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Tysabri kidney problems

Common Questions and Answers about Tysabri kidney problems

tysabri

1896537 tn?1381900009 My kidney pain has always been right where the kidneys are located, just above the pelvic bone, rearward of midline. I've never experienced pain like I underwent with my complex kidney problems, back in the '80s. It was far worse than the broken bones I've dealt with. My back pain is also quite localized, usually. Underline "usually.". I have my second visit with a spine specialist Monday, the 25th, after my Friday intro visit with a PT guy.
2047903 tn?1330187549 Hi all, I have a strange problem going on. I feel as if I have a "distended" bladder. I have a feeling a pressure where my bladder is, almost like there is a tight ball in there. I don't know how else to describe it. However, even with the pressure, I don't have the urge to urinate. I'm able to if I try, but I'm not sure if I'm emptying completely. I have this sensation on and off at times, but today it is really bothersome. I started Tysabri on Thursday.
Avatar f tn relapse/flair, whatever. It was 9 days of no fun. They even refused my Tysabri last week because I had a fever of 99.0. Am still on antibiotics for a UTI that I didn't know I had, which I think was really cystitis. Anyway, I have 3 more days of Ciptro and Tysabri is tomorrow. Will make sure I take aspirin to keep any fever down. I've been 6 weeks off Tysabri now.
559187 tn?1330782856 I'm not sure how they are going to work that one out. They certainly won't admit it I am guessing. I know when I was searching for "gap" insurance, the big thing with them was kidney dialysis. However if you are on meds already, not sure how they can change it. As long as you have no coverage gaps, and I don't remember where, but for example, there are studies that Tysabri is now being used (along with another drug but can't rememer that name) for progressive MS.
1088527 tn?1425313375 I will start tecfidera in 3 months I hope I dont have the rebound effect I have heard about after stopping tysabri. Tysabri has really changed the way I feel was using a walker now nothing and I do Zumba too. I hope I stay like this but having doubts. anyone using tecfidera? How was your experience.?
1760800 tn?1406753451 He feels that Tysabri is the way to go. I know that there are others here on it or used to be. I would love some insight on what to expect, how long it takes, etc... Thanks!
252144 tn?1227422620 The third, fourth, fifth and sixth infusion all went well. I still had some problems just not as bad as before the Tysabri. After the sixth infusion I had my first post-Tysabri MRI. Now remember, I have had MS since 1995 and have had MRI's every year sometimes twice a year....and each one got worse and worse. My newest MRI showed improvement! The Tysabri was working!! I was in so much shock I couldn't believe it.
3057400 tn?1340439349 m sorry you are having new worsening problems. Have you alerted your doctor? This may be a relapse for you and a course of steroids may help. Or, was the Tysabri suggested because the doc feels you may need a switch in meds? We do have Tysabri users on our forum, and I'll find a discussion about it and post the link here. It would be great if the Tysabri would indeed help you get some strength back. Welcome to our forum, and hope you stick around.
5993128 tn?1384747803 Hi BL- Welcome to Our Merry Band :-) I was diagnosed 2 years ago, at age 51, with SPMS. My first, and up until a week ago my only, DMD was Tysabri. When I was diagnosed we were able to connect seemingly random events over the previous 20 years. What seemed completely unrelated was related. All were symptoms of MS. Because I'd had MS for so long my doc thought I was out of reach of the injectables. At the time the orals were just starting to come on the market.
1638868 tn?1309542428 Could you give us a little background on what meds you've tried and for how long? I'm sure you've mentioned it before but I have a hard time keeping track of so much.
294425 tn?1288528395 When dx'd? 10/2011 Other treatments prior to Tysabri? None How long have you been on Tysabri? 2 Infusions to date Do you feel it is helping? No big improvement, but no further deterioration. I suppose that's Tysabri's job :-) Have you had any side effects? No side effects of any kind. I have been tested for the JC virus, but don;t officially know that I'm negative.
Avatar f tn It is a drug with the potential for serious problems, including once it is in your system it cannot be removed. Even Tysabri can be removed if it causes an adverse reaction. The trial results have been impressive. Another form of Lemtrada - Campath - has been used as a chemo drug for years. I really get heartburn about how the mfg has jacked up the cost of this drug for MS use and has continued to give it to the cancer patients for FREE.
