Ruxience and Shoulder Pain

By casmere

1 min read

Hi, here are my newest updates.

Treatment timeline

I finally finished my second round of two infusions of Ruxience yesterday. This was my second set, with the first ones being last year in August. The headache came on a few hours after the infusion and stuck around for about five days. I also experienced fatigue, but I did my subcutaneous infusion of Cuvitru on Sunday, which also caused fatigue. So today, Wednesday, July 3rd, is a total rest day.

New communication

Regarding my shoulders, I had my X-rays done in early May, and I had an ultrasound done late yesterday. Last Wednesday morning, I arrived at my salon for my pedicure and received a text message from my rheumatologist's office. Yes, you read that right—a TEXT MESSAGE from my rheumatologist's office. This has never happened in the 13 years I’ve been a patient. They wanted to know my availability for an appointment regarding some non-urgent test results.

I emailed them my available dates as requested. Shortly after I sent the email, I received a phone call from them to arrange a phone appointment for that afternoon. WOW! I gave them my time frame of 1:30 to 4 PM since it was my grandson's graduation that evening. I received the call from the nurse, and she got the doctor on the line as well. He asked about my shoulders and then proceeded to ask his nurse to arrange an MRI for me within 2.5 to 3 months if possible. He also wanted her to find a surgeon who deals with shoulders and submit a referral. I believe this is mostly for my right shoulder, which has a floater and rotator cuff issue.

This was totally unexpected for me. Now it's a waiting game for calls regarding appointments for the MRI and the surgeon.

