Benepali reviews

Bones, joints and muscles
1

Hi,

I was diagnosed with RA in 2010 and started on 5mg methotrexate, 5mg Folic Acid and 2x200mg hydroxychloroquine sulphate daily. This controlled RA well until 2017 when flare ups began. Since then flares have increased and I have had 3 shots of steroids. Now on

25mg methotrexate, 5mg Folic Acid 6 days a week and 1x200mg hydroxychloroquine sulphate daily. Most recent steroid injection has eased inflammation and pain although for first time right ankle is swollen and painful making walking difficult.

Rheumatology team will now consider whether to add Benepali injections to meds I am currently taking. I have read brief information provided re Benepali but would welcome and be grateful for more information and experiences of those taking it.

Thanks

Shabina

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Remicade infusions, mtx, prednisone

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Remicade infusions , mtx , prednisone

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I really hope I am misunderstanding your post 25mg MTX only once a week, and then following two days folic acid.

If you are taking MTX daily I would be worried, that is far to much for RA.

I am on 35mg weekly and that is a max dose for most people very rare to be on such a high dose, but it seems to help me with very little or no side effects especially with liver function, it seems that I am tolerating well.

​I have been on MTX for 15 years now, and have only ever taken once a week.

​What did work for me was Leflunomide or Arava, at 20mg dose, but I hit a rare side effect of Very High Blood Pressure, wasn't even on the list of interactions when I first started on it, had to be taken off it within the week, but I was getting relief from the 20mg dose, but as the Dr's from the drug co, said just not worth the risk of a stroke.

I am now on 10mg leflunomide dose, which I have still worked out my system does not like it daily, I have tried every 2nd day, and that seems to work for me better, and the rheumo has not said not to take it that way, after we worked out that the side effects were caused by the leflunomide.

​specialist has ruled out some drugs for me, having had cancer previously, don't know if benpali is on that list.

​I have as an experiment stopped eating ALL GLUTEN, even though I am not cealic, have been tested, and it was negative, it has seemed to help me to avoid products with gluten,  my inflammation levels are as low as they have ever been in the last 15 years after this little experiement, and the Dr's reaction, just keep doing whatever it is you are doing because you are better than you have been in years, I agree, find if I eat bread, I feel worse the following days, find it very hard to follow this, but am always working on it.

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Hi Lyn,

Thanks for your response which is very helpful. Sorry my error- I take Methotrexate 25mg once a week but folic acid 6 days a week omitting it on day I take Methotrexate.

I would like to start gluten free diet as this has benefit me in the past.

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Hi Shabina, I’ve been on Benepali about 18months and found it very effective.  I started off on Humira and Methotrexate which controlled my symptoms well but my neutrophils dropped significantly. When I restarted with a lower dose of mxt I didn’t get the same relief so swapped to Benepali.  I’m no longer on mtx because of lung fibrosis.  I’ve had a few persistent chest infections and admitted to hospital with pneumonia because of the immunosuppressant effects and been on variable doses of oral steroids when I had to stop the Benepali. I’m currently back on Benepali and trying to reduce my steroids. Not sure if this helps but  I’ve been fairly happy  with  Benepali overall.  This disease and it’s treatment never seems straight forward does it?    Best wishes, Carol

7

Thanks Carol,

Sorry for the delay in replying. Your message was very helpful. Thank you. I am due to attend a training session regarding Benepali and will then start taking it soon.

You are absolutely right nothing is straight forward with RA.

Shabina