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Rheumatoid Arthritis

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roopower | 20:35 Thu 24th Aug 2017 | Body & Soul
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My 30 year old son has just been diagnosed with rheumatoid arthritis. At present he is taking steroids plus drugs to counteract possible problems caused by them. If test results are favourable he will be taking methotrexate plus folic acid. We've been given a great deal of information from the hospital about what he won't be able to eat, drink and what medicines he won't be able to take. The possible side effects of the methotrexate are scary but we're keeping positive and there are alternatives if it doesn't suit him. His immune system is going to be compromised so we will have to be careful. There are two things I would like help with, the first is positive experiences of people who have been on these drugs for a while and also if anybody has any tried and tested dietary suggestions. I've had a look on line but I'd like advice from someone who knows.
Thank you

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Hi Roo. Firstly, diseases such as RA and psoriasis occur when the body's own immune system goes into overdrive and starts attacking you, hence the need to be immunosuppressed. Some people manage with strong analgesia if they have mild symptoms but Methotrexate is the first port of call in immunosuppression. If Methotrexate gives partial relief but fails...
08:37 Fri 25th Aug 2017
NoMercy will give you a better answer than me......but until she posts.
It is tough luck to be diagnosed with R.A so early in life but the symptoms and the disease process can be controlled with steroids and methotrexate. Patients have been on this regime for years with no debilitating or life threatening side effects.
As far as diet is concerned there is NO diet that will hold back the waves of RA, although it is suggested that red meat should be avoided and the Mediterranean diet is advantageous.
Life expectancy is reduced with RA despite the appropriate drug therapy.
Question Author
Thank you , Squad. I was hoping you would be about. I didn't realise that life expectancy is reduced, that's also quite frightening.
Well....you need the truth.....there are serious complications of RA and although life expectancy is variable, as is the progress and or deterioration of the disease, one is expecting at least a ten percent reduction in life span.
The side effects of the drugs, in my opinion are not as pronounced as is made out in the journals.
NoMercy is a medical secretary for a rheumatologist and may temper or modify my posts.
I also have RA I have been on methotrexate for 15 years. I have had no side effects in this time. Had an operation on my feet 9 years ago now waiting for a knee replacement. I have never been told about what I can eat. My rheumatologist has never mentioned this.
i have had severe RA since i was 24.
There is not a diet that "helps" the disease, however i always find when i eat healthily i feel better in myself (but i think this would be true if i had ra or not).
I had methotrexate for a year or two but couldn't tolerate it and am now on biologic therapies
I have Rheumatoid Arthritis, I was on Methotrexate for some years. I had no side effects, I am now on leflunomide, my rheumatologist never mentioned diet, all I have been told not to have is grapefruit.
Question Author
Thank you all very much. Seems we're on the start of quite a journey!
Hi Roo.

Firstly, diseases such as RA and psoriasis occur when the body's own immune system goes into overdrive and starts attacking you, hence the need to be immunosuppressed. Some people manage with strong analgesia if they have mild symptoms but Methotrexate is the first port of call in immunosuppression.

If Methotrexate gives partial relief but fails to give complete symptomatic benefit, a second, and in some cases third disease modifying agent can be added to the treatment regime, such as Leflunomide, Sulfasalazine or Hydroxychloroquine (the latter would be my choice as it can confer anti-emetic benefits and nausea is a known side effect of Methotrexate).

If the Methotrexate was completely inefficacious, you would then become eligible for a trial with a biologic agent such as Humira (Adalimumab) 40mg injected subcutaneously once a fortnight. However to be eligible for biologic therapy, a trial with Methotrexate is a pre-requisite.

Folic Acid 5mg is usually taken 3 days subsequent to the Methotrexate but if you are struggling with Methotrexate-related toxicities, Folic Acid can be titrated up to 5mg daily for every day apart from the day you take Methotrexate.

From a dietary point of view, if you are being immunosuppressed it is wise to avoid all unpasturised foods and mould-ripened cheeses and processed foods. Certain foods such as red meat, dairy, eggs and corn are thought to trigger or exacerbate inflammatory diseases and alcohol is a something to be kept to an absolute minimum as Methotrexate can cause nephrotoxicity and hepatotoxicity. People who stick to a plant-based diet usually do better overall.

Your son will need to have regular blood monitoring whilst on treatment.
Further thoughts...

I note your son is 30 - has he started a family yet?

If he and his partner wished to conceive, he would have to stop his Methotrexate for at least 6 months prior to conceiving a child. My ex was on Methotrexate for psoriatic arthritis and he came off it so that he and his new partner could try to conceive. He is now the proud father of a 5-month-old son and he never went back on to his Methotrexate as he said his symptoms were manageable without it.

