Could I really be this unlucky?

Annieboo87

Hope all goes ok with gp today. And agree some tlc with family would be good.

dreamdaisy

This sounds like the steroids to me, so yes, go and see the GP and then go and be with your family. There is only so much we can do for ourselves by ourselves, you need their support at the moment; rest assured you have ours. DD

thistlegirl

the gp said all ok, bp and pulse normal. definitely the steroids causing this and to keep an eye on it for the next few weeks- more concerned if it were lower moods than hyper. but hey if I feel this good on only 3 hours sleep last night then I will get a lot more done!

I went out with my sister but then ended today at a&e with my dad again, now diagnosed with some calcification of an aurtury and aortic fibulation, spelling unsure. so getting him on warfarin and some more test but it is good to get a name on it and next steps etc. I am going to stay here for a couple of days and see how things go.

I still feel the same as yesterday but now expect it and know not to worry. I have some more knitting to do and some healthy cooking to do for my dad!

Jenny

kentishlady

Hi Jenny. Am glad you got checked out by dr and all ok. Tablets do very queer things at times, don't they? You are doing so well. Just wanted to send you a few (((()))) to help you along. I often think about you and wonder how all your handicrafts are progressing. Do hope they can get your Dad sorted out ok. Enjoy your time with your family this weekend. Take care. Beryl. xx

Annieboo87

Glad your appointment went well. Sorry to hear your dads unwell again but least as you say he finally knows what he is dealing with, i hope with the next steps and the medication it helps him and as will your healthy cooking im sure.

Enjoy your crafts.

Take care ((hugs))

thistlegirl

So I went to my parents for rest, distraction and keeping busy. My weekend was as follows:

Recap: Friday dinnertime time Dad goes into A&E with heart issues-gets diagnosed and discharged a few hours later.

Friday night: I take a sleeping tablet after only getting 3 hours sleep the night before so I sleep through til Lunch on Saturday while the parents go out shopping

Saturday afternoon: I am nice and rested knitting away-relaxed and happily occupied.

8pm Saturday: my Dad slices his hand open with a Stanley knife :roll: :roll: Typical DIY injury, he said he wasn't paying attention and he feels very silly.
So I head back to A&E with him within less than 24 hours from when he was last there.
We timed it well it was nice and quiet, all the sports injuries had left and there was only 1 drunk passed out in the waiting room. We were sent home at 10:30 with instructions to be at another hospital for a plastic surgery check and stitch at 8am on Sunday morning.

Sunday: I got up at 6:30 after no proper sleep, and drove my dad to yet another hospital and sat around with him for 4 hours waiting on getting it fixed. It looks like he got away with no nerve damage so it is stitches and a bandage for 2 weeks

My sister came out to check on him and then drove me home so I could finally get some rest.

I am tired, my mum has never done well in hospitals so there was no question of her taking him. Thankfully the hyper feelings from the steroids have kept me going through this weekend but dear lord my Dad is making this really tough-3 A&E visits in 3 weeks. He has always been really healthy and active but he is pushing 70 and not slowing down. We are early on in treatment and diagnosis and he has said he needs to get healthier so fingers crossed once the dust settles things improve.

I am only beginning to see how my diagnosis has/is affecting my close family. They are doing great with me but the moment anything else happens that they need to deal with there is no extra energy/patience/mind space for them- and they have been hiding it from me. Although to be fair my dads A&E adventures are taking it to the extreme!

Cancer check up on Tuesday so I will be tucking you all into my pockets for the trip.

Maybe tomorrow will be a quiet day.......

my sleeping tablet awaits

Jenny

stickywicket

I'm sure when you planned your 'quiet weekend' this wasn't exactly what you had in mind. Just as the world does not stop because we have arthritis, neither does it stop because we have cancer plus arthritis. Other problems keep arising and having to be dealt with. You have dealt extremely well with these, Jenny, but it's not at all relaxing for you. I think your reasoning, about the family having 'no slack to cut', as it were, is probably spot on. I hope you can sleep tonight and that the next appointment is a good one. Count me in.

kentishlady

Oh dear, Jenny. Not quite the weekend you had in mind! You really are amazing the way you are coping with everything. Please don't try and do to much. You do need to look after yourself as well as others.

