Right, I've been doing some reading up on the net about the link between the 2,and I'm getting some conflicting accounts. I was wondering whether you guys could help me with 2 questions?
1. Is it that the biologics can cause MS, or is it that if you were likely to develop it anyway, they increase the likelihood?
2. If you do develop MS like symptoms, if you stop the medication, do they go away?
I will ask the rheum nurse next time I see her for my next shot as well! But I hadn't paid a huge amount of attention to the MS risk, as my rheumy had said it was so rare that virtually didn't happen....I just had to be aware that it COULD happen. And I'm sure I read that in the trials for HUmira it didn't occur at all...But reading on the net, there do seem to be a few a ccounts of it happening.
Anyhow, thanks in advance
All these drugs carry risks...but so does driving to work or catching the bus. Most things in life we do carry risks.
Your rheumy is probably right it is so rare it virtually doesn't happen...those cases you read are probably the virtually don't happen ones.
I am about to start Mabthera infusions, that also carries a rare MS risk.
This stuff all sounds very scary and the doctors have a responsibility to make us aware of it all but what we live with otherwise is pretty scary too.
This is your journey, your RA, you need to follow your instincts about what is right for you but also be aware that we can scare ourselves silly by self dxing and freaking out over information that is not necessarily going to be part of our experience.
Hey, good luck with the Mabthera
Just having this makes one hypochondrical. It is all part of the process, the questioning. And as our drugs are trial and error and effect everyone differently who can say what would happen if you go either way. You could have huge side effects from the Sulfa and none from the Humira? You just never know. In the end all you can do is make the most informed decision you can and give it a go.
I don't know whether the MS symptoms go away again or not. What I understood about Mabthera is the risk was it could actually trigger MS off. Hopefully someone on here will be able to answer that for you or your rheumy nurse or rheumy will.
I am that rare case that developed MS symptoms from Humira. Unfortunately, they do not know a lot about the long range issues regarding this. Some doctors believe persons who contract the symptoms were prone to it. I can tell you that no one in my family has had the disease which is a big factor in the determining your "proneness". Your second question is also an unknown. When I did stop the Humira, my symptoms decreased. Problems with my vision have pretty much gone away Since the MS caused lesions on my brain, I still live with those. My spinal lesions have somewhat healed and the symptoms of tingling and numbness have subsided considerably. I need to continue to have annual MRI's to watch for progression since I opted not to taked any MS medication.
I don't mean to scare you. I truly felt so much better on Humira and consider it a great med for some people. I do think the more knowledge we have about our meds and disease is a good thing.
Pat
Hi Pat
Lovie stopped humira for MS like tingling\numbness in her legs. She is doing better now (last time I heard anyway). Where is Lovie these days?
I have taken humira since January - without any side effects at all!
I had taken remicade for 5.5 years and enbrel for 1.5 years. They both gave me nasty headaches.
People usually do well on the bios - try not to worry.
I was on Humira for about a year. When exactly the symptoms started is hard to say. I'm one of those people who blame all of my aches and pains on my RA and I wait and see if things will go away before checking with the doc. Since I was about 50 when all this started, I also blamed menopause for some of the symptoms.