I was wondering if you could help

[Faith4]

Hi Everyone,

I hope you are all as good as we can be in these very scary times. I haven’t written often, but I constantly read through the messages and feel a sense of belonging in knowing there are people out there who truly know what living with R.A feels like both physically and emotionally. I have 2 questions if anyone has any advice, knowledge or thoughts they could share.

I’m on Methotrexate which isn’t working very well anymore. I was then put on Bariicitinib-Olumiant, this made me feel very unwell so they then tried Orencia injections. That hasn’t worked either so now I’ve been given a script for Humira injections.

I know all our R.A medications are scary, but for some reason this one has me a little cautious.

I’m wondering if anyone could share both positive and negative experiences they’ve had with this drug please. I know the decision is mine to make but I just want to gather information from the people that truly know.

My 2nd question is, has anyone tried the Patterson Program? I did look into it a few years ago when I was 1st diagnosed, I think I lasted 2days tops. It’s a very strict eating program which has meant to have amazing results but back then I just found it beyond me. I always try and eat healthy foods and exercise often (walking) but a life of seaweed and buckwheat was a little to extreme for me.

Thank-you all so much for being there and making this otherwise very lonely journey manageable.

Stay safe and well xo

[allanah]

I was on Humura and it was marvellous , worked very well, it unfortunately only for me stopped after a couple of years but now on TcZ which is great too .

Paddison , that opens a can of worms on here !! NRAS website provides diet advice free!! X

[Faith4 in reply to allanah]

Hi Allanah, oww so glad to hear it worked well for you with no side effects. R.A is quite a journey. I don’t think I could handle the diet regime of the Patterson Program, but at times you just get desperate and reach out to anything that may give you hope. I do try hard to eat healthy foods.

Thank-you so much for sharing :0)

[allanah in reply to Faith4]

Well I lost 8 stone by following a roughly a keto diet given to me by the hospital dietician .

But basically I now have just healthy Mediterranean style diet but use a smaller plate is what I'm at now and it works well.

[helixhelix]

Can’t advise re Humira, as I’m on Enbrel which is another anti-tnf.

I really support making as much effort as you can to look after yourself through lifestyle, rather than drugs. And diet is a big part of that. But I think for all but the exceptional few some of the specific diets are really not worth stressing yourself over. Of course you could be the person that it works for, but probability says not. And there is still no research evidence that it works.

Always worth looking at what you eat and trying to improve it, so consider how much processed, sugary and fatty food you eat and try to replace it with better alternatives. Eat lots of fish, fruit and veg, and try not to eat meat often - and not processed meat. Keep to a normal weight, take exercise every day, and if nothing else your general health will improve.

[Faith4 in reply to helixhelix]

Hi Helixhelix, thank-you for your reply. I do try my best to eat healthy. I don’t eat red meat at all but do enjoy fish.

Thanks Again

[Brushwork]

I’m only responding to your 2nd question. I have tried just about every eating regime imaginable. They all work for a while, I think your body responds to the shock of a different eating plan, but it’s always short term, don’t waste money buying into any plan, there are plenty that are free to interpret or follow.

That said, I have found that periodic fasting combined with time restricted wasting and a veggie diet helps. The fasting gives you a few days of relief, it’s not long term, but can be a management technique. I also do a 5:2 (800 call) a couple of times a week, again I feel it helps. I know when I slip into a normal veggie diet eating pretty much what I like when I like, I feel less well after a time and then feel better when I go back to something managed.

This is just my experience, I’ve experimented and researched for the past 23 years and this is what I’ve found to help me. I’m not recommending it, just sharing my own experience. It’s not a cure, it’s just a way to manage my RA to some extent,

[Faith4 in reply to Brushwork]

Hi Brushwork, thank-you so much for sharing your experiences. I know we all respond differently to things, it’s fabulous to be able to gain information from people that live the R.A journey.

Thanks again

[linmar]

Hi Faith4

I've been on Humira since 2011 since my sulphasalaze stopped working, it's the best thing I have ever had. For me I can say my CRP which had gone back upto 30, within a fortnight of having the injection it had dropped to 1.7. How amazing was that. I am on 4 Methotrexate tablets aswell which I am told works together with the Humira. I've gone from injecting every two weeks to every three weeks and my CRP inflammation has never gone above 2. Long may it continue. In the first fortnight I could crouch down instead of bending over to pick things up. I got R/A through out every joint (not hips or back) all of a sudden over about three week when I was 44 I am now 69 and in the last 9 years since 2011 have never felt better. Humira gave me my life back. I am now on Amgevita which is still Adalimumab but cheaper for the NHS I was told by my rhumatologist Nurse. Hope that helps, I hope it works for you.x

[Faith4 in reply to linmar]

Hi linmar, wow that sounds incredible. It’s very reassuring to hear something so positive regarding Humira. There are so many scary reviews around, as there is with all medications I know.

