|
|
Rank: Advanced Member  Groups: Registered
Joined: 8/25/2010 Posts: 1,289 Location: Buckinghamshire
|
hi Rich,
what a nightmare you have just to get seen,
then when you are ... well !!
i would say the positive is that you are now going onto Methotrexate and hopefully that will work for you. i started on 10mg and worked up to 20mg ( but gone back to 10mg as will be coming off of it for Anti-TNF )
will you be having your bloods done at your GP's, that's what i do and i take my book in with me and last months are filled in or if i want i can leave my book and pop in for it about 3 days after bloods.
as i've said before it is a lottery i feel and so did the NRAS Co-Ordinator at a meeting i went to as to how quickly we're seen and how good our Rheumy Department is.
it's a real shame your Nurse's number has gone, that to me is the most important part as i know if i'm in trouble they fit me into a weekly flare Clinic.
also my Nurse is doing the sessions for me going onto Anti-TNF and she books me in to see her while i'm there for the next visit, same as i book for Consultant as i leave.
i really hope the Methorexate does it for you Rich,
and i sympathise with the poor sleep this is something i'm really struggling with.
Suzanne x
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 838 Location: Nottinghamshire
|
Hello Rich
Not a very good appointment at all, we always put so much hope into seeing the consultant and hope to get answers to our questions.
When I had MTX added I had to have a chest x ray done and for the first 12 weeks I had to have fortnightly blood test done, then I went onto monthly ones. I was given a booklet all about MTX and when I have my tests done the nurse puts the results from the previous test in it. Towards the back of the booklet there is a section that explains what the test are for and what is considered to be within normal ranges. This way I can keep a check for myself on the results. I have been told that if there is any abnormal results I would be phoned straight away by the nurse.
I have been told by my consultant that a weekly dose of 20mg is the maintenance dose, but obviously that is my consultants views. I take my MTX on a Friday and take one folic acid tablet on a Monday.
Just want to add that I did read lots of things about side effects but I can honestly say that I haven't experienced anything bad at all. Just hope that it works for you.
Paula x
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 8/30/2010 Posts: 507 Location: Gravesend
|
Hello all....thanks for all your comments :) Appears i have no side effects from MTX ..but nothing seems to be happening yet :( At last after over 2 months , i received a report from my one and only visit with the Rheumy nurse .. (appointment was 26/01/11) must say i am trying to find out what some of the acronyms stand for , and have been reasonably successful, however what it all means ..i haven't a clue ...unless the report is for comparison only. I have tried doing a search on the NRAS site and have come to a dead end with regard to what it all means in the scheme of things ,(anyone direct me to any help on here i might have missed?) Tender joints 23 Swollen joints 2 Pain Score 7.5 /10 PGA 5.5/10 Physicians Global assessment 2/10 I understand the above :) HAQ 1.2/3 (Obviously health assessment questionnaire) Psychological Score 1.4/3 Fatigue 7.5/10 RAI 6.5 /10 Grip R 9/10... was previously 10 Grip L 8/10... was previously10 Now i understand what all the terms mean but not in context ( apart from RAI), the Nurse mentions DAS in the report but states there were no bloods available ..however i had bloods done that day after seeing her and these are not included in the report . Bit concerned that her Global assessment varies so much from mine as well .I would ring her but her line is closed as she is covering Consultant's appointments (appears to be doing a form of Triage). So guess it's an email to the secretary.. who is also under pressure and only just writing up the end of Feb's reports !!. I'm assuming all this is for comparison with any other results for me , of which i have no results to compare with despite having filled in 4 HAQ'a and had numerous bloods since prior to a definitive diagnosis. Guess i will have to ask for the records :O as i do like to be involved in my own care ..in fact it's a right :) EDIT also had a report from Consultant's appt on 14/02/11 which states current diagnosis is 1 --Rheumatoid Arthritis and 2. Psoriasis but doesn't say a lot else (this was follow up to RCNS appt ) .. and started MTX as well as all the other stuff :) Rich :) "The difference between 'involvement' and 'commitment' is like an eggs-and-ham breakfast: the chicken was 'involved' - the pig was 'committed'."
|
|
|
Rank: Advanced Member Groups: Registered
Joined: 8/25/2010 Posts: 1,289 Location: Buckinghamshire
|
hi Rich,
just wondering how you are doing on the Methotrexate .. can't see a post on it from you lately.
hoping it is kicking in for you now,
do let us know.
