|
|
Rank: Advanced Member  Groups: Registered
Joined: 12/7/2009 Posts: 262
|
Hi Lyn,
are you sure you've not been indulging in Eleanor's cake, Doreen's "tea" or Sheila's thimbles? Must be Amanda's cabbage leaves then!
Seriously, I'm so sorry things are so tough for you at the moment. What you're saying re targetting the right cells seems perfectly logical and sensible to me. It's so frustrating and disappointing when the experts don't have the answers we think they should.
What have they suggested as the way forward from here?
It's remarkable that you have managed too keep your sense of humour throughout this, well done, I really admire that.
I see you were on the night shift again last night, hope you managed to get some sleep.
Take care, you are in my thoughts and prayers
Diane x
|
|
|
|
Rank: Newbie
Groups: Registered
Joined: 3/9/2012
Posts: 6
|
Hi Lyn I too am on Ritux (since Oct last year) and by December (11 weeks) needed steroids to help daily inflamation which moved around. At my January appointment (14weeks)the ritux had still not kicked in and I had a depo and had to continue on 5mg oral steroid too. At the beginning of March (21 weeks) I saw the consultant who has now suggested reducing the oral steroid gradually which I am doing - and at present I am not suffering  I had read somewhere that for another patient - it was not till his 2nd round of ritux that it began to work. I am hopeful that may be the case for me - and perhaps you and Rose? Here's hoping
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,006 Location: Timperley
|
One or two people have said the same thing, Lizzy. I know for Bob Campbell it wasn't until the second or third set of infusions that he started to feel better. Really pleased it's started to work for you.
Will ring, Lyn xx
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 2/18/2010 Posts: 1,098 Location: farningham kent
|
Evening Lyn, I hope you manage some better sleep tonight its no fun being a nocturnal creature all the time.
From your post, and I have to admit having to read it over to myself more than once to get the full gist , I really wonder that with all your years of " experience " you may well have a clearer understanding of how " everything works " so to speak, than many of those in the profession. It is painful, in every aspect of the word, to endure never ending waits, in the hope that this will be the right one at last. I feel so grateful that at long last the Cimzia really has worked and that it continues to do so knowing that if it doesn t the path ahead could be a difficult one again. You re amazing how you keep your sense of humour, its not fun at all really as we know, but I feel too being positive really helps, as on the other side stress certainly makes it worse.
Thank you for the tip about editing, will note for the future. I think it may have been the laptop itself as it was doing a lot of odds things, so I had it looked at just in case it gave up at the wrong time, I really wouldn t want to be without it now.
Love Julia xx
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 4/20/2010 Posts: 1,749 Location: Somerset
|
Hello Lynn Gosh your sleeping at night is so bad, how do you manage to stay awake and function during the day light hours. ?  I feel so for you, but I also wish I had your good spirits . Against all odds you come on here and bump everyones mood up and answer all our queries - Lynn you are lovely and AMAZING . . .  Fingers crossed you get real relief very soon. Rose x x
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 561
|
Lyn just want to say what others have said you are amazing how you keep your sense of humour and always offer advice Praying you can get medication that will work for you . I know what it's like to not be able to sleep it's frustrating and you can't function properly ! Sophie x
|
|
|
|
Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009
Posts: 2,127
Location: Thornton Cleveleys
|
Hi Guys Thank you so much for all your lovely thoughts and comments; I feel very touched  As you can see I am on the night shift yet again; actually been to sleep tonight for two hours but then woke up! Thought I'd be zonked as I did quite a lot yesterday, but no ... just sore! Diane, I think the rheumatologist may well want to try Tocilizumab next. From what I've read about it there could be hope but (why is there always one of those?!), as it works on the IL6 antagonist, if IL6 isn't the cause of my inflammation it just isn't going to work!! Personally I'm thinking I might like to try Cimzia, as I have had good results with the two anti-tnf drugs, but under current guidelines I don't think I'm entitled to a third one. She did say I could try whatever I fancied ... although the cruise round the Caribbean was wide of her mark! Rather think she's at a loss what to do next and is hoping Rituximab has done the job ... gulp  Jean, a second/third cycle of Rituximab does seem to have worked for some people, but I think, from what I've read, they're perhaps in the minority with nothing to lose going for further cycles; thinking of Bob really who was very restricted in what he could have. Lizzy, good news that you are having some success whilst reducing the steroids. Fingers crossed the Ritux is doing it's job for you I have still got my latest RA 'adventure' to post about ... that's a corker  Think I should try and get back to sleep before day breaks so will save for another occasion! Thanks again everyone, Lyn x
|
|
|
Rank: Advanced Member Groups: Registered
Joined: 2/18/2010 Posts: 1,098 Location: farningham kent
|
Hi Lyn
Sorry to read yet another poor night's sleep. Just to say remember that with Cimzia, the drug company UCB pay for the first twelve weeks of treatment. I noticed practically overnight my energy levels went right up it was quite amazing, of course unfortunately we are all different but it would be good it you could give this one a go.
