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.
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Leics
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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.
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.
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.
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!
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 🤬
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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