Going to start biologics soon...........

[Frankiefocus]

So I got the call from my rheumy nurse as king how I was and that after a year on MTX it would be a good move for me to try biologics. My question is are they better then MTX for fatigue? as I get that alot aswell as the joint pains.

[Hidden]

Good question... unfortunately again it’s so individual. I’m on etanercept along side mtx and it hasn’t sorted my fatigue and not fully successful anyway. Others have done well. I’m due to change to Baricitinib and I’m told this is a good drug for fatigue by my Biologic nurse it’s also one of the drugs that can work well independently from mtx so we are hoping I can reduce the dose on mtx once settled as it’s causing a few issues.

Trial and error I’m afraid. Personally I will try anything if gives me quality of life if doesn’t work I stop the medication and try something else.

[sylvi in reply to Hidden]

I did well on Baricitinib and was taken off it due to having a chest infection. xxxx

[Bopeep12]

I know its all trial and error but personally I do much better on biologics than dmards

[oldtimer]

For most people fatigue is linked to the amount of activity of their disease. If it's active you are more fatigued. It's likely, therefore, that if your disease becomes better controlled by a biological treatment your fatigue should lessen as well. Your rheumy team obviously feel that it isn't well enough controlled on methotrexate.

[medway-lady]

Not for me sorry. x

[chunkypie]

I've been on many biologics over the past 10 years and the great thing about them is I've never had any side effects what so ever although some worked better than others. I'm currently on Hyrimoz and has been the best so far apart from a trial drug I was on many years ago.

[Lolabridge]

I had bad reactions to all the DMARDS so had to try biologics. The first one didn't work well for me but the second one did and I feel almost normal now. I have far less joint pain or fatigue although I do probably pace myself so much better these days. I can because I'm retired and don't have any grandchildren (yet!). I have no side effects, which is more than I can say about the DMARDS which all made me very ill!

So I agree with old timer. If you still have a lot of fatigue and joint pain it would seem that MTX is not working well enough for you which is almost certainly why the nurse has suggested biologics. I'm sure that your team will suggest you try one to which they think you will be best suited.

[Mistydawn]

Hi, I struggled with DMARD's and was put on Orencia three years ago. For me it was indeed a wonder drug that worked virtually immediately. The best thing is that it is the only drug I take for RA. I did suffer from a resurgence of migraines initially when I was on a weekly dose. However, as I am petite, I dropped to once fortnightly dose and have had no further side effects. Good luck

[medway-lady]

If your in the UK its 2 DMARDS before a bio, I love Lefludamide which really worked well for a long time. Worth asking about, and side effects for a couple weeks then remission.,

[paulipauli]

Hi there - as my wife discovered, these drugs are bloody awful. She wondered which would get her first - the drugs of the RA! She's been drug and pain free for five years and despite my efforts to convince the people who run this site to feature diet/lifestyle changes as a treatment, no dice. We didn't believe it would work to be honest, but it did. Here's a brilliant talk (by a Dr!)we saw which explains how RA starts and what to do about it:

youtube.com/watch?v=ldsMEHV...(Not working as expected?)

Also take a look at "What the Health" and "Forks over Knives" on Netflix.

If you want to see and hear hundreds and hundreds of people talk about getting their lives back with simple dietary change then look here:

youtube.com/c/PaddisonProgr...

Rheumatologists can't mention diet by the way - we asked ours why and he said the NICE won't allow it since there's no double bind, random, placebo controlled crossover trial to demonstrate effectiveness. However research does support it and here's a review to that effect: frontiersin.org/articles/10...

Here's Paddison taking us through it: youtube.com/watch?v=ShxStJO...(Not working as expected?)

I wish you the very best of luck whatever you do.

[medway-lady in reply to paulipauli]

I can't think of anything polite to say about these diet posts RA is in the fossil records, in medieval bones when no processed food existed, but if you think something will help like in a medical trial when some get a placebo medicine some will believe themselves better. The drugs are NOT bloody awful but give the vast majority a good life without pain and so I'd warn be careful to the OP as being on you tube doesn't make it true or even a good idea. But then again why doesn't your wife post about being pain free? as I find it odd you write of the 'we' not I, which would enable those interested to discuss with her direct how she is following such an extreme diet.

[AgedCrone in reply to paulipauli]

NICE are right....as we are all different ...to make any sort of controlled comparison you’d have to lock lots of participants in a room -For X amount of time- feed them the same thing every day and see how each one reacted - I don’t think that’s going to happen any time soon.

The majority of diets advertised as having any effect on Rheumatic diseases are simply normal healthy eating regimes..... which most people work out for themselves.

[Mmrr in reply to paulipauli]

Does your wife ever post her RA experience for herself ?

I would be very interested and would probably find it beneficial speaking to a fellow RA person than via a proponent "lost in translation" and all that.

