I started rutuximab little over a month ago. I had two infusions two weeks apart, each session was 5-6 hours. The first infusion I went home with fatigue and cold chills. No biggy! The second infusion I had severe bone pain for two days and I was in bed with no ounce of energy. My doctor said they did not hydrate me and that’s why. I will be going again in 4-5 months. I noticed my psoriasis is clearing up a lot. As for the lesions on the brain they will do another MRI after my next infusion. I am hoping this works and slows down the lesions and the sjogrens disease and the other auto immune symptoms I have.
I met a girl at my doctors office who has sjogrens. She has the same positive blood test and exactly the same symptoms I have. It’s a feeling of knowing I am not the only one and that this is truly the disease and not me thinking I am crazy with the strange symptoms. It was a relief to see and talk with someone.
I have been really pleased with the doctors plans in treating this disease.
Hope everyone is well! I could really use a friend to chat with I have been feeling bummed. Inbox me if you are interested in venting together
Cg, how nice that your psoriasis is clearing and that you met a friend with similar circumstances at the doctor's. I hope you continue to see improvements. Thank you for checking in and updating us.
I am delighted that Rituxan has had some positive effects for you and hope they continue - it will take time for the immune system to respond and "adjust". The side effects you describe are varuable and as you say much depends on the exact protocol they use when injecting. Hopefully they will improve each time.
There have been some good trials in the US with abatacept and belumimab too in the past 2 years so things may be looking up for our American members.
Please keep posting about your experiences it is very helpful for our members and hopefully some one will pm you with a desire to talk to like minded sufferers :)
It does help we all feel isolated and strange with this under recognised and under "respected" condition and as if we were going mad. A lady "chatted me up" the other day (hit on me USA parlance?) and said how well and attractive I looked. I felt awful have had a few bad days and it seemed so incongruous that I felt so S**** but someone thought I looked so well. She didn't know about my SS.
This is one of the burdens of "invisible" diseases and why groups like this are so valuable.
Keep strong for all of us! :)
i would like to know what the name of the test is you had that confirmed sjogrens. getting so frustrated with them trying to find out whats wrong with me, when i say try testing for sjogrens, i get the response, "i dont think you have sjogrens, besides 6 years ago you had the schirmers test after they did a thousand other tests for ra" thats the only test i had and now my dry eyes are worse.
Bless your heart. I'm so terribly sorry for your pain. You will be in my prayers. I go get my blood test results Wed. Take care of yourself dancermom.
Please tell me more about this therapy. What is the action of the drug? How does it affect Sjogren's and other auto-immune disease. What are the side effects etc.? The more information the better. Hope it works for you. Are the lesions in the brain a result of the Sjogrens also?
I too had the severe bone pain for several days after. We thought it was a prednisone bounce back because they gave me 100mg before the infusion and I was on 10mg normally daily. So we did a taper after every infusion, it helped some but I still had the severe fatigue for at least a week after. We stopped it after the second set of infusions because it wasn’t helping my RA/Sjogrens. Hoping it helps you in many ways. It helped shrink my dads tumors he had.
I am sending good thoughts and prayers your way. I agree with our other friends, that it is so important to stay connected and informed. Plz keep us updated on your progress.
Hey CG … I am glad that you are seeing hope through all of this. A while ago we were meeting here on Sunday afternoons to chat live in the main room. Would you or anyone else here be interested in re-sparking that? For me to sit and have my tea while we "chatted" was really nice. Its a good opportunity to vent as well as get to know each other better and the things that keep us human outside SS.
Yellowrose, I test negative for RA, etc also which is what delayed my treatment for years. In my case it was the Sjo test ordered by my eye doc that showed SS. After they knew what they were looking at my new rheumy ran his own tests which further confirmed it.
I'm waiting on my blood tests on Wed. If the diagnosis is confirmed, I would love a chat session. I think that would great Enjoy Life. Thanks for the suggestion.
I appreciate everyones support and positive words. It certainly is feeling like the right direction I am taking to treat my SS and other autoimmune disease. My doctor said it could take a year or two to really see if it’s treating the disease the way we hope for.
I will keep everyone posted on my treatment. Some one asked if the lesions came from SS and my Doctor says yes. Someone asked about Rutuximab side effects ect. The best thing to do is look it up on line, and it will seem overwhelming but it is actually a tolerable drug. The nurses say its a miracle drug.
I am really interested in the Sunday live chats. What time or the chats? I live in the USA Easter time zone.
Someone else mentioned how people think we look fine and we are not. I use the looking fine as an advantage for work. I don’t want people to see me weak, and assume I can’t do my job. It’s the people like family & friends who know the whole truth about my health but because I look fine they forget I am not and their actions can really hurt my feelings because I need to constantly remind them remember I get tired easily or how about I just came from chemo can you let me rest right now. It just goes on and on. That’s why I would like some to chat with. So please inbox me. I could use a hug even if it’s online.
What are your symptoms with the brain lesions? Hopee you are feeling better.
Sorry for the late response. I think Rituximab works pretty well. My infusion nurse always gave me a Benadryl before starting each session so it would relax me. I had 4 sessions in 4 weeks and didn’t have any side effects. I drank a lot and brought snacks so my blood sugar wouldn’t get low. I have a tendency to skip eating because I’m too tired to care. So I don’t know if that had any effect on my lack of side effects.
