Biologics 😔: Sorry I've not been about for a while. I... - NRAS

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Biologics 😔

Hels1989
Hels1989
67 Replies

Sorry I've not been about for a while. I've just been struggling silently. Anyway my nurse has put me forward to my rheumatologist to be trailed for biologics. I've tried mtx, hydroxychloroquine and sulphasalezine and none have worked well enough and even the steroid injections just don't have the same effect now. I've no idea what to expect. Clearly my nurse thinks my DAS score is sufficient enough to ask my rheumy about biologics but I've no idea what to expect now! I've got a blood test booked to check I haven't got TB and waiting for my consultant to send for me but I've no idea what he will do, will I have tests? What tests will they be? Any help from anyone who knows would be great. I am very down as I feel like I'm back at square 1 and I can't help but worry if nothing is gonna help as those 3 DMARDS didn't 😔 thanks in advance everyone xxx

67 Replies
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charisma

Hi Hels

I’d need to know all that too if told biologics is the next step!

So far on fourth DMARD, bad flare recently.

I will be watching for others’ responses whilst thinking of you and wishing you well with developments. :-)

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Hidden
Hidden
in reply to charisma

Heyitsme has said it all other than I had a chest X-ray as well as the blood tests and my nurse only visited once to show me how to inject. Good luck, I hope they work for you.

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nablur
nablur
in reply to charisma

I just keep wondering how much worse I would be without the DMARDs. It’s so hard to tell what works.

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heyitsmee

I was in the exact same situation as you in June last year! Because biologics have more of an immunosuppresive effect than conventional DMARDs they will do reams of checks on you before starting you on anything to make sure you do not have any latent/hidden infections including TB, Hepatitis, etc. that may become worse if your immune system goes down a bit. They also did some baseline xrays for me too, to have a reference for how my joints were doing before and after biologic treatment.

After the blood tests came back clear, showing I didn't have any minor infections which could be made worse by a biologic my rheum nurse met with me and sent the application off for me to be considered for biologics (also briefed me on how the injections looked/the risks/advice on how to inject/booked next appt). In the application they have to sort of prove you need biologics, so the fact that my DAS score was up, and I'd failed methotrexate/hydroxy/sulpha just like you meant that it went through.

I was contacted maybe three weeks after my rheum appt by Healthcare At Home who are the provider of the biologic injections - they deliver them to you and have a nurse show you how to self-inject. They asked when would be good to come around and they had a nurse come, give me 2 months worth of injections and show me how to do the injection. She then came back for my second injection the week after to make sure I was doing okay. After that it was fairly easy to plod on and do injections myself. They had a GREAT impact on me and my joints felt better after just a day. I realised how little my previous tablets had been doing! (although I was still taking all of them and am still on most of them now..).

When I met the rheum team next I was in much better shape. Still in pain but improving. It was the first appointment where talking about my RA/pain didn't make me cry!

You're definitely not at square one - the fact that they are acknowledging that your current treatment hasn't adequately treated your disease is a really good step forward and means you can actually get on something that makes you feel better! It has made a huge difference for me. Even if your first biologic doesn't take to you straight away you also have the option of trialling others. This is good news and definitely the territory you want to be in if you feel DMARDs haven't helped you so far.

Best of luck with it all xx

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Hels1989
Hels1989
in reply to heyitsmee

Thankyou so much xxx

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helixhelix

I want to like this more than once as such a great reply!

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heyitsmee

Thanks helixhelix!

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Parker16-
Parker16-
in reply to heyitsmee

I am also going on this of which I am happy after 2 years of failing on others. I do have too travel to other countries will the injections stand this and different climates?

Thank you for your info as I didn’t even know it is injection form as I am waiting for the info to arrive it my consultant as already approved the treatment. Pam

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heyitsmee
heyitsmee
in reply to Parker16-

Most biologica are injections but you can get infusions too. If you need to travel then you can get a cool bag to carry them in - the nurses that come round would explain the whole process to.you

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Parker16-
Parker16-
in reply to heyitsmee

Thanks for the info I will make sure I write down questions. Pam

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heyitsmee
heyitsmee
in reply to Parker16-

Yes good idea! They can recommend the best kind of cool bags to you (you know the kind where you put ice packs in with them?) and tell you the temperature the specific medication needs to be kept at while you travel. They might also be able to give you a letter that you can show to customs explaining what the injections are when you go through security. I bought my cool bag online for less than £20 I think. Works well when I travel from the North to London

