Newly diagnosed

[Marley3562]

Hi. My name is Marlene and I have found a lot of comfort reading everyone’s story on this forum.
i was originally diagnosed with GCA in July of 2017. I was on high doses of prednisone and later on, methotrexate was added. Whenever my dr tried to wean me off prednisone, I would flare. My original rheumatologist just seemed disappointed in my lack of getting better.
i went for a 2nd opinion @ Jefferson Hospital Rheumatology in Philadelphia. After one visit she felt I may have GPA. Blood tests ordered and yes, I have a confirmed diagnosis. That both made me happy and sad. Finally...a true diagnosis. I am having my second infusion of Rutixumab tomorrow. Any advice on going through the next few doses of Ritixumab would be appreciated

Marlene

[gilders]

Welcome Marlene,
Glad to hear you got a confirmed diagnosis - that's over half the battle won.
As for advice on your next rounds of Rituximab. Well, it seems well tolerated by patients. Most of the side effects I get are from the I.V. steroids and antihistamines.
I did find my rheumatism worse before I was due my next dose of RTX, which is unusual as RTX is used for rheumatoid arthritis.

Don't forget to be extra careful with avoiding germs, viruses and bacteria now that you're immunosuppressed. Main thing to consider is never touch anything that is going to go in your mouth unless you've sanitized your hands. And don't touch your face, eyes or nose unless your hands are sanitized. Get a small clip on hand sanitizer and you should be safe.

[Pete]

Hi Marlene, and welcome to the “club”. Gilders is correct in stating that most people tolerate rituximab pretty well. My usual dose (1 gram given once a year) comes with a dose of solumedrol, Benadryl, and Tylenol. The night of the infusion, I generally don’t sleep very well. That’s probably due to a low activity level and the steroids. The next day, i’m A little tired, but it doesn’t keep me from doing normal activities (I’m retired, so every day is Saturday for me.). I doubt that a rituximab treatment would prevent me from going to work in an office.

[Masha]

Hi Marley, Welcome, we are here to share and help. I too, had been misdiagnosed for years, so when I finally found the right doctor and he ran all the tests and confirmed GPA, I felt vindicated. No one could have had as many lengthy sinus infections as I did.
My Rituxan infusions keep me awake because of the steroid. Also, the first couple in the series of four give me some aches and pains. Make sure you have a healthy breakfast beforehand, because the steroids are hard on the stomach. Also my husband would bring me a cup of soup during the infusion. Take a book, kindle with you. I can’t sleep so I like to keep some busy work with me. For the first few in the series of four I have aches and pains, nothing debilitating, but I don’t feel like going out or doing major work. I will be going in for my third series of four this fall. Each series gets easier, and eventually you will feel stronger.
one other thing the nurses told me. Drink plenty of water for three days before infusion. It makes it easier for them to put the needle in. I have never experienced a problem.
Masha

[Marley3562]

Thank you for responding and for the advice. I just got home from my 2nd infusion. I ate breakfast before this one and I think helped some. I am having terrible headaches so dr has increased my prednisone back up to 60mg. My biggest problem right now is headaches and my hair/scalp hurt. Also, hair is thinning.
thank you for response
marlene

[BenHornsby]

Welcome ;-)

Good that you have the correct diagnosis!

Rituximab I find ok, i get heavy lead legs for a day or two after but have got used to planning round it. I have been on it for 5 years and have 2 x 1000mg infusions two weeks apart every 4 months, but looking to see if I can go to every 3 months as 4 months is now starting to become flare area.

I am on 60mg pred with a flare at the moment and suffering with lots of spots in my hair, but that's the pred I am told and suffer not hair loss.

Can't mention enough about the fluid intake before/during and after treatments, i normaly try and double my water i drink a couple of days before and after the infusions. As mentioned makes it easy for them to pop the needle in, but more so the body being able to have thw food and water to work through the treatments.

Good luck and shout if you need too!

Ben

Sent from my SM-G930F using Tapatalk

[Alysia]

Too much water makes me headaches. Also too little. So I think it's better to drink enough.

