I've not been reading many posts of late as I felt I would be of no support to anyone at the moment.
I had been feeling semi ok and managing to get on with things; to a degree.
Then I had an appointment with my consultant to discuss my tummy problems (some of you may remember that the diclofenac had made my stomach bleed) he said he wanted to keep me off them for now and whilst I was there he said he wanted me to have the long awaited Anti TNF assesment (fantastic I thought) had the assesment the following Monday to be told I did not score high enough.
The RA nurse and the consultant were both angry on my behalf. My RA is badly effecting my feet, ankles, legs, knees, hips, spine, neck and shoulders, the assesment will only include the knees and shoulders.
The actual assesment set off a flare (massive one) not sure if it was the moving the joints around or feeling low becouse I can't have the treatment; but I'm in agony.
The consultant actually told me that he did not want me to have any more kenolog injections so I could get on the Anti TNF treatment by allowing my RA to get bad enough. My hip keeps giving way and I can't sleep due to the pain in my legs; I really do not know what to do with myself.
I telephoned the hospital who offered me an appointment, which I could not get to as I could not move around the house let alone get in the car and drive somewhere. So they told me to call the Dr (which I didn't all they can do is offer me a Kenolog injection) So after a good cry I called the helpline and spoke to Sarah, who was so kind and good at listening to me. She suggested that I try to contact my consultant to discuss making an appeal against how the assesment was scored - but guess what my local hospital (where my consultant comes to see those that can not get to the main hospital; over an hour away) has no more clinics until mid January so I can't even make an appointment!
I am doing really silly things such as putting unleaded in a diesel car, driving off with my sons school christmas party food tray (empty) on top of the car, forgetting conversations etc. It all sounds funny but it's upsetting me that I seem to be back at this really bad place again. I'm just so tired.
I made a major decision yesturday that I am not sending christmas cards this year, I've just not got the energy (everyone has got an email explaining why) and I'm going to make a donation to NRAS instead.
so the question is; do I contact the doctor and have a kenolog injection so I feel semi human again or do I sit it out and try again for the Anti TNF assesment?
This sounds like it's from a scene in a black and white film but my son turned round the other day and said to me that he did not care if Father Christmas did not bring him any presents he just wanted me to be disease free so he could have him mummy back; it broke my heart to hear that - it still is.
Sorry not very festive but I needed to put pen to paper (as to say)
Mel
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You poor thing, you have had such a bad experience and are so much pain, Im not suprised you might forget the odd thing..concentrating when in a lot of pain is virtually impossible. Nras are brill arent they ( I did the cake sale stuff in the summer for them).
They will benefit from your donation and your right you need to save your energy. The kenalog or if not oral steroids would make you feel a lot better and enable you to have a good Christmas.
How wicked and callous to expect you to be on your knees in agony to qualify for Anti tnf.. definately appeal
Well I didn't think it possible but i'm even worse this morning, was up into the early hours with both my children not feeling well; so I've made a bed up on the sofa and I think that is where we will all spend most of the day
I have made the decision that I am going to get a Kenalog injection - I'll beg if I have to!
As I said I've not been on line for a while so I hope all is ok with you and that your dad is getting on ok?
I too got the reaction from my daughter about not having any presents, just a painfree mummy - how is is it that our children can get our pain and agony and yet our work colleagues cant!
I am sorry about your Anti-TNF treatment - I have only just started it, but had to wait too. Funny that if we lived in Europe we would have had it ages ago! Keep plugging away and I hope they realise the benefits.
Young children can be so worldly sometimes, they pick up on so much more than we think they would. My boys really do give me a purpose in life - hard work though they are, I would not have it any other way.
I asked about paying for Anti TNF treatment and was told not to even think about it as if I did I would then have to pay for all blood tests, consultants appointments in addition to the actual treatment.
How are you feeling? I'm still in lots of pain but in better spirits due to pouring my heart out on here!
I had to come off diclofenic because i bled from my back passage and i was in hospital for three days and they took me off the drug, and to i haven't been the same since is an understatement. I have days when i'm in agony. As has been said before appeal and if only to get over the xmas period for your son have the injection to tide you over.
If you have to make a choice, I would say go for anti tnf assessment showing how it really is. I cannot understand how they are being so cruel, your disease is obviously uncontrolled, your bloods must be reflecting this. Personally, Das score did'nt apply to me & Ra Consultants decision was not based on this method. Most of my inflammation was not visible, internally in the joints, and as I was very flexible and double jointed, I dont see how das would have been appropriate. Are you sero positive or negative for RA?
