I was sitting here this morning and started to blow my nose and red blood kept comming out into the kleenex. It really scared me!! Is this just a nose bleed? It has stopped now. I went through about 8 or 9 kleenex. Has anyone else had a nose bleed after IVIG? Should I be worried? I have never had one before. I also have a mild headache this time. But not dizzy at all.
I have never heard of this as a side effect of IVIG, but others may know more about it.
Are you on any other medications? I am taking Imuran, which can lower the platelet count in your blood, and cause clotting problems. My doctor watches my platelet count pretty carefully. Any chance it is something like that?
I had bad headache this morning but no blood. I googled IVIg side effects & nose bleed wasn’t listed. Probably nothing
I used to get bad nose bleeds after my IVIG and my neurologist tried to put me on a few medications to stop them but nothing worked. I normally got them the week after my treatment and the longest one I had lasted about twenty minutes, the normally came with headaches aswell. I got them until I was about 12 or 13 ( I was diagnosed at 2 and I'm 15 now) but now there not a problem, my doctors say its because I have become more used to the IVIG.
My 4 yr old gets them and I took her in a few months ago to see her Neuro and let him know about her Nose bleeds. He said she was young and putting fingers where they dont belong and said that nose bleeds are not a symptom with cidp or Ivig but now I'm second guessing him. Reese had a IVig treatment 2 weeks ago and TWO days after she had a nose bleed again and NO she wasnt picking her nose, I was sitting right next to her and she was using both hands playing her leap pad. It sounds like it something we should look into.
Oh God, how can peple this young be sick. It’s not right & I feel so angry for you Charlotte and R&R Mama. Really, since you were 2 and Reese @ 4 years old. I don’t even know what to say.
Finished IVIg yesterday…horrible headache and NOSE BLEED! Can’t be a coincidence
No I dont think so either Doggymama and yes its very sad period but when their so young...My baby cries all the time and says 'why is this happening to me" It breaks my heart:( She was dx at 3yrs old! So sorry Charlotte that you have had this so long and young but you give me hope for my baby girl:)
I have headaches, and other than that no nose bleeds. I would check with your doctor on those symptoms. May just be a dryness of the nasal membranes. Good luck. If it is helpful to you and others I started a blog. I describe my ivig infusion sessions as well as all my 8 autoimmune diseases and other major health issues. Mixed connective tissue disease, raynauds, lupus, polymyosis ra, COPD, antiphospholipid antibody chronic pain, chronic fatigue, fibromyalgia, cidp, and undiagnoised ms. perpherial polyneuropathy. bladder cancer. My attempt is to educate people/patients thru my experiences. I too am finding there is also an extreme defecit in the information for cidp. This is a rare disease, and unfortunately, not a disease doctors in my home town see very often. I am also trying to bring awareness to both the disease and the treatment. Thru my personal experiences I hope to help anyone going thru this therapy. All those anticipating having this treatment protocol. It is one my doctor prescribed for me due to all other medications that did not work. My next option would be plasmapharesis. I hope it does not come to that. Feel free to contact me for my blog site. all the best to you and everyone dealing with this progressive, debilatating disease.
I have not had any more nose bleeds after IVIG so it must have been a coincidence. I am not on any other medications for CIDP, just IVIG. It just freaked me out because it was right after receiving IVIG so I thought maybe they were connected. But I guess not.
I don't like how I feel when on medications. I caught my CIDP very early, within 5 months of symptom onset. So I don't have any nerve damage 'yet'. I started IVIG within 5 months of symptoms and it worked for me really good. It stopped all my symptoms. As long as I get my IVIG every 21 days I don't have much in symptoms. I am weaker than I use to be. I get exhausted easily, especially going up steps. My feet feel like bugs crawling on them sometimes at night. And sometimes my legs feel heavy when walking 'I tell the neurologist it feels like sludging through thick mud'. But other than that I feel fine. But when I get close to the 21 day I start to see more symptoms come up. So I know I am not in remission and will need to keep getting my IVIG to stay like this. I have a lot of anxiety too because I know I should be sicker and I am awfully afraid of getting sicker and needing more and more drugs to get through the day. So I have problems sleeping because of anxiety. So I guess you can say I have been very lucky up until this point and I sure hope my luck holds out for many years. Maybe by then the SCT will be availible for everyone with CIDP.