Blessings and prayers,
Casmere

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christine.laaksonen Community Admin
Hello <inline-mention username="casmere" user-id="3145733"/>! I'm sorry we missed this update from before, and we appreciate you coming here and sharing with us. What a surprise it sounds like it was for you to get those results from the doctor. And I have never heard of texting, emailing, and phone appointments going so quickly. They must have been desperate to talk with you! I see that your update was from July, so now that it's mid- August, how are you doing currently? Have you been able to get an appointment scheduled for an MRI? Or with a surgeon? Also, I'm wondering if you've since had another infusion and, if so, how that went? A headache for five days definitely sounds tough. Thanks so much for updating us and letting us know what's been going on with you. Sending you gentle hugs. -- Warmly, Christine (Team Member)
casmere Member
<inline-mention username="christine.laaksonen" user-id="3148879"/> hi Christine, while it sure seemed like it then. Had my first infusion June 17 and second one July 2, and as it turned out, that was the same day as my Ultrasound test on my shoulders. I was sure I posted this info also? So moving forward, my MRI is February 2, 9:35 pm 2025. After my second infusion, extreme fatigue came in about 5 days and lasted too long. It is coming back frequntly. I don't know why this time. It didnt come last August, September. After my first 2 infusions. I felt great, not 100% but quite good. Now, this morning I received an email letting me know when my follow up appointment is, Sept 4th by video, so I don't have and hours drive there and back, so that is nice. Then tis afternoon, i received a phone call from a private number, i was hesitant to answer but I did. It was the Rheumatologist office calling to see if I would be available for a phone call from him, so I agreed between 10 am and 2 pm tomorrow. I asked her why but all she said was some information he had received. So, I will find out tomorrow what this is about. I know my cratinine has been elevated, so makes me wonder if that. Who knows. I am in a fatigue flare thats not good, but I will be fine. Thank you for your interest and questions How are you doing? My Blessing and Prayers to you. Casmere
1. Effie Koliopoulos Moderator & Contributor
 <inline-mention username="casmere" user-id="3145733"/> You're most welcome. That sounds like an awesome plan. Glad you're on a good track. Best of luck!! Let us know how it goes. -Effie, team member
2. casmere Member
 <inline-mention username="Effie Koliopoulos" user-id="3227889"/> Hi, I forgot to rememder, he also gave me a requistion, for physio, massage, and a cople other things. He knows I can't afford to pay fir all these things as my insurance only pays $20 per visit and the rest comes out of my pocket Apparently, there is a group of Dr. Physoi Massage Therapist and others. They found a place close to where I live that is under this group. I have to arrange an appointment with them and will go from there. Also take the the results of test from my shoulders and see where they go.
casmere Member
Hi <inline-mention username="Richard Faust" user-id="3227544"/> , the Ruxience is fir my RA. The Cuvitru is for a deficiency in part of my immune system. My IgG lecl was low so the Cuvitru is a blood product to build up my IgG. I am Hypogammaglobulinemia, try pronouncing that the first time lol Regarding my shoulder the Dr might bring that up today but itherwise can call the Hosoital bookinh site abd request to be put on a waiting for cancelation list I am aware it has to be the exact MRI for the right shoulder and ut could be at any time of the day or night. That is fine with me. I am aware creatinine kevels are for tge kidney and I have CKD so these levels are checked regularly. The last 2 tests are showing high, that could be why he wants this phone call today. Thank you for looking out for me, giving me info on things. I truly appreciate it. Blessings Casmere
casmere Member
<inline-mention username="Richard Faust" user-id="3227544"/> hi Richard, I missed part of your questions so , I am aware these meds do cause fatigue, but usually it is fatigued , but since July it has been extreme fatigue with a few days inbetween of mild fatigue. It is not in collation of my Cuvitru infusion, because started this bad fatigue last Friday right through till today. I do my infusion on Sunday afternoons. I do know the day after I usually am exhausted but the fine for the next day. This extreme fatigue gets in my way, as it surely does for all of us. Thank you Casmere 
1. Richard Faust Community Admin
 Hi <inline-mention username="casmere" user-id="3145733"/>. I don't think I even want to try that pronunciation 😀. Sorry, did leave out the option that the Cuvitru could be for something completely different. That is different with the fatigue occurring at the end of the week completely separate from the infusion. I wonder if the conversation the doctor wants to have with you may offer any insight. Hope you do manage to get moved up for the MRI, but know that whole having to drop everything on a moments notice to go is not the easiest. Best, Richard (Team Member)
casmere Member
Hi <inline-mention username="Richard Faust" user-id="3227544"/> pronounced hypo gamma globulin emia or hypogammaglodulin anemic is basicly what it is. They usually call the day before, but the test could be any time after midnight. My other one I had to have before my hip surgery was booked and ended up at 1:30 am. If remember right. No worries I will make it work out. Casmere
casmere Member
Hi, <inline-mention username="Richard Faust" user-id="3227544"/> , <inline-mention username="Effie Koliopoulos" user-id="3227889"/> , <inline-mention username="christine.laaksonen" user-id="3148879"/> , so my Dr. phone call, it seemed to be about my CRP level as it has been elevated a bit the last few months, but my last blood work it is high, at 35, when it reaches 5 or over is hi. I told him after my Ruxience infusions, I started having extreme fatigue, he said to the RN, always both on the phone, that note to increase my prednisone at my next Ruxience infusions. He then talked about my shoulders and was I having physio? Apparently they have a Surgeon arranged, the RN was supposed to send me info on the surgeon but I didn't receive that.He ask the nurse to send me a requistion for physio, and send copies of shoulder results. He said we will go over everything at my appointment September 4th, coming up. At this point we seemed to lose him,(he was in his car) when I was telling he my MRI is booked for February 2, 2025, but that I could call and request to go on a waiting list. He came back on and he had heard me, said good do that. The first thing he said to me was, you have PMR and RA. I replied that I had PMR, but not now, I have RA. (He doesn't have my records right in front of him in the car, as far as I know, but it was obvious he had gone over them.) Anyway, I contact the Group for Physiotherapy, Massage Therapy, and Osteopathy, and make an appointment. That's all there is right now. Thank you. Blessings and Prayers Casmere 
1. Richard Faust Community Admin
 Hi <inline-mention username="casmere" user-id="3145733"/>. Glad to here that you will be getting PT for your shoulder. I assume that on Sept. 4th they will discuss the 35 CRP. Did he mention the possibility of making a change/adjustment to your treatment regimen? I don't know if you have seen this article from Kelly on how to know when to switch medications: <a href='https://rheumatoidarthritis.net/living/when-to-change-medications' target='_blank'>https://rheumatoidarthritis.net/living/when-to-change-medications</a>. It does sound like the doctor is on top of things and hope you get more answers. Best, Richard (Team Member)
2. christine.laaksonen Community Admin
 <inline-mention username="casmere" user-id="3145733"/> thanks so much for letting us know how your phone call with the doctor (and nurse) went. I'm so glad that you got some information and will (hopefully) get some more at your upcoming appointment at the beginning of September. Hopefully the contact for the physio, massage therapy, osteopathy, and surgery are are quick and you're able to get in promptly. Wishing you a gentle day! -- Warmly, Christine (Team Member)