Anti inflammatory diet & Adulimumab

Ross1975

Hello,

My 1st time on the forum so I'll give a little background. Diagnosed with psoriatic arthritis over 3yrs ago. Been on Methotrexate 25mg weekly injections for almost 2yrs & into the 3rd month of Alalimumab fortnightly injections.

I'm going to be a bit cheeky and put 2 topics out to the hive mind, just interested to hear people's experiences and hopefully pick up some knowledge.

Adulimumab: So to give the drug the best chance I went on a fitness & health kick aprox 6 weeks prior to the course starting - no alcohol, healthy diet, 8000 steps a day, early nights early mornings etc. I felt the best I'd felt in a long time no flare ups, lots of energy, no fatigue. I had my 1st big flare up the week I started Adulimumab and it was more extreme than I'd had for a long time, I put this down to me just pushing it to hard as I'll had all this energy I wanted to use up. However my health has deteriorated over the passed 3mths. Flare ups have been more frequent I've been ill a lot, just generally feeling fluey, soar heads, fatigued, stomach pains especially after eating. I ended up in hospital, wh my back went, I was stuck on the living room floor for 24hrs before I eventually had to call an ambulance that was over a month ago and I've been feeling generally awful since, self employed so not been able to get much work done. Ive just had a txt msg to say my liver count is high so avoid alcohol and to top it off I'm pretty sure my hairs falling out!

After initial discussions with the rheumatology nurse I was under the impression that as a biological drug the side effects were minimal, compared to the likes of methotrexate. I only actually read the side effects sheet recently (which is my bad) and it was quite frightening. Going to discuss this with my GP but pretty sure I'm going to stop the course. Just wondering what other people's experiences have been.

Anti inflammatory diet: I'm wondering if anyone has had any positive experiences from being on an anti inflammatory diet or any supplements that have helped ie. Tumeric or Magnesium glycinate. And if so is their any links or literature you can recommend.

Thank you so much for reading my long ramblings and any input is very welcome.

Ross

noddingtonpete

Hello @Ross1975 and welcome to the Community. We are a friendly and supportive group and I hope that will be your experience as well.

I understand that you have psoriatic arthritis and have now been prescribed adalimumab and wondering if this and diet could be the cause of your flare-ups. Have a look at the following to see if it helps.

https://www.versusarthritis.org/about-arthritis/treatments/drugs/adalimumab/

and

https://www.versusarthritis.org/about-arthritis/complementary-and-alternative-treatments/types-of-complementary-treatments/

I am pleased to see that you are going to discuss this with your GP in the near future. If in doubt always go back to your GP/Consultant. I hope you get sorted soon.

With best wishes,

Peter (moderator)

jamieA

Hi @Ross1975

I've been on the adalimumab biosimilar Amgevita since July 2021. It was added to the sulfasalazine and methotrexate I was already on - which hadn't improved my condition. I gave up alcohol when I was first diagnosed with PsA in 2020 and put on sulfasalazine and Naproxen - after reading the leaflets for those two drugs. I gave up soft cheese, pate and anything undercooked when I was put on Amgevita as per the factsheet. I was aware that it left me more immunocompromised than just the MTX so I avoid crowds, crowded spaces and steer clear of anyone who is ill if I can. I haven't experienced any side effects from Amgevita that I've noticed. I did attend a Nuffield health joint pain course where I met two other people on biologics and both had changed biologics previously because they had either not worked or had unpleasant side effects. I do get fatigued the day or two days after I take MTX. I might be wrong but I thought it was MTX that caused liver issues and that is the reason we need regular 3 monthly blood tests - my GP refers to MTX as the reason for my blood tests.

The 3 drugs together have worked for me - a week after my 2nd Amgevita injection I could feel a difference and by 2 months I was able to hand back my crutches. My rheumatology nurse did say though that it was really good my first biologic had worked for me as they had 7 to choose from if it hadn't. I don't think getting the right biologic for an individual is an exact science but more trial and error. I met someone at the Nuffield class who was onto his 4th biologic.

I hope you get a solution that works for you soon.

Ross1975

Thanks for that Jamie, it's really brilliant to hear your off the crutches. 👏

I think your right about the bloods/liver count & MTX, just thought it was interesting that this is the 1st time I've had duff results. I'll watch out for cheese & pate going forward, I'm going to assume by that anything unpasteurised is bad.

jamieA

Hi @Ross1975

I think also blue cheese and anything with live bacteria as well as rare cooked steak is out I'm afraid. I think your GP is supposed to put a flag onto your records to show you are immunocompromised. With that you get free covid lateral flow tests (ordered through the government website) and access to anti-viral drugs if you contract covid. I don't know if your back problem has been a long term one but one thing I was told is that PsA can cause damage to your sacroiliac joints - the joints between your pelvis and the base of your spine. In fact I had an MRI scan of my lower back early on in my treatment and they've discovered my right sacroiliac joint is damaged. It gives me intermitted pain and I was prescribed lidocaine patches which work for me when it occurs.

Ross1975

I can go without cheese but no steaks!?😳 Think I might role the dice occasionally on that 1.

The annoying thing about my back was that the Dr at the hospital classed it as a back injury rather than a reaction to the PSA so when I got out of hospital and contacted the rhuematology nurse, she was very quick to tell me it wasn't Arthritis. I had to convince them to give me another appointment and push for an MRI. No complaints up until now but that was a bit frustrating.

Thanks again Jamie and all the best.

jonr

Hi @Ross1975,

As I have OA I can't and won't comment on the side-effects of the drugs you're on but I'll be pleased to pass on my findings regarding diet and supplements.

I eat quite a lot of foodstuffs which are Omega-3 rich, plus dark green leafy vegetables and I don't think I eat enough of them to notice any significant difference to my condition but at least it's healthy eating. The exception is Olives which contain a substance reportedly quite similar to Ibuprofen, they do appear to have a noticeable effect with me at least.

In terms of supplements, I've tried loads - some work, some don't and some make things worse (Glucosamine, green lip mussel extract and cod liver oil in my case). For anti-inflammatories I take Boswellia and Bromelain capsules and for pain-killers it's CBD capsules. I also take Liverel because it's a good all-rounder and includes Turmeric though I understand it may conflict with meds like Omeprazole which along with Naproxen are the only prescribed drugs I take.

I started on Acupuncture about 4 months ago, initially going weekly for 2 months, then scaling it back to fortnightly and now monthly. For me it's made a big difference - less frequent flare-ups, significantly less background pain and no more locks (I have severe OA in both knees, awaiting a double TKR). I'm now managing my condition pretty well and able to lead an active, almost pain-free life but it does catch me out from time to time!

Lots of info on the website about supplements, it is a bit hit and miss I'm afraid and do check with your Rheumatologist and/or GP before taking the plunge.

All the best,

Jon

Ross1975

Thanks Jon, it's definitely seems to be a very personalised experience, what works for some doesn't work for others. I've got and appointment with rhuematology Dr on Friday so I'll discuss with him before taking anything. Olives is a new 1 hadn't heard that before and I do love an olive.

Great to hear you're symptoms are improving.

Cheers

Ross

jonr

Hi @Ross1975,

Yep - there appears to be no exact science in terms of diet and supplements, a true case of "trial and error".

Incidentally, Olive Oil also includes these Phenolic Compounds too, so also a good idea to use that instead of bog standard vegetable or rapeseed oil when frying, etc.

Also good to know what to avoid too - precessed sugar products and white bread are the main 2 as I understand it.

It's quite strange - my condition has worsened since my original diagnosis but I'm in such a good place I am seriously considering cancelling the surgery.

Good luck, hope you find a combo that works for you

Jon