Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Question about NSAIDs and fusing

Hm, tis is a difficult one,......
I read a few of the posts about the side affects,...... and of course I agree with them, but...
I been taking some of NSAIDs for years now, yes I have all kinds of problems with ulcers, stomac,.........
But I would rather have those problems than back ones. I was in really bad pain last year, I couldnt walk, sleep,..... Now I am pretty ok, can do anything, walk, sleep, jump,..........

So I choose NSAIDs, you should be carefull with them, talk to your doc. before choosing one

regards
sanela

Michelle, A/S is a long road and down this road no single drug is going to work for the entire trip. For the first part NSAIDS will work for the inflamation thus reducing pain to a degree but further down the road they tend to lose their effectiveness and you will need something different. Some take the path of Remicade which can work wonders if your body does'nt reject it like mine did and don't even think about it if you don't have medical coverage unless your last name is Trump. Embrel is another wonder drug (which is what I've been on for the last 8yrs) but it does bring down your immune system and I am constantly getting sick. Also without med coverage don't even think about it unless you have an extra $4000 to spare each month (Canadian dollars). You are still in the early stages so read up here (you came to the right place) and learn about the different drugs and drug alternatives and make choices with your doc which will be right for you and more than likely you will be switching drugs over the years depending on your condition and what works for you at that point in time. Warning about the NSAIDS though, they can cause havoc on your internals and don't wait like I did until seeing blood in the toilet to realise somethings wrong. Also avoid painkillers unless you absolutelly need them or you could turn into an Oxycontin "junkie" like I did and recovery was not fun. A/S effects us all in different ways so the meds someone else is taking might not be right for you. It is important to have a doc you can see on a regular basis and feel comfortable with them.
You have the power to control A/S and this site will help you along the way.
Good luck,
Steve

Thanks to all who have responded up to now.

My dad refused to use NSAID's, but unfortunately he ended up fused.

I must say though overall he is in good health. He is 70 now and he has obviously had no stomach problems, due to his refusal to take tablets.

I would like to be given the chance to try anti TNF blockers in the future, but there is likely to be a funding issue here in the UK. People don't usually take out private medical insurance, as the national health service should pick up the cost (it often won't though if the drug is expensive). I recently enquired about private health insurance but there is no chance now!

Michelle

Hi Michelle,

Like the others have said, NSAIDS definitely will not stop your fusing. I took Indomethacin at a very high dose for over 20 years, and I am severely fused. When is the copyright date on the book you are reading? I have a feeling it was published before the biologic drugs like Enbrel and Remicade existed. I would be shocked if it wasn't, in fact.

Bottom line, I don't think you'll find too many folks here at KA anymore who will recommend NSAIDS as your first line of defense against AS. That doesn't mean they don't work for many people, or that you won't end up using them--it just means that there are many other options to try FIRST before you start taking NSAIDS, As you've read in these posts, NSAIDS are much more dangerous than most folks believe, espeically if you are looking at having to take them for years, even decades. Newer drugs like the ones Doc Lightning mention definitely help protect the stomach, but still, if you can find something else that works better, it's best to try to avoid the NSAIDS altogether. Indocin definitely helped reduce my pain, but it did cause one GI bleed, and I know that it wasn't a qustion of IF I was going to have another one, but rather WHEN I was going to have another one.

I'm not on Enbrel and prednisone, as well as the pain medication Oxycontin, and I do not take NSAIDS any longer. Enbrel has helped me more than Indocin every did, and the low dose of prednisone helps keep my iritis under control and also makes me feel even better overall. I wish I didn't even need the prednisone, but I do. Bottom line is that you need to talk to your rheumatologist about the best treatment plan for you, but tell him/her up front that you would like to avoide the NSAIDS if at all possible. Unfortunately, many insurance companies make you climb the "steps" and try all of the lower cost AS treatments before they will approve Enbrel or Remicade, which are at the top rung of the ladder. That attitude is changing a little, but it is still prevelant, at least in the United States. If he starts you on NSAIDS and they do work, just be careful with them and follow all the advice you received in these posts. You should at least be able to try things like sulfasalizine (or other sulfa drugs) before you try NSAIDS, as they don't cost much either.

Good luck

Brad

Mike, do the Histamine H2-blockers inhibit iron uptake like the proton pump inhibitors do? I'm not happy that the Nexium I took, and now the Pariet I take, have resulted in me being anemic-I know we need stomach acid to metabolize the iron we get from food... although if they also block stomach acid, I would guess my question is redundant?

I'm looking for a way to getting around having to take an iron supplement-this is the first time in my life I ever had this issue. (FYI-I take Naproxyn 500mg BID)

Hi all
As i may have mentioned elsewhere in the forum. Drug use is totally different here in the UK.
Anti-TNF is not yet licensed for general use in AS, only in RA. Therefore unless you are lucky enough to get into a trial group or be pre-selected by your rheumy its not going to happen for the majority of us just yet. I only know 1 person on it in my AS group and 2 others have been ofered it when it is available. As michelle says it is very expensive here for the NHS and would be even more to be private. The selection for anti-TNF is also going to those who are in advanced fusing stages and have have tried many, many drugs. Unfortunately I dont fall into that category, even though I have been diagd for 10 yrs and now take cox-2s my 5th anti-inflam.
I really envy you guys as our medical system although 'free' has so many restrictions placed on prescribing drugs. Over here we call it the postcode lottery,this means depending on the local health authority funding you are not always able to get the medication you need even if you are told by the consultant that is what you need.
I even had trouble when transferring from my last nsaid onto the cox2 as this is 3 times the cost per tablet and initially my GP refused to prescribe it.
I also tried to get private insurance a few years ago, thinking that it would help me jump the waiting lists we have here in the uk, but if you have a pr-existing medical condition they do not pay out for anything connected to it, and you know how it is with AS, they can just blame anything on it.
So... major rant over.
Thanks for reading
Sam

Hi Sam, and welcome to Kick AS!

