It's all systems go!.....

[wishbone]

Went for my immunology appointment this morning and very informative it was to. My rheumatologist referred me to see if I'm ok to start RA meds again, since stopping them some 20 months ago because of recurring infections. Apparently my immune system is looking pretty good as is the rest of my bloods..bar for one or two slight blips that is. A couple of other chronic health conditions also needed to be taken into account, but all in all the immunologist thinks it will be ok for me to start taking meds again. My rheumy wants to try me on either azathioprine or barictinib. She would have preferred the latter, but after I had a serious infection while on enbrel I was reluctant to go on another biologic so decided I'd prefer to try the azathioprine. Not a wise choice according to the immunologist who agreed with my rheumy that barictinib would be a more appropriate med for me. The reason being is that it targets a specific part of the immune system (don't ask me what part?) unlike azathioprine which blanket bombs it so to speak. Nothings guaranteed of course, but for that reason he thinks I have less chance of getting an infection. So it looks as if I'll be starting barictinib before too long. Just hope it works ok for me as I could certainly do with some relief from this blinkin' RA.

Not only did the immunologist ease my concerns about starting meds again, he also reassured me somewhat regarding the other health conditions I have. All in all I was really impressed by him, he explained everything in detail and gave me a physical examination, which actually included asking me to open my mouth and say ah! Can't recall anyone asking me to do that for a long long time. Think I was in there for a good hour and came away feeling more hopeful than when I went in.

[helixhelix]

Lovely! Nice to hear a positive story. Especially opening mouth to say Ahh! That made me laugh!

[nomoreheels]

Great news! I'm so pleased Wishy, it's been a long time coming. I understand why you chose it & do hope the AZA helps but if not at least you know there's another option for you. 😊

[wishbone in reply to nomoreheels]

Yeah, I know, thanks heelsy. The sooner I start the barictinib the better as I'm starting to have serious trouble with my next to useless right hand...I have what looks like 2 or 3 lumps on top just below wrist, fluid maybe? Whatever it is it's causing sharp excruciating shooting pains if I hold my hand in certain positions. I'm afraid to use my hand now, not that it could do much anyway, which as you can imagine is making life more than a little difficult. I've had this happen a few times of recent but not as bad as it is now. It has eased off in the past if I rest my hand for a while, so hope it'll do the same this time. Presume it must be nerve pain being so sharp? Can now see why my rheumy was concerned about my hands and wants me to get started on meds sharpish.

[wishbone in reply to wishbone]

Thankfully the shooting pains in my hand have eased a bit this morning and the lumps have gone down a little. I hoping this is a temporary problem. If not, then maybe getting back on meds will help.

[Radiogirl]

Good news is great!! So happy for you. Looking forward to hearing more continued improvement. xxx

[Pam-51]

Hello,

Reassuring to read your post as I too have had problems with recurring infections. I too am awaiting an appt. to see an immunologist at Addenbrooke’s. Have so far waited 10 weeks and no appt. yet!

Two years ago I was diagnosed with hypogammaglobulinaemia, reduced immune system due to treatment for my RA of 40+ years standing. This resulted in repeated infections as you describe over a period of several years. I have had therapy with immunoglobulins to improve my immune system over the past couple of years but have only recently been referred to an immunologist. Have been on Rituximab for 10 years + and in addition steroids and methotrexate for 40 + years. Is your RA longstanding like mine and have you also been on these drugs for a long time?

I hope to have more reassuring news when I eventually see an immunologist as I feel it should have happened before now. I too am unsure about continuing biologics, but they have been the most effective treatment over the years. Nothing else provided the same relief from symptoms.

Hope you keep well. Take care

Best wishes Pam

[wishbone]

Hiya Pam,

Sorry that that things are not good with you. I can well empmpathise with your recurring infection issues as they've caused me some real problems for the last 3 years.

I've had RA for 15 years. Was put on methotrexate and everything was relatively rosy up until approx 3 years ago when I developed a chronic bladder condition along with recurring UTIs... and it's been all downhill since. Can't recall exactly when, but my RA wasn't responding as well as it used to with the methotrexate, so I started taking the biologic enbrel, which worked wonders for the time I was on it. Alas, after a couple of months I was admitted to hospital with septic arthritis in my hip!...ouch!! The orthopaedic consultant at the time thought enbrel was the main reason for allowing a bug from a recent UTI into my bloodstream and advised me to stop taking it, to which I duly complied. Not only that, but the sepsis episode scared the life out of me so I stopped the mtx as well and tried to get by without any RA meds at all. During my med abstinence, which lasted about 3 months, my RA went absolutely crazy and it was during that period that I probably developed RA related pulmonary fibrosis apparently caused by the inflammation getting into my lungs. There appears to be a lot of uncertainty with these darned auto-immune conditions, but it looks like going cold turkey with the meds was not a good decision on my part. To try and cut a long story short..with the exception of hydroxychloroquine, I've been off all RA meds for the last 20 months. Result being that I haven't had a single UTI during that time....would have had 3 or 4 stubborn UTIs during that time period when I was taking immune suppressing meds. Hence my big quandary is, or has been up until now, is whether to go back on meds and risk getting another serious infection, or risk further damage to my lungs and possibly heart with inflammation from my uncontrolled RA. According to the immunologist.. nothing's guaranteed and even if my inflammation levels were very high it's quite possible that it won't affect any vital organs and what previously happened to my lungs is a one off. That said, he doesn't think it wise for me to carry on as I am and advised that I start the baricitinib ASAP, which is where I'm currently at.

I wish I'd been able to see an immunologist much earlier as I've had unanswered questions and been full of uncertainty as what to do for the best. Nothings guaranteed of course whatever I decide to do, but I did find hearing the pros and cons of what's happening with me reassuring, as was the advice I received. Fingers XXXX it works out ok........................

Sorry for the long post, just hope you find my ramblings interesting and it helps a little.

The waiting list to see an immunologist in my area is around 8 months. After 6 months my rheumy chased things up and I was given a cancellation appointment. Hope your wait isn't too long and you get some help with your condition.

i