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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

To consider trying to find an alternative to medication for rheumatoid arthritis?

32 replies

dottytablecloth · 08/02/2015 19:32

As I'm shit scared of the side effects? Sad

I haven't been 100% confirmed with the diagnosis but it's looking v likely.

I'm reading all I can on the internet about this illness and how it's treated and I'm so terrified of the drugs for life I'll have to go on for life.

I've read about people (and doctors) who claim it can be cured through a particular diet but then other sources say it's incurable.

I try to be positive and think it could be worse but I'm feeling v v down that at a time in my life when I should be fit and healthy I've possibly got this disease.

Has anyone been successful in curing ra with their diet?

OP posts:
MrsTawdry · 08/02/2015 19:46

Is it the Paleo diet OP? YANBU to give it a go for sure...and certainly a diet completely free from processed foods is always going to be beneficial but don't be too dissapointed if it doesn't work....my partner swears by the power of food and he's not thick...and he's very healthy....I'm skeptical of "cure" but you could see an improvement.

PintofCiderPlease · 08/02/2015 19:48

I'm sorry op, but please take the medication.

This is a progressive disease. If you don't fight it now, it will get worse that much faster. If you fight it, you can go into remission. My mother is crippled with rheumatoid arthritis. I could describe her symptoms if you want, but I don't want to scare the crap out of you.

kormachameleon · 08/02/2015 19:51

This reply has been deleted

Message withdrawn at poster's request.

scousadelic · 08/02/2015 19:55

I would always say things like diet and complementary medicines should be as well as medication, not instead of it. If there was an alternative that was particularly effective, it would be properly tested and recommended by your doctors.

I have known people improve their condition, sometimes significantly, through lifestyle changes but they are no substitute for proper evidence-based treatments

MrsTawdry · 08/02/2015 19:56

Speak to your Doctor OP...tell him or her about your fears. Can you find a good forum for talking about it all with others?

MrsTawdry · 08/02/2015 19:57

here is a Facebook page and support group....

dottytablecloth · 08/02/2015 19:57

cider does your mother take medication? I'm very sorry she is so bad.

korma which meds do you take? Again I'm sorry to hear you have a similar disease.

I'm so fed up with this pain. I have an 8 week old dd and it breaks my heart that there are days when I can't lift her Sad

OP posts:
7to25 · 08/02/2015 20:05

I can only second what a previous poster said. Please take any medication offered and work with your medical team to find the best combination of drugs for you.
My own mother refused to do this because of "side effects" and I know of every diet/ cider vinegar/ green lipped mussel cure going. None of them worked and she became more and more immobile and debilitated. Her quality of life at the end was nil. I begged her to try medication but she refused anything more than paracetamol and never got into even a good pain relief regime. You have a young child and would benefit hugely from advances that have been made in treatment.

Mistlewoeandwhine · 08/02/2015 20:05

I have v mild rheumatoid arthritis (I've had it for 9 yrs) and I have controlled it via diet and supplements. I used this book:
www.amazon.co.uk/Diet-Arthritis-comprehensive-controlling-arthritis/dp/0091816599/ref=sr_1_1?s=books&ie=UTF8&qid=1423425715&sr=1-1&keywords=diet+and+arthritis+by+gail+darlington

It hasn't got any worse but maybe it would have been like that anyway. I gave up eggs and dairy (I did a blood test for food allergies). I take ten one a day fish oils, 3 one a day star flower oils, two rosehip supplements and full vitamin and mineral supplements. I only feel it when I have got a cold or something coming on (and my immune system flares up) or if I eat dairy or eggs. In fact, I feel better now than I did 9 yrs ago when my GP wanted to put me on daily ibuprofen. Hope this helps xx

Mistlewoeandwhine · 08/02/2015 20:07

Oh and I take cider vinegar too. Btw, I am not 'woo' at all - Like I said, mine might just be mild anyway but I wanted to try my methods before going on the scary drugs and it worked for me. I totally agree with others that it may be that you need to go on the medication. Anyway, it is a common condition so good luck xx

Mistlewoeandwhine · 08/02/2015 20:09

It also says in the book that being overweight and eating badly can make it worse (I am still v fat) so you might want to lose any excess weight.