I hope your appointment on Tuesday goes well. Will be in your pocket. Let us know how you get on. Do hope you can get some sleep tonight.

Beryl. xx (((())))

Toots

Hope you get a really good sleep Jenny, you need the rest after all those adventures! Will be in your pocket on Tuesday. Hugs x

Annieboo87

Hope you get a good rest and have a peaceful day tomorrow. Hope ur dad goes on alright now and that all goes ok for u on tues. Im def available for pocket duties x

thistlegirl

I just wrote a long post and it lost it :x

this is not a cancer question it is about good old Arthur :roll:
question about coming of all my Juvenille Rheumatoid Arthritis meds, well more like not starting another ine straight away.
I am still taking codydramol 30/500 2 tabs, 2 to 4 times a day as I am pretty sure I am physically dependant on them and adding in withdrawal into my life at the mo was not helping things-
here it is again, take 2.
I am at my check up tomorrow for cancer and am thinking of the future.
I have now been abatacept infusion free for 3 months but on 60mg of steroids. what happens when the steroids stop?

I have been heavily medicated since I was 5 and pretty much solidly since my late teens. 3 years ago they moved me off infliximab and onto adalimubab and I completely seized up and was hospitalised for weeks, first time in hospital since diagnosis as a baby. and I have always needed painkillers on top of Nsaids, infusions etc.
3 years ago the moved me from infliximab to adalimumab for no reason I could see other than cost and I was hospitalised for weeks as I seized up so badly- is Arthur still like that now if he is set free?
I have sometimes thought about what my juvenile rheumatoid arthritis would be like without the meds but with the infusions I know they hang around in your body for a while and there is never a good time to mess with your health. but now I have this opportunity to not jump straight into another med once they stop the steroids and once I am hopefully given the all clear for the cancer. fingers crossed no definitive results for weeks/months yet.

I have been on a health regime and lost 3 stone in 3 months. Other people that have been following the same regime have reported some improvements in their symptoms- I know this would be close to miraculous but I do wonder. for the first month of my diet I had no infusion and no steroids in my body and I did feel better than I had previously- more energy and my joints were not seizing up as bad as previous times when the infusion was delayed due to illness etc. I am pretty much eating vegan food 80% of the time and avoiding processed foods.
I would like to see how my now thinner, healthier body behaves with arthur before I jump into yet another medication.
I am a strong believer in modern medicine but I do feel I have not been giving my body the best fuel to fight Arthur and I know my excess weight didn't help.

my questions are:

has anyone done this before?
did you get any support from your doc?
how long do steroids hang around for in your body?
how long for abatacept infusions to clear?
can I get a list of what meds I have been on, how long for and why I was removed? - normally side effects or just not working enough.
Do you think I am mad?

I will easily go onto a new med if I need it but at the moment what is my untreated body going to reveal?

I would appreciate any advice please, this is not something I need to decide yet but it has been floating around my jumbled head so I though best to get it on here before it escapes into the mist.

thanks
Jenny

purpleowl

Hi Jenny,

I know nothing about meds but just want to say a big WELL DONE for loosing the weight, it definitely helps. I wish you well with whatever decision you make about your meds, my brain hurts just thinking about all those unfamiliar drugs! :shock:

Hope you managed to get a good night's sleep.

I will be thinking of you today,

Trish xx

stickywicket

OK Jenny, I'm diving in.

1. I don't think you're mad. I think you have proved, over the last few weeks, what a very sane and sensible person you are.

2. I've no idea how long abatacept takes to clear from the body as I've never taken it. I suspect it may depend on how active your disease is currently as to how soon you notice its absence.

3. I also don't know how long 'the steroid effect' lasts. I'd guess that depends on many things – amount taken, for how long etc.

4. The list of meds you've been on etc will be part of your medical records and I believe we're all entitled to see our own though how you would go about it I don't know. I imagine they ought to say when you were taken off some and put on others.

5. I've never been off meds except when pregnant. In the first I didn't need them and, in the second, gawd I needed them but, at the time, couldn't have anything. They docs wanted me to go back as soon as No 1 son was born but I wanted to breast feed so I held out as long as possible – 3-4 weeks, by which time I was begging to go back on. No 2 son got the colostrum only. I read the signs, knew what was coming and took the meds.

I can fully understand why you would want a meds break. I think you need to talk it over with your rheumatologist and take it from there. Me? I don't ever want another :roll:

By the way, well done on the weight loss. It has to help, not carrying extra weight about but I've never been overweight so can't tell the difference.

dreamdaisy

I can't help but I can tell you that I have always needed pain relief despite the single, double and now triple therapies. I keep them to the absolute minimum, not from the fear of addiction but just to keep open the stronger options when things are truly tough.

You are a strong woman, there's no doubt about that, but with your long history of medications then no wonder you are a tad confused by these various issues. I have always been told that drugs need the same length of time to fully leave one's system as they might need to take effect, i.e. at least twelve weeks. That can seem like an unbearably long time - I remember my three-month spell on nothing, it wasn't fun. DD

thistlegirl

update from the cancer doc today:

he is very impressed with how the lumps are going away but won't know for sure until scans are done. they will do a ct before my next check up in 4 weeks but to be sure they should do a PET scan ( Radio Active) and if steroids are in my body it doesn't work so they need to wait 6 weeks before they can do that one-the definative/clear one. I got a bit confused on the timings at this point 6 weeks from end of steroids would take it into the new year, if he meant from now it would be before Christmas. more waiting either way but I am getting better at it. :roll:

So I keep the 60mg of steroids for 2 more weeks then taper down and should be off them by the last week in November. Hopefully my body will balance itself out once I start to reduce the dose. Especially my brain!

Overall a good check up but nothing definitive for now- trying to be patient honest! :?

I see my rheumatoid doc on the 7th Nov so I will discuss with her my thoughts about "running on empty" for a while and see what she thinks.

on another positive I was at my eye doc today and he said they have never been better. I have had Iritis and uveitis since i was 18 and have been taking daily eyedrops to treat them. For the first time since then I can cut down the drops to virtually nothing- the wonders of steroids! I will need to up the dose once again but I may even put mascara on one day!

thanks as always for your help and hugs, I read through some of the previous posts and I would like to say again how much you have supported and helped me through this tough time. Though I hope my brain does return to normal soon some of my posts were a bit of a ramble :oops:

(((((thank you))))))
Jenny

Annieboo87

Glad things seem to be going well hope when the scan results are back they are a reflevtion of this. Your posts arent rambles at all and even if someone thought they were you out of any of us deserve a good ramble to get it out of the system and by doing so it does lead to advice so its a win win.
I would imagine he would mean 6 week from finishing the steroids if ur system needs to be free of them for the pet scan.
Great news on ur eyes may be able to put bit of mascara on over the xmas holidays at some point who knows.

Take care (hugs)

X

kentishlady

Am so glad your appointment went well, Jenny. Was thinking about you and keeping my fingers crossed. Onwards and upwards, (as they say). Just keep doing what you are, it's obviously working for you. Take care. Beryl. (((())))xx

purpleowl

Hi Jenny, I'm so glad you had a positive appointment and an improvement with your eyes too, wonderful!

thinking of you,


Trish xx

Toots

So glad you've had a positive result so far Jenny! Keep up the good work ;-) x

dibdab

Hi Jenny- sharing the joy of a good appointment- as others have said, you've been in my thoughts and prayers. Your posts haven't been a ramble, rather more an honest and courageous reflection of what you're coping with.

Well done on the weight loss too .

Deb xx

barbara12

Hi Jenny
Just reading through some of your post, you have gone through and still going through so much in your young life..you might not think so but what an inspiration to others you are,,,hopefully all these post will act like a blog and really help you .
You take care ((((())))xx

DebbieT

Hi Jenny,

My apologies as it's been a while since I've posted to you tho ure never far from my thoughts!! (((( ))))

I'm glad you had a positive appointment with ure oncologist & ophthalmologist, bonus eh

Thats an amazing weight loss, congratulations. You must be very proud of ure success

I can empathize with how ure family feel wen 'other' things happen & seem unable to process or cope. It may look & perhaps even be like that but it will be getting easier. I'd put money on it that they're all determined not to show how devastated they are for you & themselves, coz of course it's happening to them too. Do they argue in front of you etc? I ask as I know wen we've had family members that have been very poorly we all seem to make silent pact to never argue or fall out in front of the 'ill' one!! So stupid but it always happens in my hubbys & my own families

Wot Barbara has said about this thread being a blog ... I wonder if you might want to consider printing it out wen uve finished the last post. It's something wonderful you could draw strength from in years to come for all sorts of reasons, Just a thought ..... Then again it could equally be a time ud much rather forget

((((((Strength))))))

Xxx xxX

thistlegirl

why do I try to plan anything :x

I was meeting up wih friends tonight at their house but have been really off all day. weak, wobbly, shackey I would say the worst i have felt during this. I was round at my sisters so I wasn't exactly resting but I went on strike when I felt bad.
I was not going to cancel tonight so I managed an hour and a half then started to feel really nauseous- I don't throw up I think my body thinks too much of food to waste it, so I knew it was time to go home.
I have booked tickets for the cinema tomorrow afternoon to see Enders game, I read the book as a kid and for the first time ever have been geeky about waiting for the film coming out. I am going tomorrow no matter what!
I hope I will wake up tomorrow and all will be back to "normal" ...........whatever that is.

Jenny

thistlegirl

you know you have not been sleeping well when there is a cat glaring at you from thw the bottom of the bed trying to sleep :roll:

I think I got a few houra rest before I woke up pretty much with mouthful of sick.... my stomache feela like pure acid. the doc wanted ro give me tablets to protect my stomache from the steroids but when I said I was on esomeprazole 40mg he said that was fine. my stomachehas been wrecked by 2 years high dose brufen when I was 13 and then all the nsaids after that. I went through months of barely eating when I was mid 20, thats when they banned me from nsaids. I lost lots of weight but wouldn't recommend it as a weight loss plan.
I don't know why this is happening now I have been on the steroids for 4 weeks now, only 2 more to go at this dose. :x I keep telling myself that I could be going through a lot worse, if this is what I need to deal with to beat cancer then I should thank my stars and get on with it. I guess that I why I came on here, to remind myself of that

I like what you said about keeping this as a blog barbara, I will look into that on a better day.

debbie I would hardly see some of my family if they agreed to not argue in front of me! lets just say there are strong minded people who like to have the last word. ...yet we still all live with 15mins of each other and meet up most weekends- freakish I know!
I have always been the "fragile one" they did keep things feom me when i was younger. They see me as the most calm, empathetic, sensible on who they would want on their side, I am still used to offload onto at times but have perfected the "hmm, aha, yes" on the phone when needed

It is 5.30am, I have been wide awake since 2am, seriously considering giving up and just getting up and doing something, cleaning comes to mind but I am sure that is just lack of sleep.

I took my morning esomeprazle tablet at 3am hoping it would calm things down but no luck so far, not dealing with doctors this weekend if I can help it.

thanks for the good thoughts, heres to a better day.
random thought if this happened tomorrow nifhr when the clocks fo back it would have been worse!

Jenny

stickywicket

Just a thought, Jenny. I think my stomach might be the twin of your for exactly the same reason - years of anti-inflamms before the stomach protectors emerged. Every time I started throwing up on one I was put on others. There were tons of 'em around then, all with the same selling point 'They will not affect the stomach'. That, said my wise old GP, is because they all do.

I, too, take 40 mgs of omep daily but I'm not sure it'd hold things if I was on additional stomach-messing meds. When things are bad I have to take Gaviscon Advance too plus another pill. The Gaviscon might be a solution for these final pred weeks but, although it can be bought over the counter, please check this out with at least the pharmacist and preferably the GP.

Keep plugging away. You're doing great.