Need expertise on B12/remicade

[tinglebell]

Hi I replied in the neuropathy forum last month:

#2 07-04-2007, 06:44 AM
tinglebell
New Member Join Date: Feb 2007
Location: Florida
Posts: 16
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Hi, I was doing a search about remicade and came across this. I have had 2 doses of remicade, for crohn's and related arthritis, last one 8 days ago. 2 weeks after my first dose, I started feeling a vibration sensation from my hips down. (I have B12 neropathy, but has been improving very slowly.) Now, 4 weeks later most of my sx I had with my original B12 deficiency have come backin full force. Sparky feelings, soreness of skin esp of facial area, low back discomf, and memory problems. I did find one site that listed worsening neuro sx assoc with demyelinating disease such as MS. I showed this to my doc (hematologist) after my sx started and had never seen this happen. He said to try another dose and if I got worse the sx would go away after stopping the drug. At this point there will not be another dose.

Since this response, my docs (PMD & NEURO)talked me into trying another dose, which was on 7/23 (3rd dose). My sx started getting even worse, almost as bad as when my problems began, so last week I called and got an order for a B12 test. Sure enough, it came back 208. When I started out it was 136 but had risen to over 400. (At one time 4 mos ago, they told me to cut down to shots once a month instead of every 2 weeks because my level was too high.) I had just had a B12 shot the day before blood test (brain fog) and I also take SL methyl 3000 mcg every 2 or 3 days.
What I wonder is, does the remicade eat up the reserve so much? Or is the remicade just toxic to the neuro sx. Why would my levels drop? And would these sx go away if I stopped remicade. So far, it hasn't helped me and have been weaning off prednisone at the same time, so now my joints are starting to ache again on top of all my neuro sx. :eek:

[rose]

Hi,

I remember you, but no the original details.

If I had a response like that, I would probably not take another dose of a drug suspected of causing it either.

Do I understand you correctly? Did you say that you had a B12 shot within a day or so before the B12 test and it was that low??????

I can't sort out what might be happening without knowing what doses and types of B12 you had been taking prior to each test, and for how long. Also, what you had been taking, or had been given, for weeks prior to each test.

Can you give me a good timeline with that information?

rose

[tinglebell]

Thank-you Rose. I have been on B12 injections every month for almost 2 years steadily. At first I took them weekly for several months (on reading your advice and other sites) and also take B12 sublingual every few days but not regularly. My initial level was 136 before starting anything, (and had been for 2 1/2 yrs I found out later) I give it myself, and even displayed my technique to the doc because the level was going up so slow. In the meantime I switched docs and she told me to take the shot every 2 weeks. I was a healthy crohnnie RN for 38 yrs. But had 3 resections along the way. Anyway my level went up as far as 350-400 and always had the test before the shot was due. Then about 6 mos ago, I had a level drawn, and realized I had just taken my shot and a SL dose. I got a call from the doc's nurse to cut down on the shots from 2 weeks to 4 weeks. I knew the level was off kilter (over 1000) because of the shot the day before. So I was feeling pretty good, didn't know how good until I sarted remicade about 13 weeks ago. Almost 3 weeks after the first dose, I started feeling vibration sensations in my legs, thought I was really going nuts now. I looked up the side effects of remicade and it states that if you have any numbness/ tinglings make sure your doc knows. So I discussed it with him and it said to try it again because he didn't think that remicade was the problem. I have had 2 more doses since and I can hardly believe it. I am almost right back to my worst state. I have very little concentration/distracted easily and the neuropathy is horrible. I have tripped and fallen twice in 3 weeks. I was due for a B12 shot, it had been 32 days, when I requested and got another B12 level done. The covering nurse called me the next day and said that my level was a little low, 208, and for me to take it weekly x 2 months and then monthly. He even asked if I was comfortable to give my own shot. I wanted to get real mean, but I held my tongue and said yes, and that the level was extremely low especially for me with my history. I don't know who to see- GI who has me on entocort and aciphex-Rheumy who ordered and tapered my prednisone-Neuro who said there have never been any studies done on B12 def and remicade-Hematologist who gives me remicade- or my Internist who prescribes my B12. Sorry this is so long, but my thoughts aren't exactly straight either.

[rose]

I have not studied this, and I do not have a background as a pharmacist. With that said, I find some indication that the drug may have affected your liver, which would be likely in turn to affect your B12 stores.

And, of course, central nervous system and peripheral nervous system symptoms are also mentioned as among most commonly observed.

Anything that messes with the liver can mess with nutrients, which can cause nerve problems, etc.


Here is an excerpt from one of the letters on the FDA site:http://www.fda.gov/medwatch/SAFETY/2004/safety04.htm#Remicade

Body as a whole: allergic reaction, diaphragmatic hernia, edema, surgical/procedural sequela
Blood: pancytopenia
Cardiovascular: circulatory failure, hypotension, syncope
Gastrointestinal: constipation gastrointestinal hemorrhage, ileus intestinal obstructionintestinal perforation, intestinal stenosis, pancreatitis, peritonitis, proctalgia
Central Peripheral Nervous: meningitis, neuritis, peripheral neuropathy, dizziness
Heart Rate and Rhythm: arhythmia, bradycardia, cardiac arrest, tachycardia
Liver and Bilary: biliar pain, cholecystitis, cholelithiasis, hepatitisMetabolic and Nutritonal: dehydration
Musculoskeletal: intervertebral disk herniation, tendon disorder
Myo-, Endo-, Pericardial and Coronary Valve: myocardial infarction
Platelet, Bleeding and Clotting: thrombocytopenia
Neoplasms: basal cell, breast, lymphoma
Psychiatric: confusion, suicide attempt
Red Blood Cell: anemia, hemolytic anemia
Reproductive: menstrual irregularity
Resistance Mechanism: cellulitis, sepsis, seru sickness
Respiratory: adult respiratory distress syndrome, lower respiratory tract infection (including
pneumonia), pleural effusion, pleurisy, pulmonary edema, respiratory insufficiency
Skin and Appendages: increased sweating, ulceration
Urinary: renal calculus, renal failure
Vascular (Extracardiac): brain infarction, pulmonary embolism, thrombophlebitis
White Cell and Reticuloendothelial: leukopenia, lymphadenopathy

[bolding added by rose]

A discussion followed about people who were given: REMICADE + MTX

rose

[tinglebell]

Thanx so much for the info. Turned out I ended up in the hosp for 2 days this week, with neck and head pain, vom/dry heaves and then diarrhea. (Maybe it was the meningitis side effect) lol. My potassium level was drawn first thing, by the er nurse when iv was inserted, but never checked for over 6 hrs, it was 2.4. Now which came first I don't know. Since getting replacement in the hosp, my neuropathy feels sl better, but also took another B12 shot (now every 10 days per the doc. Repeat labs will be done Wednsday, so I will see if they will check the liver levels. Then I saw my Rheumy the next day and of course he wants me to continue the remicade. And since I'm off prednisone, take 2 es tylenol for pain since I can't take nsaids (I didn't even ask him for meds.) Oh, and I have 2 different types of arthritis, Osteo and spondylitis. I feel like I have to be hobbling into the office before getting his attention. My whole purpose is to end up not deformed, not because I like to make social calls to the docs. Whew, it's been a bad week. But at least I lost 6 of the 30 # I need to lose from the pred.

[rose]

Whew. It certainly is to your credit that you haven't lost your sense of humor.

Best wishes,

rose