New to RA

[Iryna72]

Hi, I'm absolutely new to this RA , it all started with swollen DIp joint in my finger, a few weeks later spread to a few more DIP joints on my other hand, orthopedic I went to see , sad it looks like RA, I took a test and Rheumatoid Factor came positive, I have An appointment with rheumatologist on October 13 but I'm absolutely paranoid to be on any RA meds do to all side effects, I heard some people was able to put their RA into remission just by changing their diet, well I'm alrdy down to 98 pounds trying to eat healthy, lots of veggies but no changes, I'm so lost, just want to hear ur opinions, thanks a lot

[sylvi]

Not everyone suffers side effects darling,i take sulpha and mtx and i don't have any side effects,so give them a go and see how you feel darling,but be prepared for the time it takes for the drugs to start working though.xxxx

[Ellieellie]

It's frightening when first diagnosed. You will just have to see what works for you. Walking is the best exercise or swimming. Avoid any kind of impact exercise. You will have good and bad days. Make the most of the good. I only am aware of one person who has gone into remission I hope you are that lucky..

It does take a while to get your head round it and accept it. I have cried many tears over this but you put one food in front of the other and get on if with the best way you can.

This site gives good support when you want to vent your frustration or ask questions. We all understand. The worst comment I get is that.., well you look alright... It makes me feel like shouting at them sometimes.

Hope you work your way through this but remember you are not alone x

[helixhelix]

It's always a good idea to eat healthily, and it can help some people. But do be careful not to lose too much weight. If you are more than 5ft then 98 pounds is close to being underweight which is not a good idea as your body needs the strength to fight this disease.

Personally the possible effects of the disease are much, much more frightening than the drugs. It's not just the obvious pain and damaged joints but the invisible damage it can do to your heart & lungs.

I take three of the main drugs, including methotrexate, and have no significant side effects and am in remission most of the time now.

One approach is to work on your diet alongside the drugs. Then, once you have got the disease under control you can slowly try to wean off the drugs. Talk to your rheumatologist when you meet him or her, and ask about your fears.

[Em13]

Hi Iryna

You may not be able to gain remission from diet alone, but I am convinced that what we eat can have a big effect on inflammation levels, pain etc. (Stress can also affect these things.)

I'm new to this too, and totally freaked out by the drugs, but I do take two DMARDS (hydroxy and sulfasalazine) because I'm too scared not to. Could you look into LDN (low dose naltrexone)? That might help.

M

[AllyWelshDragon]

Hi Iryna

I felt like you do at the start too. I was diagnosed 5 years ago and was in denial for a long time. I didn't want methotrexate as a first med so I started on Salazopyrin and was on that until last year when I had several flares. My rheumatologist told me that I risked disease progression unless I added another med in and recommended Methotrexate again.

I bit the bullet and started on it and, touch wood, been fine on it for ten weeks now and am seeing the good effects of it. In the meantime I lost two stone, healthily, on slimming world, and brought my cholesterol down three points as well! I still go to the gym, work full time and have a busy family life. I might not be this good if I hadn't taken my doctor's advice. So please do think carefully and listen to yours, they are the experts after all.

Good luck!

Ally

[smithfield]

Hi Iryna, Sorry you are here but welcome to this site, it is so helpful for sharing concerns and equally the positive bits, and yes we do have positive days.

I agree with Helixhelix, the side affects of the drugs can be easier to live with than an RA flare. I am on the biologic Cimzia, hydrocholoquine and a low dosage of prednisolone. I do have a couple of iffy days after injecting, but quite honestly it is worth it to be relatively pain free, to have regained my mobility and independence. I try to do a holistic approach with drugs and a healthy diet with some exercise. I have rediscovered the pleasures of walking since starting on Cimzia. So drugs are not all doom and glum.

I wish you well, let us know how it goes it is scary at the beginning but you should be referred to supportive rheumy team and as I said earlier this site gives real support from people having similar experiences.

[stbernhard]

Hi Iryna, welcome to this site. I remember when I was diagnosed in 2009. It's not a good feeling. I have been in remission for over two years now and that is a very good feeling. The way I got to remission was by taking all drugs regularly after discussing the reason for taking them in detail with the excellent care professionals who help me to look after myself. Regular exercise, a reasonable diet and a lot of positive attitude will help as much as the drugs. I'm 67 now and won three medals in our bowls club championships this year after thinking, back in 2009-10, I'll never be able to play again.

You may get frightened by stories about side effects, but please don't let them put you off. Everybody reacts in a different way and you'll have to find the drugs which will help you with the least possible side effects together with your care team.

I think that's enough preaching for one day, but seriously; Be positive and talk to your care team about every detail that worries you. It doesn't matter if you think it's minor. If it's of concern to you, they will understand and help. That is their job and they want to help.

I wish you all the very best on your journey and please keep us up to date.