Love Julia xx
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 838 Location: Nottinghamshire
|
Hello Lyn
Just been reading your post and what can I say? You've really not had much luck at all. I can't understand the thinking behind not letting you try another anti tnf. What is the explanation behind that? Surely cost can't be the factor, if you had of been successful with a drug they would of had to of continued funding it, so why not just fund another one? It just doesn't make sense to me at all.
Must agree with what Julia said about your understanding of RA being better than most of the professionals. You have been reading up and studying about this disease for over 20 years, more that most of the consultants have.
I do admire how you handle the situation that you are in still have such a wonderful sense of humour about it all. I don't know if I would be the same, when I do have pain I think of others who have it constantly and wonder how they cope with it 24/7. I did smile to myself when you said about the consultant saying you could try whatever you fancied and you thinking of a Caribbean Cruise.
I really do hope that something, somehow works for you soon you really do deserve it.
Take Care
Paula x
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 11/20/2010 Posts: 244 Location: Cornwall
|
Hi Lyn,
Sorry to hear your latest adventures are seem to be akin to some cruel joke, you are a genuine RA guinea pig that's for sure. I only hope I manage to keep such a sense of humour through whatever is to come.
My consultant tried to cheer me up once by saying that there will probably be a cure one day, I cocked my head and said 'Great , I'll be dead by then!' Not amused! Needs to go on the same sense of humour course as yours?
Looking forward to the next instalment!
Sara
|
|
|
|
Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009
Posts: 2,127
Location: Thornton Cleveleys
|
Thank you all for your input, lovely to read comments, thoughts and good wishes from so many of you. My next appointment with the Rheumatologist should have been May to follow up on the Rituximab. However with knees filling up with fluid again and Prednisolone going up and down on a regular basis (my weight with it ... but that only seems to go up  ) I mentioned it to the rheumatology nurse who got me an appointment within the week. It was quite a wait as I was at the end of her list but who cares?! I was seen, examined, treated and had a lengthy discussion to boot! She did a full examination of all joints, aspirated and steroid injected my right knee, fluid from my left knee is now halfway down my leg, and then we discussed meds and my recent chest x-ray (will post separately!). We now consider Rituximab "failed" after 19 weeks. Clearly CD20 on mature B-cells is not the cause of my inflammation! Had a lengthy discussion about what to do next and she was keen to try Tocilizumab, the next drug in the 'agreed' schedule, much as I suspected. This one works on the IL-6 receptor. She said she would also consider Abatacept, T-cell therapy. Having realised that both anti-tnf drugs I had had previously had been successful for 8+ years between them it seemed to me that the cause of my inflammation is likely to be tumour necrosis factor otherwise these two drugs would not have elicited such a good response. Granted they did fail eventually but with good reason in the case of Enbrel, and it is now known that Infliximab has a short lifespan before the body becomes immune to it. So, I put forward my case and she agreed to allow me to try Cimzia for 12 weeks! A result It won't cost the health authority, as Julia pointed out, UCB pay for the first 12 weeks of treatment. If it's going to work it usually does so quickly and within 2-12 weeks. Can't be bad and I feel really optimistic about this! Just waiting to hear from the Biologics nurse (sailing round the Caribbean at the moment, where I should be!) to set the wheels in motion Isn't it amazing how ones values change? Hardly a Caribbean cruise, round the world trip or expensive jewellery (not that I'd know what to do with it!) but I am ecstatic about Cimzia! Hope it bloomin' well works!  Lyn x
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,689 Location: Durham
|
Hi Lyn, I really, really hope the cimzia is the answer to your prayers. Good luck with it, and let`s hope it works for you. Kathleen x
|
|
|
Rank: Advanced Member Groups: Registered
Joined: 2/18/2010 Posts: 1,098 Location: farningham kent
|
Hi Lyn I m so excited for you, this is great news as the Cimzia has worked so well for me together with mtx by injection .As i have no doubt said before on here I noticed immediately improvement in my energy levels, and its good of course that UCB are quite confident of positive results being achieved within the twelve weeks, hence providing it free to the NHS for that period. It is a relatively new drug, and it would be brilliant if it works for you and gives hope for others in the same position. Its easy peasy to inject and never feel anything afterwards, the nurse who came a showed me how to do it said don t apply the cleaning swab and once removed from the fridge apply in 15 mins. Hope you don t have to wait too long for the nurse to get back from the cruise - and lets hope for plain sailing  Love Julia xx
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 9/3/2011 Posts: 717 Location: Torbay
|
Good luck with the Cimzia. After all you've been through lately, I really hope it works. Best wishes from Naomi.
|
|
|
Rank: Advanced Member Groups: Registered
Joined: 4/20/2010 Posts: 1,749 Location: Somerset
|
Hello Lynn
How you doing this month ? Been thinking about you , as you quiet on here I take it
things are not too good.
Take care and let us know.
