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Re: A warning about Enbrel
EricHampton #219293 10/13/11 07:55 PM
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Eric, doesn't matter if the rest of us agree or disagree. You raise a valid point. The overlap between Lyme and autoimmune diseases' symptoms is pretty well known and can complicate/delay diagnoses. You are also right, from an epidemiologic standpoint, that it's very reasonable to look for an alternative common cause when a husband and wife are both diagnosed with a relatively rare (non-communicable) disease. Unfortunately, misdiagnosis (both under- and over-) is a prevalent problem in medicine, and neurological disorder can be a particularly difficult group.


Jen, 42, happy partner of James and Moma to Evan, 14, & Lucy, 12.5 (Crohn's dx @ age 3; on Remicade since April 2010.) I take piroxicam, Flexeril, & Nucynta ER nightly. 3 anti-TNFs didn't pan out for me.

"Science is the father of knowledge, but opinion breeds ignorance." -- Hippocrates
Re: A warning about Enbrel
EricHampton #219294 10/13/11 07:58 PM
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gbash Offline OP
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Eric,

My wife was diagnosed with MS 8 years before my diagnosis, and her case has been relatively mild to date. Testing for Lyme disease (and B-12 deficiency) is standard procedure for any nervous system ailments, so we were both cleared of that possibility (and yes, these were high-quality tests). We also live in an area where Lyme disease is extremely rare. Early on, based on input from others about Lyme and lymenet.com, I talked to my neuro about the possibility, and he is confident that this is not Lyme disease, based on all the tests and the high-resolution MRIs (there is some difference between MS and Lyme at higher resolutions), and on subsequent tests.

I believe you are right about TNF blockers hampering the immune system being a factor, but it just doesn't seem to be Lyme disease in this case. There may be some other stealth factor involved.

I went with LDN instead of the MS CRAB drugs, and my wife switched over to LDN also now. I appreciate your concern and advice.


AS symptoms started 1991. Official dx in 2006, with HLA-B27+, SIJ totally fused, bone spurs in back, and extreme rib/hip pain. Other family with SpA. Started Enbrel in 2006 with good results, but stopped in 2010 due to nerve damage. Now getting good results with no-starch diet.
Re: A warning about Enbrel
EricHampton #219306 10/13/11 10:16 PM
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I've not been offered anti-TNFs yet, but if I do, I have to say I am not going to let the possible (rare) risk of MS put me off. For a start, from what I have been reading, drug induced demyelination IS reversible. If the demyelination didn't reverse, then I'd have to assume that I was going to get MS anyway. I take your point about MS as an unlikely presentation at your age and sex, but its not impossible. It is also quite possible that you had had demyelination episodes in the past that were missed, not acknowledged or put down to something else. Not all MS is major or severe episodes, which is why in some people it can take many many years to diagnose, and diagnoses after the age of 50 are actually quite common.

Its not just drug induced MS that can cause neurological problems. I have neurological problems caused almost certainly by my LACK of treatment. Perhaps if I'd had anti-TNFs years ago I wouldn't have the neuro problems I have now. So there are always two sides to every story.


Cauda equina type neurogenic bladder problems. Coeliac disease. Sicca syndrome. Ataxic gait and use crutches. Non-specific gut problems. Current treatment: Low dose naltrexone, low starch diet (Guts shredded by NSAIDs. Previously diclofenac worked well, not eligible for anti-tnfs, hypersensitivity to SSZ). Also short bursts of pred for bad flares
Re: A warning about Enbrel
cemc #219311 10/13/11 10:52 PM
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gbash, I'm so sorry to hear of how this happened to you. I was one of the rare ones to get neuro symptoms from Humira, but luckily now 7 months after discontinuing I no longer have any neuro symptoms. Funny (or not so funny) thing is I also tested positive for Lupus during the same time period. So, even though it's hard to believe, I still have to agree with others above that I think some of us are just already pre-disposed to possibly getting MS or lupus or something to cause the trigger. I just happened to be fortunate that both ended up being negative in the end. I have to say though, given my spondy symptoms, I would do the same all over again. I wish I could back on the Humira most days.

