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Autoimmune arthritis vs bronchiectasis treatments.

Gloryvine profile image
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Update on rheumatologist appointment: My rheumatologist has a couple of other patients who have bronchiectasis and came up with a new treatment for me to consider. She wants me off the Brenzys (a version of Embrel) and on daily Rinvoq tablets. It's a Janus Kinase (JAK) inhibitor and the benefit is that it exits the body within 24 hours, unlike other biologics, which means can be out of the system quickly if an exacerbation occurs. I'm going to look into these JAK meds and see how people find them. Just curious if anyone on the site has experience with a JAK? One possible side effect is shingles but I will get the shingles vaccine before starting the new tablets. Thanks in advance and what a lovely community this is!

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Gloryvine
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Izb1 profile image
Izb1

I dont want to worry you but my friend went onto a jak inhibitor called Baricitinib for her rheumatoid arthritis as did I. She had already her shingles vaccine before going onto these but got shingles in her eye which sadly went into her brain and she died a few months after. I came off them straight away when she first got shingles and wont go back on them now, although they have said it is very rare and they would help my r.a. I am sure these have helped thousands of people with no ill effects but feel that people need to be aware of the possible side effects x

Gloryvine profile image
Gloryvine in reply to Izb1

Thanks Izb1. The shingles issue really put me off immediately because I have a tendency towards them, vaccine or no. I'm also concerned about other side effects. I could stay on my current treatment, Etanercept, which seems to cause sinus/lung issues to flare but I can go on and off it which means I'm a bit in control of the situation. Beyond the Jak inhibitors, there isn't much left for me. I've developed antibodies to all the other treatments over the years. The other reason I almost certainly won't take the Jak, is the stomach side effects since I already have coeliac, IBS and acid reflux (the joys of autoimmune disease!). Thanks for your honesty. I think I'm going to re-evaluate my pain relief, keep taking the Etanercept at larger intervals and see how it goes. I have three months to decide but I'm pretty clear which way I will go... Many thanks.

Izb1 profile image
Izb1 in reply to Gloryvine

They seem to be pushing these drugs in rheumatology at the moment. I am sure they work very well for r.a. and the like but the doctors dont seem to take into account other ailments. My rheumy doctor is lovely and at least talks to me and makes suggestions. She did talk to me about Abatacept as she thinks it will be ok having bronchiectasis. I said I would wait until the methotrexate doesnt work anymore and then consider moving over. It took me years actually going onto methotrexate reading all the side effects but the pain won lol. It is a personal decision and it has to be right for you, so whatever you decide I hope it works well x

Gloryvine profile image
Gloryvine in reply to Izb1

Hi Izb1, Thanks so much. I'm glad you have a treatment that works for you. My rheumatologist is lovely and my case is pretty complicated. I had serious side effects from methotrexate and the other usual drugs early on. I have been very lucky to have treatment that works for about fifteen years. Without a treatment I would have a very poor quality of life and of course inflammation in the body is dangerous. At the very least I can keep on with the current biologic but use it less. Rheumatologist did say it was a shame it didn't come in a lower dose and that had me thinking. I'm motivated to find a solution! x

eleanordigby profile image
eleanordigby

It must be very disappointing to have this potential treatment dangled enticingly but feel unable to take it up. Having had shingles twice, I understand your reluctance to risk it again, quite aside from your gut problems. At least you’ve got a few months to mull it all over and maybe they can use that time to get your pain under better control x

Gloryvine profile image
Gloryvine in reply to eleanordigby

Thanks eleanordigby. The biologic medications always look scary (like "poison" because their job is to reduce the immune system and persuade the body to stop attacking joints etc) and I've been on another terrifying-sounding drug for years with only minor issues, but like you, I really don't want shingles again - they are potentially quite dangerous and I must attend to my lungs at the same time. I do have time to think it all over and find some answers. I appreciate the support and sympathy. x

helenlw7 profile image
helenlw7

I have RA, bronchiecstasis and uncontrolled asthma. I was on biologics until last year when my second one didn’t work. I started Baricitinib, also a JAK inhibitor, in February and it started working quite quickly and continues to do so. Mt rheumatologist said that if it works for me, it won’t stop working. However the biggest thing for me is the use of antibiotics as a prophylactic. I’ve been taking them for the last 6 years and have only had one chest infection in that time - when my lung consultant suggested I take a break from the antibiotic in the summer months because’people don’t get chest infections in the summer!’

Gloryvine profile image
Gloryvine in reply to helenlw7

Hi helenlw7, thanks for commenting. I've been offered Rinvok and I think I probably won't try it because it's a tablet (they tend to upset me, with my gut issues) and I'm susceptible to shingles. I'm interested that you have been on biologics and are still able to control the bronchiectasis. My biologic, Brenzys (etanercept) is still working for me, it just maybe works a little too well. My rheumatologist said what a shame they don't do 25 mg rather than 50 mg doses. Her reason for switching is that Rinvok is taken daily, clears the system quickly and therefore can be stopped quickly in case of infection. At the moment I'm pacing the Brenzys shots about 12 days apart rather than 7-10 days and I have finally stopped coughing (had ezithromycin for three days about three weeks ago). Today my GP and I agreed that the AS (similar to Rheumatoid) must be treated (or no quality of life!). I like your approach of treating both conditions at the same time. I hope I will be able to do this... PS. Plenty of people get chest infections in Summer, surely?

helenlw7 profile image
helenlw7 in reply to Gloryvine

I was on Enbrel (etanercept) successfully for 10 years apart from a very brief period when it was changed to the bio similar Benepali, which set me back about 6 months. When the Enbrel stopped working I was put on Abatacept but that didn’t work at all! The antibiotic I’m on is Azithromycin 500mg 3 times a week. At the higher dose it is also supposed to help asthma sufferers.

Gloryvine profile image
Gloryvine in reply to helenlw7

I've been on etanercept for about ten years, helenlw7, and since I "failed" all the other Biologics within a year or so, I'm reluctant to change it. I've had Azithromycin (oops, I misspelled it before) several times so far this year and it does seem to stop the lung infections quickly. I'm considered "mild" so far and my new respiratory specialist hasn't suggested regular antibiotic therapy but my GP is good, has two other patients with bronchiectasis and I'm sure will do the right thing if it's needed. You've reassured me, thanks, that I can cope with both conditions.

Metal-legs profile image
Metal-legs

I have rheumatoid and bronchiectasis. I take tocilizumab for the rheumatoid which works really well and on a nebuliser antibiotic twice daily, which has prevented exacerbations. It's really difficult trying to find a balance. Jaks sound good for the rheumatoid but there does seem to be alot of infection issues. Hope you can find the best way forward.

Gloryvine profile image
Gloryvine in reply to Metal-legs

Thanks Metal-legs, sounds like you have a good balance. I'm going to try having my current biologic every ten days plus, rather than weekly, which might help (suggested previously by my rheumie). I'm a bit reluctant to switch to the Jak while there is some benefit from the current medication -as long as I don't have too many exacerbations...

Metal-legs profile image
Metal-legs

That sounds a really good plan. I think you are right sticking with your current medication especially if it's working well. If you keep getting exacerbations could you ask about a nebuliser? It's worked so well for me. All the very best.

Gloryvine profile image
Gloryvine in reply to Metal-legs

I definitely will ask about a nebuliser, Metal-legs. My GP is great and I'm sure he will be on board with whatever will help. Many thanks for your input and all the best to you as well...

Metal-legs profile image
Metal-legs

That's a bonus having a good GP. Sending you good thoughts too

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