Start all over again

Start all over again

well it is just after 8pm here in Oz and I just had a call from rheumatology to say stop taking imuran as my liver test came back and they have gone from 240 to 860 in the last few weeks. So now the good news is I have to start the three month wait again to be eligible for biologics on something new. God I am so impressed with my body right now. such good news just before I go off to have cardiac ablation next weekend.

31 Replies

  • You must be feeling gutted, I'm so sorry. I'm now on my third biologic, so know just how disappointing it is to have to start all over again. At least there are options, but the time waiting seems endless.

    I think you need to concentrate on your upcoming procedure for now, and try to put the rest to the back of your mind until that's over, although I know that's easier said than done!

    Good luck with the cardiac ablation, hope everything goes well. Best wishes. M x

  • Thanksfor your good wishes.

    I haven't even made it to biologics yet I keep failing the DMARDS at less than 3 months so don;t even make the qualifying. I am concerned about my liver as it took me 2 1/2 years to get to recovered enough to take the imuran. Ho hum on the merry go round again.

  • Oh SOM, yet another thing to test you. I'm not sure what I can add to Mavis' reply but to hope that it will all come good in the end & your patience will be rewarded. x

  • Oh me too. I guess I will wait to hear from proper rheumatologist to see what they are going to do.

  • You let us know the minute you hear!! I'm still holding up hope that someone will realise it's not acceptable for you to go through all that, risk liver complications etc to qualify.

  • I will but I guess it will just be well we will monitor your levels until they come down to an acceptable level. Hope it isn;t another 2 1/2 years.

    This is what happens when you are back with registrars not the rheumatologist

  • :( Crazy! So feel for you.

  • Nothing I can do I am stuck in the sausage factory again

  • Are there no trials you could be considered suitable for? Would it be worth asking to be referred to another Rheumatologist (not that you see one now!) for a second opinion?

  • I don;t think they would put me up for trials due to my chemical allergy issues. If my rheumatologist is included in the loop I may get some proper treatment but because I am back at the hospital I have to go with them. It is very frustrating. I had to say last night please inform my rheumatologist. geez.

  • I know, I'm frustrated for you goodness knows how you must feel. You can only hope you can actually see your Rheumy & he/she will listen to you. Why is it that you see a Registrar each time. I know it's different between countries but even here I see mine every other appointment. You'd love the way the Spanish system runs, same Rheumy every 3 months, no matter how controlled you are!

  • I am back in the hospital system because if trying to get on biologics so only see registrars. I finally heard from them this afternoon after I left a message saying well is anyone going to contact me about the phone call last night and how will this impact on surgery on the weekend. So I have now been for bloods and have to do so every week for 6 weeks. Also blood clotting factor, keep your fingers crossed it is ok or I have to cancel the whole op thing, fights, accommodation etc etc. I will have a complete and utter melt down if it gets cancelled. I can't take much more. Apparently they will have a meeting tomorrow including my gastro to see what they are going to do.

  • Obviously it must be the norm, I get that but it does seem odd, does it not to you, that it's so important for your possible future treatment yet you see Registrars not the person who ultimately make decisions to put you forward? Ah well, makes me grateful I see my Rheumy at least every other visit.

    Re ablation.... everything's crossed for you!!

  • Yes It gives me no end of anxiety because this is exactly what happens every time I am under a registrar. They think I am making things up when I say you really need to monitor me or I cannot take that because of ..... well here is another one that has learned a lesson at my expense. Thank you I have got so many things crossed I am in fear of turning inside out. It will be a lot of money to lose if it is cancelled

  • And that in itself isn't good for you, something possibly avoided if only you had continued care with one Rheumy. Yet more if you have to cancel, it's not small change is it.

  • Unfortunately to access qualification for biologics I had to go through the hospital so back in the sausage factory of play doctors. I am going to think positively and believe my clotting factor will be tip top. hahahah

  • I think that's all you can do. Here's hoping.

  • Oh I am praying and lighting incense and bowing down and doing anything to ensure it is Ok to have the op hahahah

  • Will they still do that with your liver test being so high.

    Sending hugs and hope they can.


  • No one has told me I can't, so I am going ahead as far as I know. It took them a week to let me know about the test results so I guess it is even higher now hahaha

  • Ok hope all is alright

    sending hugs XXXX


  • Thanks Chris. I suppose if they ever ring me back I will know more.

  • Hope all has gone well, did you have your cardiac ab . Sending hugs.


  • Thank you. Yep all went well and hopefully has fixed the problem.

  • Glad to hear you are fixed (heart). Hope you are feeling the benefit, and not in too much pain. How much longer have you got to wait for biological.

    Sending hugs to help you through. XXXX


  • thanks. So far it seems to be behaving, just tired and that should go in a few weeks. I am waiting for a call for them to be delivered so I can pick them up. Starting to flare a lot so I hope it is soon.

  • Fingers crossed for you. We have hail stones , was going to say heavy rain but it's hail, and high winds again. Already have one panel out and it's propped up with flower tubs and dustbin at moment. This is to keep dogs in, have two labs , one will jump through if given half a chance, the other doesn't jump got arthritis in his back legs. He has joined the club if you can call it a club.

    Sending hugs .XXXX


  • Wow that is some wild weather you are having. Labs are lovely dogs, love their food. hahaha Hope you start to get some better weather. We are in Autumn here and having some very unseasonably warm weather during the day but nights are starting to get cold. I love the warmth I hate cold with a passion.

  • Yes I think the damp is getting to me. There is something new at th moment, I keep getting a warm bottom and the top of my legs. I believe it's connected to my calcified disc. I have been told it's bulging onto my nerves in the core of my spine. I get pains shooting down through my but into my legs and it goes down to at least my knees. I was warned I would have trouble with arms and legs because of this. My arms soon ache like now typing this its the elbow area. Enough of me, grt grandson is in the hospital at the moment he had injections in his legs yesterday to put some anti-bodies in his body, as the ones he had when he was a baby have gone. He is sleeping a lot and can't stand it's too painful. Waiting to hear how he is.

    Sending you hugs and hope you get your med before Easter..XXXX

  • Taht sounds terrible and very painful. I have bulging discs in my lower spine and degenerative ones in my neck and they are very painful when they play up so I hate to think how terrible a calcified one pressing on nerves would be.That is terrible about your grt grandson. I think I have missed something, what condition does he have? It sounds very scary. Nothing worse than watching kids who are so ill. My third child had cancer and you never ever forget going through that with your children. I hope he improves. Prayers for your family,

  • He has low immune system his iga and igm are low and he is dairy intolerate. He also has something wrong with his legs ( rickets) comes to mind. His left leg is bowed, he is nearly 3 yrs and is still in 12/18 mths baby grows. The last thing I heard from granddaughter was that he has got to stay in, and they thing he might have an access at the injection sight. Won't hear any more tonight as I'm of to bed it's 11-30 mins.

    Speak soon XXX

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