You’ve spoken about family and friends forgetting that you need more rest. Sometimes I think their lack of interest in this disease is the most hurtful. I’ve always been “the cheerleader” for family and friends when they have had trouble or need an extra hand to complete a project, etc. I’ve even rearranged my schedule to take friends to medical appts or procedures. But now when I could use some help, they are nowhere to be found. So my response has been a steady withdrawing from those friends and even some family. I can’t deal with their drama. One of the first things I did was to find a good psychologist to talk to. He has been a life saver. At times I think it’s sad that I have to pay someone to talk to that actually listens. But, to me, it’s such a relief to vent to someone with complete honesty. Not having to watch my words or worry that I forget what I was going to say or struggle to find the right word. Someone who doesn’t judge or try to “fix” me by recommending changing my diet or exercising, etc. I’ve even had a friend say “I’m 10 years older than you but you’ve had more problems than me!” She thought she was making a joke but it was really hurtful and had nothing to do with what I was going through. So I understand how you feel.
As for me, I’ve been through most of the recommended drugs and treatment. I had a bout of vasculitis with rather strange rashes. My doctor prescribed Humira and the rashes & vasculitis was gone within a week. You might as your doctor if it’s something you should try. Also, for fatigue and lack of focus talk to a psychiatrist (or a doctor that works on adult ADHD) about Vyvanse. It does wonders for me but there are some side effects like raising your blood pressure. It can also make your mouth dry but Biotene toothpaste, mouthwash and spray work really well and I drink a lot of water too which helps your kidneys. Also, rinsing with Peroxyl helps heal mouth sores! I think the benefits outweigh the side effects.
My last bloodwork indicated that I am seriously deficient in the autoimmune antibodies IgA & IgM. IgA are the antibodies that protects the mucus membranes of your muscles, joints, synapses and glands. It’s a bad thing to be out of. Now I’m waiting for my insurance co to approve IVIg Infusions. I hope that works for me.
My last advice is to ask for copies of your lab test results and Google everything that stands out. Check out several of the Google search results and then follow the other links they recommend. You really have to educate yourself beyond a lot of the websites that only list dry eyes, dry mouth, fatigue and persistent cough & vaginal dryness. So many physicians think that is all there is to having Sjogren’s Disease. It’s really about inflammation in your connective tissues. Keep trying different doctors until one of them properly understands the severity of Sjogren’s. Finding a rheumatologist that also has an autoimmune disease is great. They really sympathize with patients. Mine even gave me her cell phone number. That really impressed me especially when she responded to my text questions! Finding the right doctor that helps educate you helps you when dealing with other doctors. You have to inform them because they can prescribe medications that do more harm than good. It happened to me and I wound up in the hospital.
I hope some of what I’ve written is of use to you.
Mary good post thanks for your help. Just one thing IgA and IgM are not just auto immune anti bodies they are anti bodies and what they are produced in response to is just a subset of the whole spectrum of anti bodies. Auto anti bodies can exist in any of the categories of anti body. The test needs to establish what they are produced in response to not what class of anti body they are. For example rheumatoid factor is an IgG anti body.
This is an introduction to anti bodies http://kidshealth.org/parent/system/medical/test_immunoglobulins.html
many other sources out there but this kept it concise.
Rituxan can help with some of the "secondary" SS symptoms and offers help to many - good to hear your experiences of it's value as few of us hve had this therapy so far.
YES a medic who understands and has empathy is a boon but rare as hen's teeth! One who has and AI is even better glad you've found one :)
Mary thank you for the post. I too am the cheerleader and helper even in this disease. I think I get taken advantage of, or my helping ways make others thing I am ok to keep going like the energizer bunny lol
I am glad you get help with someone to talk too. Your right just an ear and no judgments can go a long way. I do have a good friend to talk with to a certain extent.
I am praying this rutuximab helps. I also get the Benadryl before treatment. It’s to premedicate.
I am going to inbox you if you would like to chat…
It is good to hear others perspective on relationships with others. Very few people understand how tough this is. Most people tell me, "You are looking good.". Well maybe so but I don't feel well at all.
I have found that I have to set limits for myself and I hope that others will understand. If they don't I am sorry but I have to take care of me or I surely can't help others down the line.
Good luck with your rituximab. I am interested to see how this goes. This is an option I haven't considered yet.
Hi Country girl,
I’m glad to know that you are showing improvement! It is especially good to see this happening in winter, as psoriasis is always worse then, at least it is for my grand kids.
Sorry they let you down with hydration. Hopefully you will know enough to insist on better care in the future. It’s possible that the one responsible was distracted or called away.
Though I have PsA, I haven’t had any psoriasis show up, I’m beginning to wonder though as my elbows are dry, cracked, bleeding and itching. My fingers are what usually crack open in winter, but not yet this season. I’ve een using neodporin, but they’re not healing…
I hope that your next brain MRIs will show substantial improvement, and that tolerating these new Meds will get easier for both of us. I’m just beginning Humira, and about 20-40 minutes of the shot, I’ll taste it at the top of my throat and go down. I’m guessing that it’s hitting the liver, but need to ask my Rheum, I see him in 3-4 weeks. It’s a much more potent dose than I was used to with the Enbrel, as I took that twice a week, with Humira, it’s every 2 weeks, so I can only imagine what it’s like with infusions that last for months! No matter what, we owe it to ourselves to do all we can possibly do to be as well as we can.
Take good care of yourself,
Sorry for any typos, between these tiny keys and this wretched auto correct, it’s hard to tell what the final product will be!