Immunology appointment: Been waiting 6 months and just... - NRAS

NRAS

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Immunology appointment

wishbone
wishbone

Been waiting 6 months and just had a phone call from immunology to say there's a cancellation appointment available at 9am next tuesday. Early mornings are not a good time for me RA wise, but I would have to wait another 6 - 8 weeks if I refuse this appointment, so it's all systems go for tuesday...if you can call it that! The reason for my appointment is that my rheumy want's my bloods looked at to see if anything untoward is going on that could be the cause of recurring infections I was having when I used to take immune suppressing meds. I'm really hoping that I'll get the all clear as she wants to start me on azathioprine ASAP. As I've been infection free for the last 18 months she doesn't think there should be a problem with my bloods and she could well be right, but the probable reason for me being infection free is because I've stopped all immune suppressants for around the same time period, hence my immune system is more effective at fending off infections. Anyway, if the constant pain I'm in isn't enough, she's also concerned that I'm going to completely loose the use of my right hand if I don't start taking something soon. There's also some other more serious problems that need considering but I won't go into them here. Enough to say that I'm keeping all digits crossed that my bloods are ok and the aza can help me as I could certainly do with a change of luck...........

7 Replies
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Wishing you all the best for a satisfactory appointment. Early ones are the devil but at least with lighter mornings maybe it is a tad easier to get up earlier to prepare! Good luck! x

Early mornings are a bark aren't they! There is one plus point though - I assume 9am would be one of the first appointments of the day so there is more chance of being seen on time. Wishing you all the best x

Thanks both.

Going to have to get up plenty early as the journey will be during the morning rush hour, so will need to allow a good hour for that. Also time for pain relief to properly kick in...that'll be close on another 2 hours. So it looks as if I'll have to get up around 5am. Hmm, not sure the old bones are capable of rising at that ungodly hour, so it looks like my wife is gong to have to do the honours by getting up and serving me tea and toast in bed...not forgetting my pain relief of course! That way I can manage to grab a bit more kip plus it will be a lot easier getting up after the pain relief has kicked in. Well I am unwell so it's not my fault that I struggle in the mornings, plus my wife enjoys looking after me so there! ;-)

I will be interested to hear how you do with the azothioprine. I’ve been on it for close to three years. My RA attacks my liver and the azo has made my liver numbers normal again, but didn’t really have any other positive effects for me. And I was catching every little bug that came my way. Interestingly, when Enbrel was added, all of that stopped and I feel as close to normal as I have since diagnosis. Now the doctor wants me to stop the azo for a month and see if the Enbrel can keep my liver numbers in check on its own.

Please give an update on how the azo works for you. Best wishes!

wishbone
wishbone in reply to dbestdeb

That's interesting, I had to stop taking enbrel 3 years ago because my consultant at the time reckoned it was the main, if not entire, reason in allowing a bug from a UTI access my bloodstream resulting in septic arthritis in my hip that required surgery.. followed by a 10 day stay in hospital. :-( I'm just taking hydroxy at the mo, but my RA i getting seriously worse so I need something stronger. Therein lies the problem...if I go on stronger more effective meds then I run a high risk of getting another serious infection, which would be my third. If I don't take something stronger to control my RA it will further damage my joints and possibly heart and lungs as well, both of which are already damaged, the latter due to my RA. So, you can see that I'm stuck somewhere between a rock and a hard place so to speak.

Both rheumy and I have, rather reluctantly regarding me, decided that the better of the two evils is to try and control my RA, so we'll be seeing how I go with a low dose of azo. Just hope I don't have the same bug problem with it as you had!..and of course it helps me some... all providing my bloods are good to go of course. :-)

Hope the enbrel keeps working and your liver remains ok. Will let you know how I get on with the azo.

dbestdeb
dbestdeb in reply to wishbone

I’m always amazed at how different we all are even with the same disease. I hope your experience with azo is perfect!

wishbone
wishbone in reply to dbestdeb

Thanks, I could do with some good luck for a change.

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