Please help...

[tashacapes]

Good afternoon,

My name is Natasha Capel. I am 28years old from Bristol in England. I was diagnosed with MCTD when I was 13. The disease was managed well by medication such as azathioprine until 2years ago when I was also diagnosed with lupus. Since then I have been in a lupus flare with my rheumatologists struggling to get the condition under control. I now have MCTD, lupus, osphagitis, hiatus hernia, scleritis and intercranial hypertension. I am still on the following meds - steroids, omeprazole, ranitidine, acetazolamide, folic acid and now inject methotrexate 15mg once weekly. I have just had my 3rd course of rutiximab on Tuesday and have been bed bound since with extreme fatigue, blinding headaches and a sore throat and ears.

I am at the end of my tether and am concerned this is now my life. I haven't worked full time in nearly 2years. I want children and to know if I will ever lead a relatively normal life or if this is it.

I would really appreciate some information from you as to my options if you can please help.

Thanks in advance.

Natasha Capel

[friars126]

Hi Natasha,

That is a lot to be dealing with and with such a complex mix, I'm not surprised it is taking time to find out what will work best for you. As many people on here will tell you, little is still known about Lupus and everybody is different when it comes to their symptoms but also their responses to medications. 2 years in the Lupus world feels like a lifetime when you are suffering but for specialists, their hands are tied by giving meds time to work etc. It sounds as if your rheumatologist is committed to trying to help. Is that how it feels? It is a horrible illness and 2 years is a long flare, I really feel for you.

Friars xx

[SjogiBear]

Hi Natasha

Goodness me - this horrid disease is really putting you through the mill isn't it! It must feel as though it is all never ending at the moment, especially with all the medication that you are on.

I was wondering what level of support you are getting in Bristol? Do you have a rheumatology nurse who you can turn to for asking questions? I was wondering if there might be some support group locally where you might find people who have been through something similar?

I am a little bit far from you but am also in the south west area (Swindon) - I know the Royal National Hospital for Rheumatic Diseases in Bath run a monthly support group westernlupus.org.uk/upcomin... and I have also found another Bath lady who has set up her own lupus group and has a Facebook page - the article about her is here bathchronicle.co.uk/lupus-d... She only set it up at the end of last year so hopefully it's all still current.

Everybody does seem to be different in the way their body deals with lupus but I have found it an enormous help just to connect with other people who at least understand. I was very ill in my mid and late teens and not through my 20s like you - my parents were told I may not survive and if I did I wouldn't have children. I'm now 50 and have two children. It's not been easy obviously but it shows that we never know what lies round the corner!

When our bodies are under a physical onslaught our minds suffer too and it's very easy to slip into a constant low mood or even depression. It might help to speak to your medical team about this as perhaps they can help in some way. I have done various courses with what was Lift Psychology in Swindon and I know there is something similar in Bristol so that might be worth looking at too bristolmind.org.uk/resource...

I hope this helps a bit anyway and do feel free to message me through Healthunlocked if you want to. I'm sorry I can't offer any complete answer to you but I guess you know we can't do that.

Thinking of you

Terrix

[Myncare]

Hi Natasha,

How are you now? Hope things are getting better. I can feel for you and know what you have been through.

I did not see any feedback on the forums about Rutiximab results, if you do not mind please share your experience.

Best wishes.