Onward and Upward Part Deux

I knew it wouldn't be straightforward.

I saw my favourite Rheumy nurse today and had an open and honest discussion about my situation. To summarise

* I've failed on 3 out of 4 DMARDs

* The Lef is holding the disease at bay but not stopping it

* I'm worried about the number of joints the disease is now affecting, particularly my back

* I'm scared to move too high up the chain to biologics so soon

I also threw a few other rocks in the pool such as the regular tingling and numbness in my extremeties, the now intolerable night sweats and the crippling exhaustion that indicates the disease - despite the lack of swelling and redness - is once again active. The affected joints are hot to the touch, confirming my suspicions.

We talked about my preference to try Penacillamine with Lef and two things happened : I finally convinced myself I'm actually quite ill and realised I need to be more aggressive in my disease management, and Nurse told me I was off the Lef anyway. Numbness/tingling is a side effect of Lef that can cause permanent nerve damage, usually only seen after some years on the drug but ith my history of adverse reactions they're taking no chances. It could also be part and parcel of the disease.

Strike the above, I've now failed on 4 DMARDs (well not exactly failed, I just can't seem to tolerate them!).

Which rather narrows my choices somewhat.

As of this morning I'm half a pint of blood lighter as they test me for diabetes, thyroid problems, folic acid and /or B12 deficiencies and anything else that could cause the numbness and tingling which has actually prevented me from working, so intense is the sensation. I'm also being referred for nerve conduction tests to see if there's any nerve impairment as a result of either the RA or the Lef.

Joy.

So finally, after all the hand-wringing (albeit softly and gently) and sleepless nights about my predicament the oft-referenced ball is now rolling to get me onto Humira as soon as possible. In the meantime I'm off to find a travelling circus so I can find a bottle of Snake Oil that'll hopefully do *something* in the meantime.

5 Replies

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  • cat woman let go before the lefum does more damage.. go for enbrel.. or andalimumib.. I WOULD!!. speaks as a fellow sufferer.. im trying gold injection moment... have researched all the options.. and think you are suffering for no reason... get some steroids.. and go for a new option be it gold or a biologic..

    my gp cant understand why my hospital hasnt given me enbrel..!!, I KNOW WHY COST!!, went to a pharmacy team meeeting before going off sick.. mr nick nick,, wint use his surname.. said we must stop the consultants using thses expensive drugs aaagh some biologics can cost 5,000 a year per patient!!.. enbrel is cheaper...

  • ps having neck and spine xray later this week... think the treatment i have recieved is por at my hospital.. my gp is going to transfer the contract else were

  • Catwoman.

    I'm sorry that events have overtaken you:-( Sounds like it's time to bite the bullet and go for proper disease control. Scary but will give you a better quality of life and more time to do the things you love rather than grimly existing.

    Take good care of yourself,

    Cece x

  • Dear CW, Just looking at a bit of the chat, and I have to say I am diagnosed 2 1/2 years and on combination of humira/ methotexate & plaquinil and all my bloods are currently in the normal range - I was also on steroids up until Xmas 10 and am off them completely now. I take Cymbalta for pain relief & anti dep. I take occasional diclac and Losec. The only pain killer i take is paracetamol. Now I don't know if its just me, or it is my consultant that is brilliant, but considering my RA was very agressive I am doing great. The Humira was the break thru, I was just out walking tnite and just felt I really have my life back now. I might write a blog about this. I am not a medical person so am a bit afraid of giving incorrect impression but there seems to be a huge difference in the meds used. I live in Rep of Ireland and while it is a terrible disease with no cure, my consultant guaranteed me on my first visit that she would find the correct treatment to control my RA, it took a while, but it is true I am OK :) (fingers etc crossed)

  • Hi, I think you need to go with it and get onto some proper disease control too, I understand you not wanting to exhaust your treatment as I am in a similar situation.

    As for reaction to the drugs I sympathize I too have had many reactions including anaphalectic shock to infliximab. Am taking Rituximab now and have a slight reaction to that so every time I have the infusion I have to be admitted onto the RA ward they don't want to take any chances and neither do I. the Rituximab is not working and lasting as it did so they want to change, I don't, for the same reasons as you I don't want to exhaust my options either.

    But, at the end of the day, you need proper disease control at the moment otherwise joint damage will be inevitable as it was for me 11 ops later.

    Take care and hop you get sorted soon

    mand xx

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