Benepali flares

[Ouchyjenna]

I had to stop my Benepali for a week because of another infection but I'm having a huge flare up. Is that normal I've only actually been without it for about 4 days now. I'm so stressed out at the mo. Maybe it's that, but does anyone else get flare ups when stopping just for a few days. I'm so fed up of these infections I'm on my 5th since Jan.

[Nessa28]

Hi I hope you're ok I had to wait a week for delivery of my humeria was due to inject last Thursday but due to new funding being put in place and that HatH only deliver on a Thursday I have gone into a flair . I was put over to their pharmacist who stated that the drug stays somewhat in your body for about 10 days after to increase my pain relief and to try to stay active with periods of rest . It has been awful I injected and have to say it's slightly better but as there was inflammation in the system I think I will have to manage . I had forgotten how painful it is till this started but please try not to stress I tried everything I could to get delivery and to no avail and the stress doesn't help . Pace yourself thinking about you hopefully you can inject soon 🤗🤗

[wishbone]

Hi jenna,

Can't answer your question, but I also suffer with recurring infections, although I haven't had one since stopping RA meds 20 months ago...would have had at least 4 during that time when taking meds.

I see that your rheumy did consider starting you on a JAK inhibitor some time back. My RA has been getting worse of late so my rheumy wants to start me on either azathioprine or baricitinib a JAK inhibitor, she prefered the latter. To make sure there wasn't anything untoward in my blood that might stop me taking these meds, she referred me to an immunologist. Thankfully there wasn't, should add that I'm prone to infections due to another chronic condition. What I did find interesting was, because of my infection risk, he, the immunologist, thought baricitinib was the more suitable med for me because it targets specific parts of the immune system, unlike azathioprine and other meds, which he said, tend to blanket bomb it thus making it less effective at fending off infections. At least that's my gist of it.

Anyway, as you also seem to have recurring infection issues, and unless your rheumy hasn't already discussed the above with you, then it might be worth having a chat, especially as he/she did consider starting you on a JAK inhibitor.

BTW, I'm also from Wales...whether that's a good or bad thing is a matter of opinion I suppose!

[Ouchyjenna in reply to wishbone]

It's a catch 22 because when I'm able to take my injection of Benepali or works so well. I think I just need to try and stop stressing about it and my work issues that are going on and try and relax . I'm.praying no more infections now. I'm due to see Dr Linton in Neville hall month so I will have a chat to him.about the jaks Injections if he thinks I need to stop benepali

[wishbone in reply to Ouchyjenna]

Tell me about it!...I've just about had my fill of catch 22 situations with this disease!

I've had a lot of trouble with infections in the past, so starting back on meds is a very difficult decision for me. Trouble is I could end up in even more serious trouble if I don't!

Honestly, I've never had such a difficult decision to make since my dear wife asked me to marry her more than 45 years ago.

I'm under Dr Piper, who's HQ is also at Neville Hall, but I see her at my local hospital - Ysbyty Ystrad Fawr.

Good luck to you, jenna.

[Hobbledehoy in reply to wishbone]

Glad you're doing well on Baracitinib. Me too so far, six weeks. Huge relief from side effects, only some brief hot flushes so far. Any comments gratefully received.

[wishbone in reply to Hobbledehoy]

Glad you're doing well on baricitinib.

I haven't started taking it yet. Been waiting for a stack of test results from immunology before I can go ahead. They arrived this morning and the results are good to go, so am waiting for an appointment from rheumy. I'm still very anxious about starting baricitinib or any other immune suppressing meds come to that, because of the infection risk. Not having had a single infection since I stopped taking meds 20 months ago probably doesn't bode well, but I'm willing to give baricitinib a go. First signs of an infection though and it's no more meds for me and I'll have to take my chances on the consequences of having uncontrolled RA.

Hope you and baricitinib have a long loving relationship.

[Hobbledehoy in reply to wishbone]

Cheers! Please keep in touch. p.s. It's a v fancy expensive new drug, you know, so we are lucky really...

[wishbone in reply to Hobbledehoy]

Yes, I know. I do tend to have rather expensive exotic tastes. Just hope it's not money wasted and BARI does the trick for me.

Will let you know how I get on. You can do likewise if you don't mind.

[Nsmith13]

Ive been off my meds for a couple of months kept having infections, lve been feeling so much better and I'm really reluctant abt starting a new infusion just don't think the mtx bio etc, are suiting me at all having a bit of a detox !!!!

[wishbone in reply to Nsmith13]

That's good to hear, and long may it continue..........................................................

I just wish that I could manage without meds. Trouble is I'm seriously stuck between a rock and a hard place...if I don't get my RA under control then along with further joint deterioration, which I would put up with, there's an even worse scenario that any increase in inflammation might get into my lungs again, which have already been damaged by RA. If I start taking meds again there's a distinct possibility that I'll get another serious infection due to complications from another chronic condition I have.

Think my best choice, if there is one, is to go with the meds as infections can be treated. If however, I do get another infection then I think that me and meds will be parting company, period as they say in the good ole USA.

[Nsmith13 in reply to wishbone]

It is a difficult choice but I had mine made because of infections never had so many I was forgetting how normal felt but yes I do at moment and I'm enjoying it while I can just one day at a time

[wishbone in reply to Nsmith13]

My reply below is meant for you Nsmith13...think I may have replied to jenna by mistake.

[Nsmith13 in reply to wishbone]

Yes Thankyou I have been offered an infusion of rituximab when things have settled but I'm just enjoying feeling ok even though I know it can soon be a different story

[wishbone]

I was getting recurring UTIs while taking enbrel & mtx. They may well have been one continuous infection, which antibiotics subdued, but never entirely cleared up. Apparently a bug from a UTI managed to access my bloodstream 3 years ago, resulting in septic arthritis in my hip...ouch!! Consultant at the time advised me to stop taking enbrel as he thought it had played a major roll in allowing the bug into my bloodstream.. Went cold turkey for a couple of months, but eventually I could no longer put up with the acute debilitating pain so went back on mtx. It was during my cold turkey period of what must have been highly elevated inflammation levels that my lungs probably suffered serious damage. Within a few weeks of taking mtx I had another UTI, which would not clear up because the e.coli type bug had become resistant. Was admitted to hospital with urosepsis and treated with UVAs. Stopped the methotrexate and been on hydroxy, plus strong pain relief, for the last 20 months and I ain't had a single infection, which pretty much nails immune suppressing meds as the main cause of my infections.

The immunologist I recently saw thinks the new JAK inhibitors will suit me better than other drugs as they only target specific parts of the immune system, so it should be better equipped to fend off infections. Apparently, other meds tend to blanket bomb the immune system making it less effective at fighting infections. Well, that's the theory anyway!..just hope it's correct! If it wasn't for the JAK inhibitors being a new and different class of drug, then I'd take my chances with no meds and possible lung disease.

Apologies for the long post, but hope you find it interesting.