Remicade users

desiresdestiny

Anyone here on remicade? What has your experience been? Side effects etc. I have ankylosing spondylitis. I'm currently on enbrel but my doctor is switching me to remicade once the insurance company approves.
Thanks

GaleHawkins

@desiresdestiny I have been living with AS for over 40 years (after they found a name for my problems). The doctors wanted me to start on Enbrel Nov 2014 he said in Aug 2014. I was very weak and was concerned it would be too much in my case. On a fluke 30 days before I was to start Enbrel I cut out sugar and all forms of all grains. 15 days later my cravings just faded quickly. 30 days in my joint/muscle pain of 40 years dropped from a subjective 7-8 to 2-3 which is like NO PAIN and 19 months later my I am still Rx med free and not under a doctor's care. Well through the years I did earn an OD degree (SCO 1986) and I have been researching AS since 1976.

What works for me may not work for you we all know. What I do know is my health and health markers are better now at 65 than at 45 and I fully expect they will be better at 75 than today. Oh a big surprise for me was after 40 years of life defining IBS or what ever it was resolved and over a year later has not return. I could go on and on.

I expect you may find a way to eat that can help. Actually I did some mowing with a farm tractor late today, when into town with my son to eat and walked my 1/4 mile daily walk and typing this at midnight.

Thanks for sharing your story. There are more and more of us finding ways of eating letting us safely become Rx free in many cases especially some that are diabetic. Even when we can just reduce our needed Rx meds it can more quality to our lives.

Sued0nim

As AS / inflammatory arthritis are progressive diseases where flares lead to further damage a medical assessment of the timing and need for DMARD or biological is fundamental to maximising long term outcomes. Unfortunately in my country the biologicals are rarely prescribed until traditional like sulfasalazine, methotrexate etc routes are tried, increased and discounted, even then it's a fight

Dietary intervention can be an important part of an individual's approach to managing their disease but it is unconscionable for anybody on an Internet fora to advise / intimate that specific medications are to be avoided. That is very much in the hands of the patient and their med team

OP I would recommend kickas.org as a much better forum for advice re AS and treatments

GaleHawkins

@desiresdestiny I agree checking out kickas.org/ because the UK seems to have given AS more attention medically speaking.

kickas.org/ubbthreads/ubbthreads.php?ubb=showflat&Number=389345
Some comments but here is one you may relate to:
04/24/10 01:55 PM Re: klebsiella - lactose fermenting [Re: Tinkerbell]
finnari Offline
Veteran_AS_Kicker

Registered: 06/02/07
Posts: 514
Loc: phoenix
For whatever reason cuttin out white sugar has been a blessing for me. I already cut out starch and dairy. I feel almost as good the last week as I have with my enbrel working (when I was on it).


thedailyhealth.co.uk/low-starch-diet-ankylosing-spondylitis-00044/

The findings of Dr. Alan Ebringer, Prof of Immunology at King’s College London I think is key data and explains why my eating <50 grams of carbs daily may have fixed me. This link is a short read and could be helpful.

https://doctorakerkar.wordpress.com/2014/10/25/low-starch-diet-for-ankylosing-spondylitis/

In part reads:
"Dr. Alan’s research continued & he went on to show that there are similarities in structure of the HLA-B27 molecule & enzyme Pullulanase produced by the Klebsiella bacteria. There is also similarity between the enzyme & type I, III & IV collagens found in joints & other organs. This gave rise to the ‘Molecular mimicry theory’. The human immunity recognizes Klebsiella as foreign & attacks it. However, since HLA-B27 & collagens have similar structure, they get attacked to. This may be responsible for the inflammation in joints & other structures like the eyes in Ankylosing spondylitis.

One can infer from the proposed ‘molecular mimicry theory’ that by reducing the klebsiella bacteria in the gut, one can reduce the inflammation associated with Ankylosing spondylitis.

Various studies have shown that the gut bacteria including klebsiella grow on undigested starch in the gut. Hence a reduction in starch in the diet may help reduce the klebsiella bacteria in the gut. Klebsiella bacteria is well adapted to the human gut & produces the Pullulanase enzyme that can break down the starch, derive nutrition & thrive in the gut.

The rationale of the ‘low starch diet’ is to cut down on the starch, make life difficult for the klebsiella bacteria. This may indirectly help control the Ankylosing spondylitis.

This is the exact basis of the ‘low starch diet’ for Ankylosing Spondylitis."

I have been reading about Klebsiella bacteria from time to time since 1977 but tonight was the first time it clicked how I may keep our two HLA-B27 positive kids from developing AS and their possible children. Thanks for your post. Actually I did not want to have kids because of AS in my family and was in part why I was 46 when they were born.

I am going to stop with the above referrences.

Best of success with whatever plan you run with for your AS.

Sued0nim

If only starch free was indeed the cure you tout from thread to thread. Clearly it is a case by case basis whether people experience symptomatic relief from dietary intervention

I've seen Erbinger's research before ...the UK ankylosing spondylitis association probably says it in the most easy to comprehend form

http://nass.co.uk/about-as/living-with-as/diet-and-as/

"In 1996, in a paper supporting his theory, Dr. Ebringer published the chart of one of the patients that he had been following over a period of time. The patient's erythrocyte sedimentation rate (ESR) showed a clear decline over the time he had followed the diet (1983-1995). ESR is a measure of inflammation and Dr. Ebringer believes that the lowering of the patient's ESR demonstrated the success of this diet.

However, it is recognised that ESR levels in AS are not necessarily indicative of a person's actual symptoms. Some people with high ESR can experience little pain and stiffness, whereas people with low ESR might conversely be in a lot of pain and be very stiff.

Some people with AS have told us they have had a good experience with the low starch diet whereas others have found no benefit.


....

For this reason NASS can neither give its sanction nor refute the hypothesis that the low starch diet will help patients with AS. It remains a hotly debated subject among doctors. We do however offer the main principles below. It is always important to check with your doctor or member of the rheumatology team before trying any new diet."

Sued0nim

HLA B27 is a genetic marker that helps with diagnosis when investigating symptoms, it is not causative

There is a chance your children, like mine, will not have inherited it

Unfortunately if the molecular mimicry theory were true it would have stood up to further research and be true of the majority, if not all, cases...I have not seen any follow up research nor any interesting new therapies out of this decade-old research ..perhaps you have..please post them if so

singingflutelady

I'm on Remicade for Crohn's. I get really tired and have joint pains from it but it is a miracle drug! I was near death before taking it and now I am in remission. I am between doses 13 and 14.

desiresdestiny

Thanks everyone

desiresdestiny

I've already stopped eating gluten and cut back on dairy.