UK patients how did you get biologicals on NHS
Posted , 7 users are following.
Hi all
I have been suffering with inflammatory arthritis for almost 3 years with no luck in gaining any meds to control / reduce symptoms ! Every time I have an appointment with Rheumatologist (RT) they do bloods etc. even an MRI but it is then months before a follow up appointment therefore things have changed again. Tomorrow (Nov 22nd) I finally get to see my Rheumatologist since she did the MRI back in June I haven’t seen her since June 5th (5 months).
I am at the end of my tether the swelling pain & limited movement has now moved into my wrists and hands. I wake every night from 4am in agony too much pain to move the duvet (hands) pains in my knees & constant swelling, pain in my back & hips I often struggle to get out of bed to sit down to go for a pee to open a bottle to pour a drink of water or pop my painkillers from the packet. I can't hold a pen to write even a list until early afternoon when the pain lessons slightly. I am so limited by the pain. I am just 40 I am unable to work my husband said just yesterday my hands look like an old ladies. He said the rate my symptoms have developed imagine how they could be in another 3 years.
Previously I have reacted badly to sulfasalazine, methotrexate & prednisone & now exist on diclofenac & codeine painkillers. I seem to flare 5 days out of 7 but always at random so unpredictable.
It is so depressing & I am hoping that now this has moved into my hands my RT may qualify me for something stronger and I am hoping for a biological from my research possibly Enbrel. Can anyone advice on Enbrel side effects, results etc. & also how to get the RT to take this seriously. I feel there is a cost factor and that his may vary in different areas/regions of the country. I can’t work out how some people get offered biologics & others just Methotrexate etc.
Any advice / thoughts much appreciated
Leah x
0 likes, 13 replies
treezsh Missleah
Posted
Oh dear Leah that sounds dreadful. I do emphathise as I also had a rough time at first trying all those sulphasalazine, hydrocloraquine, methotrexate (the later was the worst for me) You dont saywhere in the UK you live but as I understand it you are supposed to be on the DMARDS for six months and if not successful (which yours obviously are not) then you go on to a biological drug regime. I have been on several of the biologics by now as I am sero positive and fairly severe . Most of them have worked fantastically for me and I am on a new one now which is a JAK inhibitor (tablet form so much easier) Some of them dont work for long maximum 2 years so far, but still they are light night and day cmpared to the dmards. Just keep pressing and asking about your treatment plan NICE are "guidelines" and not written in stone.... they can be modified!I livewd in Northumberland when I was diagnosed in 2013 and now in Scotland. I wish you all the luck I can for you and your future, please show them your hands and explain that the joints will be damaged if the drugs are not working for you! PS I am a physio, please contact me via a private message if you want any more advice I will try to help you all I can. It can be sorted trust me, keep pressing and letting them know what you need.
Missleah treezsh
Posted
Hi treezsh
Thanks so much for responding to my message. Always good to have feedback from someone in the same / similar situation. RA is such an unknown it really is like living with a silent illness. The good news is I have had my appointment this morning, I’ve had the bloods & chest x-ray & if all is ok I’m getting a biological, well biosimilar – Humeria. Apparently most cost effective and most widely used so fingers crossed I will have some success with it.
Will let you know how I get on.
Thanks again
Leah
Rainy64 Missleah
Posted
Hello Misslea, Reading your story just took me back its as though I'd wrote it myself, I really feel for you, I too was so down and coming on this group really pulled me back from such a dark place. I was put on Methotrexate tablet form them injection which eventually didn't agree wit me I was they n put on Flunomide... Sorry about the spelling which seem to make me so much worse, I then went on Hydroxychloroquine which started to turn a corner but not as well as they thought so they then accompanied it with Biologics and after being on both for 6 months I feel completely different, iv also changed my job that caused me stress, which I'm adoment causes alot of the pain etc and try not to eat minimal Dairy foods all these we're suggested to me on the group. Speak with your Rhumy nurse insist you go on Biologics and your appointment times are much nearer, it does creep up on you so quick, hang in there youl get there I promise xx
Missleah Rainy64
Posted
Hi Rainy64
Thanks so much for responding to my message. Always good to have feedback from someone in the same / similar situation. RA is such an unknown it really is like living with a silent illness. The good news is I have had my appointment this morning, I’ve had the bloods & chest x-ray & if all is ok I’m getting a biological, well biosimilar – Humeria. Apparently most cost effective and most widely used so fingers crossed I will have some success with it. I'm feeling a little more positive today. And yes like you I have looked at my diet try to see a pattern with things that seem to trigger or at least makes things worse - my beloved pizza seems to be one of them lol I do intend to get on top of it just hard when everything out of control. Thank you for your positivity like you said I will get there !
Will let you know how I get on. Wish me luck with the Humeria wouldn't it be great to start 2020 feeling a bit more like the old me!
