I finished a three day infusion of solumendrol (sp?) two days ago. I have been on G for 2 months. I feel terrible. My neck is tender all the way around like maybe my lymph nodes are swollen. My vision seems blurrier too. I have never had an infusion before is this a usual reaction?
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Hi metwo:Originally posted by metwo View Post
I would call my doctor if I were you! Don't you know that some of the deaths in the Gilenya trials were associated with concurrent steroid use? Don't know if it was with the higher dose in the trials, but certainly Gilenya and steroids is not a good combination because both suppress your immune system.
Hope you feel better soon!First episode with third pregnancy
On my fourth med: Tysabri since Jan 2013
Proud mommy of three children
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Hi metwo:
As a veteran of literally dozens of IV Solu-Medrol 3-days, I can say that I always get somewhat blurry vision and tender neck and shoulders from the med. So for me, they're completely typical effects of IVSM. They're side effects that don't get mentioned very often and give a lot of folks extra worry that the exacerbation is getting worse when it isn't. At two days out, you're still at the peak of the steroid side effects. Side effects will pass over the next 7 to 10 days.
That being said, I do agree with sexygatubela about the combo of Gilenya and steroids. You should consult with your doctor ASAP because you are at increased risk of infection and you both have to be prepared for the possibility.Comment
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Ditto what everyone else has said. You need to go to the doctor now. If you have an infection you need to do everything that you can to treat it. High doses of steroids and gilenya are not the best playmates and even though the deaths occurred at the higher doses of gilenya, your doctors should definitely keep a close eye on this.
Keep us posted.Comment
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Definitely call your doctor! If you didn't see my post in here about Gilenya and t-cells (http://www.msworld.org/forum/showthread.php?t=113391 ), if your doctor hasn't been watching your t-cells like a hawk there is a chance that they are low - which if you add in steroids and what they can do to your ability to fight infections could be a dangerous mix.Comment
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Why would he give me steroids then?! yiikes I called him and he told me I must not have gotten the full effect of the treatment but he wasn't concerned with the my other symptoms unless they get worse and then I should go to my primary. I did see the article about the TCells awhile back and at that time (before I started on G) I asked him about this. He said that there isn't a need to do any further testing than what he had already done- according to the drug company. He was following protocol. Thanks for all the input. Redwing- you made me feel better cause that is what I am experiencing and today (3 days out) I am feeling a bit better. I don't know if this is worth it though. Do any of you second guess your decisions all the time like I do? I really just feel like quitting. This is my 3rd dmd.Comment
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maybe protocol isn't good enough!
on the other hand after rereading the post about the TCells maybe following "protocol" isn't good enough! I guess I will have to find another doctor that will do further testing :lComment
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Or if you are otherwise happy with this neuro, you might just ask him to order blood tests according to whatever schedule you feel comfortable with. You'd be surprised at how often a doctor will actually do things like that when you have a reason for it and if you ask them.Originally posted by metwo View PostComment
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