BS: Anyone been prescribed Leflunomide?

Subject: BS: Anyone been prescribed Leflunomide?
From: Nigel Paterson
Date: 09 May 17 - 05:58 AM

First, a quick description from Wikipedia:

"Leflunomide (original brand name Arava) is an immunosuppressive disease-modifying antirheumatic drug (DMARD),[2] used in active moderate-to-severe rheumatoid arthritis and psoriatic arthritis. It is a pyrimidine synthesis inhibitor that works by inhibiting dihydroorotate dehydrogenase.[3]"

I have recently been diagnosed with Large Vessel Vasculitis (LVV). A week ago my rheumatologist started me on 10mg, once a day. After one week, I experienced the following side effects: multiple night sweats, extreme agitation & anxiety, tremor & involuntary limb movement, confusion & brain fog & a general feeling of being very unwell. After contacting the rheumatologist, I have stopped taking the medication. The side effects persist, but are gradually receding. Leflunomide can remain in your system for anywhere between 1 to 4 weeks.

I'd be interested to hear from anyone who has had a similar reaction to this drug & also, anyone for whom Leflunomide has proved to be effective, without intolerable side effects.
                                                                                       Nigel Paterson.

Subject: RE: BS: Anyone been prescribed Leflunomide?
From: Rapparee
Date: 09 May 17 - 09:31 AM

Check the information here. There may be another option.

Subject: RE: BS: Anyone been prescribed Leflunomide?
From: Vashta Nerada
Date: 09 May 17 - 12:18 PM

Good luck with that, Nigel. It's an aspect of a condition I'm treating now (PMR) - if the PMR went untreated.

https://www.hopkinsvasculitis.org/types-vasculitis/

I'm on 10mg Prednisone.

Subject: RE: BS: Anyone been prescribed Leflunomide?
From: Stilly River Sage
Date: 09 May 17 - 11:37 PM

Are there a variety of medications to choose from?

Subject: RE: BS: Anyone been prescribed Leflunomide?
From: Nigel Paterson
Date: 10 May 17 - 04:01 AM

Thank you, Rap, Vashta & Acme. More info. from me required. I was diagnosed with PMR (Polymyalgia Rheumatica) in 2010 & started on Prednisolone (UK spelling). Over time, I've tapered Pred. to 3mg once a day, with very low inflammation markers. I've also recently undergone comprehensive ultrasound scans of the temporal arteries, ruling out GCA (Giant Cell Arteritis). With the recent diagnosis of LVV, Pred. was immediately increased to 7mg once a day. The treatment plan is to take Pred. & Lef. in tandem, slowly tapering Pred. over many months (VERY slow tapering of Pred. is ESSENTIAL), ultimately to be replaced by Lef. Called my rheumatologist & agreed to remain on 7mg of Pred. only, for two weeks & then begin taking Lef. again, but 10mg, on alternate days & monitor side effects. The prospect does not fill me with glee, but If I don't, my case for stopping Lef. for good is weakened.

          Acme, treatment options are limited to DMARD drugs like Methotrexate (already tried with different, but equally distressing side effects) & Leflunomide or Prednisolone, which comes with it's own bunch of problems. Suppressing the body's immune system is the route taken. PMR, GCA & LVV are all auto-immune conditions.

         My apologies for the lengthy post...v.diff. to cover ne othr way!
                                                                                                                Nigel.

Subject: RE: BS: Anyone been prescribed Leflunomide?
From: Big Al Whittle
Date: 10 May 17 - 12:56 PM

my wife has been on the drug for several years. she has no recollection of a violent reaction of the kind you describe - although whilst on it alone - there were spikes in her rheumatoid - days when she was completely incapacitated and immobile.

her condition has improved now that in conjunction with the leflunomide she is on one of the new generation of biologic drugs - Embrel, although the first one she tried did not suit her. it very expensive and there are very strict rules for who is entitled to it.

i am truly sorry Nigel for your problems. We have lived with DEnise's medical condition since 1976. it has been the major determinant of our lives. you're quite right -the immune system is very depressed and we seem to return from every holiday or short break with some sort of ache and pain. controlling the environment seems to be the strongest line of defence.

we did find arthritis support groups immensely helpful. to talk with other people who have sorted out some of the problems you have faced, taken the same drugs, sat in the same doctor's surgeries, arranged their homes, means of transport, ways of earning a living and faced all that stuff with resourcefulness.

Subject: RE: BS: Anyone been prescribed Leflunomide?
From: Rapparee
Date: 10 May 17 - 08:30 PM

Info.


Info 2.

Info 3.

Subject: RE: BS: Anyone been prescribed Leflunomide?
From: Big Al Whittle
Date: 11 May 17 - 04:12 AM

whilst information like this has a place, i do think that you need to talk with other people with the same or similar diagnosis. compare what the doctors have said to them.

an earlier generation of doctors were against this. but all doctors go home and leave us and our families to deal with this condition. and our view of living with a condition for the remaining 23 hours is naturally more detailed than a doctor who generally sees us for less than an hour.

nowadays a more enlightened view is general, and the expertise of patients is often welcomed.

Subject: RE: BS: Anyone been prescribed Leflunomide?
From: Nigel Paterson
Date: 11 May 17 - 05:37 AM

Big Al, your concern is much appreciated. Whilst your wife's situation is different from mine, there are many familiar parallels & commonalities. Managing auto-immune conditions is a non-stop juggling act with medication (type, dosage, side effects); the patient experience (no two folk are the same & neither are their reactions); the patient/doctor relationship & the impact the condition has on the Family. Both my GP & Rheumatologist engage with me & my patient expertise is respected & taken into account. I wish you & Denise the best quality of life you can achieve.

Rap. Thank you for the clinical papers. I am familiar with No.1...Ref. 14 cites "Dasgupta B." Prof. B. Dasgupta heads the rheumatology clinic I attend, so, in theory at least, I should be in the best hands! Nos. 2&3 are new to me. I have skimmed them, but will take the time to read them, prior to my next clinic appointment. New knowledge is always welcome & empowering.

Thanks to You All,
                            Nigel.

Subject: RE: BS: Anyone been prescribed Leflunomide?
From: Nigel Paterson
Date: 13 May 17 - 05:52 AM

Pleased to report that today (Saturday 13th May) is the first day I have felt more like my 'old self'. Leflunomide is not for me. To the sender of a series of detailed & interesting PMs, I need to correct a statistic. The latest research would seem to suggest that around 70% of patients with Polymyalgia Rheumatica will see a resolution to their condition in 3 to 3.5 years, as opposed to 75% of patients in 2 to 2.5 years.
       I have suspected for some time that the incidence of auto-immune conditions is on the rise. A quick search reveals several clinical studies supporting this notion, but nothing definitive yet as to why.
                      I wish good health to all my Mudcat Friends,
                                                                                              Nigel.

Subject: RE: BS: Anyone been prescribed Leflunomide?
From: Rapparee
Date: 13 May 17 - 01:48 PM

Our bodies don't like us anymore?

Subject: RE: BS: Anyone been prescribed Leflunomide?
From: Stilly River Sage
Date: 13 May 17 - 01:48 PM

What we put into our bodies, in addition to the stress we put them through and the amount of rest we get all make a big difference, especially if one starts to encounter health issues.

Here's a general article:

http://www.huffingtonpost.com/2013/03/21/inflammatory-foods-worst-inflammation_n_2838643.html

And here's the more specific sort you can find if you search with keywords and look for responsible sites:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2842521/