Best Leah
Rainy64 Missleah
Posted
Ahhh I. Pleased you feel more positive but I also in stand it's hard to find positivity when your in so much pain and thinking no one's listening 😔 if you get a chance read my first post I put on here.. Struggling with Rheumatoid Arthritis, it was the support from others in the s as me position that got me through and now I feel so well and enjoying my time with Grandchildren something I didn't think I would be able to do, don't get me wrong I still have the odd flare up but I can cope with that as I k ow how bad it can get. Take care and remember we're all here anytime you need a chat xx
treezsh Missleah
Posted
by the way there should be no cost considerations for you... NICE have agreed to purchase several of the biological drugs and you will be given a choice of them whichever is more suitable from your Rheumatologists point of view.
Missleah treezsh
Posted
I hadn't heard about the NICE guidelines good to have this info thanks x
Jayjay1959 Missleah
Posted
Hi Missleah
sorry you are suffering so much I like you started with RA at 38 and I thought my life was over
I am now 60 and still from time to time suffer flareups
depending on where you live I think depends when you go on the biological
I have been on quite a few some have worked some haven't and some work for a while have you had your MTX via injection as you don't say Enbrel didn't work for me like you my hands suffer terribly
when you go to the clinic ask for a steroid injection to get you over the period of your new medication as most of them take a few months to get into your system
also see if you can get the direct phone number for the specialist nurses as they are a great
help rather than wait months to see the specialist
like you I too suffer from depression and anxiety but speak to your GP about this they will be able to help you you get stuck in a never ending cycle of
Pain-No sleep- tired-weepy-depressed everything seems out of control
include your GP as part of your team tell them exactly how you feel
And lastly under NICEZ Rules cost should not come into it
Missleah Jayjay1959
Posted
Hi Jayjay1959
Thanks so much for responding to my message. Always good to have feedback from someone in the same / similar situation. RA is such an unknown it really is like living with a silent illness. Funny that you were diagnosed around the same age. The good news is I have had my appointment this morning, I’ve had the bloods & chest x-ray & if all is ok I’m getting a biological, well biosimilar – Humeria. Apparently most cost effective and most widely used so fingers crossed I will have some success with it.
Thank you for the advice it could take a few weeks to get started & see results so I have taken your advice & got the steroid injection hopefully this will help in the meantime especially with this cold weather & the lead up to Christmas I might actually be able to rush around & get things done…
Will let you know how I get on.
Thanks again
Leah
Jayjay1959 Missleah
Posted
that's great Leah
good to hear you're getting somewhere I was on Humeria for about 4 years it was great then for reasons no one understands it suddenly became unsuitable
apparently the desiese can morph and require a medication swap
glad you got the steroid if after about 2 weeks if you don't see a marked improvement then always ask the nurses for a further top up steroid they always keep some back in reserve, but you should get about 12-16weeks relief from it but remember the steroids again at first make you subceptable to infections cold Etc
if in future your knees are worse you can have the joints injected too
over the years I have had my knees wrists, ankles and shoulders injected at different times they have also drained fluid from my knees and ankles gives instant relief
good luck on the Tuner is
Jan
Labradors Missleah
Posted
I think your treatment is very poor & I'm sorry. I am middle 70's & was diagnosed with RA a number of years ago. Initially I was not prescribed any biologic because NICE did not allow it except in certain circumstances! Eventually if your Consultant could make a good case & yours seems to be this, your Consultant can prescribe one of the biologics. I initially was on Enbrel but after a flare up it didn't seem to be working so it was changed to Tocilazumab. I have been on this for about 3 months & it seems to be doing the job! I am also able to take Methotrexate which you say you're not. Enbrel did not give me any side effects that I know of. I had monthly blood tests but am now on 3 monthly blood tests & all seems to be well.
My advice to you is "jump up & down" with the GP & your RA consultant & insist that you have a biologic. At age 40yrs you should not be in such pain as it can be made better. You may be correct that money comes into it but that's not the issue. Ask to see another RA consultant if your present one is not prescribing you the correct medication. I live in Sussex by the way. But really fight your corner & ask your husband to add his voice too.
Hope this helps.
Kind regards
Maureen
martin31040 Missleah
Posted
Hi, how I ended up on biologic drug, because my inflammation was rising, I was put on methotrexate but after a week I ended up at A and E due to a bad reaction, then my Rheumatologist decided to put me forward for biologic Benepali which is a biosimilar of Etanercept I passed all the tests etc, anyway end result a nurse came showed me how to inject, which I do once a week, that was about 3 years ago nearly. It works brilliant and with no side effects, ask your Rheumatologist, it seems if you can at all tolerate methotrexate they leave you on that, it's a lot cheaper, good luck.
kimberly25750 Missleah
Posted
I am very sorry that you are experiencing so much pain. I was diagnosed 18 yrs ago at age 36 with a very similar story. the combo of Enbrel and methotrexate worked for me. Five years ago I developed a blood disorder and have been taken off of the Enbrel. in my opinion, i would try the Enbrel. You need quality of life. Hang in there. i understand what you are going through. Ask your physician to try a biologic. Feel free to reach out to me any time.
Warmly
Kimberly