22 and now on the 'last resort medication'

charleeh Member Posts: 173
edited 28. Feb 2013, 12:15 in Young people's community
Hiya all,

I am new to the forum and so please excuse me if I don't get my first post completely right!

I have a type of arthritis called Sero Negative Arthritis - basically its the same as Rheumatoid Arthritis but there is no Rheumatoid factor in my blood.

I have had the condition 5 years now and have found it quite debilitating; I have retrained at college 3 times career wise; initially I wanted to go into conservation as I used to be a volunteer in that field, I went and retrained in business and finance and couldn't manage that (physically) and then in accountancy, I worked for 12 months as a junior accountant and then fell ill in a severe flare (I believe due to stress from my employer for various discriminatory reasons). This flare has taken 30% of the use of my hands now they are both bent. My specialist has thrown the kitchen sink at me too and I am on the "last resort medication". After this they can't offer me any more treatment.

I have had; (please excuse the spelling mistakes!!!)

Humira (adalimumab) IV
Infliximab IV
now Toculizumab IV

steroids IV & injections

( I may have missed something- but this is what I can remember)

Over Xmas just gone I had to have a break from the Methotrexate injections and Toculizimab IV's as my immune system has been too low and weak. Over this break of about 6ish weeks I have come off the Tramadol (8 daily) completely! - on my own. I have taken up a form of exercise called Tai Chi for arthritis by Dr Paul Lam and taken up meditating to mange pain. It has helped immensely and have felt great and able to do so much more than normal.
However, on the nurses advice I took a Methotrexate injection last week and can hardly walk again now and have pain all through my body. Apparently my blood levels were ok to start treatment again but it seems to me that the injection has made me bad. I am in too much pain to do Tai Chi and too physically exhausted to meditate as I will fall asleep.

My doctor and nurses at the hospital are not open to alternative therapies and they don't listen to me that I have found things that make me better. I can't see the Doc till April now. Also I have found that stress makes my arthritis flare up really bad too - this is also something that they seem adverse to listen to. But I am adamant that I know my body. My arthritis started when I had a very stressful family situation and I had my biggest and last flare when I had all the stress from my previous employer.

I was wondering if anyone else has found that they have felt better if they have come off the medications?

And has anyone else had positive effects from alternative therapies such as Tai Chi, Yoga and meditation??

Finally does anyone else have flare ups if they are under a lot of stress??

Thank you for reading and I hope to hear from you!

Best wishes,



  • stickywicket
    stickywicket Member Posts: 27,686
    edited 30. Nov -1, 00:00
    Hi Charlee. It’s nice to meet you. I’m not a young person though I was 15 when first diagnosed with RA. I’ve been much luckier than you in that, although DMARDS weren’t on offer at first for me, my disease’s progress has been slower so that now, over 50 years on, I still get by on a combination of methotrexate and hydroxychloroquine, albeit with 2 hip replacements and 3 knees.

    I’m sure you’re right about stress making things worse. I think most of us find that. It follows that anything that reduces stress will help and I think Arthritis Care suggests that the treatments you mention can help.

    They are, however, envisioned as additional treatments, not alternative ones. They will help you to cope with the pressures of arthritis but won’t restrain it as the meds do. As I had years on only anti-inflammatories and occasional steroids, my joints all suffered as a result and are now very misshapen.

    I’m so sorry you had such a bad reaction to your meth injection. I know meth can have side effects but I’ve never heard of it actually making the arthritis worse. It must be very distressing for you. I can only suggest you ring your rheumatology helpline for advice. And/or you could have a chat with our own helpline people.

    I hope some of our young people will be around soon. Whether or not, you could, if you like, re-post this on the Living With Arthritis forum. I know you will get plenty of sympathy as everyone is very kind on here.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • Sezeelson
    Sezeelson Member Posts: 133
    edited 30. Nov -1, 00:00

    I've literally just joined this site :) I'm 21yrs old and diagnosed at 16 months old.

    It sounds to me like you should request your GP refer you to a different hospital and a different specialist. Once adult I was at University College London Hospital and the care there is absolutely amazing, I am now at a local hospital and I am shocked at the different level in care and knowledge and I now find hospital visits very stressful and I have to fight for the simple things.