Thank you for your reply. I spoke to my consultants nurse this AM (she is not an RA nurse just the nurse that works with the consultant when he comes to the local hospitl - but she is a lovely lady and fantastic at her job) she had called me back within 20 minutes to say that I should get a jab to tide me over. The problem is my local primary trust fund seem to live by the letter of the DAs score so it will be hard work for the consultants to appeal; but I'm going to ask them to, otherwise I'll nver get the treatment. I think I'm Sero Positive (I've never been told) but RA factor showed up in the orginal blood test I had. My knees surrently look like they have golf balls hanging off them, but even that didn't seem good enough for the DAs score!
Mel x
Oh Mel, I'm so sorry to hear what a rotten time you've been having
Definitely appeal, meanwhile see if you can have a telephone triage appt with your consultant or the rheumy nurse. I'm sure it will take time for an appeal to be heard so you should be fine to have some steroids to tide you over for xmas and allow you to enjoy this time with your family.
I clearly remember how I felt when I was told that I wouldn't be able to have anti-tnf or go on a drug trial because of pre-existing health conditions - I felt so disappointed and somewhat despairing of 'what now?'.
You're not alone with this all too common experience so do get on here and blog and let us know how you're getting on:-}
hi, if you feel like having a good cry, have one....I think we bottle it all up too much...we're always trying to be brave for the sake of everyone else, especially our young children. Reading your post really touched me, I can draw so many similarities....I couldn't stop taking diclofenac, I have forgotten to take it a few times, and I can't move!! It has been suggested that I wean off, but theres no way I can....I was also assessed using DAS for anti TNF, it was built up that I would move onto to anti TNF as the MTX wasn't really changing anything, only i didn't score high enoughbecause the joints that were assessed were the best joints! All my really sore ones weren't looked at!!
I'd definitely get the kenalog jab....it'll tide you over xmas, and help you to enjoy it a little....you should ring your rheumatology help line and ask for it....don't beat around the bush, tell them you are not coping on the meds you are now on (or not on!) and that you need it to get through the next month or so....then I would arrange a discussion with your consultant about what your needs are and what treatment you expect in order to be able to live your life, it shouldn't be about playing a game in order to get the meds you need....good luck, x x
mel, I've just realised you're in Oakham...? is your rheumatologist at LRI / LGH?? I'm in Leicester, and I couldn't praise the rheumatology nurse help line more....really helpful and get things sorted. Message me directly if you like.....x
Mel that's dreadful. Really sad that anti-TNF isn't available to all who need it without such a fuss.
And awful that you're even worse this morning. Sounds a good idea to give yourself a break and have the kenalog, and then you can come out fighting after xmas and seek other opinions on the anti-TNF. I'd also contact the patient liaison service at your hospital, and keep on hassling till you get what you need. Hope you do manage to get a bit of enjoyment over xmas, as sounds as if you really need it. Look after yourself, and your kid sounds delightful. Sounds as if he's going to grow up into a lovely human being. Polly.
Mel, you have had a really really awful time. I would have been devasted if i thought i was going to get the anti-tnf only to be told no at the last minute. Poor you.
I am trying to stop using the diclofenac but i depend on it so much so i don't know how you cope without it.
I'm sorry i've not been on for a few days due to laptop issues but i just had to reply.I'm having an assesment on Dec 28th and i'm not hopeful as i had to have a course of steroids and a jab last week just so i can enjoy Christmas.I hope your injection works and you can enjoy Xmas with your lovely family.
Take care and i will be thinking of you
Love Julie
Mel, My RA and Psoriatic Arthritis affect my joints same as all yours. Sounds like the assessment was not complete?? Surely would be worth it to appeal.
I'd suggest seeing your Dr., tell him you want to appeal, or repeat the assessment, so don't want to have the Kenolog inj., but need some pain medication to allow you to function comfortably in the meantime.
Hope that works out for you. All the best. Loret
Mel , I have pm you hope you are feeling a little better xxx
sorry to hear your haveing a bad time of it,i think i would appeal,nobody should be left in pain in these days of medicine,i have r/a and am haveing a prob getting new knee becouse of my age!!not old enough!so ive got a meeting in feb,and fingers crossed,very lucky not have had a flare up for a while but i too get very down when i do,and also like you get forgettfull becouse of the pain.hopeing things get sorted for you very soon.x
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Weight gain and Lipomas, are they linked to anti TNF treatment?
Anti tnf
Feeling sideswiped!
Completely devastated after second opinion - now the suffering will never end
