ARAVA... Help!

[Kk22]

Started Arava. 3 weeks in. Went off prednisone. I am shuffling and have poor cognitive functioning!!!! Did not have this. I have had episodes in the past that last a day or so but NONE the likes of this one! I feel like a space cadet and I have shuffling like and a mild tenor. I stopped the drug.

[HeronNS]

What condition are you being treated for? Do you have polymyalgia? It sounds to me like you really need to speak with your doctor. You should not have to put up with side effects which cause your quality of life to deteriorate.

[Kk22 in reply to HeronNS]

Rheumatoid Arthritis

[SheffieldJane]

How very frightening! See your doctor though, you may need a little Pred to settle things. My brain feels like searching in an empty box sometimes, I’m on 6 mgs of Pred.

[Kk22 in reply to SheffieldJane]

I actually went ahead and started it myself. We had a wave of hot air and humidity come back..... I am finding I do horrible with pressure change and my allergies just have made the last weeks miserable. I usually flare up in June I thought I made it, nope!! August flare up. But the arava I stopped but it does work so not sure what people do in this situation. I can’t walk around like a zombie. I am a nurse I need to have my head in a decent space!! So aggravating! I also got scared I’ve never shuffled from any med, ever

[SheffieldJane in reply to Kk22]

I have had a very blocked nose and an irritating cough during the hot spell. I think I have developed new allergies. I certainly shuffled with PMR. Thanks for the heads up though, it is one of the drugs I am periodically threatened with if it’s Leflumonide.

I sincerely hope that your poor body is returning to normal.

You are amazing to manage to work! Take care! 🌸

[Nitrobunny]

Arava slayed me. Within a couple were weeks of starting it I literally could not get out of bed. I know there are people out there is works for but it was hands down the worst drug I ever took.

I hope and pray you are feeling better soon!

Best~

[Kk22 in reply to Nitrobunny]

Holy smokes!!! I have been off it 7 days and I still am suffering and that’s just two total weeks of taking it! NOT for me. I am sad but no way! I deal with side effects..... This game me chemo brain and made me shuffle. Those of you who can manage to take this, it worked right away to make the inflammation better! What a difference. The drug does work for its purpose. For me, side effects outweigh the benefits.

[Cally55]

I took leflunomide, branded arava, for 8 days just over 2 weeks ago. It had a dramatic effect dreadful diarrhea, depression, peripheral neuropathy, hair loss and oddly a flare up of gca symptoms. Now 10 days after stopping I have started to feel human again. In my case there was no question of continuing. The rheumy nurse said stop when I described my numb feet! I am on 14.5 mg pred as well. I have PMR GCA.

Steroid sparers methotrexate and leflunomide have not worked for me this summer, I am now on a higher dose of pred than when I started! I really wanted them to work as I have had bad side effects from the pred.

None of the doctors I have seen have disagreed with stopping these medications.

So, don't beat yourself up about stopping it if it doesn't agree with you.

[PMRpro Ambassador in reply to Cally55]

Interesting you say your GCA symptoms were increased - I took methotrexate for a few weeks and felt as if I was having a flare of the PMR as well as side effects of pred appearing that I hadn't had before on the form of pred I use.

[PMRpro Ambassador]

Few of us here are on Arava so don't know much about it - we don't have RA but another rheumatic disorder, PMR. Rare side effects are listed as muscle weakness, cramps and tremor - and up to half of patients stop taking it because of side effects or it not working for them.

I think you need to see your doctor and tell them you can't cope with its side effects - you aren't alone.

[Jackoh]

I have been on Arava for about 18 months . To be honest I have had little side effects and sometimes it is hard to distinguish between the effects of PMRGCA, the effects of Pred and the possible effects of Arava. I have had though problems with my one foot that I think is a tendon problem which I am pursuing. I agree though if you have noticeable problems that you had not got previously you should stop it .

[valrene]

Hi Kk22 have had pmr for 31/2 years reduced pred to 10 mg couldn’t get any lower, Rheumy started me on methotrexate but pushed my liver enzymes up to much, then started me on 10mg of Leflunomide managed to get down to 5mg of pred, did have pains in stomach thinning hair and diarrhoea, I persevered inflammation levels went down, Rheumy then put me on 20mg of Leflunomide managed to get down to 1mg steroids did have tummy trouble again but cleared up after a month, best thing I could of taken no more swollen legs, knees,ankles and feet, no more pain, hump back, moon face, double chins and 3st just melted away, inflammation levels have stayed down, so for me best drug I could of taken, so sorry it hasn’t worked for you xxx

[Kk22]

Thank you! I stopped. I tried to go back on and days after same thing. At least I know! So upsetting