Felt like Giving Up - Update

[3LittleBirds2]

Hi

I posted about 6 weeks ago as I was really at rock bottom and just didn't know where to turn and felt like giving up, I just wanted to say a belated thanks to everyone who reached out to me with advice, support and positive wishes, it was so much appreciated.

After a complaint to PALS I had a call from my Consultant and was prescribed some oral steroids which have helped but I need to increase the dose for a short while as not doing quite enough, still not able to drive etc.

I had not been able to start my new meds Sariulmab due to ongoing lung investigations which was picked up on the route chest X Ray before starting new meds, it was a year after having Rituxumab so I went into a very severe flare. Anyway after 2 CT Scans, bloods, breathing tests and a Bronchoscopy and a very anxious wait I finaliy have a diagnosis. The Bronchoscopy sample grew a bug called Bordertella and my sample is currently at PH England for further testing as I am asymptomatic, i had mentioned to my consultant that we had adopted a very very poorly puppy with kennel cough a few years ago and after discussing me with the micro biologist at their MDT Meeting there could be a link as I was immune suppressed at the time but I didn't even give it a thought I could catch it. Anyway no antibiotics at the moment as no symptoms , the bug is still showing on the recent CT so they will continue to monitor me, I do have some scarring on the lung (Bronchiostatis) as well caused by the RA, which will also be monitored.

I have finally been given the go ahead to start my new meds, so hoping to get them very soon and here's hoping they work as well as Rituxumab did!

Thank you again and for reading xx

[welsh12]

Best of luck

[3LittleBirds2 in reply to welsh12]

Thank you x

[springcross]

It's good to hear that things are now improving and I hope all will be well when you start your new drug and get the treatment for the lung problem - I had no idea that Kennel Cough could be passed on but apparently, cats can get it too and also act as carriers although they never show any symptoms! You must feel so relieved now - good luck to you. x

[3LittleBirds2 in reply to springcross]

Thank you so much. Yes, relieved I can start my medication finally. Yes, the KC Bug can pass to humans especially if immune suppressed it may be a coincendence but we did have a very poorly rescue puppy with it, I didn't give it a thought at the time so I could have had it a while as I had no symptoms I guess I will know more when the further test results come back from PHE but having said that there has been a lot of whooping cough in the community too. I know the VET has always said for me to be wary when the dogs have their KC vaccine too but I have to admit I didn't take much notice. Xx

[springcross in reply to 3LittleBirds2]

I'm pretty sure I wouldn't have taken much notice either to be honest, you just don't think it can pass from dogs to people do you!!

[3LittleBirds2 in reply to springcross]

No, not all but I do now! X

[sylvi]

Sending hugs darling xxxx

[3LittleBirds2 in reply to sylvi]

Thank you Sylvi, I hope you and Bob are doing better too xxxx

[Fruitandnutcase]

Glad we cheered you up and that things are looking up for you ( the dog too) Who would have thought you could be affected by the KC. Good luck with your new meds 😊

[3LittleBirds2 in reply to Fruitandnutcase]

I had been vaguely aware of it from the Vet but have to admit hadn't taken much notice , it may just be a huge coincidence , all very odd as I had no symptoms ( no barking) but seriously none, no cough etc the first I knew was when I shadow showed up on my routine chest x ray. Thank you x

[Runrig01]

So glad you’ve got answers and can start your meds now. Fingers crossed they settle things down for you 🤞🤗

[3LittleBirds2 in reply to Runrig01]

Thank you and for your support x

[Haz58]

I am soooo pleased you are finally getting somewhere! You have been to that lowest point and now hopefully the only way is up. It makes such a difference when you feel you are being listened to and action is being taken. Even if the answers are not what you really wanted to hear at least you know.

This group is amazing and so very supportive, I know that from experience, the lovely people on here have been a godsend to me.

Here's a bunch of flowers and hugs for you 3littlebirds. 💐 🤗🤗🤗Xx

[3LittleBirds2 in reply to Haz58]

Hi Haz, Thank you for the flowers! I hope you are doing ok as well and that your teeth are behaving?! Yes, it was probably my lowest point since I have been diagnosed , still not back at the top yet and may not be for a while but at least things are moving in the right direction and meds being delivered next week 🎉🎉 Your right about this group as everyone gets it and the difficulties we face especially with what can be an invisible and misunderstood disease . Xx

[Neonkittie17]

Hi 3LB and m sorry you’ve had all this trouble. I have only just been back on this board. Didn’t see how low you felt and hardly surprising.🩷 I’m glad you got in touch with PALS. That you were listened to. I was given a lot of info by my rheumy and her registrar re zoonotic diseases and dog vaccinations as I refused to go to visit my SIL with a biting puppy a few years ago, about to have its vaccinations and was told by my rheumy that he’d be probably shedding those for days, maybe a week or so. So I said no to a visit where puppy could be licking and breathing all over me and in usual style SIL got nasty but my well-being came/comes before her unruly dog, poor thing. So I’m aware of a lot of that. Poor Pups, it’s not their fault.

