I have received funding for benapali hooray and hopefully will receive first dose in coming months. However, my rheumy nurse wants me to be on both sub cut metho and sub cut benapli. The metho (which i have only taken orally for last 2 years) gives me really terrible side affects and i feel does nothing for the flares. I have been off metho for almost 2 months due to persistent cough and I have continued to flare as usual, but manged, and felt more in control, less tired, no brain fog, less headaches, more energy, no sickness, no rashes, no sore throat. My rheumy nurse keeps calling me to tell me I need to be back on metho but I feel that this has not worked for me and the side effects have been terrible. I do feel bullied into taking the metho and want to try the benapli without the metho. How do I convince my rheumy to agree to this.
Any advice would be welcome
Thank you
Written by
MandiS
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Benpali is shown to work on its own as well as with mtx. Many patients that have bad effects of Mtx move to monotherapy with benpali. I understand your frustration, it's your body and your side effects. I think you should insist on monotherapy and see how it goes. Are you seronegative?
Thank you for the link. I will print this out and take it with me. I would love to manage disease without drugs and have tried but i still flare. I have considered seeing a functional Dr as I know that most autoimmune starts with leaky gut so my aim is to fix the leaky gut. I was told yesterday that I now have to go on 3 month course of antibiotics as precaution for latent TB- so very unhappy.
Strange thing. Those who are seronegative seem to often not tolerate MTX. So you tested possitive for the TB test? The antibiotics you need to take for the three months are not nice but I have understood that biologics often make a big difference in seronegative patients. So good luck with that. Getting along without meds is seldom possible but there are a lot of things you can do to decrease inflammation and increase wellbeing and for some to get away from meds. Not an easy journey to find what is good for you. Best of luck. xSimba
Wow this is exactly my experience (though with Roactemra) - I was taking MTX for years at increasing doses, experiencing worse and worse fatigue and muscle pain and dizziness etc, had developed lung nodules, and still was given increasing doses of MTX. But when tocilizumab introduced could not tolerate both, kept having to come off because of dropping white blood counts, and finally stopped both. Because I had a diagnosis of fibromyalgia no one conisdered my symptoms to be effects of MTX. Although went into a massive flare without any meds, all the fatigue vanished, and the muscle pain, and I only had inflammation in joints etc (though that was very very bad, I could not walk!) I point blank refused to take MTX again. Now only on tocz (Roactemra) - I have even taken myself off hydroxychloroquine (because of the research showing eye problems in "20-50%" of people who take it 20+ years!) and I am better than I have been for years and years and years, even going to the gym once a week to get my fitness back after 3 years of inactivity thanks to MTX. Go for it!
One of the reasons why they ask you to keep taking MTX is that without it, you can build up auto antibodies to the other medication and it stops working. This happened to me - I was on Humira (no MTX) and the Humira stopped working. Started Enbrel, again without MTX, and after working well, it became less and less effective so I started MTX. I’m now on Benepali and a low dose of MTX (injection) and have no side effects.
That’s interesting Clemmie, my rheumatologist didn’t tell me why but suggested adding in MTX again to benepali in couple of months too which I am loathe to do for same reasons as MandiS. Do you mind me asking how low a dose you managed with no side effects? x
Of course I don’t mind - I inject 10mg of MTX once a week, a few days after the Benepali. I’m not convinced that the Benepali is doing as good a job as the Enbrel but I have to give it a good chance to work. Certainly, I think the MTX has helped a bit since I started injecting it.
Thanks Clemmie, good to know. I’m not sure on benepali yet either, early days, got down to 12 mg MTX before but still had vile side effects so maybe 10 would do trick if I can’t just stay on benepali. Hope it improves for you too.
Thanks for sharing this info, I knew it was beneficial to stay on MTX but didn't know precisely why until now, I have just reduced down again to 15mg and hope to get to 10 eventually with benepali, nice to understand reasons as it is a horrid med, but useful it would seem. MTX didn't help me much with other DMARDS so I had lost faith but now in remission so it seems the combination is effective (was on 25 at start of benepali)
I would think your Rheumy & nurse would prefer you to also be on MTX because it helps benepali (& other biosimilars, anti-TNF's & biologics) work better. As Clemmie says too, there's less chance of benepali building up antibodies & it stopping working. It could depend on how bad your RD is, if it's severe or even moderately bad this will be the reason you've been recommended to take MTX with it. One thing though, you've only tried tablets & experienced the side effects. It could be if you're prepared to trial subcutaneous MTX injections that they would be less severe or even go altogether, they do for many people, including myself as it goes straight into the bloodstream. I was on tablets for around a year & when I started having an issue I swapped to injections & just feel a little more tired & have less appetite the following day, certainly manageable. It could be a lower dose would be all that's needed, by injection it's even possible you could take at least one dose off the equivalent oral, this is because it works better than tablets so it's feasible you would be on quite a low dose so less chance again of side effects. If you're not taking max dose folic acid that could also help, the dose can go up to 6 days a week, just not the day you inject. If you're certain that you'd rather not that's your prerogative, but as long as you're informed enough to state your case you shouldn't have any problems. It could be double therapy with another DMARD may be considered, not sure but do your homework & be assertive.
I think you have to be clear with them that you understand the risks of not taking MTX (antibody build-up) and it is your choice not to do so.
But expect to be pushed. If for the majority of people benpali works better and for longer alongside MTX then for the NHS it makes financial sense as helps them get better value for money out of the Benepali. So they will try.
I've just started on Enbrel, and had to go throught the antibiotic treatment first. I had to take 2 antibiotics and they are not nice. But since I have vivid memories of having TB there's no way I wanted to risk it again. It's soon over.... and finally the Enbrel seems to be working so it was all worth it.
I had the same question 4 months ago when I started Benepali as I wanted to cut out MTX injections which seemed to be having no effect on RA and some side effects. The rheumatologist agreed to drop the MTX dose from 20 to15 with a view to reducing to 10 if things went well. She explained that the Benepali would be likely to keep working for a lot longer with MTX added in.
I read some research on this that said that alongside biologics, 10mg. works just as well as a higher dose as a maintenance dose against anti-bodies .
As others say you might find injecting MTX a big improvement. It was for me.
Firstly I'd like to echo what nomoreheels and rosy said about switching to MTX injections - I couldn't believe the difference when I switched...they don't hurt, do it about 3 days away from your Benepali and a lot of the bad digestive symptoms should disappear, which is particularly good news if you're trying to improve your gut micro biome.
For the same reason, it might be an idea to throw in a really good probiotic for the duration of taking the antibiotics and possibly after.
The term microbiome is showing up in American TV ads in relation to a skin care product available over the counter. At first, I thought it was a marketing tactic. What is exactly the microbiome?
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