Getting beyond a joke

Getting beyond a joke

Hello everybody

I joined here in 2014 and have to admit to feeling abit if a fraud as my symptoms weren't half as bad as the ones I were reading .

Fast forward 2 years and it's quite scary how this horrible condition has progressed .

I tried a cocktail of drugs before being prescribed biologics (sonprini) which I inject once a month . 2 weeks after injection I had shingles :-((

I worry as to where I'll be in another 2 years .

Onwards and upwards


16 Replies

  • Sorry not sure why my pic has come up .,,it was meant to be my profile pic , not very techy

  • You've added your pic to the post & not your profile Fiona but at least you know how to upload an image to a post! If you go back into your profile page, press the "Edit profile" button to the right of the screen on the blue bar & you'll see it says "Upload image" for both the bar & the circle. Press "Upload image" & choose the file you wish to upload from, choose a pic & press the green "Save" button & "View profile" & you're done.

  • Hi Fiona, you sound like me. I joined in 2014 with minor symptoms. Flashforeward and my hands are swollen and I am off work. Scary to think of the future....but I still hold out hope...

    take care


  • Hi there it is scary I've had this disease since 2014 and my Rheumy said at my first appointment it was mild, roll on 2 years and I'm 10 times worse and I've just been retired from work as been medically unfit to work and waiting to start biologics

  • Hi look great in pic I'm a year in to my RA I have the same demons, what's next ? Frightening thoughts for sure, I still haven't found a suitable treatment hope the ssz works fed up being in pain.

  • Pleased to welcome you Fiona now you've shown your face so to speak! Sorry to hear things are not so good for you. I've not heard of sonprini but of course anti TNF's & biologics can put those on them at more risk as the immune system is weakened but still it's rotten luck you've got shingles. I hope it is not extensive & you are able to see your GP in time to be prescribed an antiviral.

  • This is what I have such a hard time understanding, that so many of you that have been on the hard drugs, starting early in your disease and still have not got the disease. under control after years of offered treatment. I have also read so many testimonials where after years of hard meds and deteriorating condition the RA goes into remission with a strict diet and LDN. This is really something that should be taken seriously by rheumys and autoimmune patients should insist on getting all info available on new research and studies, because the truth is that you are always taking a risk whatever treatment you choose, be it the supression of the dysfunctional immunesystem or a treatment that tries to restore it's normal function.

  • The thing is Simba in the UK the guidance for biologics doesn't allow even for those who's disease is progressive to start treatment immediately upon diagnosis on anti TNF's/biologics. Nice guidelines state treatment starts with DMARDs & when they fail to be controlled on two DMARDs for 6 months (one being MTX unless it's contraindicated for some reason) & qualify for the DAS 28 criteria only then can their Rheumy's consider them for anti TNF's/biologics. I'm reasonably sure in some instances double or even triple therapy is tried before it's decided such regimes aren't effective enough so it could be a minimum of a year, even longer before they can even be considered & in not being controlled damage is likely. It's not ideal but that's as it is until the powers that be are convinced otherwise. If you factor in that the disease can start off slowly then gather pace, again the guidelines need to be met to qualify. It is taken seriously but some are unfortunate enough not to react well to DMARDs & it goes without saying that the cost of anti TNF's/biologics has a part to play in the strict criteria needed to progress to them. Whilst there are different meds some are specific to the type of disease which reduces options further. As I understand it this is why the introduction of biosimilars is being seriously considered, with the view if that being less expensive the option to progress will be open to more patients who haven't responded satisfactorily enough to DMARDs. Quite what the criteria will be to progress to biosimilars are l'm not sure but I would hope it's not as stringent as it is presently for anti TNF's/biologics.

    If you're basing your thoughts on forums or support groups like ours then I don't think that's an accurate average representation. The tendency is patients who aren't generally doing well or the newly diagnosed use them, far more who haven't joined forums or those who did & aren't actively using them are doing well on their treatment, whichever it may be.

    I'm afraid the general rule is you see your GP who refers you to Rheumatology, you're diagnosed & you start treatment. If the majority felt as I did they're only too happy to know the cause can be treated & readily accept treatment from a Specialist who advises it's necessary in an effort to control the disease. By definition Rheumatologists are doctors who have advanced their training in musculoskeletal disease & systemic autoimmune condition not dieticians but I do agree more could be like I've experienced & be aware of & pass on to their patients recommended eating plans known to be beneficial to their patients condition.