Suzanne x
|
|
|
Rank: Advanced Member Groups: Registered
Joined: 8/30/2010 Posts: 507 Location: Gravesend
|
Hiya Suzanne, well been 7 ish weeks now .. and get really bad headaches every day .. which i never have suffered from .. but seems to go with 2 co-dydramol added to my cocktail of drugs (now on repeat after a call to GP). Now getting what i call active pain .. ie pain when i am not using the joints .. which is deep and groany pain (if that makes sense) particularly in my hands , hips and knees. Can only type for about 10 mins before i get typers cramp ..and pain in hands ..so have found a way to type with the side of my my finger tips when that happens just to finish a sentence. (although cannot sustain that either). All in all no change for the better in fact a change for the worse ..so far .. still time for it to kick in though :) Thanks for askin :) Rich :) "The difference between 'involvement' and 'commitment' is like an eggs-and-ham breakfast: the chicken was 'involved' - the pig was 'committed'."
|
|
|
Rank: Advanced Member Groups: Registered
Joined: 8/25/2010 Posts: 1,289 Location: Buckinghamshire
|
morning Rich,
sorry to hear no improvement.
i do understand what you mean about the pain you are getting,
my hips and top of legs are achy at the moment and it's making me weary. also i'm getting a lot of tendon pain in my hands rather than joint pain, i can only hold a fork a certain way.
it's a long old haul this let's just hope we get the right drug sorted soon.
i'm still waiting for Anti-TFN, you need to have failed 6 months on Hydroxy and i've only failed 5 months, i'm still on a low dose of Methotrexate as well ... doesn't seem to matter that i'm suffering with pain.
yes you have to be patient with Methotrexate let's hope you turn a corner and it kicks in within the 12 weeks.
Suzanne x
|
|
|
|
Rank: Advanced Member
Groups: Registered
Joined: 2/7/2011
Posts: 66
Location: London
|
Hi Rich,
I'm on week 8 of MTX and headaches do seem to be receding - finally! I'd hardly ever had a headache in my life before starting on MTX so it was a shock, and I didn't cope too well. But fingers crossed it may also get better for you very soon. I do hope so as it sounds as if you've been messed about badly. Polly
|
|
|
Rank: Advanced Member Groups: Registered
Joined: 8/30/2010 Posts: 507 Location: Gravesend
|
Thanks Suzanne and Polly :) Hugs to all :) I know it can be a long haul , so am willing to be patient , and doing as much as i can in all aspects of life ,while/when i can :) Good to see similar experiences on here that show hope :) Rich :) "The difference between 'involvement' and 'commitment' is like an eggs-and-ham breakfast: the chicken was 'involved' - the pig was 'committed'."
|
|
|
Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 838 Location: Nottinghamshire
|
Sorry to read that things haven't improved for you yet Rich. I do know from what I've read it may take three months before you feel the benefits of DMARD's, I was first put on SLZ and from what I remember it took about 7 - 8 weeks before I started to feel the benefit of them.
I get what I call dull aches in the middle of the night, have gone back to having pain killers at the side of the bed incase they get too bad.
I think they call us patients because we really do have to be patient while we wait for the drugs to kick in, especially with RA.
Hope things improve soon.
Take Care
Paula x
|
|
|
Rank: Advanced Member Groups: Registered
Joined: 8/30/2010 Posts: 507 Location: Gravesend
|
.. The saga continues ... well in 3 weeks time i will have been taking MTX (as well as the other stuff) for 3 months . I was awaiting an appointment (as Consultant was adamant that he should see me prior to the end of the 3 months)..this has not arrived ..so i rang his secretary who told me that there were no appointments with him until late September and none with the nurse until the end of June . I have been having my bloods taken at a small local hospital (whose job is purely to take bloods) and have asked to be CC'ed the results so that i can be involved in the process. These also have not been passed to me .I had emailed the secretary just after each test so that she knew to send the results on . However they are severely understaffed and she is only just looking at writing up February's Notes from Consultants appointments and posting them out. Since diagnosis .. now approximately a year on , i have seen the rheumatoid nurse once , so there is nothing to compare with . I hope they have been looking at the bloods and not just being put in the "to-do" pile. The Nurse has been ordered to do clinics and supervise infusions and told not to do the helpline , and i know that the Consultants are working late to get more patients through. Had a good talk with the secretary , and found out that the Hospital Trust is probably going to Merge with another that has a bad reputation.She also gave me a lot of info to use in a complaint letter ..as it is not the people but funding and their non prioritisation of Rheumatolgy Services. She is now sending out my bloods :) So now she has booked me into a clinic with the Consultant on the 17th May 2011.. this is an overbook .. something which the Consultant has told her not to do but we will see. Next step ... Complaint Letter to CEO of the Hospital Trust .( i have been reading their annual reports and clinical reports and plans for the last 2 years hehe. More research me thinks. and CC my MP :) Onwards and upwards... Rich C "The difference between 'involvement' and 'commitment' is like an eggs-and-ham breakfast: the chicken was 'involved' - the pig was 'committed'."
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,006 Location: Timperley
|
Hi Rich
Sorry to hear about your latest problems.
Could you arrange for your bloods to be taken at your GP surgery? Firstly, this ensures that someone ALWAYS checks them, and secondly you can call in and ask them to print a copy for you.
As for the rest of it - well, what can I say. I had this sort of treatment before I changed hospitals. You always have that option, but it depends on transport etc to get to somewhere further away from home.
