Wow some great news ! How did I ever cope without a f... - NRAS

NRAS
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Wow some great news ! How did I ever cope without a fab consultant.

Leics
Leics
23 Replies

Hi everyone, I hope you’re not all suffering atm. Well I just had to share my good news. I went to see my consultant rheumatologist this morning, prearranged appointment I am seeing him every 4-6 weeks currently. So I’m in the grip of a terrible flare can’t tell you the pain that I’m in but I bet you’ve all been there at some point. I have RA and my immune system is severely compromised I am vey difficult to treat because of previous bowel cancer in my 30’s now in my early 50’s. I am allergic to most antibiotics but fine with penicillin.

I was started on baracitinib (Olumiant) 2mg in October last year but the antibiotics I was given to help keep infections to a minimum didn’t agree with me big time. So no treatment since then after only 8 days of olumiant (so disappointed) but today doc has decided with loads of discussions with immunology that olumiant can begin again with penicillin V as a immune system prop up. Also doubled steroids as I’m struggling so badly atm I’ve only been on a 5mg dose for a month so only up to 10mg. Fingers crossed I don’t crash and burn this time but I’m so hopeful to take control and maybe get a new lease of life.

Originally my lovely consultant wanted me to have immunoglobulin therapy but there is such a national shortage that’s not going to happen but to be quite honest I don’t want to have to go to hospital 5 days on the trot every month to sit on a drip for hours anyway lol.

So wish me luck 😃 new life and taking back control starts today.

23 Replies
oldestnewest
allanah

Fantastic news. So glad for you 🤗🤗

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nomoreheels

Wishing you not just luck but lots of it. You're due a break so I really hope this combination works for you. 😊

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GranAmie

wishing you much luck ... and more optimism and determination too xxx

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Leics

Thanks everyone always been a fighter will be kicking ass soon. Instead of my joint pain kicking my ass 😃

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AgedCrone

Hi Leics.....Hope it all goes to plan. I think you have the right optimistic attitude that will go a long way to making sure it does.

Taking control & looking forward is the way to go.

AC

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Leics
Leics
in reply to AgedCrone

Bless you thanks. I’ve never been a quitter too stubborn for my own good sometimes 🤪

1 like
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AgedCrone
AgedCrone
in reply to Leics

Take charge, never explain & never complain has worked well for me for years, ...you carry on being stubborn.

1 like
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Hidden
Hidden

So pleased for you, wishing you lots of luck 🍀

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hatshepsut

Great news......fingers crossed the new regime works!

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davannh

I have immunoglobulin therapy. I do it at home and have done so for over 15 years!

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Leics
Leics
in reply to davannh

Oh that’s interesting will have to ask about it if it ever becomes available to me. Think that it’s just the funding and national shortage in my case. Rheumy has tried VERY hard to sort it for me coz my immune system is in a terrible state never to recover has been for about 8 years. But I suppose as I’m managing to keep pretty healthy with not too many infections it’s probably the way to go for me for a while. I’m sure I’d manage to do the therapy at home too it’s nice to know that you seem to be ok with it and have been for so many years.

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NeonkittyUK

I do indeed wish you loads of luck and keep battling on and you will get there. x

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Pam-51

Hello,

Sorry you are having problems with your immune system. I have posted on here about my own similar problem, hypogammaglobulinaemia, induced by Rituximab therapy. You are the first person whom I have come across with the same issue on this site. At first I was treated with IV infusions in hospital but this was only occasional when my IgG levels were in my boots, so continued to get repeated infections.

Last June I was referred to Immunology and am now receiving effective treatment. Rather than IV therapy I now have subcutaneous infusions which my husband and I do at home once a week. This is now the preferred treatment for people with this problem. Apparently, the problem is escalating due to the use of biologic therapies to treat not only RA but many other diseases.

The treatment takes about an hour once a week and involves slowly infusing the immunoglobulins into my stomach. A bit uncomfortable but since starting the treatment I have been infection free and my immunoglobulin levels are within the normal range. I was unaware that immunoglobulins were in short supply, certainly hoping my drugs continue to be delivered.

Hope your flare is resolved soon. Just wanted you to know about the home therapy that is available rather than the three weekly treatments of IV therapy in hospital. Maybe at some point in the future you will be considered for this treatment which has proved so effective for me. Good luck.

Best wishes Pam

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Leics
Leics
in reply to Pam-51

Wow thanks for that yeah mine was rituximab too I wasn’t monitored properly and got to the point of no return. I have panhypogammaglobulaemia too have looked at my results and all Igg’s are in the red zone. It’s nice to hear someone that is having immuno. therapy and doing well hopefully because you’re already on treatment you’ll be ok with supplies. Think mine is down to the fact that somehow I’m staying healthy only about 1 infection a year.

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Pam-51
Pam-51
in reply to Leics

I too wasn’t monitored properly. In the end I actually diagnosed myself in 2017 after five horrendous years of repeated infections, including shingles five times , campylobacter twice and lots of chest infections. When I told my Rheumatologist what I suspected he checked my IgG results and found that they had been low since 2012. It makes you wonder how many other people have been missed!

Keep healthy.

Regards Pam

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Leics
Leics
in reply to Pam-51

Yeah it does make you think. I wondered why I was having blood tests between infusions if no one was looking at the results. I ended up being seen by haematology and having a lumber puncture to check it wasn’t something else going on. Luckily if you can call it that it was fine but still had to stop them from just dismissing me without a referral to immunology. Hey ho I’ve now got a great rheumy consultant who’s on my case big time and doesn’t consider no treatment at all for my RA for about 6 years is acceptable, thank god it hasn’t been easy 🤬

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Lulumae

Glad to hear you are feeling so positive, it definitely helps. Hope it all works for you.

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BonnieT

Good luck with the new regime and your new outlook. Hugs!

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Happygranny1958

Best of luck, staying positive is a must for us. X

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Pam-51

Best of luck. It so helps if you have confidence in your consultant. Hope you get the best treatment from now on.

Pam

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Leics

Yeah it would be nice if everyone had a great rheumy team my previous consultant worked half a day a week because he was due to retire. Everyone else I saw when my appointment wasn’t cancelled said I needed to see my consultant urgently and that never happened. But onward and upwards 6 years of hell is hopefully over I’m sooo going to do my utmost to get a reasonable pain free life back.

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Mmrr

Good news and I'm really pleased to hear that you have a fabby consultant , it makes su h a difference.

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Shelly1969

Good for you head up x

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