simontowers2 · 08/02/2015 20:11

I too have psoratic arthritis. Six yrs diagnosed. Exercise - swimming particularly - helps massively, i really cannot recommend it enough. I take sulfasazine. I did my own research and found it was the drug with the best profile in terms of long term side affects. it works for me but i understand it doesnt work for everyone. Cerainly worth a try. What i would say is do your own research when it comes to meds. That's what i did, and the doc was happy to give it a try (despite recommendaing methotraxate which i didnt fancy). Best of luck - this is an illness which does get easier after the initial flare, and often lays dorment for months, even years on end.

bbrisotto · 08/02/2015 20:12

Hi, I have had rheumatoid arthritis for about 8 years since I was 26. When it started I couldn't move in the mornings I was like a statue until I got going. I was given steroids and luckily very quickly diagnosed and then started to take Sulphasalazine with Diclofenac and painkillers when necessary. After the treatment kicked in I was back to normal (ish) I just had to be careful to pace myself as the fatigue is terrible.

I know I am lucky but I have had to accept that having RA is just part of my life now, I am in what they call medical remission and was fortunate that I had no long term joint damage. I have had it go away through my previous and this pregnancy, and had my hopes pinned on it not coming back only to come crashing down again when my daughter was 6 months. I was straight back on the meds despite breastfeeding as the thought of not being able to lift my baby out of her cot was horrible.

I think that if you leave it untreated medically you run the risk of having long term damage to your joints or the more severe internal complications. I have always been scared of Methotrexate and chosen to take Sulphasalazine instead as you can take in pregnancy if necessary.

Sorry to waffle on, but the thought of going unmediated for me personally is more frightening then the medication itself.

rinabean · 08/02/2015 20:14

You can't. Mine is very mild, so mild it's just been 'suspected' for years now, I might have some other inflammation thing instead tbh. So I try to keep my inflammation down (as anyone would benefit from ofc) and that keeps me mostly well. Your doctor would not be recommending those drugs if you didn't need them I'm afraid. The real horror story is how you might end up without them, I'm sure you know that but you need to keep that in mind when you're scared of the medicine. That's what I do with my anxiety medicine and it helps me to get through the fear and take it. The lower your inflammation, no matter how you do it, the better, and one of the ways you need to do it is through the medicine. I'm sorry you're scared, it is scary but you're not alone. Maybe find other RA sufferers on the same drugs, sometimes that can help, talk about what it's like, find ways to cope with side effects, find out what's normal and what you can demand further help with :)

Hissy · 08/02/2015 20:16

I was talking to a friend who has a bit of arthritis and takes Green Lipped Muscle extract, have a look for info, it seems it might help.

PintofCiderPlease · 08/02/2015 20:24

My mother takes the medication offered. Yes, the side effects can be vicious when you're at the higher dosages, but that's usually with more severe rheumatoid arthritis.

My mother is crippled, as I said, all her joints are swollen, her toes and fingers have been pulled to the side, and she has a claw like hold. She shuffles, rather than walks. She has special shoes made, which she loathes as they look hideous. She is in constant pain, when it gets too much she takes the maximum pain relief going. She hunches, she has assistance to shower, she has a walking stick with 3 legs, should use a wheel chair for trips but insists on the wheeled walker (zimmerframe type thing, with a seat which you can sit to rest on) and trips out are rare and take all morning to prepare for, someone does her shopping once a week, prepared food is delivered. Her house has had rails installed in the shower, doorways, next to the bed, etc, a higher chair at the dining room table with arm rests so that she can actually get out of it, her bed is raised so that she can get off it, door has a magnet to hold it open so she can get out without it slamming on her, steps have been modified with gradual ramps, etc.

They often put her on experimental medication, because the standard stuff isn't effective anymore. The side effects of the medications are vicious, because she is in such mega huge types, and high doses of them. Some of the ones she has been on are ones for cancer, but taken in different ways and doses.

She turned down an operation to fix some of the joint damage many years ago, because she feared my father wouldn't give her enough assistance when she was in recovery and she couldn't trust him to look after us - I think she was a daft fool and should have let the house become a pigsty for the duration, because there is no way they will ever operate on her now, if she goes into remission phases they are too terrified an operation will bring it back with a vengeance. Pride got in the way of a treatment and that horrifies me. (None of us children knew about this at the time.)

You need to STOP it getting to this point. You need to DELAY its onset. Today's medication is vastly better than what she was offered 40 years ago - yes, 40 years of pain. You need to stay mobile in order to keep it at bay. You huddle up in pain and the disease will progress more. You need pain relief. Stop being a martyr with the pain.