I hope you feel improved and can start your new biologic soon. I didn’t know a Bordertella case could last for so long in humans. If you met puppy at the time of your height of immunosuppression and on Rtx then chances are you’d got less resistance to catching what viruses/Illness he harboured.

Glad you had no barking 😝 or the urge to lift your leg at trees! Seriously, there are many things an immunocompromised person can get from dogs and cats. Most of us don’t but as said, I was advised by two rheumy staff to avoid for at least a week to go near a dog that’s shedding parts of the vaccine. Hope you soon feel improved and Sarilumab works great for you. 🩷

[3LittleBirds2 in reply to Neonkittie17]

Hi NK, lovely to hear from you 😊 and hope you are doing well? Yes, it's been a very tough time, the lowest since my diagnosis but my Meds are being delivered next week..thank goodness, I can't fault the Respiratory team, who do what they say and ring when they say they will, but sadly it took a complaint to PALS to hear from my RA Consultant after numerous requests!

Yes, the Bordertella thing is odd, I had explained about the puppy to my Consultant and she discussed it with MicroBiology who said likely, I am still waiting for the results to come back from PH England but they think it's likely to still be the same. We adopted him in 2018 a rescue from a puppy farm who was ill with kennel cough I didn't give it a thought at the time but would have been on Ritux then. Humans can catch it if immune suppressed and be symptom free so I may have had it since then I hadn't had a Chest X-Ray since about 2016 I think, it is I guess dormant at the moment but the risk it could flare up so they will monitor me. No barking but have urge to lift my leg at trees..if I could 😂

Thank you fit your good wishes and I hope you are doing well, xxx💚

Have

[HeadInASpin]

Pleased you’ve got some answers at least and can now start treatment. Best of luck, hope things improve for you soon x

[3LittleBirds2 in reply to HeadInASpin]

Thank you so much xx

[stbernhard]

It's good to know what's going on. Good luck with your new medication.

[3LittleBirds2 in reply to stbernhard]

Thank you 😊

[Madmusiclover]

that’s great news. I too had a hold up on drugs pending investigations. Better safe than sorry I guess!

[3LittleBirds2 in reply to Madmusiclover]

Thank you! Yes, you're right better safe than sorry and it's good to get these investigations of course but just extra tough when you go into a severe flare.

[Jackie1947]

Good luck going forward

[3LittleBirds2 in reply to Jackie1947]

Thank you 😊

[janmary]

Well done on getting NHS action stations going and thanks for the interesting post. Just what this site is so good for -,

[3LittleBirds2 in reply to janmary]

Thank you 😊

[Bella59]

Hope you will feel better soon.

[3LittleBirds2 in reply to Bella59]

Thank you x

[Gjbrose]

lovely to hear that things have turned around for you and sending you lots of hugs 🤗

[3LittleBirds2 in reply to Gjbrose]

Thank you! 😊

[Oshgosh]

I hope all goes well.

[3LittleBirds2 in reply to Oshgosh]

Thank you 😊

[Green230461]

A success then! I will quote from a favourite spoof film Galaxy Quest- NEVER GIVE UP NEVER SURRENDER!

Truly bonkers film but a special thought for us. I think we are RA Warriors. I know I sound crazy but sometimes it is the only way to meet another painful day. As for lungs they are strong blighters and recover so keep going 🌈👍🤩

[3LittleBirds2 in reply to Green230461]

I love this and I am going to remember this quote 😃 You're right we are all Warriors, I will always remember what a physio said to me once, that all her RA patients are a stoic lot, they all just get on with it and don't complain, this is so true but at times we do need to reach out and this is what is so good about this forum. Not crazy at all and I hope you're not in to much pain , thank you xx😊

[Happy5]

🤗

[MerielPB]

That's good, a lot more positive and at least you can see a way forward now. Good luck.

[3LittleBirds2 in reply to MerielPB]

Thank you x

[wilbertjellyfish]

Delightful your feeling more positive. It's a rollercoaster of emotions. Bordatella more than likely from your dog, there is also a low risk from kennel cough vaccines as they are live.

Hope the new stuff works

[3LittleBirds2 in reply to wilbertjellyfish]

Thank you for your good wishes! Yes, who would have thought..ah that is good to know as they can't go to a dog sitter etc without them being up to date I will just more aware from now on xx

[wilbertjellyfish]

Yes, tell the vet and a nurse can hold them. then don't let them near your face for about 10 days after. Having Said that I am a vet and have been exposed loads so who knows

[3LittleBirds2 in reply to wilbertjellyfish]

My husband usually takes them as the "poorly" puppy is now a huge 6 year old and he is too strong for me to hold now on my own luckily he's fine with the Vet. One Vet did mention it once about me being cautious but I didn't take much notice 😬 I will now of course and thank you for your advice x