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Parker16-
Parker16-
in reply to heyitsmee

Fantastic thanks for this info it’s good to get tips . I will get one Pam

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jadeash
jadeash
in reply to heyitsmee

Hi have you checked the temp of your fridge . I'm wondering cause I checked mine it was reading 10 centigrade when 8 is the max and wonder if others are doing the same

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heyitsmee
heyitsmee
in reply to jadeash

Yep, I have a little portable thermometer in mine

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Kerensa21

Can’t add much hels but they tend to have far less side effects than traditional dmards. I’m benepali, best i’ve felt so far, don’t know what I was worried about, good luck x

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Hels1989
Hels1989
in reply to Kerensa21

That is comforting to know Thank you xx

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jadeash
jadeash
in reply to Kerensa21

Hi have you checked fridge temp to confirm between 2 and 8 centigrade storage. I checked mine thought it was cool but only 10 I'm wondering if that's why it's not working for me.

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VeronicaF

I am in the same boat waiting now for bloods to come back okay and same boat in how iam feeling at the moment, so thank you from me too x

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VeronicaF

ps I also have to have chicken pox vax booked next Thursday to be done finally by GP, they have been slow very slow in responding, its taken 4 weeks since they were asked to give me this

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Hels1989
Hels1989
in reply to VeronicaF

Oh really? Is that because you haven't had chicken pox? X

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VeronicaF
VeronicaF
in reply to Hels1989

yes , it showed up in blood tests

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VeronicaF
VeronicaF
in reply to VeronicaF

now I have to wait 6 weeks, as the chicken pox jab comes in two parts, had first last Thursday ,have to wait 6 weeks to have second jab, you can't start any meds until after 6 weeks

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cheshcat

I'm waiting for my Enbrel to be approved. I am very excited to maybe get some relief! It was hard to go through everything needed to "fail" on the entry level DMARDs but I am optimistic! I hope to start within a few weeks. I did all my blood tests already, only waiting on insurance and the speciality pharmacy.

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bjones1888
bjones1888
in reply to cheshcat

I’m in the same boat too. Waiting to start Enbrel but waiting on the insurance to approve and to get linked to the pharmacy to start dispensing the medicine. It’s been frustrating.

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cheshcat
cheshcat
in reply to bjones1888

bjones1888 Yes! So frustrating. It was first denied and I called panicked to see why. My doctors office didn't send any of my medical files or chart notes. UGH. Waiting again after they re-submitted. Hope yours is approved quickly!

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bjones1888
bjones1888
in reply to cheshcat

Cheshcat I was denied as well because the rheumatologist didn’t try any other meds before the Enbrel... I’m allergic to most of the DMARDS so that’s why she moved to a biologic. I just called my insurance to see if the second request had been sent by MD office... of course not! Even though I was assured that they would be submitting it quickly. So frustrating!! Been waiting since January to get started with treatment! Best of luck!

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cheshcat
cheshcat
in reply to bjones1888

bjones1888 I just called my insurance and the appeal was cancelled because the doctors office AGAIN didn't send the right papers. I'm so frustrated! Shouldn't they do this all the time? How do you just not submit the right paperwork?!? UGH. Calling doctors office right now. Again.

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bjones1888
bjones1888
in reply to cheshcat

That’s a total bummer! Hope you get somewhere with the doctor’s office.

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cheshcat
cheshcat
in reply to bjones1888

Well, the doctors office is blaming the insurance company (their online portal). The insurance company is blaming the doctors office (not sending necessary health records). I don't care who's "fault" it is!!! So my doctor has an appointment to have a "peer to peer" appeal? Whatever. At least I should be approved in the next week now that my actual doctor is involved.

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Ghus

I can't speak highly enough of Humira..... I had a bad flare after being on mtx and prednisone for 18 months without any issues. I was told it may take a month or so for the biologic to have an effect but from the very first injection I have had no symptoms of RA at all. I self inject once every fortnight and take 20mg mtx weekly. Touch wood my current treatment continues to be effective.

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Rosekerr29

On Humira after the drugs you were on had side effects... I've found Humira great with no side effects and yes had xrays etc.. before I could go on them. Best of luck

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James53

It’s pretty well all been said.

Rheumy May also do a Clinical check on joints for swelling and pain.

I have been on Benepali for 2 years. So far it has proved wonderful compared to conventional DMARDS.

