R/A PMR to Vasculitis: Positive update 11months into (Rituximab intrusion) treatment.

[Sonofjimmy]

Hi All, long time no post sorry!!

Quick update on my farther who turns 70 next week and he is in a position to enjoy it, in the best way he knows how to PARTY with the family (Miracle considering were he was 12 months ago)

As stated in the title he is now into his 11 month of Rituximab treatment. He has had two sessions of intrusion, one at the start and one after 6 months which he was desperate for (Due one next month but not struggling as he did with the first). He has now dropped to 9mlg steroid which is a 3 year low without any impact from 10. His life has changed with the Neuropathy affecting his feet and normal walking, but he is still mobile, just a little slower.

Its now over two years since our original plea for help on this magic forum and I can’t explain how much all your support and vital guidance, helped us take on the miss diagnosis until his condition was correctly identified and treated

Anyway, I will leave it there

Thanks again

Ryan

& Family

[HeronNS]

Thank you so much for letting us know. It's wonderful your father is able to enjoy life again. He is so lucky to have you in his corner!

[PMRfacebook]

thank you for sharing such positive news - enjoy the party

[Hidden]

That is brilliant. He is lucky to have a family that fought so hard. Thanks for letting us know. Enjoy the party!🍷🍸🎂

[PMRpro Ambassador]

So glad to hear how much things have improved Ryan - all the best and hope you all have a good party!!

[Sonofjimmy in reply to PMRpro]

We will many thanks again, I will try to keep in touch

[DorsetLady PMRGCAuk volunteer]

Hi Ryan,

So pleased to hear some good news about your Dad after all he’s been through.

Guess this week’s footie news will add to the party joy!

[Sonofjimmy in reply to DorsetLady]

We are Everton unfortunately Dorset

Many thanks for your valuable and appreciated support !!

[DorsetLady PMRGCAuk volunteer in reply to Sonofjimmy]

Its always difficult to know! - especially for us Southerners - didn't mean to upset you!!

[Sonofjimmy in reply to DorsetLady]

Ha never !!

[AndrewT]

Great News Ryan- This has Started MY day well too!

'Love' to you both

AndrewT

[Grants148]

Brilliant news,l hope you all have a wonderful time on your fathers 70th Birthday,Best wishes to your father on reaching this milestone xx.

[Soraya_PMR]

Happy birthday Jimmy 🎂🥂🎁🎈

[Aleish]

Hi Ryan, How lucky your dad is first to have you and of course for treatment to work. I have not seen your posts before. I’m a 75 year old woman w/o the help of any family to guide me through my nightmare. My husband has some slight brain damage from a cerebral hemorrhage a few years ago . He finds all this stuff over his head. I live in Florida. Most of my family is in Boston. I’m making all my own decisions on my disease treatment choices. I have one Rheumatologist that feels I need the Retuxin. I just completed almost two years of Actemra and still on prednisone . Those were given for the GCA/PMR vasculitis . The GCA symptoms seem to be gone but I have had a lot of body pain and a positive ANCA test which seems to fit remaining symptoms that appear as Wegners. Rheumatologist feels this is a mild Wegeners vasculitis . First rheumatologist found positive labs for Sjögren’s and possibly Lupus. The crazy thing is the Rheumatologist that wants me on Retuxin is my age of 75 and has Wegners himself. He is a Hopkins trained physician. Other rheumatologist feels He is wrong sbd she told me that Retuxin has one specific side effect that makes her not comfortable using it on me. This is the one that effects the brain and can cause death. I know others on the medication for non hodgekins lymphoma and a young women on it for years for Wegners. Presently I am just on Plaquinil and 5 mgs prednisone.

However, I think if I don’t go on the Retuxin I will not be here much longer. How did your dad feel while receiving it? Anything you can share would most appreciated. Does he have Wegners Vasculitis ?

[Sonofjimmy in reply to Aleish]

Hi Aleish, sorry for delayed response

Sounds like all very complicated, we also had indifferent and inconclusive diagnosis for many months, our decision to change specialist and hospital when admitted for emergency brought a different approach and more detailed review, his condition was eventually identified through a biopsy of the nerve in his foot!! conclusive enough for them to start Rituximab treatment. He has responded totally fine the first treatment took around 2 months to get going and lasted five months from the intrusion. The second treatment worked instantly and is now in month five and he is starting to fatigue a little the next cant come quickly. He has no side effects at all and I believe that if its the right treatment for the right condition you should always respond in this way

Good luck, keep questioning and believing, you will find the right treatment x

[Hidden]

Hi

I'm so pleased for your Dad and if course you as well, I'm lucky line your Dad is to have good support.

I haven't been diagnosed as yet but feel my symptoms fit this. I have fibromyalgia plus other things so like everyone else, I'm in constant pain. Love to you both and enjoy the party.