RTX and life

[loisann11]

I have been getting rtx every 6 months since April 2013. So far it does the job of killing my immune system which is what it is suppose to do. No side effects for me from it and it takes about 5 hours as an infusion 1 time. They call it remission. I am confused most of the time since I still feel like crap. I have aches and pains, right now I have an ear infection. I never know what is going on. If this is just the way it is or is something really wrong. Anyone out there know?? Does this thing still make you feel like crap even if you are in remission?? I can't seem to find anyone with an answer to that.... Thanks

[Pete]

I get 1,000 mg of rtx annually. I only have mild fatigue for 24-48 hours following. I'm in remission, and I feel very well.

Just because we have wegs doesn't mean we can't have something else. Please see your doc or an ENT about your ear infection.

Just had a thought, are you taking any prednisone? If not, it might help with the other symptoms. I take 5 mg/day (haven't been able to get off it completely).

[loisann11]

Thanks! No prednisone. I'm 66 so aches and pains are kinda normal I guess but it's getting so all joints hurt, no ambition, just wondering if normal or for wegs or age. I am getting ear infection treated. Not sure antibiotic is strong enough. With no immune system not sure, so far not going away. Will check back with Doc if doesn't improve or gets worse. Looking for a Rheumatologist that has background in wegs. Have been treated mostly by my kidney Dr. that diagnosed me. But still feel the need for more of a specialist in it.

[Pete]

I'm 70. I thought the joint pains were just part of aging too, but when the labs went a little sideways, that was confirmation that I was starting a flare.

You're in Minnesota. How close to Mayo Clinic are you? Some of the world's best GPA docs are there.

[loisann11]

I'm 70. I thought the joint pains were just part of aging too, but when the labs went a little sideways, that was confirmation that I was starting a flare.

You're in Minnesota. How close to Mayo Clinic are you? Some of the world's best GPA docs are there.

Thanks, I have been to the Mayo as a 2nd opinion, but I am about 6 hours away for real care. labs seem to be Ok from what they tell me but each Dr. seems to have a different opinion what all the numbers mean. Trying to find just one that knows more than all the others. New one in Feb.

[Alysia]

I have been getting rtx every 6 months since April 2013. So far it does the job of killing my immune system which is what it is suppose to do. No side effects for me from it and it takes about 5 hours as an infusion 1 time. They call it remission. I am confused most of the time since I still feel like crap. I have aches and pains, right now I have an ear infection. I never know what is going on. If this is just the way it is or is something really wrong. Anyone out there know?? Does this thing still make you feel like crap even if you are in remission?? I can't seem to find anyone with an answer to that.... Thanks

Where do you have pains ?
The fatigue might be wg related. Not rtx related, as far as I understand.

[annekat]

Welcome, Loisann, It would seem more typical for one being treated with RTX or any of the other standard immunosuppressants to also be on prednisone. While it is a drug we love to hate, it would likely help you with the joint pains and even the ear infection... if antibiotics aren't working for that, it would seem to indicate it is not a bacterial infection as much as a symptom of WG. True also what Alysia implies that your being immunosuppressed by the RTX could be making you more open to ear infections that are hard to fight off with ordinary antibiotics. If you are near Mayo, I would inquire about seeing a good rheumatologist there as well as a good ENT. Sometimes being treated by just a kidney doc isn't enough. Rheumies (the ones that know Wegs) have a broader background in our systemic disease that can affect any part of our body, and they can work with the other specialist docs that you see for specific areas. Best of luck.

[loisann11]

Where do you have pains ?
The fatigue might be wg related. Not rtx related, as far as I understand.

My main ones are in the thumb to hand joints, knees come and go, arches in foot acts up now and then, frozen shoulder, right now neck collar bone. Been told now about gouty arthritis due to higher uric acid levels. 40 years of osteoarthritis in back mostly. Again over 65 so guess par for the course. NOT related to RTX feel better after it for a little while.

[loisann11]

Thanks, high dose prednisone almost did me in, I had every side effect that was listed and a few extra I think. Not sure how low dose would do but did mention to last doc. Turns out ear infection is caused by a cold sore I also have. Read up on it after doc told me they were connected. Really ugly read.

[Alysia]

My main ones are in the thumb to hand joints, knees come and go, arches in foot acts up now and then, frozen shoulder, right now neck collar bone. Been told now about gouty arthritis due to higher uric acid levels. 40 years of osteoarthritis in back mostly. Again over 65 so guess par for the course. NOT related to RTX feel better after it for a little while.

It sounds much like the joints pains. Please consult with your rheumatologist to check if it is wg related or other. Pred can help with it. Maybe a small doze, like 5mg will be helpful and without side effects ?