Benepali with sulfasalazine

[Haz58]

Hi all. Is anyone else on weekly 50mg benepali EpiPen plus 3g sulfasalazine a day?Start my benepali next Tuesday with trepidation as usual and have been on 3g sulfasalazine for quite a few months now.

[KittyJ]

what about it is concerning you? It’s a very easily administered injection ( not an epipen 😊) hopefully we can allay your fears.

[Haz58 in reply to KittyJ]

I was told to read the patient leaflet by the nurse who will train me to inject and it says in there about taking sulfasalazine with it. Pic above. So many problems so far with most meds they've put me on so im very nervous.

From patient leaflet for benepali

[KittyJ in reply to Haz58]

It just says tell the pharmacist so I would think they and your rheumy know what you’re on but if you’re that concerned you could call and check they know.

[KittyJ in reply to Haz58]

here you go

Drug interactions Etanercept and sulphasalazine

[Haz58 in reply to KittyJ]

Thank you Kitty x

[AnnieJ123]

I have been on sulphasalazine for around 20 years and was put on Benepali last March and was told to decrease the sulphazalasine slowly until I was off it which is now the case.My neutrophiles dropped so that I was neutropenic. The leaflet states that this is a rare side effect and caution should be taken with this combination of meds. I keep getting bowel problems too. The Benepali helps my RA but not my white blood cells and immunity. I am about to have another blood test and will review the results and medication with my rheumatologist shortly. Having low immunity worries me considerably. We are all different and react differently so see how you go and what your blood tests show. Good luck.

[Haz58 in reply to AnnieJ123]

Thank you Annie. I'm sorry the combination didn't go well for you. Fingers crossed 🤞 I know everyone is different. My body just doesn't like most meds.x

[Brikel in reply to AnnieJ123]

Hi Anna

Benepali Taking all the pain away was a game changer for me, until I acquired pneumonia (PCP) and was hospitalised

Apparently the Benepali had reduced my immunity to zero. Allowing all sorts of virus into my lungs ( a Bronchoscopy taken while I was in hospital confirmed this ). The Benepali has been stopped as well as all other medication for RA

.So far I’m doing well after 4 months without any RA meds

The consultant may put me back on Sulfasalazine if a flare presents I hope this helps

Regards Brian

[AnnieJ123 in reply to Brikel]

Thank you for sharing Brian. I am glad you are now doing well. We have to give new meds a chance but it is not worth having the immune system reduced so we can have serious infection. I proceed with caution too and way up risk. I wish you good health and all the best.

[Brikel in reply to AnnieJ123]

Thank you

[Haz58 in reply to Brikel]

I'm so sorry to hear this Brian! It's a worry going on biologics but I have to try as everything else has made me I'll or with sulfasalazine it's not enough. I got to the point I could do anything and had to use a wheelchair if I had hospital appointments. It was dreadful.

[Brikel in reply to Haz58]

I was a champion for Benepali , telling everyone what a brilliant product it was.

Unknown to me it was doing more harm than good.

I’m off all RA meds at the moment and doing well .

I hope whatever you do is beneficial to you

Regards

Brian

[KittyJ in reply to Brikel]

What harm was it doing Brian?

[Brikel in reply to KittyJ]

I didn’t think it was doing me harm until I caught a virulent strain of Pneumonia ( PCP)

After a Bronchoscopy I was told my immune system was zero and they put the blame on Benepali , and stopped it . That was back in May this year . To date I have been off all RA meds and doing ok.

Hope you’re keeping well

Regards

Brian

[KittyJ in reply to Brikel]

Thanks for that Brian, I’m glad you’re now doing ok 😊

[Jackie1947]

I've been on Sulphzasaline for 18 years. I've been on Benipali for 22 months. For the first time ever my RA is in remission. Never felt better. Be positive!

[AnnieJ123 in reply to Jackie1947]

Thank you Jackie. I am so glad the Benepali has helped you. It has helped me too. Although I am positive I like to know the facts and weigh up benefit and risk. Like you I have bowel problems but have been on Benepali for a shorter time.The RA in my hands is considerably reduced. I am hoping my next set of blood tests will be favourable. Good luck with the microcolitis and your RA. Best Wishes. Annie.

[Haz58]

Great thank you!

[JEM95]

I find Benepali absolutely wonderful - it changed my life for the better!

I’ve not had any issues with it, I stick it under my arm to warm it up before injecting as it stings a little if cold.

The hardest part about it is opening the two-pack box!!

I’m sure you’ll be fine x

[Haz58 in reply to JEM95]

Thank you JEM 😊. Yes I couldn't open my 4 box last night to get the leaflet out 🤣 I've stopped reading the leaflets but told I must so I did. As soon as I saw the sulfasalazine bit I panicked a bit. Only time will tell I guess. 🤞

[Bethany02]

Hi I was on benepali and suphazalazine for quite a few years and had no issues at all with either unfortunately recently I began having flares over and over so I have been changed to tociluzumab too soon to say anything about that but hopefully the same as the benepali

[Haz58 in reply to Bethany02]

Thank you Bethany 😊 I hope your new meds sort it for you. X

[Bethany02]

Me too had worked with rheumatoid patients years ago and seen the destructive nature of this disease so glad to be able to get these drugs that keep it at bay

[Brikel]

Hi Has

I WAS taking Sulfasalazine and Benepali

The Benepali was so effective that the consultant weaned me off the Sulfasalazine

I’m no longer taking either

Regards

Brian

[Haz58 in reply to Brikel]

Wow that's great! Thank you Brian.

[Tatiana13]

I have been on this treatment for 3 years no problems in my recent visit they reduced the sulfa to twice a day as all was working fine ,good luck

[Haz58 in reply to Tatiana13]

Excellent thank you Tatiana. X

[Louise0000]

I take sulfa and benepali together

[AnnieJ123]

I share you concern. I was on sulphasalazine for 20 years but needed something stronger . I was put on benepali a year ago and my rheumatologist advised me to slowly come off the sulphasalazine. I developed mild neutropenia which concerned me deeply , but not my GP or rheumatologist. I googled Internet articles and found that developing low neutrophils, neutropenia if on benepali and suphasalazine is a rare side effect. I think, 1 in 100 might develop it. The longer you have been on it the greater the risk. In addition I weigh around 53 kg ] 8 stone 7 and Benepali should only be given if you are over 67 kg around 9 stone 6. I weigh less than this. It is right to be concerned, and to be aware of risks and benefits, and to get good monitoring . Good luck.