So I’ve been on hydroxychloroquin and methotrexate for a good while now but I’ve just had my education on starting sulfasalezine. The rheumy nurse said if they all don’t quite get me to where I need to be then they can start looking a biologics (sp?) but I thought you needed your DAS score to be a certain level for that first? I’ve always had low disease activity (guessing that’s because it’s only in my knees?) so didn’t think that would be an option yet as I’m not ‘bad enough’. Anyone any idea? Or could she just have been talking about maybe a future path. I don’t know xx
Can I pick your brains?!: So I’ve been on... - NRAS
Can I pick your brains?!
Written by
Hels1989
To view profiles and participate in discussions please or .
Read more about...
62 Replies
•
I ve just been put forward for benepali Hels and they just nudged it over 5 in das, so I think they can if they think you merit it? I was on MTX and Hydroxychloroquine but mainly hands, wrists thumbs for me at mo. I ve had it other places n who knows where else you might if not on dmards. Hope you do if that’s what you want. Told no side effects, which wld be bonus. Good luck x
Hels1989 in reply to
Thanks Hun. I’m sure I read my score was only 2 or 2.5 though so not sure they could nudge so excessively haha but we shall see!! Thankyou for the reply 😊 xx
in reply to Hels1989
I don’t know if they just go on das, think you have to have failed couple of dmards too (or rather, the ve failed you 😉) was really surprised when they said to me as been told probably sulfa or lef next at prior appt. x
Hels1989 in reply to
Thing is I don’t think I’m failing on Dmards I just don’t think the doseage has been ‘quite there’ yet. So maybe she is talking about another path in the future if need be xx
Hels1989 in reply to
Also how is benepali administered? Xx
in reply to Hels1989
I thought same, that they’d just add something in tho’glad to be off both as made me feel like s*** I believe it’s injection: infusion ones worry me! X
Hels1989 in reply to
Are infusions the ones where you are on a drip for a while? I don’t know anything about biologics to be honest just Humira as my late mum was one of the first people to test it and that was injection and the liquid really stung 🙁 xx
in reply to Hels1989
Neither do I Hels, but yes think so: someone I worked with was on remicade (drip). She seems ok it’s just idea of them (makes it sound like we ve got something really serious, ha!) Hopefully someone else knows more than me 😀
Sorry about your mum, you’re young to be without x
Hels1989 in reply to
She died at age 39 Hun when I was 17. Cancer. Fancy having what we have then getting cancer! Worst luck ever! As much as I miss her I’m glad she’s no longer suffering this evil disease xx
in reply to Hels1989
That is so sad at your age Hels, feel for you, mine died a couple of months ago from same vile disease but was 82 and had been really healthy until then. No RA in my family that I know of, thought of passing onto my kids terrifies me. Big hugs to you braving it on your own xx
Hels1989 in reply to
Passing onto my kids terrifies me too. I’d literally never forgive myself even though I know I can’t help it. Also another reason I’m glad my mum isn’t here to see me be diagnosed with it as she would be devastated. Although she would be the best support ever. Life works in strange ways xx
in reply to Hels1989
Aw, doesn’t it x
Explain to your kids one day how really, really important it is that they don't smoke and look after themselves sensibly. Yup they may have the genetics from you, but if they don't trigger it them it could stay dormant all their lives. Or certainly long enough for research to find a cure/better treatment.
I've been on Rtx infusions since 2016.....I .have infusions, two weeks apart, every six months. If they work really well rheumy says I could move to just two infusions once a year.
I think they seem to be the least intrusive biologic....so far I've had good results....so hoping to move to just once a year.
Eligibility for Biologics depends a lot on your health authority...they all seem to have different criteria for funding...but not tolerating at least 2 Dmards ...one of which must bee Mtx....seems to be about standard.
in reply to Hels1989
I give myself injections with benepali. It's fine
helixhelix in reply to
Hello! Hello! We've missed you!
in reply to helixhelix
Hello! Ah yes...managed to delete myself whilst trying to update profile!
Don't want to hijack Hels thread...but how's it going on the biologics?
Well, I hope SSZ does take you where you need to be Helen but it's good your nurse has options open for you if not.
The eligibility criteria for biologics (you sp'd it correctly!) is to have tried & failed two standard DMARDs one of which has to be MTX & have a DAS 28 score of 5.1 or more taken on two occasions a month apart, which to me is daft because if your score is 5.1 or higher when it's taken the first time it's highly likely it will be the second time. All I can see it does is prolong the agony... literally. What you may not realise is that in order for you to qualify they take you off your meds, so if you react as I do when off meds you'll likely qualify.