    My arthritis is pretty severe, affecting every joint I'm my body and can positively tell I would be in a wheel chair if it wasn't for medication. I, like you have been on a whole array of stuff and I am now on Etanercept (enbrel) injections weekly which are amazing but they need special funding and I do believe there is criteria you must meet for your hospital to apply for it?

    Gentle exercise like swimming, yoga and thi chi are really beneficial. It helps keep your joints mobile without putting to much pressure on your joints. From a baby I have been to hydrotherapy, physiotherapy and doing gentle exercises at home. If I don't do these exercises I will be in more pain and more likely to suffer stiffness mainly in my weight barring joints (ankles, knees and hips) and also helps prevent muscle wastage so I strongly recommend you keep it up! Especially if you are noticing positive effects.

    I am prone to depression and currently on high dose of anti-depressants and when I'm stressed I feel massive amounts of pain and it is unbearable! I have to take very strong pain killers that pretty much knock me out. My arthritis is hugely affected by my mood the happier I am the better I feel and the less pain and stiffness I suffer. If I'm down and stressed I am in agony and find it near impossible to do anything.

    Due to a difficult time over Xmas I fell into a pit of depression and ended up off my medication. I really regret it now and can't wait to get on it with it working again. I am in agony, wrapped up in supports and splints on very strong pain killers. I find it extremely painful to walk although I have to get my dog out everyday which takes up all my energy. I cant eat properly due to swelling and stiffness in my jaw, currently I can only open it just under 3cm and can only lightly chew very soft foods... No biscuits with my tea :(. Things are very tough at the moment.

    I have deteriorated slowly and honestly wish I understood fully everything about arthritis when I was a child in the hopes that I could have prevented my condition from getting so bad. Remember, the damage done by arthritis cannot be fixed so really try your best to find out what works and stick to it! I really do you think you could benefit from being seen by a different hospital and specialist though!

    Good luck!
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Hello Sezeelson, kit's nice to meet you and I hope you find the forum a helpful place.

    My, you have had a rough time haven't you? Arthritis is an unforgiving disease, it has a go at not only our joints but our emotions, friendships and relationships. The meds are pretty unforgiving too - they do their best to help ujs but sometimes that doesn't feel like anywhere enough - we want this dross gone and that doesn't happen. I'm not surprised that you can cope better when you're feeling upbeat - I think that works for all of us no matter what our age or level of affliction. I know that I find mine harder to bear when I'm feeling down but I do know that all things pass - both the bad and the good. Life is cyclical in that way. :wink:

    I think it's difficult when you are ill as a child to truly understand what the impact of the illness and meds might be - that is the load that the parents bear. I was sickly with eczema and chronic asthma but just accepted it because I didn't realise in the early years that things weren't right. The asthma nearly finished me off on three occasions and there are still times when I wished it had but no - life had more crapola in store for yours truly. :lol:

    Right, I have to go and chef now - chores, like arthritis, don't end. I wish you well. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • charleeh
    charleeh Member Posts: 173
    edited 30. Nov -1, 00:00
    Hiya Sez,

    Thank you for your reply. I too have been thinking about changing the hospital I am at if this Toculizumab doesn't work. The doc mentioned another drug called Adacept (I think!!) which he said that he could try but doesn't think will work.

    My doc had been pretty great putting me forward for the expensive drugs but I defo think you are right when you say certain hospitals only get some funding for specific drugs. Maybe if this doesn't work I can try to change hospital to one thats got good funding lol!!!.....

    I am so sorry to hear how ill you are at the moment, I have a dog and I can't walk her at the moment as I am ill too. It makes me feel trapped, I love nothing more than dumping my phone at home and heading off over a nature reserve with my lovely dog - its the feeling of freedom away from everyone I miss! My poor dog is stuck running in the garden at the moment... lucky I have a big garden really!!!

    Depressions a horrible thing, and I can understand why so many people with arthritis have it. I cry sometimes and get sad especially when I think about taking my dog out (I am an outdoors-y person), its horrible being debilitated after you have known what its like to be pain free. I meditate a lot and sit in my garden as much as possible, even if I am all wrapped up with a cuppa in hand. I get the dog to come with me. I find that if I am out in the sunshine - the winter sun especially I feel a bit better, more relaxed and happier. Only problem is catching the sun in our murky grey skies!!!

    Thanks again for your reply and I do hope that you feel better soon,

    Best wishes,