Re: compression of occipital nerve

[Guest guest]

Dear Lynda- I would not put anything past those white blood cells attacking any part of your body. You can have RA and Lupus at the same time in fact. Since your body thinks its an infection the white blood cells will attack anything and everything if the disease is left unchecked. MTX only slows the cells from dividing but does little good with aggressive disease like yours. You could apply directly to the company that makes Remicade......Centocor. I remember when, while being on MTX during my first year DXed with RA, I kept going to see my then Rheumatologist with terrible flares. The doctor just shook his head and said, " Im sorry but there is nothing more I can do! " and at that time it was true. There were no biologics back then BUT that didnt stop me. I went to the library and took out the MERK manual to read up on connective tissue diseases as well as all the medical information on drug trials I could find. I started on Cyclosporine soon after that and it did manage my disease. It is a TNF binding agent and has anti malarial properties but is a transplant rejection drug that has been around for a very long time. It is a soil fungus. Run that by your RD and see if you can be approved for it. It managed my disease for a full five years before I switched to remicade. I hope that helps you a little. Yours, Deborah

On Wed, Jul 30, 2008 at 6:30 PM, kenneth194542 <lynda.parton@...> wrote:

I have been taking methotrexate for 18 months now and have found this

to be of a little help though still suffering much pain and ongoing

disability due to RA.

I have also been suffering from dreadful headaches down the left side

of my head and face and saw my Rheumatologist last week. After a

full examination etc. he said he thought I had compression of main

occipital nerve. He prescribed a drug call amytrypilene which is

supposed to numb the nerves. However, after 2 days on this drug I

had to abandon it because I was completely knocked out by it and

simply could not function in this state. In addition to my RA I also

suffer from osteo arthritis and severe spondylosis of neck, so this

may be the reason for this trapped nerve.

I am also suffering from very bad tinnitus in my right ear and after

examination my Consultant said that there is a condition called auto

immune disease of the inner ear and is highly likely that this may be

the case with me, and I am now waiting for a head and neck scan in

order to look at the ear. If this is the case then it seems that it

is very hard to treat and deafness almost always happens, and usually

the other ear follows suit.

I live in UK and it's very hard to get anti TNF drugs. My Consultant

has put me forward for one of these drugs and I shall find out in 2

weeks whether I have been funded to go on it.

In the meanwhile I am feeling very down with all of these problems.

People just never imagine that an auto immune illness like RA can

cause so many problems, we sufferers know all about it but others

think, oh! just a bit of knee ache etc. if only they knew.

Has anyone suffered from this ear complaint or compression of

occipital nerve, I would be grateful for any feedback.

Best wishes

from Lynda

[Guest guest]

Dear Deborah, Thank you for your information. I feel my poor body is going through a bad time at the moment and I hope very much that when I see my Consultant on Friday (8th August) he will tell me I have been allowed to try an anti TNF. I have had a very bad time of late and especially during the past few days - have had the flare up from hell !! Will let you know what happens after I attend clinic. best wishes - Lynda Deborah Bargad <dbargad@...> wrote: Dear Lynda- I would not put anything past those white blood cells attacking any part of your body. You can have RA and Lupus at the same time in fact. Since your body thinks its an infection the white blood cells will attack anything and everything if the disease is left unchecked. MTX only slows the cells from dividing but does little good with aggressive disease like yours. You could apply directly to the company that makes Remicade......Centocor. I remember when, while being on MTX during my first year DXed with RA, I kept going to see my then Rheumatologist with terrible flares. The doctor just shook his head and said, "Im sorry but there is nothing more I can do!" and at that time it was true. There were no biologics back then BUT that didnt stop me. I went to the library and took out the MERK manual to read up on connective tissue diseases as well as all the medical

information on drug trials I could find. I started on Cyclosporine soon after that and it did manage my disease. It is a TNF binding agent and has anti malarial properties but is a transplant rejection drug that has been around for a very long time. It is a soil fungus. Run that by your RD and see if you can be approved for it. It managed my disease for a full five years before I switched to remicade. I hope that helps you a little. Yours, Deborah On Wed, Jul 30, 2008 at 6:30 PM, kenneth194542 <lynda.partonbtinternet> wrote: I have been taking methotrexate for 18 months now and have found this to be of a little help though still suffering much pain and ongoing

disability due to RA. I have also been suffering from dreadful headaches down the left side of my head and face and saw my Rheumatologist last week. After a full examination etc. he said he thought I had compression of main occipital nerve. He prescribed a drug call amytrypilene which is supposed to numb the nerves. However, after 2 days on this drug I had to abandon it because I was completely knocked out by it and simply could not function in this state. In addition to my RA I also suffer from osteo arthritis and severe spondylosis of neck, so this may be the reason for this trapped nerve.I am also suffering from very bad tinnitus in my right ear and after examination my Consultant said that there is a condition called auto immune disease of the inner ear and is highly likely that this may be the case with me, and I am now waiting for a head and neck scan in order to look at the ear. If this is the case then

it seems that it is very hard to treat and deafness almost always happens, and usually the other ear follows suit.I live in UK and it's very hard to get anti TNF drugs. My Consultant has put me forward for one of these drugs and I shall find out in 2 weeks whether I have been funded to go on it.In the meanwhile I am feeling very down with all of these problems. People just never imagine that an auto immune illness like RA can cause so many problems, we sufferers know all about it but others think, oh! just a bit of knee ache etc. if only they knew.Has anyone suffered from this ear complaint or compression of occipital nerve, I would be grateful for any feedback.Best wishesfrom Lynda