Coming off meds terrifies me!! I think I would defo qualify as I was like a cripple before starting treatment!! I’m praying I don’t need to go there or for a while at least but what will be will be xx
Me either, never ever want to be in that position again but if needs must, until they change the archaic & cruel system & it gives you the opportunity of better control then... x
Completely agree Hun. Always praying for a cure x
NMH is right, it's an evil system. But it seems that some places the nurses are much more able to work the system to get you funding approval... and the biologics they tend to suggest first are injections - just like MTX injections really. The second/third ones are more likely to be infusions, or one of the new ones which are pills.
I did very well on MTX, Sulpha and hydroxy for nearly 8 years so hopefully it's not something you'll have to face soon.
Thanks Hun. I’m kind of now in the way of thinking where I just say ‘il try what is necessary’ and I think you have to have that mentality? Otherwise I think you would be too scared or worried to get the help (medication needed).
Yes hopefully I won’t need anything further like you 😊 but if I do, then I will do what I need to to help myself for my family xx
Nomoreheels and helix, Not in my case I failed 2 dmwards benepali abatacept, and plenty of other drugs before that the usual ones , they gave me lef on my last visits , lef was my last drug ,which blew my head of, bp was deranged. And I’ve had steroids injection to get me by, they haven’t left me without at any time to see if I will flare because 100% million % I would not be typing now.
It seems so awful that some people just don't respond well to any of the drugs. I am endlessly thankfully that I've done well so far on traditional drugs.
I presume in your case your DAS score was so high that there was no need to take you off drugs to enhance the score. It's only the people who don't quite meet the criteria that have to do so.
Hope you find the drug that suits you soon.
If they took me of steroids I would be in a terrible mess, see the doc on the 18th for the next step.
in reply to nomoreheels
I didn’t know that nmh, explains biologics clinic with ‘re-score’ for early December appointment, oh dear! I do have normal rheumatology appt October I think. Both seem a long way off now🙁x
nomoreheels in reply to
I hope both appointments are fruitful. x
Hiya
I've just started benepali. I think if 3 dmards fail to work they will put you forward. I haven't seen the letter rheumatology wrote to GP, so not sure what my score is. My knees and feet are the worst. I suspect docs might go on a bit more than scores.
Good luck and hope things get better for you
Only DMARD that I had to stop was methotrexate. 3 biologics never started properly with me but now just started my 4th...abatacept. with all my problems I still had to go through process of questions with specialist nurse and her pressing my hands,arms,shoulders and knees for response of pain.crazy process when they know your blood results and history.
Are these biologic drugs super expensive? When I asked my GP about them, he said they can badly affect your liver. Was I being fobbed off?
Yup!
I have taken without any problem for many years now(20+) methotrexate, sulfasalazine and, until recently, hydroxychloroquine for which regular eye tests are needed. My son who also has RA has been able to go onto a "biological" which has been very successful for him, but my RA has become fairly dormant now and so I do not need a "biological"(of which there are many)
What is a biological? About to start MTX and wondering what it is and why they don't put u straight onto it if it's so good. Forgive my ignorance but I keep seeing it so thought I would ask.
The biologicals are a number of drugs, mostly given by intravenous infusion, which reduce the activity of certain white blood cells that are a major part of the body's immune system. In diseases like rheumatoid, when joints are attacked, or Sjogrens where salivary glands are attacked, the body's defensive immune system has gone partly wrong. Anyone taking a biological will also have a degree of reduced immunity against bacteria etc, and so care will be advised
Thank u for explaining.
Okay thank you, I am going to pursue this because my RA is going crazy at the moment. I've been on SSZ for 10 years, they added hydroxychloroquine for 4 Months which had no effect whatsoever. I need a new approach.
You'd be better talking to your Rheumy about this Terrysl. Whilst your GP will be aware of biologics, & yes they are very expensive, he's not the specialist who prescribes for your RD. It could be a change in meds is needed, that could be further DMARD treatment, considering you've been taking SSZ for 10 years it may not be working as well as it once did, so there's leflunomide or methotrexate if we're talking the most commonly used ones. It may mean you won't need biologics for a good while yet. It s your Rheumy though who puts you forward for funding though & you've criteria to match.
I would think twice about leflunamide. I took it for a spell in the 1990s . It did not seem to do me any good and it caused a peripheral neuropathy in my feet and lower legs that still causes me much pain.
Leflunomide wasn't the DMARD for me either. It caused peripheral neuropathy & bilateral Carpal Tunnel Syndrome, confirmed by nerve conduction study & EMG taken whilst on LEF & when they were repeated when I stopped it the studies showed they'd eased considerably. Now, 10 months later I'm free of all symptoms. But, we shouldn't let our own experiences of a med cloud our consideration for others really should we? As Terrysl has tried 2 DMARDs there are other of the more commonly prescribed ones he may do well on, not everyone has the same side effects, or indeed responds similarly. The only way to know is to try & that's for his Rheumy & him to talk over.