I do appreciate everyone sharing their experiences, but I still believe it's a very rare circumstance. Everyone has to decide for themselves what's best, but I wouldn't let the rare occurrences keep me from trying it again.

Hugs!


Beth
Re: A warning about Enbrel
Banana #219317 10/13/11 11:59 PM
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Originally Posted By: Banana
Just wondering why you started posting now? Promoting No starch diet?

I did have nerve issues with Remicade but I stopped it immediately, and the symptoms went away. Wish you gave more details about when the nerve stuff started and if you stopped immediately etc etc.

Anna


sigh

Last edited by drizzit; 10/14/11 12:00 AM.
Re: A warning about Enbrel
Beth #219318 10/14/11 12:02 AM
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agree Beth it is rare, and for those of us with MS in the family that bit of knowledge does need to be out there before we start the TNF drugs. My mom has MS so I was hesitant for a long time.

I am on simponi anyway and after 2 years have not had any problems but it was a tough decision since my AS is a moderate variety and I get by without the TNF drugs. I was so tired of just getting by though I decided to take the risk. SO far so good but it does play in my mind.

Last edited by drizzit; 10/14/11 12:03 AM.
Re: A warning about Enbrel
EricHampton #219320 10/14/11 12:41 AM
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They do put those warnings on there for a reason...


Rachel
ANA+, HLA-B27+, started Remicade June 2008, switched to Enbrel September 2010, switched to Humira April 2011, stopped biologics September 2011. Fusion already started, 25 years old.
Re: A warning about Enbrel
Rachel01 #219358 10/14/11 12:38 PM
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"sigh" Drizzit


I asked that because he signed up 5 months ago and his first three posts are promoting starch free-and trashing Enbrel. Esp since the MS appear over a year ago. It is fairly common for people with an agenda to do it in that manner. Steve, glad you caught my agenda--as I catch yours.

Gbash, So strange that both your wife and you have MS. If it was Lyme, MTX is the only medication that helps for the long term disease. But as you say, it is only in certain areas. My county is finally, finally no longer #1 county in the country for Lyme. It is such an terrible disease so hard to diagnosis.

Except, maybe your bodies were sympathetic to each other, drawn by something in your cells. I believe that can happen because I saved a epileptic (O2 cut off from helmet strap) and 6 months later met my bushand who is an epileptic.

These awful immune based diseases are all related, there was a gene chart that showed MS on the gene wheel with AS.

Hope it improves, sounds horrible.

Anna



Actema IV once a month (with pre loading for allergic reaction), Cymbalta x1 daily, Arava 20mg daily. Diagnosed with AS in 2004, suffered undiagnosed since 1982.
Re: A warning about Enbrel
Banana #219366 10/14/11 02:39 PM
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gbash Offline OP
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When I first visited this forum years ago, I didn't see any warnings about Enbrel and I saw that it only trashed NSD. If there had been more warnings about Enbrel, I would have been better prepared to quit it at the first signs of problems, which could have lessened the impact greatly. I want to be sure that people understand the risks and are prepared to take immediate action upon any adverse symptoms.

I also now have first-hand knowledge that NSD can be truly helpful in the fight against AS. So, I want people to realize that NSD is a valid option.

This forum should be open to helping all victims of AS, and users should feel free to submit their opinions without being attacked. Sadly, that has not always been the case, which is one of the reasons I didn't start posting sooner on this site (I found other sites to be more friendly). We all have agendas, but a few users of this site seem to have agendas to put down any opinion that doesn't match their own beliefs.


AS symptoms started 1991. Official dx in 2006, with HLA-B27+, SIJ totally fused, bone spurs in back, and extreme rib/hip pain. Other family with SpA. Started Enbrel in 2006 with good results, but stopped in 2010 due to nerve damage. Now getting good results with no-starch diet.
Re: A warning about Enbrel
gbash #219367 10/14/11 02:41 PM
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Humira gave me those side effects specially numbness on my face and now I am supposed to have an MRI and see a Neurologist at the en of the month to rule out MS. I was told by my rheumy that it is usually a side effect from the humira. I was doing great with humira for AS up until now that the rheumy took me off from it. The pain is horrible!!! Hopefully its not MS but who knows.

Damaris

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