Could I really be this unlucky?

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  • kentishlady
    kentishlady Member Posts: 809
    edited 30. Nov -1, 00:00
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    Hello Jenny. What a day you have had. I can imagine it must have been an awful shock for you (as it would for any of us), but you got through it and will now be able to concentrate on the treatment on the way to getting better. Rest as much as you can, take care of yourself and remember we are all with you - all the time. Am thinking of you so much. Beryl. Xx (((())))
  • Toots
    Toots Member Posts: 483
    edited 30. Nov -1, 00:00
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    Thinking of you Jenny, I don't think anyone would be ready for what you've had to cope with so far. Hugs x
    Toots x
  • Megrose489
    Megrose489 Member Posts: 776
    edited 30. Nov -1, 00:00
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    A very difficult day, Jenny. Take care of yourself. Thinking about you.

    Meg ((()))
  • stickywicket
    stickywicket Member Posts: 27,719
    edited 30. Nov -1, 00:00
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    A bit of a mixed bag there, Jenny, but good that all is sorted. I fully get your attitude about the well-wishing of colleagues being 'nice but tough'. Yes, I think I'd have been glad to be able to avoid it all too.

    I found the first sight of the chemo unit a bit daunting too for the reasons you give. However I found that the reality, for me, wasn't so bad. I didn't lose my hair which helped psychologically.

    I do hope today has been a bit better for you. xx
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • thistlegirl
    thistlegirl Member Posts: 229
    edited 30. Nov -1, 00:00
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    well today started with my pet scan at 10am, I didn't sleep much last night so I was very tired, I think I fell asleep in the scanner. I slept for 3 hours when I got home, still tired but better. I had another call with my gp and she has signed me off for a month to start with. She has also told me that I need to try to be a bit selfish for now and focus on me for a while, I am going to try.
    tomorrow's plan is brunch with my friends (if I wake up in time) then more sleep. Then I think some cuddle time with my baby niece and 3 year old nephew is called for.

    Thanks again for being in my pockets, it is more waiting now til the 24th for all the test results and then I will know what I am dealing with.

    Jenny
  • kentishlady
    kentishlady Member Posts: 809
    edited 30. Nov -1, 00:00
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    Hi Jenny. Glad yesterday went as ok as possible. Do hope you enjoy some 'me' time and being with your little niece and nephew. Take care of yourself. Beryl. (((()))) xx
  • stickywicket
    stickywicket Member Posts: 27,719
    edited 30. Nov -1, 00:00
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    I hope the brunch and cuddles are going well, Jenny. I am thinking of you.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • Toots
    Toots Member Posts: 483
    edited 30. Nov -1, 00:00
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    Just popped in to send more hugs your way Jenny x
    Toots x
  • thistlegirl
    thistlegirl Member Posts: 229
    edited 30. Nov -1, 00:00
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    I am in a grump big time. It has been a long time since I have been on steroid tablets, wondering if they are the culprit. I am only on day 3, I have been really tired and a wee bit moody, will get out of the house tomorrow and hope my head clears. Ok it has been a hell of a week and maybe my body is just shutting down to recharge but don't like being grumpy :(
    It has been over 10 years since I have been on these tablets and then it was nowhere near this dose. Anybody else had this on steroids and any suggestions?

    Jenny
  • Boomer13
    Boomer13 Member Posts: 1,931
    edited 30. Nov -1, 00:00
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    Hi Jenny;

    Yes, steroids do this to me and more. Namely, anxiety alternating with periods of depression/grumpiness. I haven't found a solution other than firmly blaming the drug and waiting for it to subside.

    I agree it's horrid. It happens to me with a much lower dose, so I can only imagine what it must be like for you with the dose you're on..... :shock:

    Hope you are able to rest,

    xxanna
  • phoenixoxo
    phoenixoxo Member Posts: 625
    edited 30. Nov -1, 00:00
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    Hi Jenny,

    Well done for getting through everything :)

    Sorry my response comes a bit late – I'm having a bit of a flare-up at the moment. I'm with Anna on the steroids question. The highest dose I've had is 30mg, just half of what you're taking, but I found it had quite an effect on my mental health. Every mood I had was exaggerated, whether happiness, sadness, irritation, anxiety... and for a while I became 'hypersexual' :oops:

    It might help you just to be aware that what you're feeling is due to the steroids, but it might also be worth having a chat with your GP for further reassurance. And chatting here's always good, of course :)

    Best wishes,
    Phee
    PsA (psoriatic arthritis) and other things since 1990. Happy to help when I can :-)
  • dibdab
    dibdab Member Posts: 1,498
    edited 30. Nov -1, 00:00
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    Hi Jenny, sorry I've been on holiday and only just caught up with your posts.
    Steroids keep me awake 24/7 and make me as grumpy as sin! :shock: Maybe a chat with your GP would help find a solution?

    Just keep focussing on you now and let the family and friends walk beside you on the journey, they will want and need to be as involved and supportive as they can. Baby cuddling at every available opportunity sounds like the perfect soother.

    Just wanted to send some more positive thoughts and hugs
    {{{{{{{{{{{{{{{{ }}}}}}}}}}}}}}}}

    Every blessing

    Deb xx
  • salamander
    salamander Member Posts: 1,906
    edited 30. Nov -1, 00:00
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    Hi Jenny, just catching up with posts and was really sorry to read your news. I wish you all the best with dealing with everything your diagnosis demands. Your gp sounds fantastic and the advice to be a bit selfish seems good advice to me.
  • stickywicket
    stickywicket Member Posts: 27,719
    edited 30. Nov -1, 00:00
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    Go easy on yourself, Jenny. You have multiple reasons for being in a grump any of which are perfectly valid. ((()))
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • thistlegirl
    thistlegirl Member Posts: 229
    edited 30. Nov -1, 00:00
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    Hi guys, been a long week of waiting but it has also been really nice not to have any appointments to get to. So I have been hanging out with friends and family, and sleeping lots.

