A word on neurontin

[Whittlesey]

In reading the good link on GCA/PMR to be given to doctors:

rcpe.ac.uk/sites/default/fi...

it says:

. ". . . However, promising treatment

breakthroughs such as the use of glucocorticoid

chronotherapy in PMR69 and anti-IL6 therapy in GCA70–73

raise the possibility that we will be able to control these

conditions on much lower doses of glucocorticoids and

thus minimise the side-effect burden.. . . " (not sure of the pg. no.)

The information on neurontin is that it can act as an inhibitor for IL 6, which I posted previously (from a search). Will find the post. Believe this may be good news on neurontin - again Dr. is the best. If this is so, neurontin may well help in the anti inflammatory process. My understanding of the research is that they are looking for agents which will inhhibit, killer T cells, IL 6 and others from "growing" at the site of inflammation in the artery. May be very good news.

[polkadotcom]

Have a look at some of the research on tocilizumab. It targets IL-6 receptors and is being trialled over here with very good results.

[PMRpro Ambassador in reply to polkadotcom]

Since it costs 10K a year for a 70kg patient I don't see it being approved in the UK for PMR - do you? Since 70kg is still in my dreams, at my cuddliest I'd have cost more like 15K/year. And MABs have some interesting side effects too.

[polkadotcom in reply to PMRpro]

Yes, they do - but as long as you don't squeak it's ok!

[Whittlesey]

Thanks, polkadot. The neuro opthmologist that I saw, said that Hospital for Special Surgery (HSS, NY) is now doing trials on tocilizumab. He was going to enter me into the trials and then there was some reason, he said to wait, and I can't remember what it is. Agree with you, on this. will call him. This may be one of the ways to deal, long term with GCA and PMR, to stop the dangerous cellular growth.

[Whittlesey]

On the above, I found the link. They speak of a substance "P" that is inhibited. It is not IL 6.

Here is the link:

ic-network.com/iclifestyles...

Text:

"...Neurontin helps to stabilize misfiring nerves by slowing down neurological impulses traveling from the spinal cord out to the peripheral tissues. There is the probability that Neurontin decreases Substance P activity. Substance P is a neurotransmitter chemical in the pain system that carries pain messages through the nerves and stimulates inflammation. Elevated levels of substance P have been found in IC and FMS patients.

It is believed that Neurontin reduces the over-stimulation of nerve endings in IC patients. According to Dr. Seastrunk, a psychiatrist in Texas, "Neurontin also appears to minimize a focal brain injury in Chronic Fatigue Syndrome (CFS) and Fibromyalgia (FMS) patients."

Presumably, part of the brain's limbic system, the hippocampus may be damaged by stress chemicals (such as adrenaline and cortisol) in CFS and FMS patients. The hippocampus is responsible for controlling the stress response network. It also handles pain signals, routing them from the spinal cord to the brain. The nervous system in CFS and FMS patients is thought to be in a state of hyper-stress. Exposure to stress chemicals may cause the development of chronic pain, as well as, memory and learning problems in these patients. The actions of Neurontin seem to minimize the sympathetic pain.

Neurontin as an Alternative to Opiates

Many doctors are relieved to have another option to treat pain besides opiates. There are several reasons for this. For one thing, opiates are the least effective pain drug for treating neuropathic pain. Another problem is that opiates, such as morphine and Oxy-Contin, need to individualized, because patients have different responses to different opiates...."

Link is above.

[Hidden]

arthritisresearchuk.org/art...

follow the link.

[Whittlesey in reply to Hidden]

Thanks, Smoky. Will look at this link.

[Whittlesey in reply to Whittlesey]

Hi Smoky, Have been looking into TOC. Part of the downside with this treatment seems to be there is an increased lowering of auto immunity. With the predisone, we are dealing with that. With TOC, my understanding is that many take it with prednisone. I wonder, if you are dealing with autom immune problems, from the prednisone, and begin with TOC, does it lower it even more?

Because it inhibits the growth of IL 6 and I believe killer t cells, it seems the capability to keep the disease "at bay" is better. May have good possibilities. Hospital for Special Surgery (HSS), NYC is doing trials on TOC. Thanks for sending. all my best, Lynn