Arava &ldn for RA

[Marciejo]

Is anyone on Arava & LDN?

[medway-lady]

Just stopped Arava and no idea what LDN is. I've been forced to stop Arava as Acute Kidney Injury caused by Omprezole has done me in. I stress that this is extemely rare and only happened to 4/5 people in the UK since 2000. So Arava for me was great I loved it and led a normal life just that the Omprazole happens to have in very rare circumstances a toxic build up in the kidney thus making them fail. So don't think its going to be a risk for you as this is so rare its being written up now by my consultant whatever that means. Ihad great treatment and would just add make sure your blood tests are done and hopefully it will work as well for you as it did for me.

[Marciejo in reply to medway-lady]

Why did you take the omprazole?

[medway-lady in reply to Marciejo]

It protects the stomach from the Arava as far as I know, prescibed by RA consultant.

[helixhelix in reply to medway-lady]

Being written up usually means that the consultant is writing a paper on your case (no names of course) that will be submitted to a journal. This way other doctors can look up and learn about this rare event.

[Simba1992]

Hello, I don't think there are many in this forum on LDN. I belong to a fb group though, where many members find the combination arava LDN useful.

[Marciejo in reply to Simba1992]

I just wonder how well the Arava works for pain and inflammation?

[Simba1992 in reply to Marciejo]

For some it really seems to work well and together with LDN better than alone for those I have read about.

[WifehasRA in reply to Simba1992]

Hi,

Can I have the name of that Facebook group? My wife is on LDN and considering arava. Thank you

[AgedCrone]

Who prescribed the LDN? If it wasn't your rheumatologist you'd better discuss it with him.

All Dmards prescribed for RD can have unwanted side effects if mixed with OTC meds.

[Simba1992 in reply to AgedCrone]

Doctors who have the authrity to perscribe LDN know that it is ok to take with DMRDS and biologics. Only opioids are out.

[MandiS in reply to Simba1992]

Hi when I asked my Rheumy to prescribe LDN he told me to provide him with all the clinical data that proved it worked for RA. Needless to say I changed Rheumy but haven’t asked the new one. My friend who takes it for MS swears by it.

[Simba1992 in reply to MandiS]

ldnresearchtrust.org has a special info sheet for doctors. Maybe you could print it out? But actually it is not so easy, the specialists in rheumatology are bound by other restrictions, they do not have the same freedom to try meds outside the gold standard, as GPs do. You would have a better chance with your GP. There are rheumies that are willing to follow up the med if the GP perscribes it.

[AgedCrone in reply to MandiS]

Your previous Rheumy was a good doctor....not prescribing a drug that has been presumably not been licensed to treat RA.

MS is not RA......it's like prescribing Vit C when you have a VitD deficiency.

Treatments for all autoimmune diseases need a qualified consultant- to decide what is needed. Even two people with RA react differently to the same drugs.

What suits your friend with MS, has no bearing on what will suit you with RA.

Please be careful before you overstep the patience if your doctors. If you take OTC meds that react badly with what your doctor prescribes.....why would he continue to treat you?

[AgedCrone in reply to Simba1992]

I asked who had prescribed the LDN.....we don't know clinical history ..so any additional drugs to a Dmard should only be prescribed by a clinician in possession of all the facts.

[Simba1992 in reply to AgedCrone]

So far haven't heard of any other drugs than opiods that should not be taken with LDN. It's such a minimal amount of a med that has been used for decades in much stronger doses. That you can in fact get over the countet without perscription. You need the perscription for the pharmacy to make these mini doses.

[AgedCrone in reply to Simba1992]

Anything prescribed by a doctor who knows what other drugs his patient is taking, & he knowing their clinical history is happy to go ahead .....that's fine.

But patients who "top up" their doctors' prescribed meds with any other Meds they have just read /heard about ......without clearing it with their regular doctor - are playing with fire.

[sabrejan]

Hi Arava is theakw for the drug leflunomide. I take that been on this for over a year. It takes long time to get in your system so u need lots of cortisone injections to help u while it's getting in your system. Why are u struggling x

[Marciejo in reply to sabrejan]

How long did it take to work so you didnt need anymore shots?

[sabrejan in reply to Marciejo]

Hi it took about a year to properly get into my system and take sulfa too. I still have to have cortisone injections through bad periods. I have just had one about a month ago and I am still in pain but its a way of life for us with RA now. I feel the cortisone injections work the best but I am afraid of the side effects of that but at least it helps through the worst of it. I prefer the jabs to your bottom as hate the ones to your joints. My pet hate is injections too, I am such a baby when it comes to them.

Take care have a good day and hope you feel better soon x

[helixhelix]

Arava or Leflunomide can take about three months to work. So lots of people are offered steroids during that period. For some just one injection will be enough, others need more. We ae all very individual.

Once it has started workimg you should find that your inflammation goes. And usually a lot of the pain is actually caused by the inflammation so that goes too. If you already have damaged joints then those won't be helped, but it should stop them getting worse.