Kickas.org Forums Treatments, Drugs and Alternatives Anti TNF and other biological medications "rare" Remicade Info

Hi CJS

So you have started the Remicade Injection ,Best of Luck from my side.
I pray to God that this drug help you in eliminating all symptoms of this chronic disease.
Well my recent HLA-b27 test is positive,it was carried out in special HLA tube
which was not the case when earlier it was done.
I am taking SAZO + Ayurvedic treatment and joined Yoga classes.This may help me.

Mr Dragon Slayer on this site is a very helpful person he has sent me a lot of info on
Probiotics,NSD diet & other helpful things.
You can also take his assistance on fasting techniques which are really helpful.
Earlier I thought that this disease is like some injury to intervertbral discs and will get healed out in 2-3 yrs but seven years have passed it is only increased and increased.

I will first download ftp program and contact you.
Thanks for reply

Hi cjs! I have a friend with AS who is taking Remicade. She just got on Medicare (was on private insurance and divorced) and it seems they'll only pay 80%. You mentioned that you have some info on how doctors are getting it paid for. She's getting the infusions and really needs it. Any info you can give me would be greatly appreciated. Take care - Anilyn

Hi cjs,
How are you getting on with the Remicade? Are you still feeling pain relieving benefits? What percentage of improvement do you think you have experienced since starting the Remaicade?

I've just had my second infusion of Remicade last week, I'm only guarantied 4 infusions, as I'm having it on a study basis, over here in the UK. I went through the same emotions as you did, when having my first infusion. I think I'm feeling some pain relieving benefits, possibly 20%, especially when awakening in the morning. But seem to be experiencing a constant sore throat & have had cold like symptoms for the last 5 weeks or so.

I'm not taking any other medications along side the Remicade, apart from occasional pain killers, not the NSAID's though, as my stomach finds it difficult to tolerate them these days.

Take care & hope you experience many more pain free days.

Best wishes.


George.


Together we'll beat AS!

What about the caveat "if you have infections..." I am on Enbrel (1 year) and prednisone (2 years) and Enbrel has gone from relieving 95% to only 50% of my pain. Doctor considering Remicade. I have had near constant sinus and upper respiratory infections for three months -- having to stop Enbrel and take antibiotics. NSAIDs have failed me (allergies, stomach problems) so what am I supposed to do now?

HI BOROBOY,

Hi George,

Congratulations.

The Remicade is still working well for me, or I am having a big remission or a combination of the two. What ever it is I am really enjoying it J

Still have some AS symptoms that are very familiar to me, that funny feverish / inflamed feeling comes over me when I smoke too much or do other bad things to my body, but over all things have been going well.

My stuffed up nose has lasted for about two months and a cold has been dogging me for the same two months, I assume both are a result of the treatments but compared to the pain symptoms I had before I am fine with the runny nose.

I have begun to notice that other folks don’t seem to get as much pain relief from it as me and was wondering if since I have two replaced hips and therefore a higher ratio of Remicade to inflammatory process.

By the way, it seems to me that if you are donating your body to a study that the folks who are doing the study would have an obligation (ethically and morally) to continue your treatment if it is working for you. I have a good friend in London that works for the “right” side in medical law. I have no idea how medical ethics transfers internationally but in Canada, taking someone off a trial medication that is working for them is not considered to be very polite, especially considering the generous contribution you have made for the good of all mankind. I can ask him what he thinks if you like.

I’m currently re-discovering the benefits of regular exercise; gee I forgot how good it makes you feel to move.

Thank You for your generous contribution in the fight against AS, I really appreciate it and I know the majority of AS suffers appreciate it.

Cheers,

Chris

Hi again Chris,
Thanks for your very nice reply, I'm just happy I've talked to someone else taking the same mediaction.

Looks like your experiencing the same cold like symptoms as I am, I have a slight sore throat at the moment & my ears seem bunged up, feeling slightly deaf, pardon! But I can tolerate that, It'll be interesting to see how I go after my third infusion, which is due on the 25th of Feb?

It was very difficult for me after my first & second infusions, as I didn't know what to expect & did'nt know what was going on with my body? But I seem to be over that now & hoping for a better future? I think better understanding & the offer of possible counselling from my Rheumy dept, before I had my first Remicade infusion may of helped, but my Rheumy dept seem very busy & I'm not knocking them, as they've been brill.

I had to push my Rheumy very hard before he then gave me the chance to start this Remicade, on a study basis, so I've got to give him credit for that, as far as I can make out though, it's the drugs company that are sponsoring my treatment. But if it works sufficiantly well enough, I'm going to stay quietly optermistic about further infusions, which would be paid for by the Rheumy dept, but there's no guarantees. Just what I've heard & picked up from staff around the dept.

I did feel like discontinuing the treatment a few times in the earlier days of my infusions, due to suffering from heavy cold like symptoms, but I'm now glad that I didn't. I've not had the big wow factor though! Just seemed to be a gradual impovement with my pain levels, especially when awakening. The best way I could describe the Remicade treatment, is that it suppresses AS to a degree, well that's how it feels to me! I'm not taking Methotrexate alongside Remicade, as I've tried Metho in the past, but couldn't tolerate it. I havn't taken NSAID's on a regular basis now for over 3 years, due to stomach probs (IBS), which also has seemed to improved with the Remicade infusions.

I'm not 100% pain free though, perhaps I was expecting to much from Remicade, but without a doubt it has helped, don't know for how long either? I'll also have to keep an eye on my side affects & if things got to bad I would discontinue the treatment, but I'm trying to stat optermistic.

Well I've got that lot off my chest, I do appologise!

Take care & enjoy those extra activities of yours & thanks for listening.

George.






Together we'll beat AS!

Hi Deb,

I am no doctor but...

from what I understand the lung infection thing depends. I was really worried about it and specifically asked my doctor about it. He basically said something like “If your really really sick Remicade is not for you, but your not and it has show great results.” I guess a doctors definition of “really really sick” is different from mine but he did give me a chest X-Ray cause if you have TB the Remicade will kill you.

For your upper respiratory infection you should ask your doctor. I highly recommend preparing a written list of concerns for your Doctor with the most important issues at the top. The infection question was at the top of my list.

FYI the literature I was quoting from was a few years old and they are learning more about the stuff everyday

When I was on prednisone I was getting infections about once a year. I suspect that it was contributing to that. With the Remicade I have had a "cold" for a few month, before that a sore throat. Now the cold seems to come and go, but it is cold season here in Montreal.

Keep on kicking AS!

Chris

testing

Dear Chris,

My doctor wants to move me from Enbrel to Remicade, starting in a week or so. I've been trying to find something about the differences between these two... would the CD you mention cover anything like that ?


elaine
Anchorage Alaska

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