    I agree life is a risk, more so with the disease we share but in my view it's less risky medicated than not. We all have the choice & each must choose the right course for them whichever it may be but I do believe controlled scientific trials must prove that non traditional treatments, be they diets or LDN or both, need to be convincing enough & recommended by guidelines for Rheumatologists to recommend them or include them in information & advice given to their patients. I'm afraid testimonials wouldn't be reliable enough to convince most Rheumy's who's beliefs are science based. As LDN is still experimental until is proved to be safe & of benefit to the necessary authorities it will remain unlicensed or off-label. Healthcare professionals within the NHS can only prescribe it as a "special" which leaves the production quality & costing of such meds open to abuse by the middlemen (pharmacists & manufacturers). Meds prescribed which are unlicensed are the direct responsibility of the prescriber who will need to be convinced that the treatment is safe & potentially effective. Although LDN is relatively inexpensive funding for "special" prescriptions may or may not be accepted by the local CCG (Clinical Commissioning Group). Other implications are too many to list but if you wish to read it this link details them

    I think it's not as easy as we wish it could be but maybe the future will tell a different story....?? :)

  • I agree with you, what is LDN.?

  • Low dose naltrexone - given to heroin addicts to block pathways and can for a few people help in autoimmunity

  • But there are about 700,000 people on the UK with RA - of which the vast majority do ok on the hard drugs.

    I think the breakdown is something like 20% have mild RA that is easily controlled and responsive to lifestyle changes, 70% who do well or reasonably well on the hard drugs, and it's only about 10% who really have an awful time finding anything that will control it. Say 7,000 people - which is still far too many but a better number than 700,000?

    So a few hundred testimonials of people who have had great results with things like diet is really not that remarkable.

    The other horrible statistic is that there aren't enough rheumatologists - so each one can be looking after many thousands of patients.

  • Hello Fiona, I was diagnosed in July 2015 but that is not the onset in my opinion. I have had chronic pain for fifteen years. We just attributed all symptoms to other things. I literally forced my GP to run additional tests. The usual visit , oh it is this so take these drugs.....Fortunately, the results for me were undeniable. I am off the charts on all markers. Not a fortunate diagnoses lol. Hang in there, it can be a very rough ride but there will be successes along the way. The challenge is the complex nature of inflammation. It affects people in very unique ways. It does become a game of craps..what concoction will work best for you. Find a Rheumy who listens to you and trust them to find what works for you. Do not hesitate to ask for guidance. This is the best group I have found to date.

  • Thank you for all your replys , much appreciated . Work is impossible at the moment and the thought of maybe not being able to do what I've done for the past 20 years is quite a daunting thought . I'm long haul cabin crew which is a demanding job even when one is in top tip condition . I've been told by my consultant to wait until 11 April to restart biologics the meantime this bloody ( not sure if we can use that word ) RA is raging 

    Every morning it's another part of my body swelling up . Mostly in my hands I can't even lift a cup of tea . Going to go back to docs to get some naproxen . I'm due to return to work next week 

    I would cross my fingers if only I could . .....

  • Fiona, 

    I knew I recognised you. We spent the Millenium together in Narita, do you remember? 

    I last saw you at Bedfont during the strike in 2010 , you were there with your daughter. 

    I've been off work for 11months was diagnosed last summer with sero negative RA with explosive onset in multiple joints. 

    Steroids gave me Diabetes so had that to battle through that as well. ( off steroids since beginning of this year and sugar levels back to normal thank God)

    Looking back my fingers have hurt for quite a few years and I put my agonising feet down to 15 hour days/nights flying. 

    Managed a return to work course in March  after starting Biologics ( Enbrel)  at Christmas.

    Three flights in and my Hong Kong last week nearly killed me. Me and that First Class cork screw don't get on too well now, with these rotten sausages for fingers.

    Dreading the high chance of infection we have as crew. 

    Each day with this disease is an unknown quantity, as pleased as I am to see you again after all these years I am so very very sorry you have been affected too. 

    I wonder how many more of us crew have got it? 

    Hope you read this and remember me and that you have managed to get a bit of relief and a plan for going forwards with work.

    Very very fond regards.

    Mx ( Amanda)

  • Plus the Purser sat next to me on my return to work course also had RA with the added kicker of cancer too!

    Me thinks this flying lark is really really bad for us as we all have known deep down I guess. 

    Best wishes to you.


  • OMG Amanda !!! Of course I remember you .Ive only just seen this message .

    Sorry to hear you have this damn condition .Im still off work hoping to return end of June saw rheumatology nurse and she's added another drug to my cocktail .Leflumode ( can't even spell half of them :-) ha ha

    I wonder how many others at work have been affected by this ? I was even thinking of asking on the XXXX Facebook page as I feel so out of the loop

    Have to say work have been ok so far

    Did they make any adjustments for you as in roster wise ? I was told it could only be temporary 😳

    Take Care xxx

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