    One more day then I get to find out if it is worthwhile paying to get my hair recoloured-serious regrowth happening but not shelling out for a colour and cut if I am going to loose it!

    On a positive note the steroids are definitely shrinking the lumps which is brilliant. They have all reduced to about half their size but until Tuesday I wont be able to celebrate too much until I know what they found in all the scans....

    Thanks for the hugs as always

    Jenny
  • Megrose489
    Megrose489 Member Posts: 776
    edited 30. Nov -1, 00:00
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    Great that the lumps are shrinking, Jenny. My thoughts and good wishes are with you for tomorrow. Take care.

    Meg
  • stickywicket
    stickywicket Member Posts: 27,719
    edited 30. Nov -1, 00:00
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    That must give you a good boost, Jenny, to visibly see them shrinking. I shall be thinking of you on Tuesday. I do hope the news is good. Well done, again, on how you are coping with all this.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • Toots
    Toots Member Posts: 483
    edited 30. Nov -1, 00:00
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    Good to hear the steroids are working, and I have to say that I admire your common-sense approach re your hair. Sending hugs, will be thinking of you on Tuesday x
    Toots x
  • kentishlady
    kentishlady Member Posts: 809
    edited 30. Nov -1, 00:00
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    Will be in your pocket tomorrow and thinking of you. Do hope the news is good for you. Take care. Beryl. (((())))xx
  • phoenixoxo
    phoenixoxo Member Posts: 625
    edited 30. Nov -1, 00:00
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    Hi Jenny,

    That's great news, that the steroids are shrinking the lumps. Sleeping sounds positive too, as does spending time with your family and friends. And that's a good plan, to wait and see about what to do with your hair. Like the others, I'll be in your pocket tomorrow, hoping for the best :)

    Best wishes,
    Phee
    PsA (psoriatic arthritis) and other things since 1990. Happy to help when I can :-)
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    Hello, I apologise for not being on your thread for a while but I have read through and caught up. I am pleased that the steroids are easing matters and I hope you are coping better with the dose. I have never had a high dose (only 20mgs per day is my record) but I know that others have struggled with the bigger levels. They are tricky little devils - they help but can also harm.

    I am pleased that you are taking things a little easier now, your body needs that - maybe that's why you're sleeping so much? Or could the blasted arthritis be stirring? I am thinking of you. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • thistlegirl
    thistlegirl Member Posts: 229
    edited 30. Nov -1, 00:00
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    well things are looking positive. The doc found no more lumps in the scans he did and he is very impressed with how much the lumps have shrunk already. I am to continue with the steroids for 6 weeks then they will do the scans again and see if they need to do the chemo. It would be nice to beat his without chemo but more waiting until I find that out, fed up with the waiting.
    When I beat this I will be reviewed every 3 months for 2 years then further apart after that as recurrence happens more earlier on.
    The doc does not want me to go back onto Abaptacept ever. The first lump appeared 5 months after starting it and though he can't prove a link he doesn't like coincidences. He said he wants the rhumy docs to look at alternatives, the problem is that I have already tested them on this front, this was the alternative, I tend to react badly to meds and they were running out of options. I am holding on to the fact that there is always more meds coming out and I will be there to try them. I have also improved my health through diet recently and my energy and mobility were improving before they brought in the steroids so maybe I can try some of the drugs that were not so successful before on my new improved body?

    getting tired now, hoping sleep will come easier but the foc says that the steroids can cause wakefulness through the night. that explains why I am not sleeping like a log as I usually do, hopefully I can relax some more now.

    jenny.
  • Megrose489
    Megrose489 Member Posts: 776
    edited 30. Nov -1, 00:00
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    So pleased to read your post, Jenny. I've been thinking about you. It's good news that things are so positive, but waiting is awful, I know. I've got OA, so don't really know anything about meds, so I hope that they can sort that out for you.

    Take care of yourself.

    Meg
  • stickywicket
    stickywicket Member Posts: 27,719
    edited 30. Nov -1, 00:00
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    Your positivity does you great credit, Jenny, and is so encouraging for others.

    I had no idea that steroids alone could be used to shrink the lumps but it's wonderful that yours are responding so well.

    I think your attitude of 'holding on to the fact that there is always more meds coming out ' is a good one too. As you may know, I've had RA for over 50 years and I always seemed to be test-driving new meds in my earlier years. That was how I viewed things too – by the time this one fails there'll be another. There always was.

    The only time I've ever struggled much with sleep was when on large doses of steroids pre and post chemo. It passes.

    I think your healthy eating regime is paying dividends and I hope it continues to do so. Well done.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • salamander
    salamander Member Posts: 1,906
    edited 30. Nov -1, 00:00
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    Very good to hear the steroids are helping. I always sleep badly on higher doses and sometimes take a pill to help.

    I sympathise with your position re meds. I've been told I can't have anti-tnfs ever again due to side effects but my rheumy was very positive, saying there are alternatives (not quite sure what but will wait and see what she suggests.) I know there is a one-off drug currently being trialled at Kings College Hospital. Arthritis Research has the details on their website under 'research'. You might want to take a look.

    Keep up the positive attitude. You are an inspiration.
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