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Rheumatoid arthritis and Leflunomide

(11 Posts)
Marydoll Sat 09-Feb-19 08:37:46

Is anyone on this medication.

I already take, Meloxicam, Hydroxychloroquine and the highest possible dose of Sulfazalazine, but my RA is very unstable just now and my rheumatologist has suggested taking this drug, in addition to all the others.
I'm aware that as I have lots of other conditions, it's very risky and I would appreciate hearing about other sufferers' experiences before I make a decision.

Baggs Sat 09-Feb-19 08:44:29

Sorry, I can't help, mdoll, but I hope you get some answers.

You say it's very risky. What are those high risks, if you don't mind my asking?

Iam64 Sat 09-Feb-19 08:50:09

Marydoll, are you taking a biological treatment that's injected?
If not, I wonder why not. Usually RA patients go through the gambit of cheaper medication and if the disease remains active, biological treatments are prescribed. I've been on one for several years now, it's been a life changer in a positive way.
All the RA meds are potentially toxic and dangerous but so is the disease if not controlled. I suspect only patients or people very close to patients realise this. I still have people say to me "oh yes, I have arthritis in my thumb, so I understand". No you don't.

annodomini Sat 09-Feb-19 08:51:11

I know that an American friend has regular infusions of this medication and is enabled to live a near normal life in spite of her RA.

Marydoll Sat 09-Feb-19 09:05:58

I cannot have infusions, as I have chronic lung disease. Methotrexate is also out of the question, as it would cause fatal lung failure within months. There are very little options open to me.
I have been told that even on Leflunomide, I am at risk of lung failure, kidney failure and worst of all grin, my hair may fall out! My daughter is getting married next year and I don't want to be a bald MOB!!!
However, I have been feeling so awful for months now and sometimes my pain levels are extremely high, I would just like some sort of respite.
I'm not one to feel sorrow for myself and looking at me, you would never know I was ill. People keep telling me how well I look! grin I don't let on and just like to get on with things, keeping busy.
The only thing in my favour is that I'm on permanent antibiotics for my lungs, so that may protect them.
However, this time it's getting to me.
I don't want to offload on my family, as they have enough worries. I know my DH is worried, but not saying much,
Sorry for being such a moan, I just needed to share it! sad

Iam64 Sat 09-Feb-19 09:11:27

Marydoll - have biologics been considered and ruled out?

Marydoll Sat 09-Feb-19 09:19:48

Unfortunately, yes! sad It's all to do with the comorbidities of all my other conditions.
As I have said, we are running out of options.
I have the best rheumatologist in the West of Scotland and I trust him implicitly. My other cosultants think also very highly of him.

Iam64 Sat 09-Feb-19 09:25:41

Thanks Marydoll, what a B! I don't know anyone with inflammatory arthritis who doesn't have comorbidities. It's tedious isn't it and generally invisible so people have no idea about the fatigue, the pain etc etc. I do hope the luflomonide helps. I was intolerant to that and to sulfasalazine but the biologics have been so good I've now been able to stop methotrexate, after almost 30 years.

Marydoll Sat 09-Feb-19 09:30:14

That is good news! smile
It's just good to share with someone who understands what it's like.
I shall just pull my socks up and stop moaning! grin

Iam64 Sat 09-Feb-19 09:34:50

No, don't pull your socks up and stop moaning. Your post isn't a moan its a question. I've been lucky - wish I didn't have inflammatory arthritis and all the risks that go with it but I do so that's life isn't it. We have to enjoy the day to the best of our ability x

Marydoll Sun 10-Feb-19 18:52:08

I was hoping that there would be someone on GN who has actually been prescribed this medication.
I'm between a rock and a hard place confused and will probably have to make a decision when my appointment comes in.