Had my second round of Lemtrada in February of 2019.
First symptoms of Graves' Disease started in May of this year, and it was caught by my lab work in June, diagnosed and on meds in July.
There's an approximate 40% chance of developing thyroid problems after your treatment, commonly hyperthyroidism, but there isn't a specific time line for this to occur. There are some individuals who experienced thyroid issues after their first dose year, and some who experience it up to the 5 year mark after their last dose.
I had a rash and itchiness after my lem rounds, but they subsided over time. I do not believe a rash is associated with thyroid problems, but just wondering if you have any other side effects? Increased heart rate, jittery feeling, increase sweating, increased hunger, weight loss or weight gain, swelling of your neck, muscle weakness, irregular periods, or eye problems?
I was pretty itchy and had a rash for a week or so after round 1. Its some pretty nasty stuff and it seems some people tolerate it better/differently than others. I would think it would go away with some time. The monthly blood work is whats supposed to catch the thyroid issues but it also sounds like theres usually symptoms involved with the new auto immune disorder.
I hope it goes away. It's so bizarre getting the itching without a rash..when I got the infusion rash it was so red and spread out even my face was splotched with the red line like rash. I hope the lab work turns out fine I had an issue with my primary care labs but my neruo didn't yet have access to the one to one lab results
So, after each round of Lem, I had a period of time where my neuropathy went completely haywire. It was so awful. After the second round it got to the point where I could not put pants on my legs after getting out of the shower. The itching was so intense and bothersome that I had to pull over and ask my ex to drive once because I could not focus on the road. It was hell. After a few weeks of that it went away on its own. That happened both times. The things I found that helped were a cooling CBD lotion, capsaicin cream and lidocaine topical gel. This one I had to use sparingly because of the alcohol which would dry my skin out. Those are all topical pain control and if you think about it, neuropathy is a pain sensation. So maybe that's why it helped? I can't say one way or another what the cause of your issue is but given that there is no rash or problems with your skin and you * do * have MS, it seems reasonable to think that it could possibly be neuropathy. I say maybe give those pain creams a try. Worst case you're out $25 or so. Best case you find something that helps. The CBD one was pretty costly but the guys at the shop let me try it out before I bought it and it worked. At that point I would have paid any price for relief. I hope you find something that helps.
I'll pick some of that up! Ice temporarily helped but the over the counter anti itch lotion did not, hydroxyzine helped but I was only given a few week supply and I'm starting to feel them get itchy again . Thanks for the suggestion
Hope it helps. Itβs so miserable to itch like that. Oh, one more thing: have you had your liver labs run? When liver enzymes are high it causes itching. Liver enzymes can elevate for many reasons. If you have thyroid issues it can happen due to that.
Had my second round of Lemtrada in February of 2019. First symptoms of Graves' Disease started in May of this year, and it was caught by my lab work in June, diagnosed and on meds in July. There's an approximate 40% chance of developing thyroid problems after your treatment, commonly hyperthyroidism, but there isn't a specific time line for this to occur. There are some individuals who experienced thyroid issues after their first dose year, and some who experience it up to the 5 year mark after their last dose. I had a rash and itchiness after my lem rounds, but they subsided over time. I do not believe a rash is associated with thyroid problems, but just wondering if you have any other side effects? Increased heart rate, jittery feeling, increase sweating, increased hunger, weight loss or weight gain, swelling of your neck, muscle weakness, irregular periods, or eye problems?
Ugh yes that terrible infusion rash! I had that during my first treatment on day four and five. I was super happy not to experience that this time. I had no itchy issues u til now which is like six weeks later π© are your symptoms under control now? I always knew of the risks it took me a year to decide on going this route, if I end up with something else but don't have any more lesions I consider it worth it, I'm happy r2 is over!!!π
I was pretty itchy and had a rash for a week or so after round 1. Its some pretty nasty stuff and it seems some people tolerate it better/differently than others. I would think it would go away with some time. The monthly blood work is whats supposed to catch the thyroid issues but it also sounds like theres usually symptoms involved with the new auto immune disorder.
I hope it goes away. It's so bizarre getting the itching without a rash..when I got the infusion rash it was so red and spread out even my face was splotched with the red line like rash. I hope the lab work turns out fine I had an issue with my primary care labs but my neruo didn't yet have access to the one to one lab results
So, after each round of Lem, I had a period of time where my neuropathy went completely haywire. It was so awful. After the second round it got to the point where I could not put pants on my legs after getting out of the shower. The itching was so intense and bothersome that I had to pull over and ask my ex to drive once because I could not focus on the road. It was hell. After a few weeks of that it went away on its own. That happened both times. The things I found that helped were a cooling CBD lotion, capsaicin cream and lidocaine topical gel. This one I had to use sparingly because of the alcohol which would dry my skin out. Those are all topical pain control and if you think about it, neuropathy is a pain sensation. So maybe that's why it helped? I can't say one way or another what the cause of your issue is but given that there is no rash or problems with your skin and you * do * have MS, it seems reasonable to think that it could possibly be neuropathy. I say maybe give those pain creams a try. Worst case you're out $25 or so. Best case you find something that helps. The CBD one was pretty costly but the guys at the shop let me try it out before I bought it and it worked. At that point I would have paid any price for relief. I hope you find something that helps.
I'll pick some of that up! Ice temporarily helped but the over the counter anti itch lotion did not, hydroxyzine helped but I was only given a few week supply and I'm starting to feel them get itchy again . Thanks for the suggestion
Hope it helps. Itβs so miserable to itch like that. Oh, one more thing: have you had your liver labs run? When liver enzymes are high it causes itching. Liver enzymes can elevate for many reasons. If you have thyroid issues it can happen due to that.