Welcome to the family, Marlene. I get 2 pills of paracetamol before the Rtx IV to prevent pains. When once they gave me only one pill, I got headaches.

I also get headaches if I try to reduce my daily pred.

Rtx is a wonderful medicine which can stop the wg beast's activity with not too much side effects.

As for hair falling - I take multi vitamin Roots
https://www.vitaminglobal.com/roots-hr-formula-of-hair-nutrients-180-tablets-altman-p-658-c-7_31.html#.W1nytJ8Yo0M
and use good shampoo.

[richard052018]

Welcome to the group. While I'm a bit of a newbie myself, my only recommendations to you are related to your high Pred dosage:


--Check your blood sugar daily. Get Primary Care to prescribe you glucose monitoring strips if you haven't already. The Pred can bring on high blood sugar quickly.


--Go see an eye doctor as soon as possible and get your ocular pressure checked. I've read of many GPA patients having Glaucoma/Optic Nerve issues, and while the disease gets the blame for many of these issues, I'd bet a lot of it is related to the Pred. The eye doctors have drops that can lower the ocular pressure and keep your vision stable. Also use lubricating drops multiple times a day and consider purchasing Ocusoft lid scrubs (I've become addicted to them). You don't want to play around with your eyes.


All the best,
Richard

[Alysia]

Welcome to the group. While I'm a bit of a newbie myself, my only recommendations to you are related to your high Pred dosage:


--Check your blood sugar daily. Get Primary Care to prescribe you glucose monitoring strips if you haven't already. The Pred can bring on high blood sugar quickly.


--Go see an eye doctor as soon as possible and get your ocular pressure checked. I've read of many GPA patients having Glaucoma/Optic Nerve issues, and while the disease gets the blame for many of these issues, I'd bet a lot of it is related to the Pred. The eye doctors have drops that can lower the ocular pressure and keep your vision stable. Also use lubricating drops multiple times a day and consider purchasing Ocusoft lid scrubs (I've become addicted to them). You don't want to play around with your eyes.


All the best,
Richard

I use refresh eye drops in one used ampules. Make sure yours' dont contain perservatives.

[Marley3562]

Thank you for the advice.

[Marley3562]

Richard,

thank you you very much for mentioning about keeping up with eye care.
last time I was atete dr my eye pressures were up and that was before going up on prednisone dose. My vision is fuzzy since last Ritixumab dose.
Marlene

[richard052018]

Richard,

thank you you very much for mentioning about keeping up with eye care.
last time I was atete dr my eye pressures were up and that was before going up on prednisone dose. My vision is fuzzy since last Ritixumab dose.
Marlene

No Problem. My eye doctor wants to see me 4 times a year, at a minimum. Don't fool around with the eyes.

A good article on GPA and the eyes:

https://www.reviewofoptometry.com/article/ocular-hypertension-in-wegeners-granulomatosis

[drz]

No Problem. My eye doctor wants to see me 4 times a year, at a minimum. Don't fool around with the eyes.

A good article on GPA and the eyes:

https://www.reviewofoptometry.com/article/ocular-hypertension-in-wegeners-granulomatosis

I don't think it is as rare as the article suggests. But article confirms that Wegs can affect almost any part of your body. Some people have lost vsion from it. And hearing. And other things.

[Marley3562]

Hi...I have had my eye dr appointment and now have a new question.
pressure in both eyes are slightly elevated, but maintained from previous appointment.
my eye dr, did discover an “eye freckle”that wasn’t there 3 months ago. She said the freckle is associated with retina and that sometimes it is seen in MS patients.
Anyone else have eye involvement??
marlene

[Marley3562]

Hi...I have a question concerning completion of first round of Ritixumab infusions
i finished 4 rounds on Ritixumab infusions 10days ago. I got through the infusions pretty wel - not terrible side effects. Now, I am absolutely exhausted. Can barely walk up 6 steps....has anyone else had this happen after compeletion of Ritixumab therapy. I have a message into my dr, but am not scheduled to see her until October
Thanks,

Marlene

[Masha]

I have not experienced that. You are doing the right thing by contacting your doctor.
Masha