Recently diagnosed with RA at 25!

melissaH93

Hello

My name is Melissa and I have suffered the last 9months of a constant “flair up”. This started with a swelling of my index finger. I have several swellings and pain that is indescribable to anyone that does not have this illness.

Everything I read, people experiencing this appear to be either struggling or quickly detoriating. I am still trialing different medications and need advise on what people do or have done to help them through this stage as I’m constantly being lied to about the time and expected recovery and when this isn’t the case I become more deflated.

I am a nurse and this appears to be making the situation worse as I get the impression they want me to act as a nurse. I am a patient

Thank you
Melissa

[Deleted User]

Hello Melissa
welcome to the forums. Sorry to hear you are feeling deflated with it all. This is perfectly understandable considering what you have been through. The stage of getting the right drug combination can take time. Sadly the drugs do not tend to work quickly and usualy people are asked to try them for at least 12 weeks before they can see results. Sadly this does mean we can be trying different drugs for months before we get the right combination and that can be very disheartening indeed. What drugs are you on presently?
I would suggest you have a good read on our section about rheumatoid arthritis here https://www.versusarthritis.org/about-arthritis/conditions/rheumatoid-arthritis/ and arm yourself with as much information as possible so you can go to your next appointment with lost of questions. Also in the mean time keep as well as possible by managing your arthritis as best you can https://www.versusarthritis.org/about-arthritis/managing-symptoms/
I am sure our member will be able to give you lots of information about their experience.
Keep in touch and let us know how you get on, we are here to support you every step of the way
Best Wishes
Sharon

stickywicket

Hi Melissa and welcome from me too. I think Sharon has said all the important stuff. It takes time to find the DMARD(S) which are right for each individual and each drug or drugs can take up to three months to work. Some of us are on two or three.

I began with RA in my fingers when I was 15. There were no modern DMARDS around back then (1961) so it was aspirin followed by NSAIDS and the odd burst of steroids. The fatigue alone knocked me out let alone the pain.

Of course you are a patient. As a nurse I suppose you will be used to seeing people arrive poorly then gradually get better and go hóme. It's not quite so simple for us. The drugs make a big improvement in how we feel and slow down the course of the disease though.

What we all have to learn is patience and, believe me, that doesn't come easily to someone like me. I bet this whole horrible experience will make you a better nurse, though. Remember, what doesn't kill you makes you stronger.

melissaH93

Thanks guys

I have tried methotrexate, sulfasalazine and steroid infections. I am currently injecting weekly Etanercept but I was told I’d feel a euphoria feelings after a few days, and no relief after three weeks.

Does anyone do exercise and does this help?

Thanks for the links I’ve overloaded myself with information over the last 6 months I feel like a rheumatoid arthritis nurse now 😰

Melissa

stickywicket

I've never had etanercept but, if you enter it in the Versus Arthritis search engine, older threads mentioning it will come up.

I guess we all react differently to meds. No one-size-fits-all. I think 3 weeks is a bit early though. Aren't we usually told 3 months?

I couldn't manage without my exercises but they must be gentle, range of movement ones when flaring not the more demanding strengthening ones.

Hey, why not go for it? Rheumatology nurses are great!

dreamdaisy

I remember when I began my third and final anti-TNF medication my consultant telling me I would be able to ditch the crutches and stop the pain relief. I am sure she didn't mean to lie but she did: luckily by then my expectations of the meds were so low I was not surprised, let down or disappointed as everything continued to get worse and I acquired more walking aids and OA. I now stand out at rheumatology as being one of the few lurching in and out of their appointment - everyone else strolls about with ease. When I joined rheumatology those who stood out were those with the massive joint deformities but they are no longer there, the progress in the last twenty years in kind-of-treating auto-immune arthritis is quite something.

I was born with eczema and went on to develop asthma aged seven, both signs of a faulty immune system and at the time the creams and inhalers were yet to be invented. The psoriatic arthritis which began when I was 37 was therefore no great surprise but what came as a shock was the fact that none of the meds were designed to cure because there was not a cure on offer. The meds are designed to control disease activity so reducing the risk of developing joint damage. I was used to the idea of the asthma being controlled rather than cured but was blissfully unaware that the same could apply to a disease.


