Just diagnosed & given Leflunomide

Moe

Hi,

I've just been diagnosed with psoriatic arthritis. I'm in the middle of a flare up which has been ongoing now for over two weeks.

There was initially a question mark about whether this flare up was gout or not. After the results of a blood test, the consultant seems to be certain the diagnosis is psoriatic arthritis and has prescribed Leflunomide.

I don't think I have a very good immune system as it is and I'm concerned taking this drug is going to leave me even more prone to infections. It also doesn't help the thought of taking it for the foreseeable future. Do I really need such a powerful drug after having a two week flare up...albeit it's still ongoing?

I'd be interested to know other people have found the drug...

Best wishes

stickywicket

Hello Moe and welcome to the forum. I'll give you a straight answer. I'd take the leflunomide. But then I've had arthritis for most of my life and I know what a vicious sos and so it can be when unchecked. Mine's RA but I also have OA because of the lack of DMARDS when I was first diagnosed.

If you have an auto-immune form of arthritis (and both gout and PsA are) then you have an overactive immune system which needs dampening down. What sort of infections do you keep getting? I don't think I get any more on DMARDS than I did before but I am more careful about hand gel, tryinh to avoid people with colds etc.

Only you can dexide what you want to do but I'd take the meds every time.

AmandaJones

Hi Moe,

Almost all autoimmune diseases require the immune system be suppressed to some degree because ‘over activity’ of the immune system is what drives the illness. Leflunomide is an immunosuppressant, and those taking it will have the regular blood and blood pressure tests, and may need an annual flu jab.

Due to the effects on the immune system, people who take Leflunomide are prone to getting infections. This includes serious infections such as tuberculosis and sepsis. Respiratory tract infections are most frequently reported. It is also very important to get yourself monitored regularly for infections while taking Leflunomide. As a precautionary measure, you can check with your doctor other over-the-counter or prescribed medication, or herbal remedies to deal with mild infections.

I understands your concern but, it is always a balance between controlling the disease and not allowing for complications from the treatment. But that is where close follow up with your provider is a key.

Amanda.

dreamdaisy

Hello, I too have PsA and am on triple therapy all designed to flatten my immune system. They do it very well but I don't fall ill that often thanks to increased hand hygiene, anti-bac wipes and hand gel. I wash my hands frequently throughout the day, and when out and about wipe surfaces such as restaurant tables with the wipes, plus sanitising my hands. All humans are filthy creatures and that includes me.

I was on lef many years ago and it didn't do much for me in terms of giving relief but there again not much has thanks to my going un-diagnosed and therefore meds-less for five years. If you are in the comparatively early days then you stand a good chance to the lef helping. You must have the flu jab (it's not an option) and, if you decide to try herbal or other remedies when poorly you must consult with your rheumatologist; people assume that herbal means harmless which is incorrect. My mother was always very keen for me to take a zinc supplement to boost my immune system - she couldn't understand that this would make the arthritis worse. :roll:

I think it true to say that nothing we do affects the disease to the point of making it disappear (which is why this forum exists) but it does need to be managed and that is the role of the drugs. We also need to learn how to manage ourselves, in my experience flares last for weeks (if not months) and I still occasionally flare despite the meds - the current heat wave has triggered my PsA. Tiredness is a factor and rest is important. I am lucky in that my skin is not too badly affected (thanks to a med called sulphasalazine which I have been taking for twelve years now) - how is yours? DD

Moe

Thanks for your supportive messages, it's made the decision easier and I took the first Lef this morning. Dizzy spell for an hour around midday, but otherwise so far so good.

Best wishes,
Moe

stickywicket

Well done, Moe. I do hope it helps. It seems a big step at first but you'll probably find any side effects soon settle down. I hope so

As5567

It can be a tough and scary decision to take these drugs at first. But the reality is you either take them and your symptoms should improve or you don't take them and your condition will sooner or later cause damage to your joints which will cause even more symptoms.

I'm not on Leflunomide but I am on drugs that have the same affect on the immune system. I can't say that I get any more illnesses while on these drugs, if anything I get less because I'm much more aware of avoiding people with colds etc and I always make sure I wash my hands before food and always when returning home after being out. I also carry a hand sanitiser gel for on the go. Most people will see this as over the top but when we take these powerful drugs its better to be safe than sorry.

The only affect I have ever noticed due to having a lower immune system is that colds and other sorts of viral/bacterial infections seem to appear much quicker and usually stay for longer than usual. I typically get 1-2 colds per year which I'd say is around normal.

There are also vaccinations you're now eligible for on the NHS because of the drugs you're taking. I think there are 2? Flu jab and Pneumonia jab. Both are important to get, the flu jab is every year from Oct onwards I think and the Pneumonia jab is ever 3 years I think