Thank-you for sharing your experience.

[Dobcross1]

Hi there. I can't comment on meds as I've only ever taken MTX. I tried the Paddison diet when I was first diagnosed. It really didn't help me at all and I lost a stone in weight which I couldn't afford to lose. This is only my experience maybe it would work for someone else...

[Faith4 in reply to Dobcross1]

Hi Dobcross1, thank-you for that. I just watched a clip of the guy promoting his program. As impressive as it looks it’s not something I think I could sustain. I’ll just stick to healthy eating with the occasional human slip up ;0)

Thanks Again

[beeckey]

Hi Faith i was on Humira a long time ago.It only worked fort a short time for me but had no problems with it but a lot of people do very well on it.Hope it goes well for you.Keep safe

[Faith4 in reply to beeckey]

Hi beeckey, sorry to hear it didn’t work for for you for very long . It’s good to hear there were no bad side effects though. Hope you found something that works for you now.

Thanks again.

[Gracie2019]

Humira injections were a miracle for me for about a year. Then unfortunately, I developed pustular psoriasis on my feet and hands, a very painful condition, which was finally diagnosed as triggered by the Humira. Once I stopped the Humira, the psoriasis was gone within about a month.

I am now on a different RX, a once a day tablet by the same manufacturer, called Rinvoq. So far, so good, though I have had a return of mild RA symptoms since switching medications. Hopeful the Rinvoq will kick in after several weeks (they say up to 6 months for maximum relief).

Best of luck to you. This dreaded condition seems to affect each of us differently, and the response to these meds is also different for each of us. Humira might turn out to be exactly what your body needs. If not, keep trying. 🙏

[Faith4 in reply to Gracie2019]

Hi Gracie2019, thank-you for sharing your experience. R.A is quite a journey, no warning just bang straight into it. I hope your new medication helps with no painful side effects.

Thanks again.

[Angels-delight]

Hello Faith4, to start with we are all different and react differently to the meds. At least your Rheumy is trying different meds to see which one works for you. I couldn't take MTX due to severe side effects, the 2nd med I haven't heard of, the 3rd med worked great until I had to stop for a while due to another health issue and when I started the medication again it didn't work, the same happened with tocizumab infusions. Just keep trying the different meds until you find one that works for you. All the best, good luck and keep speaking with your Rheumatologist.

Stay well and stay safe.

Sue

[Faith4 in reply to Angels-delight]

Hi Angels-delight, thank-you for sharing your experience. Yes I’m very lucky with my Rheumy he truly listerns to what I’m saying, it’s a 10 hour round trip to get to him (I live in the country) but he’s worth it.

Thanks Again

[Gladjake]

Hi Faith 4

I too can’t comment on other meds .i have been on hydroxycloroquine and methotrexate injections for 7 years since diagnosis,been having a few slight flares recently but nothing major (touch wood)my daughter has a friend who was put on Humira after trying various other drugs that didn’t work on her for one way or another,but she said Humira has turned her life around .if the methotrexate stops giving me relief I will certainly talk to my rheumatologist about it. I would not be able to do the diet you mentioned no way.

Good luck keep safe

[Faith4 in reply to Gladjake]

Hi Gladjake, glad to hear there’s someone else that couldn’t stick to that diet plan as well lol. That’s great news regarding the Humira injections, I’ve got to hear so many positive results for it through healthunlocked .

Thank-you.

[LitChief]

Hi I tried Humira and it made me worse as it increases histamine production and I have histamine intolerance. I was on Orencia after that which worked for 6 months but I hate wrecking my immune system and the mouth ulcers were awful so have come off Orencia and given up dairy and gluten, trying to eat organic. My symptoms are almost gone. Early days, it has only been a month but as a scientist it makes more sense to treat the cause rather than the symptoms. And I got Covid due to being immunocompromised which was no joke!!! Good luck. If you want to try diet Shelly Malone's book Inflamed is a real eye opener!