I'm so pleased this site exists. I've read nearly all your posts and I've learned a lot from them. I don't like to speak to friends about it , they just think I'm moaning.
I've had RA and OA for 12 years, for 4 years i took sulfsalazine(SP) but was changed to mtrxate and folic acid because my eyes started to glow(Like out of aliens) but were very dry.
It's not a perfect situation for me but I think you just get used to how thing are by feeling tired for most/half of the week, even with folic acid.
Have you had or do you know anything about RA injections?
My RA consultant poked a needle into my finger joint and the next day it felt normal,
the swelling had gone . I was so relieved until he told me at the next appointment that these injections were for private patients only and cost £10,000 yearly. Now, I told him I couldn't afford them. That was a few years ago.
I thought I saw something on the TV about it now being available on the NHS but
with the consultants discretion.
I'd love to hear from you, your my RA family. Lots of best wishes to you all anyway I'll keep reading your posts.
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It sounds like you could be talking about biologicals? In which case,you'd need to be put forward for funding by your consultant,usually after failing 3 or 4 different DMARDS for your condition. I was very lucky in that the funding and first injection all took place within 2 months(even the nurse visiting at home to show me how to use the injections couldn't believe It'd happened so fast). The pharmaceutical company,if you're appproved usually pay for the first 6 months worth,in which time you're monitored by the consultant and/or the nurse clinic to see if your condition is benefitting from it or not - if you're lucky enough in that it does have significant benefits,then your 'case' gets transferred to the NHS teams who take over the costs,all the time it should feel seamless to you,as if nothing's happening in the background for you,as you should be getting your prescription delivered to your door(if you're the same area as me,not sure about others?) and you just carry on with your normal routine - for me it's a twice monthly delivery,and I inject Enbrel once a week,via an epi style pen(albeit larger).
I know exactly how confusing,and basically mind-blowing all of this information can be when you first start gathering bits - it took me ages to get my head around my diagnosis,and the impact it had on me - that's the bit the drs or consultants don't explain to you.... about how it messes with your head,and the impact that alone can have on your health. AgedCrone is right in the fact that the nurses that run the clinics are usually the best people to speak to,as they patiently sit there with you until you understand evetything they've said,and in my case,it was actually the nurse that put me forward for the biologicals - at that point my consultant was being 'off' with me because I dared to have a go at him - I asked if a rash I had was the start of psiorasis,as some people develop it after the arthritis diagnosis,but he blamed it on flea bites as soon as I said I had cats - didn't even give me a chance to finish the sentence and say they were house cats who didn't go out at all....the very next day my gp diagnosed it as an antibacterial infection and gave me a cream to use,but it still took months to get rid of.... I literally looked like I had scabies on my lower legs for the whole of summer! it took me a couple more appointments,and me asking the nurse how to complain about his attitude and change consultants before he suddenly started talking to me again,as oppose to talking to whoever else was in the room with me.... I think someone had a word on the back of me talking to the nurse about him... and by the sounds of it,I wasn't the only one who has similar issues with him!!😤 I hope your consultants are a lot nicer than mine x
I have had the same problem with my consultant but his nurse is his wife! So I can't speak to either as they both act superior.
After telling him I couldn't afford the £10,000 yearly for the treatment, he changed me from his best private suite(Which is 5 mins from me) to the hospital clinic 1 hr away in heavy traffic.
I mentioned this to him, his reply was "Well, we travel for 3 hrs to get here!" I went blank. Can he not see the difference? It's his/their job by choice that they get paid thousands for doing.
I stuck to my point and now I go to the near clinic.
But, what an attitude for them to have and It's up to them if I get a better medication. I stand no chance. My finger joints are flaring to more knobbly that I'm so ashamed of them. My consultant says my RA is in regression. Huh!
But thanks for you telling me your story. I'm happy you got a result and it came off better for you.
You'll get there in the end - it took me almost three years of non stop fighting medical 'superiors' to eventually get the right meds,and it just gets you down so much,but there is hope - I'm finally beginning to see the light at the end of the tunnel myself now,and I've heard plenty of inspirational stories from other people on here that have kept me going too. Luckily enough,your consultant won't be the one making the decision re the funding for your biologicals(if I'm correct) it'll get proposed by him,and then go to a board who are the deciding people,so just hang onto that thought. I still have rough times,and on my last visit I got refused steroid injections because apparently the consultant said it won't help,I need to get moving more instead - I'd like to see him try 'moving more' when the first thing you think when you finally wake after an hours rough sleep at night is 'bloody hell my feet are on fire' and then you slowly realise as you wake a bit more that almost every joint is actually feeling like that😤 The response I got this time around was putting me forward for hydrotherapy (still waiting 2 months later) and to increase my pain patches to 70mcgh - nice,so not only am I in constant pain,but I now struggle to see because the meds are so strong it's affecting my eyesight.... some battles I don't even bother with anymore,because they clearly don't give a stuff (funny how he couldn't do enough when I was on his private list though?!) and they haven't even got the funds for the treatment,which is why everything takes so long to get sorted. Nope,some battles I just think ahead,and know that all that will come out of it is me getting wound up even more,so I just stay calm instead(believe me,it's taken a lot to learn to be like that😂).
Good luck - I hope you get the treatment you need,and if all else fails,surely there must be someone in charge of the rheumatology team you can complain to if it carries on getting bad??
Have you asked about patient transport? I live 12 miles (1 hour journey by public transport) Patient transport - which is free - pick me up from my house and take me to my clinic. They currently provide a wheelchair as I have difficulty walking, but I still used the transport even before I lost the ability to walk far. They pick me up when my appointment is over, and return me home. I sometimes have a bit of a wait, but on the whole, they are pretty reliable.
I did ask about 2 yrs ago and was refused. They said I can get on a bus and don't need any assistance. They said there weren't enough free spaces or enough buses.
The only factor for me is the walking effort from the buses( I need to take two of them) to the hospital clinic. My mum used them but they're so unreliable with their timings.
Thank-you for your kind thoughts and bothering to answer it's much appreciated.
You know I love this site. I'm so grateful your all there.
It could have been a steroid injection....if you are lucky something like Depomedrone can take effect within 24 hrs & last up to three months. But unfortunately it doesn't work for everybody.
But it certainly doesn't cost £10k PA. I have had it privately & the injection costs about £100, but you would have to add on a private consultant's fee to that....but I think it is available on the NHS now.
Biologics do cost in the thousands, but if your DAS score is above 5.1 & you have failed on 2 or 3,Dmards ( depends on area) your Rheumy can put you forward for funding on the NHS. Try speaking to your Rheumy nurses, they usually have more time to explain than the Consultant.
When I was referred it took almost 6 months before my first infusion......so you need to be patient.
Sounds like a steroid injection. We get these free. My rheumatologist will always give me one usually in my hip when I ask, tho you can't have one too frequently usually every 3 or 4 months.
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