Kickas.org Forums Treatments, Drugs and Alternatives Anti TNF and other biological medications Simponi and neuropathy?

Hi friends: I've asked this question before but have a little more information. I've been on simponi for 4 months. I have major twitching and feet tingling and spasms in my legs. I've had two MRI's that ruled out MS. I still have these symptoms and when I went to rheumy he "fired" me for mentioning that I still have symptoms. Is there another test I should be asking for? Im quite disturbed, sad and incredibly frustrated. I'm seeing a new Rheumy in June. Are there symptoms I should be looking out for other than the leg problem? I have no dizziness, eye problems just legs that won't stop driving me crazy. Any suggestions would be helpful but I'm really anxious so please be gentle. Thanks. Kelly

I understand anxious, so here's a gentle ((((hug)))).

In my past, symptoms in my legs (like jumpy leg syndrome) were due to a hormone imbalance. I see you are on progesterone ... progesterone used to do a bad number on me ... I couldn't take it except in low doses (cream) and it had to be non-synthetic (aka natural.) I don't know if that's helpful, but it is a weird thing that no doctor would pick up on. Okay, only maybe a functional medicine doc would.

Kelly - 'think' you might have found the cause - check this out :-

golimumab, Simponi: Drug Facts, Side Effects and Dosing
www.medicinenet.com › ... › arthritis az list › golimumab index
- Similar to golimumab, Simponi: Drug Facts, Side Effects and Dosing
10 Sep 2010 ... Information on the drug golimumab (Simponi), a man-made injectable ... SIDE EFFECTS: The most common adverse effects in clinical studies of ... There are two basic types of pain, nociceptive pain and neuropathic pain.

See 'motor neuropathy', damage to the nerves and all the rest
http://aolbroadband.search.aol.co.uk/aol...fect+of+simponi

http://www.drugs.com/pro/simponi.html
Less common clinical trial adverse drug reactions

Adverse drug reactions that occurred <1% in Simponi-treated patients during the Simponi clinical trials that do not appear in the Warnings and Precautions section included the following events listed by system organ class:

Infections and infestations: Septic shock, atypical mycobacterial infection, pyelonephritis, arthritis bacterial, bursitis infective

Neoplasms benign, malignant and unspecified: Leukemia

Skin and subcutaneous tissue disorders: Psoriasis (new onset or worsening, palmar/plantar and pustular), vasculitis (cutaneous)

Vascular disorders: Vasculitis (systemic)

Other clinical trial adverse drug reactions in ulcerative colitis clinical trials

In the Phase 2/3 trials in UC evaluating 1233 Simponi-treated patients, no new adverse drug reactions were identified and the frequency of adverse drug reactions was similar to the safety profile observed in patients with RA, PsA and AS.

Post-marketing Experience

The following adverse reactions have been identified during post-approval use of Simponi. Because these reactions are reported voluntarily from a population of uncertain size, it is not always possible to reliably estimate their frequency or establish a causal relationship to Simponi exposure.

Immune System Disorders: Serious systemic hypersensitivity reactions (including anaphylactic reaction) [see Warnings and Precautions (5.10)], sarcoidosis

Neoplasms benign, malignant and unspecified: Melanoma [see Warnings and Precautions (5.2)]

Respiratory, thoracic and mediastinal disorders: Interstitial lung disease

Skin and subcutaneous tissue disorders: Skin exfoliation, rash
Nervous System Problems

Rarely, people using TNF-blocker medicines, including Simponi, have nervous system problems such as multiple sclerosis or Guillain-Barré syndrome.

Tell your doctor right away if you get any of these symptoms:
vision changes
weakness in your arms or legs
numbness or tingling in any part of your body
Other side effects with Simponi include:

Immune System Problems. Rarely, people using TNF-blocker medicines have developed symptoms that are like the symptoms of Lupus. Tell your doctor if you have any of these symptoms:
a rash on your cheeks or other parts of the body
sensitivity to the sun
new joint or muscle pains
becoming very tired
chest pain or shortness of breath
swelling of the feet, ankles, or legs

------------------ ##
http://aolbroadband.search.aol.co.uk/aol...%20of%20simponi

And loads more info on Simponi side effects and on other biotherapies on the internet. So yes. Get another test. Doppler plus EMG of legs - this last can be painful, depends on the techie !

As for the rheumy - print off some information for him. Put in the post for his attention, and don't bother seeing him again. Hope your new rheumy is more up to date...

Meantime, try looking at the diet forum and also the alternative forum - LDN (low dose Naltrexone) has proved highly efficacious for a number of ASers - including myself. Keeps the inflammation at bay.)

Take care -

Have you been checked for restless leg syndrome? It sounds like you need to talk to a neurologist. Just a thought.

Wait - your rheumy actually asked you to leave just because you still have symptoms?!

It sounds like you need a new Rheumy. My Rheumy never bails on me and I can be needy at times. I was on progesterone in the past and my body couldn't handle it. Have you tried going off the progesterone to see if your symptoms go away? Hopefully it is not due to the Simponi. If you can't take biologics, I would give LDN a try. It helps me a great deal.

Get checked for Diabetes.

Thanks everyone. I will keep on trekking, waiting on a new Rheumy and neuro...I have been tested with the electronic thingy and it was negative but my feet keep on tingling and spasming. Walking helps but doesn't stop it. Anyway, I'm hoping for answers because this is driving me nutso. I'm pretty sure I don't have diabetes neauorpathy but will get checked. My diet is fairly clean. It's hard not to get discouraged. I'm glad you are all here.

Kelly

Even if your nerve studies are normal, you can still be getting some nerve-type pain signals that feel like buzzing or tingling or numbness. I have a pinched nerve or two in lumbar spine (causes some sciatica on left side and some thigh pain on the right at a different level) along with a pinch in cervical area that causes nerve pain around shoulder on right. None of these showed any problem on the nerve studies, yet the epidurals I've had totally obliterate it.

On re-reading your initial post, I see you also mention twitching. Not sure what could cause that, unless possibly a motor nerve is getting squeezed somewhere. I'd see if the neuro can tell what it might be. Have you had a fasting glucose test done? If so, what was the result? Or have you had an A1c done? Those are good tests for diabetes (A1c isn't diagnostic yet, but is on the way). Hope you don't have to wait long for your appts. GOod luck.