Straight on to methotrexate injections?: I am newly... - NRAS

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Straight on to methotrexate injections?

Yansouneh
Yansouneh
40 Replies

I am newly diagnosed RA. I have been and will continue to work very hard to have 'optimal' diet for supporting my immune system. A lot of this involves trying to 'heal the gut', so I am keen not to throw medicines down there if I can help it. I am already having to take naproxen for pain which I'm not happy about. Anyway, when I go for my appointment to start methotrexate, is there any reason they won't let me go straight for injections instead of tablets? Injections are better yes?

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poemsgalore1

Looking at it from the NHS point of view, injections are more expensive. NRAS have a booklet about all the medicines for RA which you can either download or send off for (free).

nras.org.uk/publications/me...

It might be worth a look.

As for supporting your immune system, as you have a disease caused by your immune system, the idea is to suppress it as much as possible to keep the disease under control.

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Yansouneh

Thank you. The way I'm looking at it is, the immune system is 'broken' so I'm doing all I can to fix it! Ultimately I'd like to come off medications again so if I can mend the immune system that's more likely to happen. It's got to be worth a try anyway!

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Agoodlife
Agoodlife
in reply to Yansouneh

There are other explanations that to me have sounded more logic. Today research has shown that RA is most probably a metabolic disease that true enough has lead to the immune system is no longer working as it should. Actually it is trying the best it can to fix the situation .Immunosuppressants are in fact not making their job easier. I have found ways that in my case actually do.

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Brushwork
Brushwork
in reply to Agoodlife

I have tried, so hard and for so long, to control my RA through fixing my gut, eating a supportive and healing diet. While I found that it helps, lots, and indeed appeared to work for a time, the RA always comes back.

Now, I take a more balanced view. My immune system continues to attack my body, so suppressants are necessary. My responsibility then, is to give my body as much help as I can by ensuring I feed it properly, but at the same time, not feed the inflammation. The combination, is necessary, at least for me. This approach means that I take a Biologic drug and follow a healthy, anti-inflammatory diet, take as much exercise as I can and take vitamin and mineral supplements. I rarely need to take anti-inflammatories or pain relief.

We are all different, in our life styles and in the way RA affects us. We need to find our own path. Even when we find that path it may change as RA progresses.

Good luck.

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Yansouneh
Yansouneh
in reply to Brushwork

Very good to hear of your experience, thank you. That is my approach - to help my body as much as it can and then if I have to keep taking the meds. My goal is not to take meds, but I guess I will just have to see....!

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Brushwork
Brushwork
in reply to Yansouneh

Honestly, that was my goal and I succeeded for a while, but it didn’t last

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Pinkypie2018

I don't think any of us are keen to take these medicines but let's face it we need to take them unfortunately. You can certainly ask for injections but I do think they like to try tablets first as they are cheaper and easier.

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Yansouneh

Thank you. I did think the cost might be a factor.

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Agoodlife

I think it’s because tabs are less expensive and that they really do not believe in healing the gut with diets. I think if you have chosen Mtx you should insist on injection.

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Yansouneh
Yansouneh
in reply to Agoodlife

Thank you.

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AgedCrone
AgedCrone
in reply to Agoodlife

Unfortunately the NHS does not work like that.

“insisting” on trying to devise how your medication is prescribed is not to be recommended.

By all means have discussions with your clinicians about treatment, but insisting may cause problems as refusal often offends.

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Yansouneh
Yansouneh
in reply to AgedCrone

Thank you. I do understand what you are saying.

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nomoreheels

As has been said we're usually started MTX on tablets for cost reasons as you may well have no reason not to change them. So unless there is a valid reason not to it makes good sense to remain on them, they're easier to travel with etc, you've no temperature control to consider or sharps box to tote around or find another way to dispose of the pen. There is quite a difference in cost (tablets average £2.00 for 24 as opposed to around £15 [depending on dose] for one autoinject pen). Subcut is usually reserved for if MTX is suitable, ie controlling the disease, but tablets are causing intolerable side effects or causing liver problems... often a lower dose subcut to tablets may be an option, or when it's intended use is as an anchor med used with biologics.

I wish you luck in helping yourself through diet, it is important to be as proactive as possible but please don't be drawn into any 'plans' which you need to pay for. We've seen it so many times here, people wanting to do all they can to avoid needing meds but rarely does it ever work unconditionally. Believe me you don't want uncontrolled RD & having burnt your boats with your Rheumy! Have a word with him/her at your next appointment as to if what you intend doing is likely to be helpful. The only recommended diet is a Mediterranean style one which I follow, basically just using your noddle & eating healthily. I continue to eat as I did when I lived there but do include more dairy than is recommended as I'm osteopenic/borderline osteoporotic.

Naproxen will be helping pain because it's an anti-inflammatory (NSAID) & not everyone shows inflammation in their blood. I'm one of quite a few here that don't either.

