Curious about biologics

[jessicacookieninja]

I have sero negative arthritis in my knees. I am on sulfasalazine and have been for 3 months. I have constant inflammation and currently have a horrible flare. Should I peruse biologics? I have researched and the side effects look horrible, like increased infection of practically everything else. Should I be concerned and should it put me off?

[Hidden]

I think you have to have been on 3 DMARDS before they will consider biologics. Also your DAS score needs to be over 5.

It takes 3 months plus for the effects of the drugs to start to work so maybe the Sulfa isn't working yet? What does are you on?

Do you have it in any other joints?

[jessicacookieninja in reply to Hidden]

Oh, I see. And maybe it isn't. I'm on one gram of sulfasalazine and one gram of naproxen. Its only in my knees. I'm only 19 and at university so this whole thing is really destroying me.

[Hidden]

Personally I've not had any side effects from Humira, certainly no infections. It's a difficult issue to research online because those who have problems are more likely to post than those for whom everything is hunky-dory.

If you have inflammatory arthritis it is everywhere in a sense - although certain joints may be more badly affected than others. Inflammatory arthritis is 'bad for your health' overall, by which I mean that systemic inflammation imposes considerable strain on the body and might attack anywhere, including certain organs sometimes.

I think it is worth thinking about biologics. With luck the Sulfasalazine might help, but if it doesn't it's worth asking your rheumy what the long-term plan is. Biologics often seem to succeed when all else fails and that's reflected in the NICE guidelines that demand that patients have a fair few swollen / tender joints and have 'failed' 3 DMARDs. I think the important thing is to be an informed patient who doesn't go along with a rheumy who may be inclined to by-pass the need for biologics on cost grounds.

[jessicacookieninja in reply to Hidden]

Thank you, it helps to know there are other people who suffer with it as well.

[farm123]

Hi

I was 19 when I was first affected and it was just my left knee (sero negative inflammatory arthritis) joint wise but it does seem affect the whole system. It does take some time to find the right medication to keep the condition under control with the minimum of drugs. Different rheumy departments have their own treatment path but generally you have to have tried 3 DMARD's together with having a high DAS score (calculation involving swollen joints and blood tests) to qualify for biologics. You can find more info on NRAS website re DAS and drugs available. Your meds may need to be reviewed - do you have contact with your rheumy department nurse as they are often the best person to talk to between appointments when you are in a flare (some hospitals will give a number of their website if you were not given it). Sorry if this is not relevant but as you are young and of a 'child bearing' age this may also need to be taken into account when deciding on treatment. Personally for me the biologics have not made me any more open to infections than any other treatment and I have less side effects than with DMARD's.

[nomoreheels]

This extract copied from the NRAS website may help you understand about biologics/anti tnf's.

"The patient must have tried at least 2 of the standard DMARDs (such as methotrexate, sulfasalazine, hydroxychloroquine and leflunomide) and one of these must be methotrexate.

The level of disease (measured using an assessment called ‘disease activity score’ or ‘DAS’) should be above 5.1 on two occasions, one month apart. DAS is calculated by a combination of factors, including assessing 28 joints to see if they are swollen/tender and looking at the levels of inflammation showing up in your blood."

It's possible that sulfasalazine isn't performing as well as it could or you need additional backup, NSAIDs, steroids, pain relief or even a different or additional DMARD but these are all things your Rheumy will be able to help you with. There are other options to try before the need for the biologics route is considered & even though you are aware it's just your knees that are affected the likelihood is that inflammation is elsewhere & the reason you're considering you're having a flare. Uncontrolled RD isn't nice so please contact your Rheumy or Rheumy nurse to explain how things are, they will be able to help you.

[allanah]

How awful to have this at Uni but stay strong and focused to make the most of this great opportunity.

It took quite a few disease modifying drugs to fail for me before I was considered for biologics.

If they were to do that there are a lot of criteria as the others say.

Why don't you ring your Rheumy helpline nurses and explain your problems and how it's awkward at Uni for you? Also unis have great medical/ disability officers who may be able to advise or get you seen quicker and generally support you. Well done, brave you x

[Hidden]

Ditto to what Allanah has said about you being brave. I hope you make sure your tutors know and that you are getting enough support from the university. I would say you need your rheumatologist to know that you are still flaring and consider adding in or switching to Methotrexate if the Sulfasalazine doesn't work.

Probably best not to read too much about the drugs you may not actually need until you are told you meet the criteria as it may just stress you out more. These drugs do all come with heavy warnings but many people get on brilliantly with DMARDs and Biologics - although you may not see them posting here much because they want to get on with their lives again and that's a good thing of course! This amount of disease control and getting on with your degree with minimal pain is what you and your medical team should be aiming for I would say. Twitchy x