Take care xx
|
|
|
Rank: Advanced Member Groups: Registered
Joined: 8/30/2010 Posts: 507 Location: Gravesend
|
Thanks Jean .. Gp does not take bloods as they use the same local hospital anyhow 200yrds from them .. so why duplicate services? I have asked that the GP is CC'ed in as well now .. as this has caused a problem in the past with the GP refusing to provide leflunomide without up to date bloods..and i don't blame him. And it looks like he will have to prescribe MTX forin 2 weeks as well . I am not at the point of changing ... yet .. as it is a local hospital which is there to supply the needs of the local community , the team is great and hard working ..it is the Trust that has let them and the local people down. The basics for a great service are there ..it just requires a little more from the Trust. Great fun reading the NICE guidelines and annual reports from the Hospital to find ammunition .. and there is a lot there :) I thrive on this kind of thing .. :) Thanks again Rich :) "The difference between 'involvement' and 'commitment' is like an eggs-and-ham breakfast: the chicken was 'involved' - the pig was 'committed'."
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
|
Hi Rich,
Sorry to hear about your non-treatment!
I have the same problems as you at the moment with the hospital and non existant appointments but at least I am established on treatment and had good care up till 2 years ago.
Did they not give you a booklet when you started on mtx to record your blood results? You should have one, so ask about it.
It is so wrong that we have to beg for appointments, especially those who have not yet found effective treatment.
Hope things start to look up for you soon.
Doreen xx
|
|
|
Rank: Advanced Member Groups: Registered
Joined: 8/25/2010 Posts: 1,289 Location: Buckinghamshire
|
hi Rich,
sorry to hear you're no further forward .. sounds more like a step back as you don't even know your Blood counts.
it just proves what NRAS said at the meeting i went to at my Hospital last year, it's a lottery re treatment for RA.
just wondering as you hadn't said if you are now feeling any improvement with Methotrexate ( although i suspect i know the answer )
it's a good job you have the knowledge to push forward with this Rich, something we all applaud you for on here i'm sure with your help.
will you have failed on 2 DMARDS if Methorexate hasn't helped, as the next step for me is Anti-TNF.
i'm glad you have an appointment sorted for May ... i'm sure you will be going well armed for that one.
Suzanne x
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 4/20/2010 Posts: 1,749 Location: Somerset
|
Hello Rich
Gosh what a two and eight all this is for you. I echo what the others have said and I do
hope you do get an answer to your letter to the CMO.
Is the MTX helping you ? or are you pretty much the same.
Chin up Rich
|
|
|
Rank: Advanced Member Groups: Registered
Joined: 8/30/2010 Posts: 507 Location: Gravesend
|
Hiya ..and thanks all :) MTX seems to be helping with the morning stiffness , however i still get very bad headaches first thing in the morning and later during the day . My hands also cramp up , and have active pain in them a lot more than they used to as well as the same in hips, knees, elbows back , neck etc (in fact most joints) :O, and no joy with the fatigue either :( Letter still in research stage to the CEO of the hospital . Thanks again #Rich :) "The difference between 'involvement' and 'commitment' is like an eggs-and-ham breakfast: the chicken was 'involved' - the pig was 'committed'."
|
|
|
Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 3,006 Location: Timperley
|
Am wondering whether you would cope better with injectable mtx? I had all sorts of probs before switching to this? Might be worth a thought? x
|
|
|
Rank: Advanced Member Groups: Registered
Joined: 8/30/2010 Posts: 507 Location: Gravesend
|
We will see Jean at the appointment ...and Thanks again :) Quote:Did they not give you a booklet when you started on mtx to record your blood results? Sorry Doreen .. just saw that .. and yes i have a book to record the mtx dosage and it says to put the latest bloods in there as an attachment but not a lot of good when neither myself or GP have received them despite asking countless times ..and in any case the secretary who would be sending them is still doing work from February and hence any test results would be very out of date .. Will introduce Consultant to the NRAS Care Plan thingie ..and see if it is workable with the system(lack of) at the Hospital. It is possible that the way they are having to work means that errors are made and important results overlooked , . and at the very least it means that I, the patient, am not involved in my own treatment. Rich :) .. good job the sun is out ...i think :) X "The difference between 'involvement' and 'commitment' is like an eggs-and-ham breakfast: the chicken was 'involved' - the pig was 'committed'."
|
|
|
Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
|
Hi Rich,
They need to get that sorted with your blood results because pharmacists are not supposed to dispense mtx unless they have proof that you are getting the blood tests, so they can ask to see your results book. In practice, most of them don't bother but it could happen that you will be refused the mtx if you can't show proof of your blood tests.
Doreen xx
|
|
|
Rank: Advanced Member Groups: Registered
Joined: 8/30/2010 Posts: 507 Location: Gravesend
|
Not sure about that one Doreen because the fact a prescription is written by a GP/should should mean it is honoured by the pharmacist (unless they doubt it's provenance) It might be used as a double check but its not their place to supersede the decision of a specialist unless they have serious concerns.. but all i can do is ask .. and have been assured that copies are on their way :) Will test the theory in two weeks :) EDIT ... I agree that they have a responsibility in the chain of supply to make sure all is correct before dispensing and to query if there are any side effects and if a GP has prescribed 10 mg instead of 2.5s . All guidance on the matter suggests that they look at changes in dose NOT blood results . Rich X "The difference between 'involvement' and 'commitment' is like an eggs-and-ham breakfast: the chicken was 'involved' - the pig was 'committed'."
|
|
|
|
|
|
|