I began the meds with far too little, far too late so they have never reduced pain and now with the OA pain is a way of life. I'm used to it and it doesn't really bother me that much, it is what it is. Arthritis has no respect for age, people associate it with the elderly and of course there are only two kinds, OA and RA. :roll: The youngest I have come across on here with a diagnosis of JIA was 18 months old and his mum was injecting him with methotrexate. That alone should make one rethink arthritis. There are around three hundred or so auto-immune inflammatory conditions and OA, another cause for a rethink.

Rheumatology is an interesting hospital department in that it never discharges its patients, GPs are now better informed about it and people are being diagnosed quicker. The personal result of of all that progress is that I have not seen my consultant for over two years. I do my bloods, my meth and humira are delivered and I inject, and so it will be until the end of my days. With any amount of luck I might see my consultant before then! DD

40withKneePain

Hi Melissa

Really sorry to hear about your flare ups and the pain you have been in.

I was 27 when I was diagnosed of RA. I couldn't believe it. I didn't understand why I had this and what I did to desrve it. Obvs no one deserves it. I was advised to see a Rheumatologist straight away as they are the specialists when it comes to flare ups.

I remember her words clearly "don't think about having a family, you will suffer from this all your life" - I was devastated. Not only as I was 9 months away from my wedding but also having children was something my partner and I had always planned for. The nest few weeks were really hard. I couldn't digest this, I was crying all the time.

Now...what I did in the few months was like anybody else:

- Spoke to a number of rheumatologists - I didn't believe I had the disease ( I still don't, and its been 13 years)
- started on a number of drugs. As I was with a new rheumatologist as the first one I saw was so awful, he recommended I saty away from meth as it would impact my family planning ( so so nice) he was a man. (made a difference)
- I was having side effects with the drugs, so we kept trialling. One join was worse then the others, my knee. I took steroids injections in that knee, and I saw a difference. x-rays, ink tests you name it, I was like a zombie trying to find answers..the drugs were helping BUT I was looking and feeling very ill. I started losing my hair, skin was dry, mouth constantly dry..you name it.

For 2 months this continued..until I was recommended to go and see a Yoga guru (not a lot of people believe in this and nor did I but wait to see what I discovered)
- he advised I had to leave work. My body was telling me something had to give, due to my illness and not being able to work, I was on sick for 7 months. My work required me to travel weekly and work 60+ hours sometimes
- he advised I give up on eating all meat and alcohol. With the pain I was in, alcohol was ok, but meat I thought? I love eating it. But for the benefit of my health I did
- he taught me specific exercises for my joints. Breathing and stretching - I had to carry this out every morning and evening on a empty stomach of 3 hours. The morning ones had to be done after a shower (to relax all muscles)-
- he asked me to stay on my meds and have me some herbal meds too to start taking which I did.
- he asked me to clear my mind of any tensions and stress. Seems this had a lot to do with the pain I was going through. in the same year of being diagonsed, My dad had suffered brain damage and my engagement had broken off for 6 months. I was under a lot of stress which I didn't realise.

With the support of my mum who looked after me for 7 months by feeding me, allowing me to rest and ensuring she was there if I needed anything, I saw improvements in my flares. Pain from my joints started to disappear, I started feeling better, more energy, waking up less sore...After 2 months I gave up my meds from the rheumatologist and continues with the above. I started losing weight, and my joints were getting better and better. I still needed the steroids in my knee however as that was my most painful joint (sometimes looking back I think it was related to a fall I had) By 7 months, I was all clear of drugs and pain free - It was a MIRACLE!!

I got married and within 3 months fell pregnant with my first son...during this time my RA was in remission.

3 years after I fell pregnant again and the RA returned like a vengeance. It was pay back time. By this time I had started eating meats and drinking again, and had stopped my yoga for nearly 3 years, which I now regret as my knee has got so bad, I am looking at a knee replacement. I am told that if I didn't have so many steroid injections in that knee, maybe it wouldn't have been so bad. At that time, I had bills to pay and money was the priority. I am living in hope, I have started all the routines again and am hoping to make it through.