I'm sorry you're still troubled with peripheral neuropathy, 28 years is a long time.
Now I get confused again. I’m on methotrexate and my primary doc added on hydrochlorothiazide. What’s the difference in what we’re taking?
Methotrexate was prescribed by your Rheumy & is a class of med called a DMARD (Disease Modifying Anti Rheumatic Drug). Your primary care doctor has prescribed hydrochlorothiazide which is a class of med called a diuretic (water tablet) often used for hypertension (high blood pressure).
My BP goes up and down. My mother had and daughter has the same thing. No rhyme or reason. My ankles swell at times but rheumy said it’s due to inflammation from arthritis. My legs get complicated because I also have peripheral neuropathy in both. I know losing weight would help everything but I can’t lose an ounce. Thank you, Hels.
Can I ask what are biologic and what is a DAS score? I'm about to start MTX injections so just want to know if there is anything better out there and why if biologic are so good u aren't put on them in the first place. Seeing rheumy nurse today so guess I should ask her but I like to speak to people like yourself going through the and with a similar condition to mine. Forgive my ignorance but if u don't ask then u never learn. Oh also what is hydroxu chloroquin? Sorry about all the questions but terrified of MTX without knowing about all other options.
Biologics are another type of DMARD which we progress onto if we don't become well enough controlled on the first line DMARDs, methotrexate, hydroxychloroquine, sulfasalazine & leflunomide commonly. We've to have tried MTX (unless there's a reason not to) & at least one other DMARD as part of the qualification, the other being the DAS 28 score which I'll explain about later. Biologics are expensive meds, some costing 10's of thousands of £'s annually so funding needs to be applied for from CCG's or providers. Biosimilars & JAK inhibitors are less expensive but even so they can be more than £650 or a little over £800 per month depending on which is appropriate. So, you can see why we aren't all just started on biologics as first line treatment.
The DAS 28 links in with qualifying for biologics as I said above, but before that I'll try to explain what it is. The Disease Activity Score (DAS) of 28 joints is performed by your Rheumy or nurse to determine your disease activity. It includes the number of swollen joints, the number of tender joints (you may have noticed your Rheumy or nurse palpating your joints?), your CRP (inflammation score) & your interpretation or assessment of how you think you're doing, pain etc. This is the scale you're asked to do which sometimes has a smiley face on one end of the scale & a sad one at the other & either numbered from 1-10 or 1-100. These components are all calculated to reveal your score. The DAS 28 is not only usually taken at your normal review appointment but also used to determine if you would qualify for biologics. When used this way it's taken twice, a month apart, & should be 5.1 or over as a guide.
MTX is thought to the best initial DMARD, so whilst you are just starting treatment you are being prescribed what's considered the gold star treatment. It's unique as a first DMARD as it's available in both tablet & injection form. Hydroxychloroquine is another DMARD, a 200mg tablet taken once or twice daily, the dose doesn't go any higher. It's often given first in less severe onset, as an addition to MTX (double therapy) or with either or less commonly both of the other two widely used DMARDs, sulfasalazine & leflunomide. HCQ was my first DMARD before I started MTX.
I hope your appointment with your Rheumy nurse went well. Don't be afraid of asking us any question, we're not here to judge, it's not ignorance you're relatively newly diagnosed. Remember we were all where you are, most clueless at the start & living with these diseases is one heck of a good way to learn so us oldies should be graduating any time soon!
I hope this answers your questions Cheylann but bear in mind the info I've given is generalised & for RD as that's what I have. Some treatments may differ for PsA, eg some meds could work better than others so may not be specifically relative. This from ARUK may be a helpful read arthritisresearchuk.org/art...
Thanks for that hun I actually showed it my partner to read to explain the medications we use better than I can explain. Xx
You're welcome. Pleased it helped, I assume your partner got it! x
Than u very much for that very thorough explanation. It is most helpful. I asked nurse about biologics and she said apart fm being very expensive they are extremely strong immune system suppressants which often irritate the liver and have many side effects and as a result not the first line of treatment when drugs like Methotrexate often work so no need for biologics.
You're welcome. Any of the meds we take have the potential to affect the liver but why would we want to start on the heavy meds when something potentially less harmful or immune suppressing can be tried first. Let's hope that MTX is the one that works for you and you don't need to worry about starting biologics.
Thank u if I had my way I would rather not have any of these drugs. They all sound awful. Never wanted to go on biologics was just trying to find out what they were as read on here how effective they were for some people. Have my MTX injections in my drawer and now just need to find courage to take the first one. Not sure when best time is.
