Moving forward: Hi again everyone, I had my... - NRAS

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Moving forward

pennylane profile image
23 Replies

Hi again everyone,

I had my appointment today. After a sob and long chat with my rheumatologist i'll be starting rituximab at the end of the month. A little scared but glad to be moving forward. Any advice you have would be most welcome.

Thanks for all your lovely comments before & support in the lead up. Feeling more positive tonight.

Hope you all have a lovely weekend & the sun shines xxxx

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pennylane
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23 Replies

Great news that you're starting a new drug and hopefully you'll get some much needed relief. It's always scary starting something new (says me who is only on mtx) but fingers crossed for you that your only side effect will be excellent health :-) I'm hoping for sunshine too so that I can get into the greenhouse and sow some seeds x x

pennylane profile image
pennylane in reply to

Thank you, I have everything crossed (joints that will allow anyway!)

Hope for some sunshine & warmth, good for the spirits and your seeds. Enjoy xxx

shirlthegirl profile image
shirlthegirl

I also can't give you any advice, but i do hope it works for you, Good luck XX

pennylane profile image
pennylane in reply toshirlthegirl

Thank you, that's really kind. Take care xxx

pennylane profile image
pennylane

Thank you! Positive thoughts. Take care xx

sylvi profile image
sylvi

I hope this works for you,i am waiting to start cimzia. xxx

pennylane profile image
pennylane in reply tosylvi

Thanks Sylvi, really hope you get started on cimzia soon & it works well for you xxx

beaches3 profile image
beaches3

Hope it is a real benefit to you. I had 2 really successful infusion cycles with a good 4-5 months of relief. As well as improvement in pain and stiffness i felt less fatigue and more energy.

You will feel dizzy and a bit strange after it and sleep pattterns messed up. The big dose of anti histamine makes you dizzy and sleepy, then the steroids make you wakeful!

Good luck with this new treatment. It can be really successful. Unfortunately, i had a bad reaction during my 3rd cycle and cant have it again :(

pennylane profile image
pennylane in reply tobeaches3

Sorry to hear you had a bad reaction after such a positive start. Hope you have something else that is helping now. Thank you so much for sharing your experience. Fear of the unknown is awful so it helps to know what to expect! Take care xxx

cathie profile image
cathie

I've never taken this biologic but I think that it helps usually if you rest afterwards, avoid stress if possible. I hope everything goes well

C

pennylane profile image
pennylane in reply tocathie

Thanks Cathie, I'll try to rest up as much as possible & keep my stress head at arms length! xxx

JoanneMc profile image
JoanneMc

Have you looked into dietary changes? I've been seeing a nutritionist and am loads better. Good luck xx

pennylane profile image
pennylane in reply toJoanneMc

I try hard to eat a healthy diet & due to reflux problems already try the low acidity approach. I read that this can sometimes help with RA. Really interested in the work you are doing with the nutritionist & so so pleased that its helping. Fantastic news & long may it continue!! xxx

mille profile image
mille

Hi, I had my first course of rituximab back in June last year and it has made a huge difference to me, before i got it i was struggling to walk but now i get get around, i think it has been fantastic. The only thing, it can take a while to kick in, in my case it took 4 months before i felt better but some people feel the benefit much quicker. I am going next week for another infusion, that was 10 months since the last one. If you want to ask me anything about it, feel free. Good luck x

pennylane profile image
pennylane in reply tomille

Hi, thank you so much for posting. Your experience with rituximab gives me great hope! I think I'm in a similar position, struggling to walk & get around. Good to know how long it took to take effect with you, the rheumatologist said yesterday the disease was raging so possibly 12 weeks plus to see a difference.

Best of luck with your next infusion, so happy it is working or you xxx

tiger profile image
tiger

I had 3 cycles of Rituximab over a period of about 2.5 yrs, the last one being about 18 months ago. Still take MTX but saw the rheumy in November and he thinks I am in drug induced remission as my symptoms are nearly non-existant. Hope it works well for you.

Wendy xx

pennylane profile image
pennylane in reply totiger

That's brilliant news! It's great to hear its working so well for you. I can't take MTX after a bad reaction to the tablets & injections but fingers crossed it will make a difference. Thanks for sharing such positive results with this drug. Take care xxx

allanah profile image
allanah

I commented on yesterday's blog, good luck

pennylane profile image
pennylane in reply toallanah

Thanks Allanah xxx

Dandan profile image
Dandan

Good luck, I hope it's a massive success and you too can be in remission

Love Karen x

miss profile image
miss

Good luck from me to. Please keep us posted on how you do. xx

JoanneMc profile image
JoanneMc

Hi I think you asked for more details re nutrition approach I am taking, is that right? Got lost getting back into the site and finding you. Let me know if it was indeed you! Joanne

pennylane profile image
pennylane in reply toJoanneMc

Hi Joanne,

Yes, would be really interested in your nutrition approach. Any info would be great.

Thanks for getting in touch x

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