My advice to you would be:
- Have hope that this will get better
- Look at your diet - are you really looking after yourself, seek advise from a dietician. i know these things cost money but this is your health - you are nothing without it. I am awaiting my results from stool tests. I was becoming allergic to a lot of foods and started having hayfever...I didn't understand why. They say I have a leaky gut. With all the steroids I have been on, my tummy lining may have got effected.
- Seek a class which teaches yoga or Pilates. As the RA kicks in, your muscles and tendons will tighten too, making the joints even more stiff. Do some meditation - It really helps clear your mind
- Sleep and rest well after your exercises, your body will need to recover
- Seek a well known Rheumatologist and ask them to carry out all tests you think you may need- I have worked with a number of them. Talk to them about all your concerns, even see other patients to see how you relate.
- give your body time to heal - your body is he most powerful tool which cannot be explained. It is telling you something is wrong
- move away from negativity and clear your heart - we may not think this is important but to be able to forgive others and forgive ourselves plays a very important role in the way we feel and how our body reacts to the way we feel.

I have just started a new biologic treatment for my knee, I am hoping this works in combination of all the extra stuff I am doing. I will be evaluating the outcome in the next 5 weeks. If the knee doesnt get any better as it is severly damaged in all 4 compartments, i will be looking at a knee replacement. At 40 this is not ideal, however I want to enjoy this time with my children. What happens in the next 15 - 20 years I will leave until then.

Again, living in hope. Remember your body is your temple. if you respect it, it will look after you.

Best of luck

melissaH93

Jesus, I didn’t expect this many comments. I appreciate all your comments and advise, some honestly scare me half to death, but I’m fed up of being lied to about my medication and the length it takes. I just need to truth and maybe I can then accept it.

I am starting the gym for yoga and water aerobics but I do not anytime soon want to quit work I love it! 🤦🏻‍♀️

I’ve recently had two steroid injections directly into my joints and they have worked 10x better than in my gluteus maximus, but I don’t want to overload on them.

I have been married a year now, and want to start children this is a very sore subject with the consultants but seem to be more advanced in medication that before and are looking at alternatives.

Do you have any advise for dieticians/programmes for diet as I must admit mine is shocking!


Thanks
Melissa

[Deleted User]

Good morning Melissa,

You asked for information about diet. As you can probably imagine there are is sorts of differing advice around the subject.

This might help you:

https://www.versusarthritis.org/about-arthritis/managing-symptoms/diet/

I very much hope you find the yoga helpful.

Best of luck

Ellen

stickywicket

Well done, you, for trying to do all you can to improve your situation! I wish you the best of luck. A broadly Mediterranean diet is a good, healthy one. I guess, with nurses' chaotic hours, junk food often beckons. If you smoke it's also best to stop too.

P.S. I don't think Jesus had anything to do with it

dreamdaisy

I am sure there are many people with RA and other auto-immune arthritis who are doing very well with the meds so don't need to find a forum. I have a friend who, like me, has PsA and his life has not changed one bit, he is wonderfully controlled on six sulphasalzine tablets per day and has been for years. He is not in pain either: he does not relate to my experience nor I to his but we have the same condition.

There are no absolutes in the world of rheumatology. The meds may or may not work (and one as to redefine the word work because it doesn't mean cure) and they can take anywhere between a fortnight and three months to begin to take effect. As for children, it's a very individual choice: luckily by the time I was sixteen it was beginning to be understood why things ran in families so I made the decision not to have children and do not regret it for one moment. My life since the age of twelve has been dominated by taking medication to make life tolerable - my parents were of the generation that missed the genetic bullets that ran in both families thus ensuring I got a double dose. Ma's lot gave me the asthma and eczema, Pa's the psoriasis; the inhalers that people take for granted now were not invented until I was around eleven or twelve, the steroid creams etc. for the skin came slightly earlier. My life has been dominated for nearly fifty years by the taking of medication to make life tolerable. Anyhoo, come Saturday, I will finally quality for free prescriptions - GET IN! DD

Neverending

Hi... I stumbled onto your entry.. I hope your managing ok.. My experience over 10 years has been different drugs and methotrexate, and Cimzea for almost 2 years.. I know Cimzea does take time to build up in the system, it does stop the progression of the RA,,, has done in my case... Methotrexate effected my liver on 2 occasions... As others have said, it is a lottery of drugs, consultants approach etc... Keep on the Cimzea if you can for 6 months.. Then chat with your specialist.. Anyway.. best wishes.. keep chin up.. m0150 .. Ian