Re: Question regarding full body bone scan for rheumat

[Guest guest]

In a message dated 1/30/10 4:09:39 PM, kathy_d87@... writes:

No, I cannot take Remicade because I can't take Methotrexate. The rheumy said you cannot take Remicade without Methotrexate. I failed injectable methotrexate, and unable to take it by mouth.

**********

I am scheduled to take my first Remicade infusion on Monday, and I am not on Methotrexate. In fact, I am allergic to Methotrexate (I developed severe pustular psoriasis after ingesting one pill). Instead, my rheumy has me on Imuran to control possible Remicade allergic reactions.

I sure hope the Remicade works, as I have run out of other options. I have had RA for 30 years and recent x-rays of my hands and feet show severe progressive erosive damage to my joints, according to an email from my rheumy. Fingers are crossed .

Regards,

Santos

[Guest guest]

Hi- Thanks for the update.  Their are other DMARDS not limited to but including sulfasalazine-Arava-Cyclosporine which is an older drug but a simple soil fungus with TNF properties, as well as gold and a host of others.  I was very well managed on Cyclosporine therapy the first 5 years then switched to remicade.  Fortunately for me, MTX works well for me.  It manages my disease without Remicade for several months which is uncommon for most patients.  I have been able to go longer and longer periods without Remicade but I have had therapy since 2000 and well managed disease. There are new Biologics in the pipeline.  The inflammation cascade that causes pain and disability can be interrupted.  There is a giant chain of DNA which makes up our immune system.  The white blood cells are what cause the problem.  So, in essence If DNA is the Car, then the white blood cells are the driver. The cells must communicate with each other so they know what to do.  Now imagine that conversation is interrupted by a BIOLOGIC.  It works as the brake system so the Car and the Driver cant interact as they normally do. After a while, the driver through its inability to speak to its fellow cells learns other ways to get around the obstacle. Maybe the driver learns he can put the car in Neutral and push it along or modify the car so it doesnt need brakes at all.  The body can get smart and find away around the obstacle but it has not happened to me yet.  This is why other biologics are being researched so that if our bodies out smart one drug another alternative is there.  One day I am sure they will find a way to reset or restore our normal immune system.  Instead of attacking us, it will once again defend us.  We just have to find the key that will reverse the process.  Remember!!!!!! This is key and I cannot stress this ENOUGH.  DEMAND A SLOW INFUSION TIME.  Be sure to take tylenol and either claritin or benadryl before hand.  Be sure someone comes with you.  Your chances of having a reaction will be so much less if you are infused over four hours instead of two.  You can sleep through most of it if you want to. An infusion rate of 10-20-40-80-120-150-180-200-230-250.   Bring an electrolyte solution with you and drink hot liquids, ask for tea or bring a large thermos of herbal tea.  Keeping yourself hydrated will help the drug dissipate into your system.  It heads straight for your stomach and abdomen where it is absorbed first.  It was created to help crohns patients initially.  You will feel it working.  The solution itself can dehydrate you.  Try to avoid caffiene a day before your infusion and drink plenty of water, tea, juice.  Eat light the day before.  Soup and toast for dinner.  Depending on how you feel, make a snack or sandwich to take with you also, just incase you feel hungry.  Some people feel listless and tired afterward or a little hyper.  Food can dissipate the feeling.  Listen to your body.  It will tell you what to do.  Another MUST HAVE. Before the IV is put in, have them apply a HOT and I do mean HOT not warm wet compress to your arm. It will relax the tissue and the veins as well as bring them to the surface.  You might not need lydocane injection if you use the compress. Do not get the IV in your hand.  Scar tissue will form quickly over a few infusions and it will blow the vein. The inside of your elbow always. The juciest largest " pick me " vein.  Some IV nurses want to use smaller veins that are harder to tap.  Dont let them.   The IV will go in alot easier if you arent dehydrated.   Use one arm for blood work only and the other arm for the IV.  I would suggest the arm you dont always use.  I leave my left arm for IV as I am right handed.  Make sure you have someone who is experienced and confident in administering IV's. After ten years, I can tell you this will work.  Lots of luck!!! Let me know how it goes.  Yours, Deborah 

On Sat, Jan 30, 2010 at 10:54 PM, <BeingIrish@...> wrote:

 

In a message dated 1/30/10 4:09:39 PM, kathy_d87@... writes:

No, I cannot take Remicade because I can't take Methotrexate. The rheumy said you cannot take Remicade without Methotrexate. I failed injectable methotrexate, and unable to take it by mouth.

**********

I am scheduled to take my first Remicade infusion on Monday, and I am not on Methotrexate.  In fact, I am allergic to Methotrexate (I developed severe pustular psoriasis after ingesting one pill).  Instead, my rheumy has me on Imuran to control possible Remicade allergic reactions.

I sure hope the Remicade works, as I have run out of other options.  I have had RA for 30 years and recent x-rays of my hands and feet show severe progressive erosive damage to my joints, according to an email from my rheumy.  Fingers are crossed .

Regards,

Santos

[Guest guest]

Interesting info about Remicade. When it was first introduced to the public my

doctor said it wasn't an option for me. He suspected that I couldn't take the

methotrexate but he wanted to document it for the record. Then he tried me on

Humira and that failed (after 4 years) Enbrel (which lasted only a couple of

months).

A PA mentioned Arava and the rheumy said that with my medical history he didn't

think it would be a good drug to try since I have severe anemia.

>

> Hi- Thanks for the update. Their are other DMARDS not limited to but

> including sulfasalazine-Arava-Cyclosporine which is an older drug but a

> simple soil fungus with TNF properties, as well as gold and a host of

> others. I was very well managed on Cyclosporine therapy the first 5 years

> then switched to remicade.

[Guest guest]

If you cannot get relief with the more common treatments you

might consider antibiotic therapy with tetracycline derivatives such as

Minocycline. These are generic medications so there is no incentive for

drug companies to fund the expensive clinical trials used for new drugs but all

of the limited-scale clinical trials I have seen seem to show about equal

success to the more common treatments. Because of the scarcity of

controlled trials some rheumatologists will not use them, but because of the

large volume of case histories other rheumatologists use them freely. I hope

you get success with some treatment. God bless.

Antibiotic Therapy - Road Back Foundation

http://www.roadback.org

From: Rheumatoid Arthritis

[mailto:Rheumatoid Arthritis ] On Behalf Of kathy_d87

Sent: Sunday, January 31, 2010 2:29 PM

Rheumatoid Arthritis

Subject: Re: Question regarding full body bone scan

for rheumat

Interesting info about Remicade. When it was

first introduced to the public my doctor said it wasn't an option for me. He

suspected that I couldn't take the methotrexate but he wanted to document it

for the record. Then he tried me on Humira and that failed (after 4 years)

Enbrel (which lasted only a couple of months).

A PA mentioned Arava and the rheumy said that with my medical history he didn't

think it would be a good drug to try since I have severe anemia.

>

> Hi- Thanks for the update. Their are other DMARDS not limited to but

> including sulfasalazine-Arava-Cyclosporine which is an older drug but a

> simple soil fungus with TNF properties, as well as gold and a host of

> others. I was very well managed on Cyclosporine therapy the first 5 years

> then switched to remicade.

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