[Frankiefocus in reply to paulipauli]

I have been on a plant based diet for over a year now..after reading McDougals book The Starch Solution. The reason I started this diet was because I had R.A but it only improves my digestion problems and thats why I,m still on it. As for Mr Paddison..is he not the Australian comedian that now takes up to $500 dollars to join his online forum for R.A advice.? I did do a bit of research on this program and its the exact diet that you can read for $10 if you purchase Babara Allens book Conquering Arthritis.

[Hidden in reply to paulipauli]

It is always good to have people put forward a different opinion and for this reason NRAS have decided not to remove this reply despite multiple reports of abuse. However, let us counter your reply.

I want to start with responding to the implication that those who follow the Drs instructions about medications are doing so because they haven't done their research. This is untrue and quite offensive and why you have had the reaction you have, not because people don’t want to hear what you have to say

The sad, universal truth is that, at the moment, there is no known cure for RA, the best we can hope for is remission and symptom management. Your wife may well be in remission, or at least have good symptom management and she is very lucky indeed. It would be interesting to know what is going on with her blood tests though.

I did look at a few minutes of Dr McDougalls presentation but the fact that he did not know what a Mediterranean diet is made me switch off. He may well be a medical Doctor in the USA, but he is a MD with a business selling his diet to cure RA, and just about everything. One American GP who says he has found a dietary cure does not outweigh the 4997 Rheumatologists in the USA (2019) who say there is no cure, dietary or otherwise. If you want good, scientific based information about diet, in my research, I found a good article on the British Dietetic Association bda.uk.com/resource/rheumat...

I would also like to dispute that we do not feature diet/lifestyle changes as a treatment. If you visit nras.org.uk you will find a lot of information about this and we have recently conducted a very successful RA awareness week (RAAW) featuring, diet, exercise, meditation and mindfulness in the treatment of symptoms of RA.

Your wife's rheumatologist may not be able to speak about diet, but many are more than happy to include it in their treatment plan. They understand that RA is a multifaceted disease which require collaboration with a wide variety of other health professionals such as physiotherapists, occupational therapists, podiatrists, ophthalmologists and dietitians. They also understand that they may not be the expert in all these areas. There are 1000s of double bind, random, placebo controlled crossover trials to demonstrate effectiveness and safety of the medications prescribed by trained Rheumatologists, which can be absolutely fascinating to research if this is what motivates you.

I have just found a fascinating site that can aid in research that you may be interested in. senseaboutscience.org

[medway-lady in reply to Hidden]

Well said and it's not often I say this but thank you and can you check the IP address as this story has been used before.

[paulipauli in reply to Hidden]

Thank you for your thoughtful words. I don't think for an instant that people who are following a consultants advice only do so due to lack of research - if that's how anything in my post came across, then please accept my apologies. We know from the experience of my wife and others that diet change can work extremely well. Nobody says that it comes with a copper bottomed guarantee to get you off medication, but it has done in many cases and allowed a considerable reduction in required dosage in others. Since no powerful drug comes without risks and side effects, such a result is no bad thing.

I think that perhaps the difficulty Dr. McDougall and many others have is that the "Mediterranean Diet" is a very general term. With so many countries bounding the Med, we end up with a thousand and one variations on a theme, which from a nutritional fine-tuning point of view is not so helpful.

I feel that I must point out that Dr McDougall does not sell an "RA curing diet". His talk on Inflammatory RA is simply that - information to enable people to make an informed choice. His recommended diet is available gratis on his website, as is a whole host of supporting information and links to the scientific research. He offers paid for educational weekends and retreats featuring lectures by professionals - MDs and dieticians, etc.

The McDougall diet by the way is not an "RA specific" diet - it is about reducing the risks of getting and dying from chronic (western) diseases.

My wife has been permanently signed off as an RA patient since all her markers are normal now. She has kept the letter - she nearly cried when she received it after everything she went through.

I have looked at the NRAS dietary advice and also the BDA page you linked. The ideas regarding healthy sources of many macro and micro nutrients have not quite caught up with the science. Taking one example: although the Omega fats may be helpful, the advice to eat lots of oily fish might not be the best suggestion. Without going into a raft of detail, it would probably be better from a health and environmental standpoint to get the omegas from flax or chia.

In the end, as long as there is openness and debate and a willingness to look at lots of different approaches, we should hopefully come out on top.

By the way, theres an autoimmune talk by Dr Pam Popper which you might prefer - along with another (maybe a little controversial?) on informed medical decision making.

youtube.com/watch?v=ueEuvDo...(Not working as expected?)

youtube.com/watch?v=icWucQi...(Not working as expected?)

[Mmrr]

We are all individual as you know, but personally I have found biologics much less troublesome fatigue wise than MTX, no comparison really.

[AgedCrone]

Not necessarily better...just different ....& as with all the drugs we are prescribed, they don’t come with guarantees ....but many thousands of people are having good results on them......I hope you are one of them .