Kickas.org Forums Treatments, Drugs and Alternatives Anti TNF and other biological medications Remicade & possible side affects

Kat,
My rheumy dept are not really up on Anti TNF, as it's relatively new here in the UK. I was the first person within my dept to be given Remicade 4 years ago, on a trial basis, funded by the drugs company. After that I had to fight for funding, hospital NHS wouldn't pay, as it wasn't NICE approved. Managed to gain funding from my local PCT (primary care trust), with help from my very supportive GP. Probably due to the fact that I was only taking 100 mg every 12 weeks, so cost low.

Initially when I was on the normal dosage level (trial period), my ALT's hit the roof, think they went up to around 2000. I then came off Remicade for 6 months, thank goodness my ALT's returned to normal. I then suggested if I could go back onto Remicade on a lower dose basis, my Rhemy agreed.

I generally seem to be very sensitive to medication, had to stop taking NSAID's year ago, due to stomach probs. Couldn't tolerate Methotrexate either.

At the moment & for the last 6 months have been feeling very run down & seem to be more open to infections. So I now feel it's the time for me to stop the Remicade & try & cope with AS life without Remicade.

Thanks again for your input

Hi Oak,

I am curious about your fibromyalgia symptoms with AS. I too have been told I have fibro but I can't differenciate between the two for symptoms. Maybe you could enlighten me.

Thanks,

Sharl

George, that is too bad. I know the day may come when I have to make the same decision and based on how I feel just prior to my infusion, I do not look forward to it in the slightest.

Have you looked into Low Dose Naltrexone? There's a discussion about it over at the Pharmacy. A few people are trying this now and seem, in the main, to be responding well.

I had ulcers within 8 months of starting on NSAIDS. Not fun at all, I know.

Must fly.

Hugs,

Kat,
A bit of good news from my rheumy dept. I went in & explained how I was feeling about the treatment etc. To my astonishment, the new head nurse listened & suggested that I could have the Remicade infusions on a as and when required basis. Basically due to the fact that my infusions levels are now so low. They also said that it would also be ok for me to have a few months off to see how I feel.
The old head nurse was very unapproachable, her philosophy was either you take it as stated or you don't take it at all. She has now left the department. I'm feeling allot happier about things now. In my opinion treatment should be tailored to the individual not vice versa. The old head nurse would have none of that. Suppose that's the NHS for you.
14 weeks on from my last 100mg Remicade infusion, just starting to feel my AS a bit more now. Still not taking any other meds. Still exercising.
The way I'm feeling at the moment, I shall have a short break off Remicade & then start again. Probably having 100mg Remicade infusions every 14-16 weeks. I know it's not protocol, but it's what would work for me. I must be lucky to get away with such a low dose.

Best wishes.

George.

Wow, George, that's great news! I hope you can continue like this.

Doesn't it just blow you away how they try to lump us all in together when it comes to treatments? Like we're all exactly the same in every way. You'd think that with all the 'revelations' about how women and men are different biologically and, therefore, in the way diseases progress in them, maybe the medical community might figure out that treatments don't work the same way for everyone. Sigh. At least you have one that's listening now.

Good luck with the new, tailor-made treatment plan.

Many hugs,

Hi Oakleaf,

How do you differentiate your Fibro from your A.S.?

Sharl

just read your post here....I haven't read everyone's responses,so I may be repeating. I'm taking no drugs & have that tension & pain in the occipital region (base of head/scalp area). Feels like whiplash and can't seem to get that area to relax.

so maybe it's an AS symptom.

Quote from emedicine article (http://www.emedicine.com/med/topic2700.htm)

"Patients also are prone to atlantoaxial subluxation, which may result in cervical myelopathy."

That atlas is the first vertebra below the head and the axis is the second one.

I happened to be rereading the article last night and remembered that tidbit.

Also, the nuchal crests are a common site for enthesitis in AS. The nuchal crests are ridges on the skull a couple of inches above where the vertebral column attaches. There are two on each side and they run horizontally.

Karen

PS I knew memorizing all of that human anatomy this semester so I could teach it was going to be good for SOMETHING!

those kind of articles make me angry... they always say 'mild pain that goes away with activity, etc" and seem to paint a picture that AS is something that is easy to cope with for most everyone... and that AS presents the same for everyone (except women), etc., etc., etc..... so I would always read these articles about AS and think I was being a 'baby' about my pain & problems, so I'd ignore the flares. at least they could say 'severe pain on flare-up' instead of tenderness in si joints....

my rheumy says its impossible to tell how much of the pain is from AS or fibro my remicade treatments are working so i figure a little of the pain is AS but most of it is the fibro....but in truth there is no way to tell which is causing the most of the pain i take darvocet to get thru the pain.....oak