What do I do now?

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jenzie06
jenzie06 Member Posts: 708
edited 27. Jul 2014, 15:43 in Living with Arthritis archive
So forum baby (those who remember him) has a baby brother who is now 8 week old. I didn't get any respite of my RA through the pregnancy and developed gestational diabetes because of the steroids. Baby turned up 6 weeks early because my body had had enough (he was out of intensive care after 2 weeks and is doing really well).

I had 6 days post birth before RA flared. Now I'm struggling. Massively. Last week I went for allergy testing as I had anaphalatic shock with the last biologic drug. This time I had a reaction to the infusion (flu like symptoms, huge temp, headache, fast pulse rate - stopped looking when it reached 137 bpm) and the symptoms didn't start to go until they had stopped the infusion, the meds they gave to help didn't work.

They have said the options are now to take the drug I had the reaction to or desensitize me to the drug I had anaphalatic shock with. I had tried everything else.

I have even considered taking part ina drug trial but it was to test whether it was safe as well as effectiveness and I might be put into the placebo group. It's too risky when I have two small children to look after.

I've also got an overstretched tendon in my hand which keeps falling off the joint and gets stuck which bloody hurts. My hand surgeon was unwilling to do surgery on it as it hadn't completely gone (which it did two days later). So propect of hand surgery with a new baby. Great.

So I rang rheumatology to ask for help and was promised that they would talk to my consultant and ring me back today. I haven't received a phone call. I just wish they would help me.

Anyone got any suggestions other than going in to rheumatology and not leaving til someone does something (although what that is I have no idea).

It all takes time and no one seems to appreciate that there is a person in quite spectacular amount of pain waiting for the doctors to get on with it!!!!

Comments

  • stickywicket
    stickywicket Member Posts: 27,731
    edited 30. Nov -1, 00:00
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    I'm sorry things are so bad for you jenzie but afraid I can't help. I'd no idea there was such a thing as gestational diabetes let alone that it could be brought on by steroids. Is it permanent? Does it mean no more steroids ever?

    Post-pregnancy was a very tough time for me on both occasions. The meds which had worked before no longer did. Fortunately, I wasn't as far down the line as you and had options left.

    I think the delay in getting back to you might simply be the rheumatologist scratching his / her head and trying to decide whether your better option is to take the drug you had the reaction to or to desensitize you to the one you had anaphalatic shock with. A difficult decision all round and not one to be taken in a hurry.

    I'd ring again this afternoon if you've heard nothing this morning. Good luck.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • Starburst
    Starburst Member Posts: 2,546
    edited 30. Nov -1, 00:00
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    Welcome to the world, baby boy no 2! I'm sorry you had such a rough pregnancy and a frightening experience with him being early and an intensive care. (((Jenzie))) I'm glad to hear he is doing well now.

    I am so sorry to hear your RA continues to give you a rough ride. Are there any other biologics you can try or is the risk of reaction still high?

    I hope you hear from rheum too. Like Sticky said, they may be discussing options with the nurses and/or other consultants. In the mean time, are you able to take pain dullers to take the edge off?

    Take gentle care of yourself. We are here for you. x
  • barbara12
    barbara12 Member Posts: 21,281
    edited 30. Nov -1, 00:00
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    Oh Jen I was wondering how things were with you..another little boy, how lovely ..but so very sorry you are suffering like this , you will need all the help you can get have you any family till the rheumy rings you..I wish I could help more but I am not on any of the meds..please let us know how you get on...I do wish I could help more...((())) xx
    Love
    Barbara
  • tjt6768
    tjt6768 Member Posts: 12,170
    edited 30. Nov -1, 00:00
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    You really are going through a tough time my dear :shock:
    I wish I could advise but I just don't know how..

    congratulations on the two kids though..

    the very best of wishes and some gentle YBHs (Yorkshire Blokey Hugs) from me..
    e050.gifMe-Tony
    n035.gifRa-1996 -2013 RIP...
    k040.gif
    Cleo - 1996 to 2011. RIP
  • jenzie06
    jenzie06 Member Posts: 708
    edited 30. Nov -1, 00:00
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    Thanks for the replies.
    Well, I chased the rheumy dept and I'm off to see my consultant this week so hopefully I can come out with a plan. Keep your fingers crossed (if they don't hurt too much!). I'm hitting the painkillers as much as possible but I don't want to take the heavy stuff during the day as I'm solely responsible for two children and the painkillers make me nod off.
    Thankfully the gestational diabetes is restricted to pregnancy and I'm now totally fine (I keep testing it with cake and choc though!).
    Harry is chuffed with his brother (we called him Dillon) and is good with him. We even got a few hours sleep in one go last night!
  • stickywicket
    stickywicket Member Posts: 27,731
    edited 30. Nov -1, 00:00
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    I hope the rheumatologist can come up with an idea, jenzie. Well done on resisting the heavy duty pain relief. I know it's not easy with two little ones.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright