|
|
Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
|
Well, I have decided to post about this, rather encouraged by the responses about honesty.
Before I start, I feel I need to do a disclaimer. I am 35 yes, and I have severe systemic based RA. I do have extensive joint damage now being 14 yrs in with largely uncontrolled crappy disease that isn't bad. I am told I am one of 3% of the RA population that gets this sort of very severe disease. On top of that I have systemic disease that apart from the last 4 yrs or so has been almost completely non erosive. It hardly shows on xrays but I have lost almost all soft tissue function and cannot do lots of things largely because of lack of tendon attachments severe pain and stuff like that. The last 4 yrs or so show lots of bone erosions to the point of where I need to have a total knee replacement ideally with several other bits too.
Drugs wise I have been on lots of them and failed most or had serious reactions to many. Serious reactions always to the biologic therapies. no effect whatsoever on the DMARDS. The biologic therapies seem to help in general with the RA positively but I cannot tolerate them.
These serious reactions have left me unable to feel things properly over significant patches of my legs and there is the diabetes, hypertention, palpatations, secondary addisons etc. (yawn) mostly due to steroids over the yrs (not really huge amounts but lots of small lots over time- with some bigger IV whacks!)
I am now in the position where I am on the last approved for RA option which is abatacept. I have always had a *bit* of a drug reaction to it. slight tickling at the back of the throat then it settles, to slight prickling, feeling unwell and having a sleep, to slight prickling, feeling unwell and having a sleep and feeling very groggy for a few days.
The crp went from about 80 to 25 at the beginning (much better!) but the ESR hasnt done so well rising from 60 to 104. (which looks worse)
This last time I had the above but with a temperature spike and then I got wheezy. I felt dreadful. In the end I went into hospital to be sorted out. At that time they did a routine chest Xray.
I have an unexpected problem.
I have suspected lung fibrosis/ hardening of the lungs. The inflammation in my body has prb caused this although chemotherapy agents have been indicated as a possible cause. The hardening is apparent on xray.
I need to have a CT and probably a biopsy to confirm it. But in all honesty the outlook is bleak.
There is a chance that this is scarcoidosis. If this is, I will be so very cross because 2 yrs ago I went to see this awful dr who wouldn't listen to me about the lumps and red blotches up my legs. I am sure this is granuloma. certainly it looks like all the pictures on the internet.
The Consultant when he saw me and explained I needed a CT scan handed my discharge letter to his team to write and they have left off the request for the CT scan. My discharge letter only mentions that I need to try the abatacept again but this time with steroid and antihistamine.
I realised this and so emailed the consultants secretary. She is STONKING and....
All of a sudden, Im being brought into hosp on weds to have the abatacept again with the steroid and anti-histamine and stay in over night for observation. I have already started being stroppy at home and explaining that I will not be staying any longer in that hospital than that one night and they can just admit me again after the weekend. Nothing happens in hospital at weekends and I am off with my family for a few days.
There is no word on the CT scan and the GP has explained that I cant have a CT request from him with no remit to do it.
My husband knows in the family but that is it.
I dont have anything to tell them really anyway but its a real burden mulling over things in my head and I really REALLY appreciate the chance to talk about it on here.
Jenni xx
how to be a velvet bulldoser
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 714
|
Jenny It is difficult to know what to say to you other than WOW you don't do things by halves!! Honestly though Jenny my admiration goes out to you on how well you are in control of a disease that cannot be controlled. You have your head screwed on, a positive attitude and certainly don't take any nonsense. They say that knowledge is a powerful thing and I certainly think you have done your homework on this dratted disease. I sincerely hope that the abatacept behaves itself this time and that you find continued benefit from it. As for the other things keep battling for the treatment you so deserve. I for one feel priviledged that you feel you can talk to us about your health problems so openly and I personally have learnt a great deal from your posts and been encouraged in my own battle. Keep going girl  Jackie xx
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 88 Location: Aylesford, Kent
|
oh Jenni. You have been through so very much sweetheart. It is so not fair. Please tell me why the evil people in this world get away scot free and lovely,wonderful kind hearted person like you has everything thrown at them. I am so very glad you decided you could be honest on here because you need to let these feelings out. If love could get you better then Jenni you would be absolutely cured right now, because you are so very loved on this site. You are an inspiration to me and I know everyone else on here. I hope your hospital visit on Wednesday will go very well and you are in and out as fast as possible. Keep fighting Jenni. Love Belinda xxxxx Treat others how you wish to be treated!!
