First Rituximab Infusion

[Maureenpearl]

On Wednesday I was given the first of two Rituximab infusion after waiting over two years for the funding for this drug.

I went into my local hospital Rheumatology Day Unit at 9am and after I was admitted and given a hot drink I was first given an infusion of Steroid to help combat any infections and then Paracetamol tablets and Piriton (Antihistamine) to help with any reaction such as itching. Then I was given the Rituximab via a drip which took about four hours.

After taking the Piriton I went to sleep and had to be woken up every fifteen minutes for my blood pressure, temperature and oxygen saturation levels to be taken. Piriton the antihistamine always makes me sleepy and so I found it very difficult not to sleep.

Once the infusion had finished I was discharged and I left after about thirty minutes still feeling tired and sleepy and very light headed.

Today Friday I am very tired and my body feels as if I have been working out at the gym. So rest, rest and more rest is the order of the day for me.

Thanks to everyone for your support whilst I was waiting for the funding for this drug. I will be having a Lung Function Test next week and will be seeing my consultant a week after the next infusion so I am praying for some improvements i.e. my lungs (Pulmonary Fibrosis), pain in joints and brain fog.

Lots of love

Maureen xx

[Purpletop]

That's great news, fingers crossed that it will soon start to make a difference, well done.

[Maureenpearl in reply to Purpletop]

Thanks Purpletop, I'm praying it will make a difference and I will be able to get rid of the ambulatory oxygen (my shadow) 😎 xx

[misty14]

Hi Maureenpearl

Hope you feel better today and the Rituximab works it's magic. X

[Maureenpearl in reply to misty14]

Thanks xx

[Hidden]

Best wishes that all goes well for you and your health will improve,will remember you in my prayers,gentle hugs xxx

[Maureenpearl in reply to Hidden]

Yes please continue to pray for me and all the others on this site. God bless xx

[salva76]

We hope it works for you, please keep in contact to us for collecting information about rituximab and improvements..

I got a foundation about antiphosphoalipid illness or huges syndrome in spain and i am interested any drug could be improvements in our quality of lifes...

If you want to contact by private the mail is [e-mail]

Thanks

[Maureenpearl]

I will keep you informed as to improvements of my condition with the use of this drug xx

[DD22 in reply to Maureenpearl]

Hi Maureen hope your having a better day today.

Fingers cross that the treatment makes your life better. Take care. X

[Maureenpearl in reply to DD22]

It's now midday and I'm not feeling too good but I realise that the drug is killing off my B cells so I have to expect some side effects.

[Maureenpearl in reply to Maureenpearl]

Sorry I meant to say that's for your concerns and best regards xxx😊

[EOLHPC]

GRRRRREAT❗️❗️❗️❗️❗️Well done maureen👏👌👍🍀!!!!! Hope your holiday was happy in all ways. Please do keep us up to date on how things go XO

[Maureenpearl]

I'm still feeling very tired and my body feels as if I was lifting weights.

I had a really great holiday, the ship was brand new all high tech and we visited Spain, Portugal and the Canary Islands.

Hope your having a stress/ pain free time. 💐xox

[EllieB4]

Hiya Maureen,

I hope you are feeling better today! I have been having Rituximab treatment for one and a half years now and am due to have my fourth infusion next month!

I feel similar to you during and after but it is the only thing so far to keep my disease at bay! Also had to fight and wait getting progressively worse before the hospital trust would allow the treatment!

I wish you well and hope your condition improves!

Elinor, a Lupus friend xXx

Ps I am currently working on a website targeted at Lupus suffers and their family and friends! I want to give people a viewpoint from a patient living with the illness! It is a work in progress but you are welcome to stop by and have a read! It's howtobeanexpertlupuspatient...

[Maureenpearl in reply to EllieB4]

Thank you for your reply. Today I am feeling very tired and had awful back pain during the night.

I am only scheduled for one more infusion next week and then I will be seeing the consultant the week after so he will let me know if the fundings will extend to more of this drug.

I have looked at your website and left a comment.

All the best, take care

Maureen xx

[Princerogers777]

Hope all is well, i may get on this interstitial lung disease due to the lupus, thos or benlysta, how has it been so far?

[Maureenpearl in reply to Princerogers777]

I still diagnosed with Pulmonary Fibrosis due to lupus and i'm given Rituxamab about every six months.

[Princerogers777 in reply to Maureenpearl]

Is that how often the unfusions are? Well i hope its working. Ill have to ask my pulmonologist what he thinks i should take . If the insurance approves this rituximab for lupus or not , i dont wanna go thru 4 hour infusions ughhh i get anxiety attacks itll scare me. But if its the best treatment ill have to i guess, it works faster too than benlysta.

[Maureenpearl in reply to Princerogers777]

I am not give the infusion for lupus but for the Pulmonary Fibrosis to try and stop the inflammation that is damaging my lungs.

I didn't lie in a bed for the infusion but sit in a chair and I went to the toilet a few times and other patient was in the ward with me. We all talk when not asleep including the nurses so hopefully if you are approved for the drug you will have others with you and you will want to sleep whilst there so not much time to be fearful.

Praying the right treatment will be sorted approved by the insurance company and given soon.

[Princerogers777 in reply to Maureenpearl]

Yes well since it is caused by the lupus i would be givrn the treatment for the same reason, control the lupus control the lung disease... see what pulmonologist says on the 17th interstitial is scarring and cant take that away unfortunately, jus want to stop progression

Good luck my dear and thank u for sharing. Soft hugs