Best wishes

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ladydog

What a great reply. I wad in your position a few years ago. Now on Rituximab biology drug it really as changed my life I'm alot more mobile and starting to enjoy life again. Be patient the nurses and your Rheumatology will go through everything it does take a while to work. But if not there's others to trial. Good luck. An I'm in alot better place than have been for a long time xx

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cathie

Some biologics are by infusion in hospital others you do yourself by injection. I’ve been on two main biologics for about 15 years. You get very well monitored by medical staff - regular blood tests. I responded very well to two, different people differently

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Pulfs

I've been on retuximab infusions 6 monthly and cope well ,can always sense when next one is due to feeling very fatigued and soreness in my hands. When on these biological,, whether self injected or infusions in hospital you are closely monitored. The infusion I'm on is done over 2infusions with 2wks in between and is put through slowly over 6hrs. Which ever one you're put on hope it helps you improve xx

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ROBERT_CARMICHAEL

I have never quite met the criteria for a biologic, but my son who also has RA, did and had the infusion 18months ago and was so very much better, but is now just beginning to need another. As others say, you have to be careful about other infections, but your RA will be so much better that it is worth it if you qualify.

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Artroc56

DMARDS did nothing for me but biologics were (still are) making a huge difference with no side effects

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MandiS

Hi Hels1989

I went through all the same DAS was high. Had tb hiv and hep tests all negative. 4 th week on benapali only nothing else and am seeing improvements. Only issue is since I was on methotrexate ( last year) I developed bad cough it’s now been 8 months and cough is still really bad so very disturbed sleep. Tests show everything as ok so it’s been put down to post nasal drip . I’m sure if I was getting a proper nights sleep I would be almost 100%well on the benapali. Please try not to worry it’s been positive experience. Side effects of other drugs and steroids were terrible for me and I continued to flare on them so although I was anxious about starting the benapali I’m so glad I did. Good luck try and stay positive I hope it works for you 😃

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Retired16

Biologics (5 different ones in 20+ years - always a new one to try when one stops being effective - or insurance change doesn’t cover) are the saving grace for this disease. My first rheumatologist had me on methotrexate and steroids. Second (insurance change and thank God a woman this time) got me off prednisone and started first biologic. The change was amazing!! So mad that this was withheld for first 2 years! If your rheumatologist doesn’t suggest biologics, find one who will! Quality of life with this disease gives you strength to improve your quality of life!!

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Rulds2

Hi there , I went on biologics last June , I take baracnitnb (oluminiant 4mg) it’s a tablet form biologic, so no needles, within 24 hours I started to see the miracle drug in action , it has been amazing , no pain , joints working and inflammation down , ......the last time I saw my Rheumatoid doctor , I said I didn’t want it to end and he said, let’s hope it doesn’t ......well after Christmas I have noticed weight gain and pains returning , I think I’m either got to do a food diary for interactions or add a drug to the mix , it a great step forwRd for you though........be excited xx

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chacha700
chacha700
in reply to Rulds2

I got similar reaction and I had to go back on methotrexate 10ml only with my biological tablets and 4 weeks so far improving daily

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Hels1989

Thankyou everyone. To be honest I have a big fear.....Humira. my mum was in Humira and ended up with a very rare aggressive cancer and from diagnosis to her passing it was just 4 months. I have read that one of the side effects could be rare cancers and I am not naive to think because mum got that cancer I will and who knows....May be Humira wasn't the cause.....but I am terrified!!! I have heard so many amazing stories of what Humira has done for people, a close friends dad included. But I can't help but be terrified if that's what I am offered. All I can think of is my children (8&6) who would be left without a mum like me and my brother were. My poor mum was only 39. I don't want to sound silly I just can't help the worry 😔 xx

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helixhelix
helixhelix
in reply to Hels1989

You need to talk to your doctor about this as obviously a big thing for you. Yes they all carry risks, but slightly different ones so psychologically you could be more comfortable startimg with another one. And I would have thought with your history they should agree.

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Hels1989
Hels1989
in reply to helixhelix

Thanks hun I will defo discuss it with my rheumy if he says yes to biologics xx

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cheshcat
cheshcat
in reply to helixhelix

I agree with helixhelix - have an open conversation with your doctor. Since I was just prescribed Enbrel I went over this last month. My rheumy said the newest research said the only link so far is, possibly, is melanoma but he said even that is a very weak link and they aren't sure. The meds have been out a long time now and if there was a stronger link, I do think they would have found it. We all have to think if the risks outweigh the benefits. But the best person to talk with this about is your rheumy. Good luck and hope you find something that works!