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 8/25/2010 Posts: 1,289 Location: Buckinghamshire
|
hi Jenni,
i honestly don't know what to say other than really feel for you,
you have been hit with so much so young and yet you keep battling on, whereas i think i would have fallen by the wayside ( i feel guilty having posted my Exasperated Thread today )
i wish you all the very best for a better outcome that you feel you might get,
and hope that you can continue to enjoy being at home with your lovely family.
you have always been an inspiration on the Forum, always an encouraging word or advice.
i'm glad you have been honest about your situation, and hope that this has helped you by doing so,
love and best wishes to you Jenni,
Suzanne x
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,110 Location: London
|
Jenni, they say putting things down on paper is the best way of showing feelings, and I am glad you decided to share this with us, your "other" family. You are always here to help and support us despite your own obvious problems with your health. I do hope that on Wednesday the abatacept works well for you. You will be in my thoughts and prayers Jenni x x BARBARA
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 2/18/2010 Posts: 1,098 Location: farningham kent
|
Just a few lines to say Jenni, that you are a great inspiration to us all who suffering with this debilitating illness. You remain strong throughout and I try to follow your example, not letting depression get in the way and staying positive. I have lung fibrosis who was dx about four years before the onset of the RA, they now think there is a connection, as they were originally flummoxed as to what caused the condition, luckily it hasn t got any worse as yet.
Just hoping all goes well for you with the treatment on Wednesdays.
Julia xx
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 2/14/2011 Posts: 301 Location: South Hampshire
|
Hi Jenni I am so pleased you decided to post. You do need to share how you are and how you are feeling. We are all here to support you and 'walk with you' through all the difficulties. Hopefully you will see a doctor tomorrow and perhaps persuade them to request the CT scan as well as everything else they are doing. I know from past experience with my Dad, that it is quicker to get a CT scan if you are an inpatient but much longer if you are an outpatient - but I totally understand your desire to be at home - not in hospital. You'll have to judge for yourself what is the best thing to do - only you and Richard can decide that one. These illnesses do all seem to have such major ups and downs - and I really do feel for you. We all seem to go from tears one minute to feeling really positive the next... but it really is a bit of a roller coaster. As I've said before, you have been such an inspiration to me (and in a funny kind of way, it helps knowing you live nearish me too!) Take care tomorrow and Wednesday and be assured of our prayers. lots of love and hugs  Anne xxx
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
|
Oh Jenni, I'm so sorry to hear you now have lung fibrosis and I hope you get the CT scan very soon.
It seems wrong that one person can be thrown so much misfortune. Not only do you have severe RA but it seems as if you have had to fight for every investigation and treatment you have had.
Wishing you all the luck in the world for Wednesday, hope the addition of antihistamines and steroids mean you can tolerate the Abatacept.
You are so strong and positive through all that you have to cope with but it really is time you were dealt a better hand!
Sending lots of gentle hugs.
Love, Doreen xx
|
|
|
|
Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009
Posts: 336
|
Dear Jenni, I always wonder where you find your strength from with all that is thrown at you and here you are again, once more with another one. I hope with all my heart that this one is the one that will work for you and that you stay safe. I don't uderstand about the lung thing I'm afraid but I hope that can be sorted. Thank you for posting. My thoughts will be with you. Glenys. x
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 12/16/2009 Posts: 156
|
Hi Jenni
I dont know what to say to you and I knw sorry it has happened to you you do not want to hear but you are a fantastic person and I know you have a fantastic Family to support you.
I wish you all the best for your appoinment on wednesday and all the best for ever.