It depends on what's best for you & what you have going on. I inject after my shower on a Wednesday morning then any feeling iffy is gone by the weekend. When were you supposed to start injecting? It's just you'll be needing to have your drug monitoring bloods taken & if you've not injected then they won't tally. Try to relax & you'll find it's done in a sec. x
Ive never heard of leflunomide. How many DMARDs are there?! I’m confused what is the difference between them all! Xx
About 25 of them! They are all disease modifying anti rheumatic drugs (DMARDs) and about 6 of them traditional DMARDs like Methotrexate, and then a whole host of B-DMARDs usually called biologics.
The traditional ones are normal chemicals, and biologics are made in a laboratory from extracts from living cells.
Our immune systems are built on a long series of complicated reactions between different cells in our bodies. With RA these some of these reactions go a bit bonkers, causing inflammation and eventually damage. The different drugs each work on a different bit of these reactions to calm them back down.
This might explain them for you Helen. Tap each box to reveal more on each DMARD nras.org.uk/dmards. Another explaining biologics nras.org.uk/biologics & one explaining biosimilars nras.org.uk/biosimilars
Thanks Hun xx
Hi, your brave going on to dmards, I didn't want to go on hydroxyzine, because I read it can effect your eyes after a while, I was on methotrexate for 3 years but had to come of it felt so I'll, it was injection, started salafasazine 2 days ago, I think and hope you will be alright on this one, the other two are quiet potant,. But as you know we are all different.🤔
nomoreheels in reply to
The risk is very low although it has to be listed as a side effect along with others, retinopathy is listed as uncommon in the patient information leaflet. Whilst there are risks they are usually written up as being greater with long term use, 5 years or longer with cumulative dose. Logically it was when higher doses than the current recommended daily dose were prescribed that there was greater incidence of retinopathy, consequently with the reduction in dose so has patients with retinopathy declined. But as the saying goes mud sticks. Actually Chloroquine carries a higher risk but that's used as an antimalarial & as treatment for malaria in some countries not as a DMARD. But, we are advised to have an eye examination before starting HCQ so there is a baseline test to compare with & we're recommended to have an eye test annually thereafter. When I was on HCQ I had an baseline examination at my Opticians & because I had light sensitivity on it my Consultant arranged for me to have regular eye checks by an Opthalmologist at the hospital.
Did you only read about this or did you discuss is with your Rheumy? The problems is on the internet such things are often blown out of all proportion & the risk v benefit often isn't accurate. A Rheumy can give expert evidence often not available to the general public.
As I asked both my Consulant & my brother in law, who is an Optometrist, so can you ask your Rheumy how many incidences does he have of his patients having needed to stop HCQ because of retinopathy.
Many here are on on have been on HCQ, I'll be honest though, I'm not sure how many have had to stop it because of retinopathy.
Cheylann in reply to
Not brave just don't have any other option. Wish there was another way as I'm terrified of DMARDS. MTX Injections in my cupboard now just need courage to take first one.
It's been a few months now that you've had the injections in your cupboard I think? Have you talked to your GP about your fears of taking them, as all the time they stay in your cupboard your disease could be getting worse and worse?
Shingles is sadly a common disease, and about 25% of people get it anyway. Taking methotrexate only increases your risk a teeny, tiny amount. And not taking drugs to control you disease will increase your risks of other dangerous things like heart disease. So talk to your GP to see if they could help you come to a decision.
Thank u I tried and GP said "best talk to rheumatology " and as my symptoms don't "fit" with the different arthritis and I don't have joint damage (yet) and all.bloods are negative, I'm having a hard time accepting I have Psa? Suspected so have never wanted to take DMARDS. However my ankles are inflamed and sore at mo so I'm seriously considering it. Also as u say if I do have arthritis it's getting worse as my ankles and feet are.
I agree think they do get you to the score if they can when they can see RA still active. A tip I discovered by accident is get a blood test if you are having a flare. The inflammation results will be higher and support your case.
Not what you're looking for?
You may also like...
Just picking your brains.
much more than normal( sign my disease is active). I am waiting to start Baricitinib just finished...
Newbie hear to pick your brains
one hand and fingers and now my knees are hurting. I went to a Rheumy a couple of years ago and...
Can I ask if this is normal
Sooo I’ve been on Sulfasalazine just over a week now and generally things are going well. I’ve had...
I need your expert help !!!!!
lung or chest problems which is why need to wait for results to start in new year.
What I hope...
Can I take antedepressants
Hi I have AS and RA and take methotrexate 25mg injections, I am starting Adlimumab injections...
Can I have a moan please?
I am wondering what else I can get? 
Methotrexate and your eyes 
If I hear \" its your Decision\" one more time I will scream