1088527 tn?1425313375 My MS doc always gives a small dose of Solumedrol, which is much larger than a usual prednisone dose, to his new Tysabri patients. They get the IVSM in the first hour. Then they get the Tysabri in the next hour. His experience says that the mini-dose of IVSM helps the Tysabri get to work faster by cutting any inflammation in our system. He does that for the first three Tysabri doses when just beginning this therapy. I hope you are less itchy today and can reach your doctor in the morning.
1950519 tn?1324518193 Over the last 12 years he has been on all the ABC drugs. Now he is completing the 2 year mark of using Tysabri. Dr Appointment in 2 weeks assume he will stop infusions. I wonder what is next???? How are others doing after all these treatment and now what do they take???
294425 tn?1288528395 I'm just curious .... For any of you who are on Tysabri, I was wondering if your neuros had changed their treatment plans or recommendations because of all the new PML cases and the acknowledgement by Biogen and the FDA that risk goes up after 24 months. I hear some are now pulling their patients at 18 or 24 months. I saw my neuro yesterday, and we discussed it in detail .... we are staying the course at this point, which made me very happy. (I go for #18 in a couple of weeks.
1831849 tn?1383228392 I had my 5th Tysabri improvement last Sunday. Since then I have noticed a major improvement in the way my legs feel and work. I mean a major improvement. My legs have not felt this good in a very long time. I have also been exercising regularly for the last month and have lost a bunch of weight. I'm trying to determine to what I can attribute the improvement. Is it the Ty infusion? The exercise? the weight loss? I'm kinda hoping it's the Tysabri.
Avatar f tn Hi Miche Sorry your having problems. Tysabri is a step above Copaxone,Avonex, & Tecfidera in terms of strength. All of them are more designed to stop the forward progress of MS rather than repair damage already done. What does you neuro have to say?
Avatar f tn I've been on Tysabri since 2012 and tested + before I started. Some months I feel better, some I don't.
4848471 tn?1372238752 There is an alogirthm for the chances of contracting PML while on tysabri. I believe it is on the tysabri website among other places. I will see if I can find it for you and report back.
294425 tn?1288528395 OK guys I need info..... anybody here on Tysabri? Anybody been on it previously? Any first hand input is helpful, as well as any info in general. My neuro tossed it out at the appt today - COMPLETELY blew me out of the water. Never saw it coming. The Rebif makes me sick and he's concerned that things keep advancing and I've never really had the elusive remission... :) He explained alot about Tysabri - truth vs hype.
5681139 tn?1372268736 Now, based on the last MRI, he has officially diagnosed me and is recommending that I go on Tysabri infusions. From what I can tell on this forum, it seems like he's hitting an ant with a sledgehammer. It seems very unusual for people to be prescribed Tysabri right off the bat. I am very confused as to what drug to go on, if any. His first choice for me is Tysabri, followed by Gilenya, followed by Copoxone.
Avatar m tn I just heard a local neuro talk about using doses of steroids to control MS problems during the washout period (usually about 3 months) between tysabri and gilenya. Your final statement to Sarah is so wrong in so many ways - the doctor who says you don't treat a progressive disease needs to lose the medical license and get into a different line of work. There is definitely treatment for all of us...
Avatar f tn Know others have worse problems, but I'd just love a vacation without Tysabri side effects. I diligently took my Prilosec for the 5 days, and wouldn't you know, on the 6th day, I was back in ER that night, hooked up to IV and fluids. They had to give me a bolus bag before they could draw blood for the labs, guess I was dehydrated. I love it when they make regular rounds with WARMED blankets!
2047903 tn?1330187549 I'm signed up to start Tysabri in the next couple weeks. My doctor really recommended it as he thinks it would be a good option for me. It's just kind of difficult for me to wrap my mind around because it seems like it's used more as a last resort rather than a first line of defense. This will be my first DMD, and I'm a little nervous. Is anyone else using this as a first DMD? What kind of side effects can I expect?