If you feel like having a moan then come on here and let us know how you are feeling.
all the best
Love
Audrey. x
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 11/26/2010 Posts: 71 Location: London
|
Gosh Jenni what a week you're having and it's only Monday night. As everyone else says too, you are such an inspiration! But I feel I should add that doesn't mean you have to be brave or nice on here, you can't be inspiring if you keep the bad stuff to yourself  it doesn't work! I really feel for you on the CT scan front, everyone I speak to who needs the NHS seems to agree that we patients have to manage the 'care plan' as it were as the dots just don't get joined up. I don't need to tell you to fight for it... I hope everything goes ok on Wednesday, I'll be thinking of you and keeping everything crossed (well, trying to!) Huge hugs and love Vicky xxxx
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 11/20/2010 Posts: 244 Location: Cornwall
|
Hi Jenni,
Like Suzanne I feel a total fraud bleating on so much because compared with you I've got it easy. In one way this makes me feel better but in another so totally sad that you've got to deal with so much. But, as I 'sensitively' said to a friend recently going through a hard time, you've just got to carry on and deal with it, no choice Mrs. And that's the thing, there's not much of a choice in any of this really. Another friend, big drinker, said to me that they didn't know how I managed without the odd tipple, no choice there either mate, don't fancy liver failure thank you very much. So our choices are limited and yours more so but I think your choice to stay out of hospital and spend time with your family is a very positive one. You've said to me before about prioritising and you've got your priorities pretty straight. I feel very privileged that you have shared this with us Jenni and I send you all my spare positive vibes (just need to keep a few for myself, sorry being selfish again)
Much love
Sara
xxx
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 9/5/2010 Posts: 364 Location: mid glamorgan
|
Hi Jenni
Thanks for sharing with us.. You always seem to cope so well and are always on hand to help and advise us with all aspects of RA.. It is so unfair that you have this to contend with as well! I really hope they do the CT scan soon and lots of luck for Weds, love Ceri xx
|
|
|
|
Rank: Advanced Member
Groups: Registered
Joined: 12/3/2009
Posts: 854
|
Thinking of you as always Jenni. Hoping that all goes well tomorrow and you get your scan too.
x
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 12/8/2009 Posts: 124 Location: Wolverhampton
|
Jenni,
I hope all goes well tomorrow and that you don't have to stay in hospital any longer than is necessary. I also hope that you get the ct scan.
Take care xx
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,689 Location: Durham
|
Hi Jenni - just wishing you all the very, very best for Wednesday, and hoping it all goes smoothly for you. Hoping you get the CT scan sorted soon. I`ll be away on holiday after tonight, but will keep everything crossed for you. Kathleen C x
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 12/4/2009 Posts: 1,524 Location: W. Yorkshire
|
Good Luck for tomorrow Jenni. Try and keep the faith (as I know you do) because you have been in some horrendous situations before and sometimes, things don't turn out as bad we fear they will and miracles pop along. YES I'VE CHANGED, PAIN DOES THAT TO PEOPLE.
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 3/28/2011 Posts: 956 Location: North Preston
|
Hi Jenni
I really hope it goes well for you tomorrow. You deserve a break from the terrible time you are having. You accept the condition so well and cope with whatever comes along. No wonder you want to have a good moan now and again. Chin up girl.
Sheila x
|
|
|
Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 1,110 Location: London
|
Jenni will be thinking of you tomorrow, hope everything goes ok x x BARBARA
|
|
|
Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
|
Oh thank you all so very much for your kind support.
I really did feel so much better after posting to you my understanding friends.
I am going into hospital tomorrow as planned. My Dad is taking me and will stay with me for a time. Richard is helping me pack an over night bag.
As for the CT scan, I emailed the consultants secretary about it. She is pretty fierce at getting her drs in order.
I have this great nurse on the ward where I go for my drug- she is also pretty fierce at supporting patients against crappy practice and so Im praying that we get Sharon tomorrow for the infusion and she takes no WHATSIT of anyone when it comes to robust patient care.
My intention is that we ask while we are physically sat in the ward about the CT scan. At least find out when its been ordered.
dont much fancy the idea of the lung biopsy but as its clear on xray about the hardening and should be clearer still on CT does this mean that it could be avoided?
Thanks again.
Jenni xxhow to be a velvet bulldoser
|
|
|
|
|
|
|