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Yansouneh

Many thanks. Yes I don't want to burn any bridges but I do feel strongly that I can do a lot with my diet to help. I've recently had a metabolic test and found out I'm in dire need of many vitamins and minerals, plus I'm full of toxins, etc, etc. So even if it doesn't help the RA, its gotta be good to sort that out anyway.

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nomoreheels

I don't doubt you, many of us have or have thought we could, but you must make your Rheumy aware of your intentions. If you're deficient in something that's one thing but your Rheumy needs to know what you're taking that's not prescribed, just as he'd need to know what other meds other than those he’s prescribed you take. It's important when he prescribes in the future too, so he's aware if they are containdicated, plus it's courteous to keep him informed.

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Yansouneh

Absolutely. Good advice, thanks.

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Brushwork
Brushwork
in reply to Yansouneh

Diet helps, a lot. It is as important as taking medication.

Nothing you do should alienate your Rheumatologist! He/she should be completely sympathetic to your need to have some control and to try all avenues.

I do agree though, that buying any plan that claims to cure RA is a waste of money. I have never done it myself, but really, if there were a miracle cure... Instead, I do a lot of research on RA, and read all the studies that surround it. I then incorporate things that I learn, if they seem to have been properly studied and proven.

I am practically vegan, and avoid refined sugar while limiting natural sugar. Sugar and fat both feed inflammation.

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AgedCrone
AgedCrone
in reply to Yansouneh

Who referred you to have these metabolic tests? If it wasn’t the doctors who are treating you- you should show them the results.

If you had them done by one of the companies who advertise on line...don’t be surprised if your doctor is not impressed. A large number of the results from these companies are proved wrong when checked.

Does the company you used also sell supplements & vitamins?

Unless you are eating a very restricted diet, or have another condition as well as RA ....it is very unlikely you need to spend a fortune on supplements.

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nomoreheels

Good & relevant point.

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Yansouneh
Yansouneh
in reply to AgedCrone

Hello. Thank you for your concern. The world is definitely full of cowboys! But I am seeing a qualified Clinical Nutritionist who has a BSc in Nutritional Medicine, qualified in Clinical Nutrigenomics, MBANT registered, amongst other things. The test was done through a separate company, Genova Diagnostics, and all supplements are purchased through separate companies.

I truly hope that the Rheumatologist I see this week will be open minded to consider the results and advice I have been given!

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Yansouneh

Oh and very good point about the convenience of the tablets rather than the injections - I had not thought of that so thanks again.

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Lyndy

Mtx is generally taken one day in seven... so I wouldn’t fret too much about it’s effect on the stomach.. unless it makes you feel yucky.

The patient pathway suggests hitting disease hard with disease modifying drugs soon after diagnosis as a way to mitigate the long term effects. Have a chat with your rheumatology team about what outcome they are trying to achieve for you... it may help to understand their rationale xx

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Yansouneh
Yansouneh
in reply to Lyndy

Thank you. I had forgotten that it is only taken once a week, so that is good to remember.

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helixhelix

Many people have no problem with the tablets, I didn’t for years. So from the NHS’s perspective why spend extra money unless you are sure it is warranted? As soon as I did start to have problems with the tablets (mouth ulcers) I was swapped immediately.

In terms of your gut, this is fed by your blood stream so I would think it makes absolutely no difference which way you take MTX as it emds up in your blood stream. There are some drugs - like naproxen - that can irritate your stomach lining but MTX isn’t one of them as far as I’m aware.

I did a lot of work on my lifestyle after I was diagnosed, so lost weight, took up exercise and cleaned up my diet to cut out processed and fatty foods. However with sero-positive aggressive RA I also didn’t want to risk permanent damage, so I took drugs as well. My hope was that I would eventually be able to taper off the drugs, but that hasn’t been possible as every time I try the RA comes roaring back. However apart minor issues like the mouth ulcers (which went away) I have not had any significant side effects from the drugs I take. I put that down to my good lifestyle.

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Yansouneh

Thank you I appreciate this reply. I think I am starting to feel, after reading other comments here as well, that it may well be worth trying the tablets first. But it is my understanding that the gut feeds the blood rather than the other way round. It passes all we eat through villi (which is the lining that can be damaged) and then the blood passes round the nutrients etc to the body. So I guess the blood does then return energy back to the gut to do its job. I will read up some more! Thanks again.

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helixhelix

I wasn’t being hugely clear, as this is a complex process. But my logic says to me that if you have MTX in your blood stream, then how it gets there is a very minor issue in terms of gut health if it is not a drug that irritates stomach lining.

The whole leaky gut idea is about things that negatively affect your microbiome, so antibiotics are a big one, as is eating a limited diet with high proportion of fatty food. But does MTX have an affect on gut flora?? Not sure it does.

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Yansouneh

Ok. I think you are right.

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Brushwork
Brushwork
in reply to Yansouneh

There are as many people who do not tolerate Mtx as there are who do.... Usually, it is because it causes - Nausea, Brain Fog, and interferes with Liver Function. You need to try it to find out, and then decide.

I would also go for tablets first anyway, much easier in terms of fitting in with life.