[npkb]

Hi Iryna

It is the most terrifying time and we've all been there. I, for one, tried all sorts of diet "advice" - none of which worked for me - and I avoided treatment for as long as possible (though back in 1976 there wasn't much to choose from! ) - as it's all so scary.

I am now, 40 years on, pretty much a wreck, as virtually every joint in my body is knackered.

If I had my time again I would get straight on the meds - yes, there are always side effects, but the modern treatments are so much better than they used to be - many on this site will tell you just how good.

We do not choose to have RA. Nothing about it is good, but once you have it the only way is to take a deep breath and face it head on. Eat well, don't smoke, exercise regularly and gently, try to stay positive. . . . And use the wonderful people on this site to help through the down days!

Lots of love, and I do so hope everything goes as well as possible for you.

[Bookworm55]

I do understand being apprehensive about taking drugs for RA but I was convinced by reading about the disability caused in the past when such drugs were not available. Both my friend's daughter and my cousin have RA too and mtx didn't suit my cousin at all so was taken off it and is still struggling to find a drug to suit her. Despite her experience I gave it a go and so glad I did. It's early days for me too - diagnosed in Feb this year after severe onset of joint pain in Dec- but the mtx and hydrochloro. plus reducing dose of steroids have dampened everything down so that at my last app there was no inflammation at all. I am RA factor and CCP positive. On 17.5 mg mtx as I am now - no side effects at all. My friend's daughter was on mtx for 8 years very successfully and only came off it to have a baby. Unfortunately after the birth she has had a return of her RA symptoms and had to go back on the meds big time. Three years on she is still struggling with hand and knee problems.

Of course only you can know what feels right for you - and I also know someone who avoided drugs and just drinks cider vinegar and honey when her joints feel stiff! I think she's quite brave.

You will be monitored with blood tests etc while on mtx so problems can be picked up quickly. I wish you all the best.

[AgedCrone]

Hi, Iryna I don't think diet ever puts RA into remission! If it did this site could close down! We'd all be lining up for the diet sheet!

Just eat healthily & enjoy your food...I'm 1.65m tall & weight 55kg (121lbs) after taking Leflunomide & I think I need to put on weight....some drugs do depress your appetite.

My Rheumy reckons maybe once in a blue moon someone will go into remission.....but he (age 50ish) has never seen a case! Maybe if someone had an unhealthy diet to begin with, changing to a better one would help ...but most people these days eat pretty sensibly.

It's a shock to find you have RD & if you then read the horror stories of some drug side effects it's down right scary!

But the only thing to do is soldier on & find what suits you & get on with life........it's not easy sometimes, but there is usually a light at the end of the tunnel & most people on this site seem to enjoy life, albeit with some restrictions.

So eat up & enjoy......I hope if you do need to take some meds you have a good experience.

AC.

[Hidden]

Hi Iryna72 , have you looked at our NRAS website we have information on medications and lifestyle changes . I have added a link to an article on our website that you may find helpful at this time: nras.org.uk/what-is-ra-article .

If you would like to talk through your concerns our helpline is open monday to friday 9.30 to 4.30. take care Ali.

[Amy_Lee]

Dear Iryna72,

I was scared to dead when I was diagnosed of RA in Jun 2014. However, I would not want to risk my body by going for just diets remedy alone. Like many others said here, I do not believe diets can help to suppress our immune system and control the disease. However, I do believe it will help to maintain our remission when the disease is under control by the drugs. I am in remission now and I was very much back to normal after about 1 1/2 years of treatment. The golden period for treatment to be effective is within the first 6 months. Therefore do proceed for your treatment immediately if you can.

I did have some slight side effects but not bad as compare to the suffering I had before the medication kicked in. The little side effects mostly subside after sometimes to me. I hope it works the same way for you.

Here is the link of my recovery process for your reference and I hope it can inspire you to move on positively.

healthunlocked.com/ra-warri....

Below is the link of what kind of exercise that I did during my recovery process. Being a RA patient, we need a lot of exercise to keep our joint mobile, just make use of anything around you to exercise your joints.

healthunlocked.com/ra-warri...

Below are 2 very informative and well organized videos for new RA patients. I had got most of my answers from these 2 videos.

healthunlocked.com/ra-warri...

[mickeysmom34472]

Hi Iryna, I have had RA for 4 months now and I love this forum. I kept calling out of work because every day I would wake up with pain in my arms, or in my hands and fingers, it traveled. I went to orthopedic thinking I had carpal tunnel and he said I had no arthritis in my hands and recommended rheumatologist. I too was afraid of taking the methetrexate because of the side effects people were having but I knew it wasn't going to go away on it's own so I said a little prayer and popped those babies in my mouth. Well, no side effects and now I am almost pain free and I am able to work more hours. You will find yourself constantly explaining that this is really not arthritis but an autoimmune disease that attacks your joints and organs. I thought that I wanted a designer drug when I first got diagnosed because methetrexate has been around a long time so I thought newer would be better. Well I am happy to stay on this as long as it is working for me and it is cheaper than the biologics. Good luck, join this forum and check in frequently as you can learn a lot from other people's experiences. God bless.

