The long awaited two specialist Consultation day arrived today.
At 11.30 I went to see Ortho guy re bunions and general bad right foot. Had plan to have foot made right this coming winter. Anyway to cut a long story short - I need an MRI to see what is going on with the main tendon in right foot, Johnny himself was very nice, and put me completely at ease, he says bunion is least of my problem and tendon treatment/ surgery is much more urgent as if left untreated will cause osteoarthritis in opposite side of foot! so we'll see what MRI says. I asked him would I have to come off my RA treatment and surprise surprise, he said I don't take my RA patients off their RA med, as putting them into a flare can cause the surgery to be less effective and undo my work. I was quite worried about that, because I had heard that the same anti tnf may not work 2nd attempt - well well that was sort of a relief and a surprise - we will see what MRI shows.
Happily enough I trotted along to another hospital not too far away, and saw my RA Consultant as cheduled at 2.15pm, she shuffled through her notes (does'nt have a computer!) and said well all seems normal how do you feel? I said v well at moment, she says well I'm keeping you on same meds Ok? I said 'well what is this called then chemical control of RA' she said no you are in - wait for it ladies yes REMISSION!!! there is no other word for it. I asked her how did it all work for me she said two things as explanation. 1. I got you early. 2. You can tolerate the meds. So of course I had to bring up what if they stop working - she said well they are working so, call me if your wrist gives gives you any more trouble, otherwise see you in four months... I also mentioned that 'Johnny does'nt take his patients off their RA med and she said ' good for him, I'm glad to hear it, he is obviously keeping up with current practise'.
I have to tell you people of NHS - U.K. we don't have the same health system here as I have explained before, and generally you have to have private tx to be treated in a timely fashion. 10 -18 months wait for ortho cons public Irish system. I paid the orth €150, I paid the RA €170, luckily the MRI will be covered by my Health Insurance. So there is this evening €320.00 sitting on my credit card - I ask you was it worth it?
xxx Gina.
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Gina_K
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every penny.. if I went private my gp reminded that I would have to pay the private consultant his fee£180 plus fund the humira or enbrel myself and they arent cheap!!
For news like that Gina, well worth I would say. Well done on the remission just shows what can be done by treating it early and having a good consultant!
Of all the operations I have had Gina, about 11 now, under quite a few different surgeons they do all seem to have a different approach as to whether or not you stop you meds. I just do as I'm told now as they know best.
I am very much the type to do as I am told, but it amazes me hows docs differ? It can't be fair to patients. I refused to go to see main man for feet in my hosp, as a pal told me he was obnoxious. This man I saw today would inspire confidence. Also I asked re folic intake, as I see a lot of peeps on here take it every day, my RA Cons said that is clonfolic and not the folic I am on, which can only be taken once a week!!!
mayb they do & we don't know! I often wonder about that I am sure peeps with money just pay for state of the art treatment - though sadly all the money in th world can't save some
Yeah well done So Remmison is possible!
Glad to hear there is hope xx
That is great to hear Gina.. well done.
Now I don't want to be the fly in the ointment, but did you not say a couple of weeks ago, I can't recall, that you felt tired and was flaring? Were your bloods normal at that time, if I recall you were going to have blood test the next day? So remission would be?? What? Just curious, because all my bloods are normal, but I have in the last few days had a bitch of a time with tiredness, fatigue or whatever blooming thing you want to call it. My muscles ache and have sharp pains in forearms, tops of legs... Feet and toes stiff, slight puffiness on knuckles,
I suppose this should have been a question really??
Yes I did say I was tired v tired, but my understanding is that the disease is controlled at present that is the main objective of the treatment to stop or slow progression, there is no cure, the consultant said the long term plan would be a very very slow reduction in meds. A side effect of the meds can cause tiredness or the disease itself or just getting older and working hard, but I have not been flaring for a while, my right wrist bone was the last bit of stubborn swelling I had injected. I suppose the main thing is that the meds are working at present. I have damage in the main tendon in my foot, as you know where inflammation has been - any muscle, tendon or joint or organ can be damaged by this systemic disease.
REmission from a clinical perspective seems to be normal blood results, and no visible inflammation and feeling well generally.
I was'nt going to post details re my good news as I know so many are still suffering, but decided too as felt you would be glad at least someone is satisfied with treatment at present 7 doing well.
I wish everyone the best.
xxx, G
hope for us all xx
I must say Gina you look very glam in your photo... I dont dare post a pic of me in my steroidal bloom ! I think that its marvellous you are feeling better.
i I am hoping to get to where you are and believe its possible. I dont think I will be cured but if they can dampen the process right down and hold back the disease that will do me. Having had 3 Auto immune disease`s now I have had experience of the rogue antibodies burning out so I do genuinely have hope. Although most of us on here have had it rough, lets not forget some people do burn out maybe a tiny percent but its hope for us all.... keep fighting the RA whatever....Never give up......... Fi xx
I pray it burns out, but won't know unless off all meds, whatever happens some damge all ready done. Am pleased for moment. Aside from horrible blister on foot! caused by improning wvwn with orthotics! so may not be active RA but still affects me anyway.
xxx G
Hi Julie,
I'm glad you did post this news, I'm so happy for you and I'm sure you've given others hope like myself.
I'm always desperately looking for the positive, after reading this I went to sleep feeling better Just don't disown us now your feeling good!!!
I was both elated and worried when my consultant told me he was going to start me on a biologic, couldn't wait to feel better like you, then worried about what if that didn't work, but then you asked the question about the JAK meds, I know this may be a long way of but again......felt much better knowing there will be other options.
Thanks for that comment Williby I was quite worried about blogging that, as I know many on here not feeling good, and i did'nt want to come accross as smug, which i'm not, and am well aware of how serious the condition and the taking of meds is. I feel I am well monitored and have tried anything I was offered, i have ignored the huge tummy upsets nausea tiredness (ugh The farts!) and kept popping pill & shredding contraindictions!. It has all settled and my liver tolerates it all and no rashes so far. I think there is hope of control/ remission evn if you will have some joint damage. Maybe the fact that when I was young in my 20s i had 3 very major abdominal surgeries totally unrelated to RA, my pain threshold is high, though I think thats a fallacy, no one can stand pain. I can't tolerate any codeine at all strangely!
Anyway, Wiliby, really appreciate what you said as I was thinking of a farewell to my RA pals because of vibes unintentional or not. will stick around a while longer.
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Off topic: Happy Saint David’s Day
Not Happy
at last, i got my injection !! happy days xx
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