Going back to diet and lifestyle, has your son any interest in the research behind fasting? Many people who have undertaken intermittent or prolonged water fasting have found that they can completely reverse their inflammatory disease. In fact there is strong evidence now to suggest that a 72-hour water fast can achieve a complete immune system reset. I have done some extensive reading into this fascinating subject and I can recommend reading "Fasting And Eating For Health" by Joel Furhman. Furhman takes the time to explain right down to a cellular level what happens inside the body when it enters a fasting state. Please bear in mind that fasting is not "starving" and indeed the average person has enough stores to fast for 42 days before starvation occurs.

I hope your son begins to feel better soon.

Question Author
Thank you, NoMercy, my son has been given most of that information but it was good to hear it again. At present he is happily single, so fatherhood is some way in the distance, if ever. I've ordered the book to read, son is sceptical to say the least so we'll see. Thanks for your good wishes, at present things aren't too bad, he hasn't got any erosion yet so hopefully it can be kept at bay for a while.
Hi, I have RA, from my mid twenties that things got bad enough to end up being referred and diagnosed, I'm 38 now. I've been on quite a few meds, Sulfasalazine then Hydroxychloroquine, Methotrexate (tablets then injection) then on to the biologics, Tocilizumab, with and without Methotrexate, then Etanercept (Enbrel) which I'm on now. Lots of steroids in the meantime, oral and both general injections and various joint injections too.

Like bednobs, I couldn't tolerate Methotrexate but many do without issue. There are also ways to help with some of the side effects if he gets any. unIt does seem daunting at first, especially having your immune system compromised, but you really do tend to get more relaxed about it once you're on it. There will be regular blood monitoring to pick up any issues early on.

It's good to have a good GP for extra support and quick access if needed, for example, should any infections crop up.

The specialist Rheumatology nurses can be a brilliant help too, some can also do things like give steroid injections, which is great as it reduces the wait to see a doctor.

Have they given him any information about a helpline? My department has a helpline you can ring and leave a message for a Rhumo nurse to get back to you, can take a few working days but it can be really useful. From forums it seems to be fairly common to have this so good to check if there is something similar available if he hasn't been given any info previously.

There is also other support from departments like Occupational Therapy and Physio should it be needed in the future, I've also had help from Podiatry, Orthotics and the Pain Clinic too. So there is help out there going forwards. Good to know even if he doesn't need it.

There are lots of support groups on Facebook for people with RA if he would find any of them helpful at any point. Feeling nervous about going on Mtx is a common question and good to hear from others who have experience of things.

There is also an Expert Patient programme which is worth looking in to for the future. I did a similar one but specific to Fibromyalgia, which was great. Can be difficult with working too though, depending on the hours it runs locally. An example here: http://www.srft.nhs.uk/about-us/depts/renal-services/pts/the-expert-patients-programme/

Diet wise, I've found no diet which helps. I was told at a Rheumatology patient information day (another good thing to check if his department does, it was really informative!) that in their experience no diet helps with RA.
Question Author
Thanks, Eve, I've only just found your comment, it's very helpful. Son has had two doses of methotrexate and so far, so good. He actually works in a hospital so has lots of support from staff now they know what's going on. His boss is being very good and there may be a meeting with occupational health later and his job isn't too taxing on his joints normally. Fortunately, he was diagnosed early so should be on a fairly even keel for a while, at least. He seems to have got used to the idea and is a lot happier. It's good to have comments and advice from people in a similar position. I hope you keep as well as you are able. Thank you.
No worries and thank you. Great he is ok with the Mtx (sorry, too long a word to keep typing haha!). A lot of people take Mtx with no issues. It's a really good drug to be able to tolerate and often used in combination with some of the newer biologic drugs.

A quite common one is feeling a bit off after taking it, a bit like a hangover. I used to take it before a day I wasn't working and just before I went to bed to minimise that. As said above, the folic acid can be upped to every day except Mtx day if needed to help with side effects.

It's great that he has such good support. I've had a lot of help from Occupational Health within work, as well as Occupational Therapy at the hospital.

NRAS and Arthritis Research UK have a lot of good information on their websites and you can order booklets too:

http://www.nras.org.uk/

https://www.arthritisresearchuk.org/

Both have helplines, I've never used them but good to know that they are there.

NRAS have support groups around the country so he could check if there is a local one to him. My local one is a bit far away, especially as I don't drive, and the meetings are always when I'm working, which is a shame, else I would go and check it out. They seem to have a lot of speakers in to give talks from the information I've seen.

http://www.nras.org.uk/groups
Question Author
Thanks, again Eve. Hope all goes well for you.

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