[rawillbebeaten]

Hi Iryna,

I agree with all the replies, with severe symptoms drugs are the best and only way forward. Some will suit you and others won't. After about 14 years where the drugs, after trial and error and getting onto Enbrel, pretty much worked I had to change treatment. The blood tests you have regularly do show up even small changes and the Rheumatology team get on the case straight away. I've had a very unsettled 2 years but hopefully things are back on track now with a new biological, Rituximab. I do 100% trust my consultant. I've still been at work, it was a struggle at times but I've got a very supportive Boss and colleagues.

I've also recently started to have Reflexology and Acupuncture to try to help some nerve problems in my feet caused by the RA during this unsettled period. I think that is helping, but I won't stop the drugs unless the Rheumatology team advise me to.

Thinking of you, take it day by day. If you can take someone with you to the appointment and write down any questions you have so you don't forget.

Wishing you all the very best and that the first drug you get works for you

Michele

[Simba1992]

Eating a healthy diet is always good but if you want to try to get your inflammation down you need to be on a anti- inflammatory diet like AIP. This diet tries to eliminate allergens in your diet that has shown to cause both a leaky gut that increases inflammation. The main culprits are gluten ( all bread), dairy products and sugar. The diet is not easy but it has helped me control my RA. The good thing with the diet is that you do not need to go hungry😊 You could start by trying to leave out gluten, dairy and sugar for three weeks and see if there is any change. Does'nt work for everyone but still for a great number.

[Iryna72 in reply to Simba1992]

So were u able to get ur inflammation down just with this diet? I'm 5"4 and 98 pounds and I don't know anymore with all this diets without the right guidance or I will loose myself completely. I haven't had sugar, salt, milk and lots of other things for over a month now. Mainly it's oatmeal, quinoa, salads, olive oil for dressing, legumes, yogurt and kefir, some almonds.I just feel that I'm not doing something right, I'm so excosted . Thought I would be able to get it under control without the meds

[Simba1992 in reply to Iryna72]

Yes I got my inflammation down with AIP diet, LDN and supplements. I still need pain meds occasionally so I am not in full remission even though my inflammation markers are normal, no swelling in joints still stiffness in knees and hands in the morning. I would say Im 80% better. I am happy that the only toxic meds I have needed is naproxen and ibuprofen. I hope my treatment protocol will eventually take care of the remaining 20%. Yes you really do need help of a doctor who understans diets. In UK there are some clinics with this expertese and in the US there are several. You should google paleomom. Saraha Ballyntine, a medical doctor and a doctor in biochemistry who hasdeveloped the AIP diet and put her own AI diseases in remission. Good luck😊

[IzzyLane]

By all means diet may have an impact and some foods may be better than others. But at this time, I don't think you can put yourself in remission on diet alone.

Don't be scared of the side effects...I get side effects from most drugs, and I tend to get the uncommon ones but I still take them and find a way to manage. For example, I take methotrexate at night before I go to sleep and that way I eliminate most of the problems.

Equally if a drug doesn't suit you, your consultant won't make you persevere. There are so many drugs out there, try to be open minded.

The last thing you need is to worry and get stressed because I promise you that will make you feel so much worse. Try and be positive, have faith, things will get better for you, in whatever treatment you find works.

[Iryna72 in reply to IzzyLane]

Thank you all for your replies, one more question I have, how come I hear that even taking the drugs people still need joint replacements, aren't those drugs suppose to stop joint damage?

[helixhelix in reply to Iryna72]

RA is very variable, so everybody has slightly different experience. At one end there are people with a non-aggressive type of disease that may hurt, but doesn't cause much damage or only very, very slowly. It may well be that these people are the ones who have most success with lifestyle changes - but that's just a guess.

In the middle there are the majority of people who have an active disease that responds very well to drugs, and where you can stay in remission with drugs and have few problems and live a normal life. Without the drugs you have problems quite quickly. And that's my experience.

And then at the other end are the people who have the most horrible and agressive disease that doesn't respond well to anything - diet or drugs. And it's these people who sadly have the most problems and need surgery. But this is only 5-10% of people with RA I think.

[Hopeful1 in reply to Iryna72]

One thing is how early on you are diagnosed. These days it is recommended to start treatment as soon as possible as treatment from the early stages in most cases prevents avoidable damage - and the new generations of drugs available give more scope for finding the one(s) that work for you. Don't forget that most regulars who use this site are either those at the most difficult end of the spectrum and some who could not get (or would not take?) the treatment they needed till the damage was done - . Don't forget the many who are successfully treated and get on with life with no need of the wonderful resources here.

I was diagnosed and treated very early on about 3 years ago and after the first few months of drugs (with no bad side effects and close monitoring) have virtually been in remission. There is light at the end of the tunnel