As for the microbiome - do all you can to support it, it will help.

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Yansouneh
Yansouneh
in reply to Brushwork

Thank you.

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Sumdy
Sumdy
in reply to helixhelix

Helix I hope you don't mind me asking, when you say sero positive aggressive RA, are you referring to the large amount of pain and joints involved or the large numbers for RF, CCP and ANA. I know you do a lot of research and are very knowledgeable so respect and take note of your input. 🙂

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Mall
Mall
in reply to Sumdy

This is a diagnosis of a particularly severe and potentially debilitating, life limiting type of RA given by Rheumatologist after thorough assessment including blood tests, Xrays etc. High Rf is generally present but not necessarily immediately in blood tests Any one given this diagnosis needs to follow the advice of their rheumatologist in terms of drug therapy and do all they can to support their bodies in terms of eating healthily, appropriately exercising, not smoking etc.

Modern drug therapies have turned around the outcomes for people with severe forms of RA. They are now able to live and function better without developing severe disabilities and drugs have limited organ damage and folk can now live to a similar age to that of the general population.

Diet alone has not achieved this.

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Sumdy
Sumdy
in reply to Mall

Thank you Mall 🙂

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Hellborg66

I am due to start methotrexate after being on sulfalazine for the last three year's and I asked my rhuemy if I could start on injections because my gut needs a break also the absorption is better and the side effects are less on injections. And he said no problem and agreed there's a better chance of it working with the injectable version. So if you don't ask you don't get.

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Hessie5

Hi Yansouneh - sorry to hear about your diagnosis, this forum is a good place to be.

Many of the answers posted are spot on so I won't send you any lengthy words, only to reiterate do your research.

Also, be mindful the meds are there to prevent joint damage - RA for me enveloped my body so intensely and quickly that whilst I thought diet is going to save me and I felt good, RA acted like a wrecking ball damaging my tendons, within months.

We are all different though I was diagnosed with RA positive, with extreme disease activity. I never smoked drank and ate well prior, so possibly stress or viral, that’s the million-dollar question.

Sounds like you are going to do your best to help yourself, which is a great attitude. But as many have said work with your consultants. I take a good probiotic to help my gut as well as a mass of quality supplements and eat well too.

Wishing you a journey of wellness 😌 Hessie

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Yansouneh
Yansouneh
in reply to Hessie5

Thank you for taking the time to reply. Yes - I now feel like there should be a qualification awarded after studying RA so much! I now brew my own probiotic drink which is a new venture for me - but starting to taste nice!!

I would like to ask - you say you were using diet to help you and you "felt good" but indicate that RA was still doing lots of damage within months. Did you not feel any pain then, when that damage was taking place? I suppose what I'm driving at is, you felt good but was RA working silently in the background?

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Hessie5
Hessie5
in reply to Yansouneh

Hi Yansouneh - no worries here to help.

Just to clarify there were days I felt okay, I could cope, then days where I would feel the tenderness and pain. I went onto steroids Prednisone, that was a game changer, as I felt normal again, but soon as I tapered down it all came back.

So RA was doing untold damage despite feeling ok. My blood markers showed active inflammation. So do speak with your consultant that is key - they monitor.

Take care - Hessie 😌

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AgedCrone

Better is what your rheumatologist decides is best for you.

Have you actually been told you will be given Methotrexate as the first Dmard?

Why not wait & discuss with your doctor which drug is most suitable for you at this point in your treatment.

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Yansouneh
Yansouneh
in reply to AgedCrone

Hello, yes I should have been given 'triple therapy' straight from September, but I had just Hydroxy... because I was still breast feeding. It has taken until now to wean my child. Now they can start me on the other two drugs. They 'attack' the RA with three and then once under control look at reducing carefully what I'm taking.

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paulbasel

Recent research presented at the 2019 American College of Rheumatology/Association of Rheumatology Professionals looked at 371 patients with RA and psoriatic arthritis who were taking methotrexate. There were a number of outcomes from the research. However, the one you are concerned about, i.e., stomach problems, the study reported that 9% of current patients had some form of stomach pain.

My advice is that you start with the tablets and see how you tolerate them. Many people after a period of adjustment to the medication never have any long term problems with the drug.

I would also like to echo some of the other comments about taking vitamins and other supplements. I would not rush out to buy any of these compounds unless you discuss it with your rheumatologist. My personal belief is if you eat a well balanced diet you will receive all the minerals and vitamins that your body needs. The one exception might be Folic acid, a form of vitamin B that is essential for the production of red blood cells. Methotrexate blocks some of the actions of folic acid, which can lead to side effects. Again, I must stress that you have to discuss this with your doctor.

I wish you the best. Most people tolerate methotrexate very well.

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Yansouneh
Yansouneh
in reply to paulbasel

Thank you. Yes, I have been taking advice from a qualified individual as mentioned in reply to another member. My test results have shown I am shockingly in need of the B vitamins, and Folic acid, among other things. I will share these results with the doctor.

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