Rose x
|
|
|
|
Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009
Posts: 2,127
Location: Thornton Cleveleys
|
 Thank you for your comments everyone Just when I thought things were tripping along nicely, thank you very much, along comes a nasty U-turn and plans sent into disarray! I have been having breathing problems for 6/7 months, not entirely sure when I first noticed! As my drugs have changed continuously over the last two years it has been difficult to pinpoint a possible cause. I have put on about 2.5st due to high dose prednisolone so tended to put the tight chest, wheezing, shortness of breath down to being generally unfit and overweight. However, just over a month ago I decided enough was enough and a small increase in my white cell count made me think I might have a low grade persistent infection. So off I toddle to the GP! I fully expected to come out with my mitts tightly grasping a prescription for antibiotics ... no such luck! Doc is very concerned that I might have lung disease (due to methotrexate) so I leave with a ticket for an urgent x-ray, do not pass go do not collect the measly £200 ... go straight to hospital!! I did (Yes, for once did as I was told without argument  ). That was on the Friday. The following Tuesday I had an urgent rheumatology appointment. Rheumatologist tells me "x-rays fine, no change from previous ones". Goodo, at least I can cross lung disease off the list, phew! Wednesday I go for spirometry. Used the inhaler as instructed before appointment, not that it made a scrap of difference, and proceeded with the deep breathing and exhaling! Not only did I pass the ruddy tests I excelled apparently Duh ... However on the Thursday my chest was so tight and it took me three hours to get my breath back after getting up, getting washed, making the expedition downstairs and drinking a mug of tea! Went back to see my GP three weeks ago who was stumped by the symptoms. He's not normally one to be lost for words or a diagnosis! The inhaler has no effect which appears to rule out asthma. I am always anaemic, Hb never reaches the minimum of 11.0 and hovers at about 9.0. He thinks perhaps the combination of anaemia and weight gain might be the problem, but admitted it was a shot in the dark. So, on with yet another course of iron! If no luck it will be referral to a respiratory specialist. After all this palaver I now have a tight chest almost all the time and I get out of breath even more easily! Went back to GP yesterday (Monday 23 April), I tell you, Puff the magic Dragon, may well live by the sea but he has nothing on me when it comes to breathing!! Having exhausted what seems to me to be most/all other possibilities I think Methotrexate has to be the culprit I’ve tried anti-histamines (in case it’s an allergy), Ferrous Fumarate (to improve the anaemia), Amoxycillin (in case it was an infection!), increasing Prednisolone (perhaps I’d cut it back too quickly) resting for long periods and nothing makes any difference! This is the same Methotrexate that I spent a long time trying to get back after previous episodes of neutropenia! My GP is very concerned that rheumatology haven’t taken these problems up before embarking on yet another course of treatment, ie Cimzia, which is normally taken with Methotrexate. He believes it is the culprit and thinks it could be early symptoms of pulmonary fibrosis. He has referred me back to rheumatology requesting an urgent CT scan, this may provide a more detailed picture of what is actually going on. I am not taking any more Methotrexate for now until the cause has been firmly established, and the Cimzia now has to await the outcome of the investigations. Sods law though, Healthcare at Home phoned last night to arrange my first delivery; had to put them off for a week as I don’t want to be taking delivery of something I might not be able to have! Hoping I’ll hear something soon but things in rheumatology don’t ever happen quickly in my experience! I now have that many appointments lined up for various things I won't have time to do anything else! Perhaps as well in the circumstances , maybe I should be putting one or two on hold for now  The good news in all this is that the diet is working well and I've lost 11lbs! That's 5 bags of sugar , I probably couldn't even lift that amount never mind carry it around all day long! Must be having a beneficial affect somewhere! Lyn xx
|
|
|
Rank: Member  Groups: Registered
Joined: 3/9/2012 Posts: 15 Location: Sidcup S E London
|
Good Luck Lynn, hope it all goes well for you. Mary
|
|
|
Rank: Advanced Member Groups: Registered
Joined: 4/20/2010 Posts: 1,749 Location: Somerset
|
Oh my Lynn, gosh it never rains but it pours with you. So feeling for you at this time, no wonder you
have been quiet on here, the last thing you wanted to do is read 'others' posts when you have huge
problems yourself.
Do so hope that they get to the bottom of your breathlessness and can rectify it quickly for you.
Good to have lost 11 lbs that has to be good and help you.
Please take care and thinking about you. x x
|
|
|
Rank: Advanced Member Groups: Registered
Joined: 2/18/2010 Posts: 1,098 Location: farningham kent
|
Hi Lyn My goodness me you have been having fun and games, sorry to hear all this I have some lung fibrosis and have regular lung function tests to see how things are going. I ve had it for about seven years and have no idea how it was caused but now wonder if it was due to the RA. From what you say about your stamina with the lung function test it would appear that your lungs work very well so it certainly is a bit of a mystery to say the least be interesting to see if the CT scan shows anything up. Its a shame that the Cimzia has been put on hold, looking forward to hearing how you get on with it too., just hope thats not for long. Really well done with the diet Love and best wishes Julia xx
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 8/25/2010 Posts: 1,289 Location: Buckinghamshire
|
hi Lyn,
ohh my goodness was tired just reading how you are doing .. or should i say not doing!!
sorry to hear that the Cimzia can't go ahead yet, but you must get properly diagnosed and then hopefully can get the right help.
wishing you well and let's know how everything goes,
Suzanne x
|
|
|
|
|
|
|
