Only well behaved patients need attend

By well behaved of course I mean those patients who respond well to triple therapy, who gratefully thank you for their methotrexate miracle. Who "suck it up" without a murmur when it comes to the debilitating side effects.

Of course some of us are "problem patients" despite the fact we have slavishly followed every instruction we've been given we are labelled so because we have had the temerity to experience severe side effects on more than one dmard. In fact we can't take them at all. We've had to ring the hospital helpline more than once - oh the outrage.

So like all problems we hope if we ignore them they will go away.

So what if we have failed completely to arrest the disease, so what if we've left the patient with a damaged immune system and a stomach ulcer.

Never mind eh?

Seven months of debilitating treatment later the disease is worse, the drugs have left lasting medical issues and I have absolutely nothing to show for it except my impending dismissal from work due to the time I've had to take off to get over the medication.

Now with a DAS score of 5 I have been left with no treatment at all and a see you later when you get to 5.1

When I was first diagnosed I was told repeatedly how lucky I was that I had been caught odd no one seems to care 7 months on.

I don't feel lucky now. I wish to God I had never been formally diagnosed because if I hadn't I would still be working and coping and a damn lot fitter than I am now.

**rant over**

16 Replies

  • Well written. This is something I have often been thinking about of how these " missbehaving" patients are ignored and left alone to seek sympathy only from forums like these. There should be given much more space to discussion around adverse effects and patients for whom the meds do not work. There are other ways of trying to control the illness and these should not be belitteled and brushed aside since many do or want to have a plan B.

  • Wow, just wow. So sorry to read this.

    There are people on this forum that have found help through other means like LDN, or diet changes perhaps some will chime in and add their thoughts.

    Awful, awful luck and I wish you a big turn around though I can be of no help.

  • Would be interesting to know, statisticly, how large the patient group is that share Frankiefarrs sentiments🤔?

  • Feel for you...absolutely.

    I have to say though, it's not just in rheumatology that adverse side effects are dismissed, ignored, or put down to the patients tardiness. Psychotropic drugs are some of the most awful drugs I've experienced. If you are a mental health patient no one listens to your complaints, or puts it all down to mental health!

    I left MH services years ago and refused point blank to take any more of their awful meds, the efficacy of which is shady at best.

    After eventually persuading my doc to refer me to rheumatology, and found to have an inflammatory illness, when I had a bad reaction to a DMARD was I listenened to? Fill this space.

    I'm very much afraid that drug side effects are often dismissed by professionals. I am pleased to have had the steroids, and now feel a good deal better on the leflunomide (not perfect but better!) but... I will always be deeply mistrustful of any medication. I'm also much more distrustful of doctors. I've been let down so many times that I have lost the blind faith I used to have in them. Which is perhaps a good thing!

  • Patients suffering from chronic illnesses that there is no cure for, only symptom relief at best, really need to be vigilant conserning the meds they are offered. Since I was diagnosed in Dec. 2015 with seronegative RA, I have learned an abundance of facts about RA that has helped me greatly when putting together and complementing my treatment protocole. I have kept my eyes open for research on underlying dysfunctions in RA diagnosed and the efficacy of meds. Seen that very often seronegative patients have a hard time with mtx and the tripple cocktail. Finally did find research on this.

  • You have a point. I have had allergic reactions to two Dmards and a really sensitive stomach probably due in part to anti inflamatories I was initially told to take. I remember explaining about my rash over the phone after my first allergic reaction and the nurse glibly saying that it could be psoriasis as that is a fairly common side effect of the drug. I remember feeling how you describe. I wanted to say "well thank-you so much" I am now potentially worse off and I heard no mention of this lasting side effect in the first instance. I think I am labelled as difficult because for lengthy reasons I will not take methotrexate.

  • Hi apbrooke - Seriously??? It can give you psoriasis???? I did not know that...

  • Apparently so. This is what I was told over the phone. But luckily I do not have psoriasis so it was not a side effect for me. I was just quite "rashy" for a period of time.

  • I'm sorry to read not only about your experience so far after your diagnosis but also your concerns about your employment.

    Is it being left to you and your GP to work out how to manage the stomach ulcer etc.?

    I wonder if any GP/CCG/Hospitals maintain a database of how many people fall into the category of those for whom the standard DMARDs are unsuitable but the people don't meet the points criteria for biologics? Maybe NRAS knows? ETA: @Beverley-NRAS or @EmmaS-NRAS ?

    When there are well-defined treatment pathways (such as working your way through the DMARDs, adjusting dosages/medication administration, adding DMARDs in, transferring to others as necessary), it would seem logical that some body or other would have a reasonable estimate of the number of people for whom that works and an idea of the numbers who find themselves off the standard pathway and feeling abandoned, with no clear map nor rendezvous point beyond the, "see you later when you get to [a DAS Score of] 5.1".

  • I am sure there must be data at least on the effects of the tripple therapy in seronegative compared to seropositive, since research on the topic already exists. This at least would give the patient new info about the risks involved in starting the exclusive med treatment.

  • I think that's a very good point. I would like to know what the figures are

  • I wonder if Beverley-NRAS or EmmaS-NRAS know of any centrally collated figures?

    Researchers refer to the NNT (or Number Needed to Treat) as an index of the benefit of a treatment - similarly, there's the NNH (Number Needed to Harm) as the potential downside/risks. I wonder if there's a similar index to the pathway?

  • This frightens me because it feels like OH is heading this way 😪

  • I am the same with a DAS score of 5 but my Rheumy says there maybe a way round that because I failed 2 Dmards. I am off all meds apart from Pred as I am having surgery in just over a week. I hope you get sorted soon xx

  • In my area even if I hit the Magic 5.1 it isn't a guarantee of treatment either. It just means they are allowed to write a funding request letter asking if I can have a biologic.

  • Well amen to that. I could not agree more. The mad rush to add all the labels and try all these horrific drugs. Now on Rituxan. I have been undecided about wether to have second round. At least there were no major side effects but also no benefit. Inflammation stays low so they 'doctors' are happy. Me , not so much. I have horrific pain every waking moment. I would be happy knowing this hell will soon come to an end. I say make a lot of noise. I plan to be as big a pain in the butt as I possibly can for as long as I can. This pharmaceutical companies are a great example. The problem is fatigue. I am mostly to tired to care.

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