Common Variable Immunodeficiency Support Group
Common variable immunodeficiency (CVID) is a group of 20-30 primary immunodeficiencies (PIDs) which have a common set of symptoms but with different underlying causes. CVID's underlying causes are different, but the result of these are that the body doesn't produce sufficient antibodies in response to exposure to pathogens.
Hello, this is my first post. I suffered from migraines with aura pre first infusion, but sort of ignored their importance and treated them with Advil liquigels. My first infusion went at the minimum speed and was called off when I developed a migraine at less than 10% of the way through. It was rescheduled and I came back two weeks later, and was premedicated with Gravol and Tylenol and hydrated a lot. I fell asleep and it went through. I woke up the following morning, and couldn't tell which was the floor or wall, where noises were coming from. I had a massive case of vertigo and was very light sensitive and nauseous. Over the following three days, I went to the emergency each morning and they sent me back home after hydrating me, each time. But I kept getting worse. Eventually I was diagnosed with status migrainosus (a cyclical migraine) linked to the infusion, with a possible aseptic meningitis.
I would like to know if anyone in this forum has experience either aseptic meningitis or status migrainosus linked with their infusion?
Finally, because I entered the hospital on a bright sunny late summer day with a deep sense of hope for my health and trust in the team of doctors, and left on an a cool day in the middle of autumn, feeling really depleted and weak, I have struggled with a loss of trust in the health system. A feeling like this is a rare illness, and I have it, that these were really rare side effects and I got them. I have sought counseling and have found mindfulness techniques are helping. yogaglo.com is great because they offer yoga classes for the immune system and meditation sessions for chronic illness. Any other suggestions?
I would like to know if anyone in this forum has experience either aseptic meningitis or status migrainosus linked with their infusion?
Finally, because I entered the hospital on a bright sunny late summer day with a deep sense of hope for my health and trust in the team of doctors, and left on an a cool day in the middle of autumn, feeling really depleted and weak, I have struggled with a loss of trust in the health system. A feeling like this is a rare illness, and I have it, that these were really rare side effects and I got them. I have sought counseling and have found mindfulness techniques are helping. yogaglo.com is great because they offer yoga classes for the immune system and meditation sessions for chronic illness. Any other suggestions?
http://primaryimmune.org/healthcare-professionals/idf-consulting-immunologist-program
I am sorry to hear you are having some of the rarer side effects.I know that in some cases severe headaches are a sign of aseptic meningitis.
It sounds like you are really taking some proactive steps to make yourself feel better like yoga and counseling and that is awesome.
I was wondering about your team of doctors and if you just feel let down because of the rare side effects or if you are not sure they are right for you?
I ask because I live in a small town, and the Dr's around here had not seen many complex cases like mine so now I travel almost 2 hours to a well known hospital with docs that see lots of complex cases.
Finally, I was wondering If your immunologist has considered changing the brand of Immuoglobulin therapy you are on ? Each drug company produces a slightly different product, and sometimes one brand will have a bit more IGA in it than another. I'm no doctor, but in talking with nurses at the hospital, I was told that some people react poorly to higher levels of IGA and need to be switched to a different brand....Just a thought
Be Well :)
LuLu
Your doctor should (in my opinion) be investigaating other ways to deliver the iggs to you. I have finally, after years of trying, found a way to do the subcutaneous therapy at home and it is a life changer!
I am on gammaguard and at a very low weekly dose right now but I am not reacting.
I totally understand feeling screwed over by the medical system. Our types of immuno diseases are very poorly understood.
If you have the chance, you may want to investigate going to a better diagnosic center, such as Mayo, for a work up. Good luck and don't give in!
I recently had to change infusion companies. When the nurse told me after two hours of infusion that I had only a half an hour left, I was shocked. My infusion should be four hours.
I really paid for the faster infusion. I had severe headaches for several days. I cannot imagine the pain you felt. When I go again this month, I am going to tell them my rate must be at least four hours.
I hope you feel better each day.
I will definitely let my immunologist know about gammaguard, keifertaylor, and the primary immune link kelli, and I think the plan now will be to switch to a different brand through sub cutaneous, lymebytes. It is really interesting to me that it may be, Lulu, due to the levels of IgA in the mixtures that may have led to these side effects. I may go to the Mayo clinic. That sounds like a good idea. I am in Canada, so I would need to inform myself a little more about that.
I guess I feel let down because when you first hear about your diagnosis and you go through your stages of loss of health and then you are told you are going to feel better because you have these amazing treatments that are going to make you feel better, you believe they will. The doctors told me there was a small chance of aseptic meningitis, but even said "but chances are so small"... and I said " It's not going to be me." And we laughed.
And then I had my first treatment and I spent a month in the hospital, it just wrecked my body. It's going to be six months that I haven't been able to get back to work, I am still trying to manage the migraines that the infusion set off and I won't be able to switch to sub-cutaneous until they are under control. I am seeing the best migraine specialist for that, but it's still taking a while.
Which is why the meditation and the support and the yoga are all positive ways that are slowly bringing things around...
You have such a positive attitude! It is great that you are able to stay strong through all of this :)
Getting the right treatment, the right dose, the right doctor, the right rate is like any other medication-trial and error. It's frustrating and it is a major life change that few people understand so I am glad you mentioned feeling supported here.
I hope you keep posting and I would be really interested in hearing about experiences at the Mayo Clinic.
I had an infectious disease for a year before getting the correct DX and treatment. My body is slowly recovering from the original illness. It takes time, but your body will heal, you will put your life in order and IVIG treatments will become part of your routine.
LuLu