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NeonkittyUK

Hi Hels, I was thinking about you yesterday when I saw an old post reappear and was wondering how you were. I'm sorry several meds haven't worked enough for you but biologics work for so many when the dmards have failed. I think they may start you on an injection as they tend to do those first before infusions. I was on Enbrel and Humira briefly but they didn't do much for me but Rituximab has been excellent for me. The tests you will have as others have said are a chest X-ray, a TB test (the one most of us had as kids on the inner forearm to see if you react to it) and the full sweep of blood tests. All straight forward and nothing to worry about. They will talk to you about any fears you have. I had an hour with the biologics nurse who explained everything. You will either do your first injection at the hospital with the rheumy nurse or have a nurse visit you who ensures all goes well and you are able to do it. They stay with you for half an hour afterwards to make sure you feel alright. Mine was happy to return a second time but I did well myself so didn't need her to. They are click pens and so easy to use. I would tell your rheumy or nurse about your Mum and how you feel scared about Humira. They will listen to you and understand. I was offered Enbrel, Humira or Simponi. They let me take away all the literature and some DVDs about them and then get back to them when I had decided in a few days. Then it was a couple of weeks to wait till the hospital pharmacy had ordered the meds with the healthcare company for delivery. They usually deliver to your home every 8 to 12 weeks. Enbrel and Humira had to be stored carefully in the fridge. You get them out about half an hour before use and let them get to room temp before injecting. Enbrel is weekly and Humira fortnightly. You will let get used to doing an injection. As I said the clickpens are easy to use. Hugs to you dear Hels. Let us know how you get on. Biologics could and will make a huge difference to your life and give you a good mobile life back. Make you much more mobile and less pain. X

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Hels1989

Thankyou hun, I know my fear cannot stop me as I need my life back so desperately. But I will discuss definitely. Thankyou so much xxx

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NeonkittyUK

You're welcome dear Hels and you'll feel much better once you have that chat with them. 😘xx

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Hezekiah

Simponi - that's one I've not come across so far.

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NeonkittyUK

Its other name is Golumimab. There was a lady on here a few years back who had excellent results from it.

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Hobbledehoy

You're not back at square 1, you're entering a very progressive phase, for biologics are extremely sophisticated and can offer great relief. Good 🍀 luck! x

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chacha700

Biologics have been great for me after being on smarts for 4 years but unfortunately I wasn’t good on them alone so they put me back on low dose methotrexate too and I another steroid injection and I’m improving daily one again. Good luck to you also

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Cheryl20

Hi lv, you will have a lung function test and an x-ray as well as blood screen. I have this completed,exactly like you ,had all the same meds and steroids,which are now ineffective. Hang in there , and good luck re. Biologics,I'm pinning a lot

On this working,as I'm really struggling with pain,also FM😕regards

Cheryl🙂

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sproal

Hi Hels1989, As far as I know - the 'Biologics' are considered the 'Top shelf' treatment. Am waiting (& hoping) to go on them. In Australia you can only go on these, once your symptoms are severe enough (& have tried all other treatments) - or if you are wealthy, and can afford $20,000 p.a. There are some wierd blood tests, like - confirming that you haven't been exposed to HIV, TB, HEP C....etc. Meanwhile, keep positive, and have confidence in your Rheumy!

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L-DL

I have been on Kevzara since November. I haven't had any of the usual horrible winter flareups. I can honestly say that the injections aren't painful. I am more prone to cold sores now and you have to ensure that you don't inject when you have any sort of infection until it's cleared up. I went through most of the oral DMARDS and I had awful side effects. So far, so good on the injections. You will be monitored closely. The tests include TB, hepatitis and HIV. You will also need a chest x-ray. What you must be careful of is not injecting into a vein or mole it will hurt and bleed like hell. I inject every 2 weeks in a different place on rotation each time. I feel better than I have for years. It takes a while to work (up to 5 months in the case of my drug). Let people know that you are immuno-suppressed so that they can avoid you when they are ill. People have been very understanding with me.

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RichardG

I too had tried all the drugs you mention with limited affect and some side affects. The biologic Humiria was and is brilliant for me. After 2 injections (4 weeks) I was back to normal. No pain, no stiff joints in the morning. I have been taking this with a low dose of MTX for several years now and I don't even notice I have RA.

My only slight worry is that it has been suggested I move to a biosimilar (cheaper brand of the 'same' drug) which I am not keen to do.

