drugs out there still.

    Take care

    Judy

    xx

  • hi guys,

    Thanks for all your comments im deff going to call them and explaine i just hope that it dont take to long before i receive a new drug coz this pain is unreal and it is very hard with my little and my husband at work all day.

    xx

  • Is it possible for you to have a steroid injection? That may help you.

    It's hard going when in normal health when looking after a young baby so really feeling for you.

    Judi xxx

  • Hi Char, You have already gotten exxcellent advise here. Just be sure to tell them when you call, how bad it is and ask for a cancellation apptmnt ASAP. Be assured, there are many more drugs available and combinations of drugs that have helped others, your Rheumy will know that. Since you are already on an anti-tnf, he may just switch you to another. I had to go through Humira for several months, and then Enbrel for several more months, then got Simponi, once a month injectable. It makes all the difference in the world! Along with MTX and Leflunomide. Wish you the best combo they can come up with! L.xx

  • thank you every one you have all been so kind and given me some really good info ive had to leave a message with the secutary so im just to hear back from them to find out whats gunna happen now x

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