Your body is attacking itself, it's an auto immune disease. A lot of money has gone into researching it, the medicines are improving all the time. Please take them.

But do improve your diet, it will help you stay healthy and minimise the side effects. Do investigate natural pain relief, it will all help. Tens machine (works for all pain, not just labour!) herbal creams, etc. Be aware that arthritis and rheumatoid arthritis are totally different diseases. Don't get confused with treatment recommendations.

Justinefrischmann · 08/02/2015 20:29

Hi OP. I've had RA for most of my life. Got it when I was a kid. Take the meds - seriously, they have to publish ALL the possible side effects but you won't get all of them, and most probably won't even get one or two. If you do, tell your Dr, and they'll move you to something else. I didn't get on with methotrexate so switched to sulfasalazine and have no issues with it. I went a long time with no medication and it's caused irreversible damage to my body.

Dustypeas · 08/02/2015 20:37

Hi
My husband was diagnosed with RA 5 years ago. He was given methotrexate which he took for several years. In order to lose some weight we both tried the 5:2 diet and he noticed his RA really improved on fasting days and then improved generally. He then monitored the effect diff foods had on his body. He found that coffee and dairy and alchohol really affected his RA so stopped consuming these. He's now been drug free for about 6 months and is doing well - little or no pain. Hope that helps

EdSheeran · 08/02/2015 20:39

Firstly, calm down and breathe. You say you don't have a confirmed diagnosis, have you seen a rheumatologist? As I said on your other thread, there is no evidence that a diet makes any difference. By all means, do it alongside treatment but as an alternative? You'd be very silly.

Also, please be careful of what you are reading and researching. The biological drugs (which you may not ever even need anyway) say they may increase the risk of skin cancer which is a far more treatable cancer than lymphoma which is what people with uncontrolled RA are at risk of. So, you really need to be seen in a specialist clinic and receive the education. You are scaring yourself silly reading up about things that may not even apply to you.

dottytablecloth · 08/02/2015 20:41

pint thanks for sharing your mother's story- I'm so sorry for her. It sounds awful.

I try to be positive about the ra drugs but sometimes google gets me down.

I'll be taking hydroxycholoroquine.

OP posts:
DragonMamma · 08/02/2015 20:48

I'm sorry to hear you have RA, I don't suffer with it but I've heard great things about Cimzia for people who do suffer, I believe it's fairly new though?

PintofCiderPlease · 08/02/2015 20:48

Just remember that not ALL people will suffer those side effects. Say there are 2 medicines, and 10% of those that take them will have side effects, it won't necessarily be the SAME 10% of people. So while 1 might cause side effects, another one might not. Develop a good relationship with your GP/rheumatologist. Sure, google, but be sensible with how much attention you pay to what you find.

Good luck, you've caught it early, and if you're willing to take medication to treat it, you are quite likely going to have it under control relatively quickly.

dottytablecloth · 08/02/2015 20:50

ed I know I am panicking. I really can't help it! I'm trying to be calm but the thought of what I may have is really scaring me. I know I'm reading far too much on the internet but I really can't stop myself.

I've been to see a consultant rheumatologist; he arranged for a one off steroid injection which I had on Monday. It hasn't worked and I'm still getting pain in my hands and shoulders and hips. It concerns me that the ra must be really bad when a steroid injection isn't really helping. I've read about people saying these injections are like miracles but it isn't for me.

OP posts:
TheGirlFromIpanema · 08/02/2015 20:54

I'm currently on a triple therapy treatment of methotrexate, sulfasalazine & now hydroxychloraquine.

Of the 3 I developed the least side effects on first use with the hydroxychloraquine. Actually, i really don't think I've had any side effects from it at all and had it added to the other two in early December as an alternative to injectable biolgicals (not for me the self injecting )

I've had quite severe RA for just over five years now, diagnosed at 35.

My one piece of advice would be to ignore any thoughts of finding an alternative to the meds.

Diet & exercise can play a part. But they won't slow down or stop the onset of joint damage. Whatever anyone says.

TheGirlFromIpanema · 08/02/2015 20:57

Also - ask for more steroids if it hasn't worked. In the short term it will help, but you need enough Smile

Rheumys are usually good at helping you with pain management and will understand! I think they give the cortisone in low amounts so that it can be topped up if necessary.

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