22 and now on the 'last resort medication'

charleeh

Hiya all,

I am new to the forum and so please excuse me if I don't get my first post completely right! ( I am posting this in forum as well as the young peoples forum)

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!!!)

Naproxen
Celebrex
Sulfasalazene
Methotrexate
Humira (adalimumab) IV
Infliximab IV
now Toculizumab IV

steroids IV & injections
Tramadol
Oramorph
Dicloflex
Voltarol
Ibruprofen

( 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,

Charlee

stickywicket

Hello again, charlee. I’m glad you re-posted on here as the Young People’s forum is fairly quiet.

I’ve nothing to add really to what I wrote last night over there, other than I forgot to mention we have quite a lot of sero-neg people on here.

I’m still in shock that you’ve been through the full gamut of auto-immune meds in just 5 years while also managing to train for three careers How on earth did you manage that? Are you Superwoman?

I wonder if it might help to just take some time out from work and/or college and try to get your condition really stabilised before continuing. As you so rightly point out, stress is a big factor with arthritis and you must have been under a lot these last five years

I still think you might find it useful to talk to our Helpline people. They are good listeners and might have some suggestions for you. Their number is at the top of the page.

trepolpen

hi Charlee

sorry your having so much problems , Methotrexate is a realy good drug for RA if you can stand it , had to go back on tablets mtself , I take 5mg folic acid 6 days a week & helps sorts th side effects , the Bio's , there is so many new ones to try & most of us has to change them at some point

the main thing with RA is to look after your joints , at some point they will find a good treamtment that works , they have developed so much & know so much more in the last 15 years & people dont need to end up with deformed joints like those of us with RA a long time , there is some exciting new trails going on so hope for all of us

as for alternative therapies , hydrotherapy will help loads , meditation/mindfullness will help but there is very little that realy help , some food can make it worse like citrus fruit but we are all differnt

what ever you do , dont come off the drugs , you will do long term damage to your joints

LignumVitae

Have you tried acupuncture? I'm with Sticky, you must be quite amazing to have tried all those meds whilst retraining in three different careers. Don't give up on conservation, there are plenty of desk jobs, I work in a related profession and spend very little time in the field doing cold wet field work! A bit of time out might really help too, stress really feeds arthritis (I'm sero neg too). Good luck and let is know how you go.

Catie

Hello Charleeh,

I'm sorry to hear that you feel so poorly and hope that in time you will find something that really helps.

I have OA in my spine and struggled with walking until my Ortho Consultant suggested 'Tai Chi' to me. Like you, I have found it has really helped. Hopefully you will feel well enough to continue with it soon . I've also tried acupuncture and found it really helped to release very stiff muscles.

Catie

charleeh

Thank you to everyone who replied! I am most grateful.

I spoke to my specialist today (after inviting myself to clinic) and he said that same as you 'stickywicket' that the things I mentioned are not disease modifiers but may help me 'feel better'.

I am happy that he at least has finally agreed with my thoughts that if you feel better in yourself by meditating, yoga, Tai Chi etc you can cope with pain and keep a better positive outlook on things. - I have never got that much out of him before as he dismisses a lot of it so now I feel better about that!

He reckons that the 'last resort drug' Toculizimab is working but too good, hence why I have been having a half dose. problem is it lowers my white cell count too much leaving me at risk. He has suggested that it could be a result of over medicating with both IV TOC and methotrexate (MTX) injections. So now he is advising that I leave off my MTX. I have been taking a reduced dose of this from 20mg now to 10mg and as of today nothing and to see the effect of TOC on its own which I will have next Tuesday..... he said I am that heavily medicated that throughout my long break 'off' all the meds that they would have been highly present in my system still. So my meditations have not worked magic lol.

I asked him jokingly, can I not manage my condition with a herbal remedy? He laughed at me and said when I find one that works let him know as I will get the nobel peace prize LOL I just can't help but worry slightly of all the chemicals and drugs would have such adverse side effects in the long - term?
I guess at heart I am a naturalist - or a hippy, a matter of opinion really

Currently I am not at work, I had a huge amount of stress from my previous employer as they treated me very poorly with regard to my disability, I think that's what bought on my latest and worst flare that's bent my hands. I am simply not well enough to look for another job yet - so I agree I am getting much needed rest at the moment, something that's very foreign to me!!

I'd love to end up in a career that was conservation based with a charity or council. I will just have to see how well the doc can get me!!! I can' t manage the amount of data entry that comes with accountancy; or the stress that comes with business and finance.

I am currently looking into having some acupuncture. There is no way I want to go back on to the Tramadol or other painkillers if I can help it, although today I must admit I am rather stiff ... I aint gonna crack!! I will step up my research into finding someone good since everyone is giving me positive feedback!!

Again thanks so much for everyone getting back to me, I appreciate speaking to other people who live with the condition.

Best wishes,
Charleeh

stickywicket

My guess (purely a guess) is that your consultant has appeared 'iffy' about the Tai Chi and Acupuncture because he was afraid you'd see them as alternatives to the meds rather than things to help with the pain. They'll do nothing for the disease but might help the pain a lot.

Yes, it hadn't occurred to me that, on high doses of the meds, they'd still be in your body for some time after you stopped taking them. Just as they take several weeks to work initially, so they take several weeks to lose their effects.

I think all of us who take DMARDS or anti-tnfs have concerns about putting such strong meds into our bodies but the fact is that any auto-immune arthritis is a powerful disease and needs such things to contain it.

I'm sure we all get a great deal out of sharing our opinions on here and talking to others who really understand. I know I do.

barbara12

Hello charleeh
And a warm welcome from me
Gosh you are going through an awful time,like you say talking to people that understand can be such a big help .
Has for your medication, I can only associate with the pain killers and antiinflams,I have tried to do without certain ones, but usually have to go back to them, but if I am staying in for the day, I do cut down on them.
I have also tried different concoction of my meds , must say what works for one doesn't work for another.
Tai chi is suppose to very good for the mind and the body, and if it help you then that is all that matters.
You take care xx

charleeh

Yeah, I guess I do crave a natural remedy as a complete alternative to the meds and Doc probably sees that.

I try to do as much as I can to reduce my carbon foot print, eat organically, buy eco household goods etc and I wish so much I could 'treat my body well' I used to swim 40 to 50 lengths a week, walk hillforts with my cousin, weight train and do yoga. I really did put a lot of effort in to being well, so a part of me wants to fight the 'unnatural medications' lol

It doesn't really get me down having the arthritis. I agree I get cranky when the pain is bad and I feel down then but I can't say I feel sad. My friends all comment on how positive I stay, but I do always try to find the positives. I don't often think I have it bad, I prefer to think of it as another challenge lol I think my meditations help a lot

Best wishes,

Charleeh

stickywicket

From your second paragraph, charlee, it sounds as if you're still working on accepting the fact of arthritis. You're only five years in and you've been very fit until you got it so it's going to take some time. You're not going to be able to do all the stuff you could do before and you will, almost certainly, be on strong meds for the rest of your life - but it can still be a very good life just not, probably, the one you had planned. You might find it helpful to read the thread on 'Acceptance' near the top of the page. You'll see that acceptance is an ongoing thing and we are all in denial at times.