Specialist recommendation

[19bird]

Hi, i'm writing for my brother. He's had increasingly severe RA symptoms for a couple of years, he initially tried to avoid the medication but since earlier this year has been taking methotrexate - to which his condition didn't respond, plus he had major negative side effects - and more recently a first round of biologic drugs which made a huge immediate impact, but now he's worse than ever. His doctors are helpful and kind but they are also just moving through a protocol. His condition is worsening and not responding well to standard treatment, i'm wondering if anyone can recommend a specialist who might have something new to offer? . . . thanks in advance, James.

[Mmrr]

Whereabouts does your brother live ?

[19bird in reply to Mmrr]

Hi, in Herefordshire.

[KittyJ]

when you say a first round of biologics do you mean he’s on rituximab? What have his doctors said when he’s told them it’s not working ? I’m not sure what kind of specialist you are looking for, can you encourage your brother to join here, it might be easier 😊

[19bird in reply to KittyJ]

Hi, he's been on Belapalin (not sure if that's spelt right) . . . i'm just assuming that like with all other medical disciplines there will be good and not so good departments and more or less specialist specialists in RA, some who might have other ideas around treatment, and/or particular experience with his kind of background and symptoms. thanks

[KittyJ in reply to 19bird]

Benepali like other meds can take some time to work, for me it was a good couple of months before I noticed any improvement and it was very gradual after that. One injection isn’t enough to say it’s not working really, your brother, from what you’ve told us is having symptoms like most with RA and many of us try many meds before finding something that works. Sadly it’s a case of trial and error and your Brother is lucky to get put on biologics so quickly( though he probably doesn’t feel it at present). Going unmedicated has probably caused damage to his joints too which is something meds won’t repair, he may be getting alot of pain from that too. Changing rheumy I doubt would change his treatments but there are different biologics he could try when he has given this one enough time to work, so all hope is not lost. If he has good, kind doctors I’d stay with them as there are many here getting sub par treatment from their doctors and he could have a long wait to get to see a different one where the treatment options would be the same as now. He would benefit from joining here as we have all been where he is now and could provide support and non medical guidance until his RA is under control.

[AgedCrone]

Everybody reacts to DMards….Disease Modifying Anti Rheumatic drugs - very differently. Sadly very few of us hit the right drug first time round.

How long did your brother give Methotrexate? If he only gave it a few months & threw in the towel if he didn’t immediately feel better….then usually a rheumatologist would offer him another DMard- not prescribe Biologic drugs so soon.

Which Biologic drug is he taking? If he has been on it for less than 6 months…getting worse before you feel better is not unusual. It’s a very tough journey until you do find the drug that works for you.

Changing rheumies so soon will probably mean he is advised to remain on the present Biologic drug…..as chopping & changing too often just delays finding the drug that will suit him.

He could ask his GP to see if he could recommend a different rheumy…but it could mean a long wait for an appointment.

I hope the Biologic he’s on kicks in soon,

[19bird in reply to AgedCrone]

This is very helpful, thank you, i think his current drug is called belapalin, or something that sounds like that. thanks again

[AgedCrone in reply to 19bird]

I think you might mean Benepali …which is a Bio-similar& will probably need at least 3/4 months to begin giving any relief - before a rheumatologist will write if off & try something else.

So tell your brother to accept he’s in for the long haul…& not to give up.He should try to eat healthily & take what exercise he can manage.

Hope he’s lucky & the drug does start to help him soon.

[bpeal1]

Assuming your brother is in the UK then all Rheumatologists will have to ‘run through protocol’ unfortunately. RA biological drugs are very expensive. By the sounds of it if your brother has jumped straight from Methotrexate to a biologic the rheumatologist has already made an exception for him and skipped a couple of steps of the protocol (normally you have to have tried at least 2 of the normal DMARDs first).

Which biologic is he trying? and how long has he been taking it? The frustrating thing about RA medication is they all take 3-6 months to start working.

There is a lot of information about medication on the NRAS website. nras.org.uk/information-sup...

I would be cautious about changing rheumatologist, especially if they are helpful and kind. It could be a long wait for a new NHS referral and if you see one privately they won’t be able to prescribe biologics. They may be able to refer him to their own NHS list but there could still be a considerable wait.

[19bird in reply to bpeal1]

Very much appreciate you writing, good to have some more perspective. . . the drug is called belapalin (probably spelt wrong) Thanks,

[bpeal1 in reply to 19bird]

Possibly Benpali? Benpali is an anti-TNF (generic name entenercept). It can take 12 weeks to work so maybe it needs to be tried for slightly longer. It maybe worth contacting his rheumatology team as they may be willing to give a steroid injection or a short course of steroids to tide him over if he’s really struggling. The other thing to bear in mind is that you said he’d avoided medication for a while, if permanent joint damage occurred during this time medication won’t make any difference to that.

Unfortunately the RA medication journey can be long and tedious, fingers crossed your brother finds relief soon.

[19bird in reply to bpeal1]

thanks for your reply, much appreciated.

[helixhelix]

do you know which biologic? Things like rituximab can take a while to have an effect?

It actually sounds as if his doctor is doing the right things. Sadly there is no way of telling which drug will work for which person so the protocols are based on thousands of patient years of experience about which work most quickly/effectively with the least serious adverse effects. You could find a doctor who will stick a pin in a list of drugs, but would that be any better?

Is your brother doing everything he can to help himself, and to help the drugs work properly? No smoking, normal weight, daily exercise, good sleep patterns, and diet heavy on plants and fish and light on fatty and sugary stuff with little highly processed food. Moderate alcohol.

I get that you din’t like your brother suffering, but if he avoided drugs for a long time it now might take longer to get this under control.

[19bird in reply to helixhelix]

Hi, thanks for writing, belapalin, or something that sounds like that, is the drug, he's been on it a couple of months so maybe not kicked in yet properly, he's particularly worried at having been told that while the drugs will stop the RA getting worse they wont fix any damage that's already happened. When you say 'under control' do you mean just stop it getting worse? . . . . thanks again for your help.

[helixhelix in reply to 19bird]

Maybe Benepali? It’s an anti-tnf drug (ie it works at a cellular level to block the reaction that causes inflammation). Can take 12 weeks to start working and longer to really get going. I started on a simialr drug a few years back and at week 11 it was doing precisely nothing and I was about to throw in the towel. At week 12 it started working. So give it a chance, but equally if it’s getting to 4 months and nothing’s happening talk to your medical team.

There are a range of drugs now available, and one of them could be the magic one. Unfortunately trial and error is the only way right now to find out.

And yes, under control means not getting worse. If physical damage has been done that won’t suddenly repair itself. But it may not be actual damage, but the effect of chronic inflammation which can improve remarkably. Shame he didn’t start treatment before getting to this point.

[helixhelix in reply to helixhelix]

Just to add, after diagnosis I could hardly walk, couldn’t cut up my food, struggled to wash myself etc etc. My hands were like deformed sausages. But all fine now! It was inflammation rather than damage,

[19bird in reply to helixhelix]

This is very good to know, he's been really worried that everytime he feels worse there's no way back from that point, , , very heartening.

[helixhelix in reply to 19bird]

Has he had x-rays and scans of the most painful joints? That will be the best way to know what’s going on. So if he hasn’t he should ask. And also keep track of his blood tests to see what his inflammation levels are. Have tgey changed since he started on Benepali?

[MJSlide1958]

A good biologic which agrees with him and the correct amount of Methotrexate should work but obviously speak to your Rheumy a must! When finding the correct meds and dosage then it is a real big change of life! Good luck and best wishes