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WickedWeaver

Hi Hels,

I was in exactly the same position as yourself a few years ago so I am able to understand a little of your concerns. I had my TB test, which was bloods and an xray and then met with the consultant, who basically made sure that I understood the increased risks, particularly for certain cancers, skin seems predominant, and that I seemed to be sensible enough to cope with the self injection process. That was all ok, so the Nurse completed my first prescription and made two appointments for me to have some practise and advice on the actual injection process. Honestly the injector pens are so easy to use, just remember to swab and swap the actual injection site . Tops of thighs and stomach are all ok and are easy to reach, but never inject in the same area on consecutive injections. I was started on Benipal (the generic of Enbrel) , didn't work, then Humira, nope, then finally Cimzia , and yeah! it works. I was also on MXT but my liver functions weren't wonderful so am now of that, just a recent thing, so we're giving Cimzia a chance on its own.

I was and still am worried about the increased risk of cancer but they way life is just now,

I'd prefer to be a bit worried about something rather than desperate about another. Without Cimzia I'd be truly lost in a world of inflammation and pain. Cancer is a terrible thing, but with regular blood checks with the GP, I can always raise any concerns before they become issues. You'll get your blood checked probably fortnightly for probably the first few months, then monthly after that.

Don't expect immediate miracles, the RA staff usually recommend 12 weeks before a definitive result can be expected, sometimes that can be only a slow improvement, but a def improvement. Or, like me no improvement at all then back to stage 1 and another combination. The cost of Biologics is covered by the manufacturers for the 12 week trial, so don't feel that money has been wasted if that specific treatment isn't for you. I do feel that being on Biologics puts you into different care package, you have to go through ahelluva lot to get to the point of being put onto them, and alongside the commitment to the cost of them you'll find that you won't be kept on them for long if they aren't doing what is expected of them. You may also find that after a few years of success the benefit starts to fade, don't worry there are always options, current ones and ones under development.

The injections aren't difficult, and if a wee bit sore an icecube before swabbing rubbed over the site helps to numb things as well.

Hope this helps a wee bit, try to relax and be thankful for amazing science and research, you've gotta love those people in white coats working with those test tubes. Hip Hip Hooray!

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Cwendyn

I’ve been on Benepali for 4 months now. I was in a pretty bad way and could only survive by adding steroids into the mix. It worked really quickly for me. Exhaustion has gone, pain almost gone -now a dull ache in my shoulder only. Best thing is, nurse went through the bloods last week and all fine, liver etc..... inflammation was 82 , now it’s 11. Don’t be scared as hopefully, you’ll feel a whole heap better.

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Hels1989
Hels1989
in reply to Cwendyn

Sounds amazing x

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Arthur5

Chillax,

Test wise it's just the usual blood samples.

What you need to do is listen to your RA team, don't read too much into it on the internet as there is some misleading information out there.

I am on biosimilars and yes they have draw backs such as lowered amine system but hey I lead a normal active fun loving life due to these wonderful injections.

They work.

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NeonkittyUK

Hope you are alright Hels? Any news yet? Here if you need to talk. Hugs. xxx

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Hels1989

Not yet lovely. I'm waiting patiently. Thank you for thinking of me 🙂 xx

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NeonkittyUK

Hoping you will hear something very soon, hon. 😘xx

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Hels1989

Thanks hun, me too. How are you doing? Xx

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NeonkittyUK

Not bad at all thank you. I have my usual infusion on Tuesday (Rituximab) and I'm dipping down a bit the last couple of weeks which is typical when I am ready for another infusion, but I should be fine after it. Hope it's not too cold and windy your side of the Pennines! Blustery in West Yorks. xx

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Hels1989

Very windy here today!!! Not great when your not steady on your legs 🤣 oh I hope you do pick up. I'm excited to start on some medication and hopefully feel alot different! Xx

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NeonkittyUK

Hope your windy weather has called down. It has here and yes it's awful to battle against it when it's blowing against you. I once got blown on the bonnet of a car when we had some horrid winds in Leeds. The man who was in it looked very surprised! No harm done to car or any of my joints but it was a shock. I had to pop in a cafe and wait for it to calm as it was lifting me off my feet the wind was so fierce. I had to go for an appointment or I would not have ventured out in such a gale. It did calm down late evening here. Thank you Hels, I am sure the infusions will give me a boost and I'll be on the up then. I am glad you feel positive about a new med as biologics make such a huge difference for so many people. To have that painful inflammation stop is what we all want. To control the RA rather than it control us. Enjoy the rest of your weekend. 😘xx

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