Sorry to hear about the frustrations you're experiencing trying to get a hold of one of the anti-TNF drugs. You are right in that I did not realize that it was still not approved for use in AS patients in the UK--I'm sure it's been mentioned here before, but somehow I must have missed that very important fact. Has to get a bit frustrating hearing us in the States tell folks over there to drop the NSAIDS and get on the ATNF drugs, I imagine, and I will definitely keep that in mind in future posts.

Very interesting to hear you say you envy our health system here--for a completely different perspective from some folks in the U.S. who are extremely unhappy with our system, check out the long thread that talks about a large percentage of doctors being quacks (I can't remember the exact title, but it does have quacks in it, it's on the first page, and it has about 74 oosts and climbing! Just goes to show how very often the "grass is greener" adage holds true, as many folks here wish we had a national system more like yours. Personally, I do feel strongly that the U.S. system is at a crisis point right now and is on the verge of collapse. The things it does well, it does EXTREMELY well, but too many people in this country are going without basic healthcare, which is inexcusable in a country with such wealth. (As you'll see, however, I strongly oppose the whole "95 percent of all doctors are quacks," a line that has touched off a very lively debate, to say the least. In most cases, I feel it is the insurance companies that have taken over big medicine and now cause most of the problems, medical and payment-oriented. But I digress...)

One other thing--seems odd, doesn't it, that they are giving it to the tolks who have fused the most. Whilw I am glad they are getting it, I wonder it it wouldn't be better to give it to people who are in pain and are just starting to fuse, as the drugs could prehaps stop the disease process and prevent further fusing. Something to think about, that's for sure.

Good lucl in your battle to get the ATNF drugs.

Brad

Hi Brad
Yes I have read that thread, very interesting. Thats another thing over here, we cant just shop around for GP's like you. Because every area comes under a local health authority we have to go to a GP that is in our catchment area and it some places that doesnt leave you with much choice. For example where I live I only had the choice of 3 GP surgeries, 1 was overloaded and not taking new patients and out of the other 2 I took the 1 closer to my house for reasons we all live with every day, even though the other surgery had 3 GPs instead of 1.
So we cant shop around if we dont like our GP we have limited choice. Thats what I meant when I said I envied you, you seem to have so much choice over there.
I dont see my GP much as I have access to a physio and am able to talk to my Rheumys secretary at my AS group so I can slotted in somewhere in emergencies. Everytime I do see my GP he asks me if I'm depressed so I try to go there only when totally necessary.

Yes it is odd that they are giving the ATNF to people already fused to slow it down instead of the younger ones with less damage, but thats government funding for you!

Sam

With all of our different insurance plans we cannot shop around as much as it would seem to be. Certain HMO's only let you see the doctors on their list, and if you don't live near their facilities if it's a closed system like Kaiser's, you are just out of luck, (unless it is severe emergency room visit) plus, the wait to see a specialist can be 2 months or longer. Want to make an appointment? They won't, they tell you they'll call you back when they have one, and it may take 2 months or more for a specialist. Specialists are in short supply, of course. Your "Primary Care Physician" will also not have any appointments available if you need one quickly in a semi-emergency, so they will try to shunt you off onto someone you've never seen before...and again, they will call you when they have the appointment, not the other way around. Every single time I saw a physician in that system, the physician suggested to me, no matter what the visit was for, that I had nothing wrong with me. I am absolutely convinced they train their doctors to do this as a sort of rationing technique, to make the patient come back again for any problem if they are not willing to argue, bleed, scream with pain, or pass out right there in the exam room. If you are culturally not a screamer this can be a real problem.

I know this sounds funny but it's true. Some cultures get very quiet when they are suffering and the doctor may be from a culture where if there is not a lot of volume there is not a problem.

Same thing with the other insurance plans, they may have dozens of doctors on their list, but most of the doctors will NOT be seeing new patients on the less desirable plans. Trying to find someone who is taking new patients if your employer changes insurance frequently is a nuisance. The doctors will also dump you if they don't like how the insurance is balking at reimbursing them for previous visits, but they won't admit it, which is extremely frustrating.

The government system for the retired elderly, Medicare, is better than the private insurance but it is imperative that it not be screwed up by the greedy and the cynical.

Insurance companies also have this dirty little secret going on, some of them automatically reject a certain percentage of claims on the first try so they can put off reimbursing the patients and doctors longer by claiming a mistake was made in coding the forms. It is up to the individual states and Insurance Commisioners to regulate the insurance companies and some states do a better job than others, so you have a lot of uneven enforcement, and some states attract the sort of leftover dreck type of insurance companies. Some states also attract the leftover dreck type of other types of medical personel.

The state in which I live had to recently overhaul its workman's compensation program because there were a lot of people abusing the system. There were people who were retiring from state jobs, claiming disability, getting pensions, and then they were caught doing incredible things physically that were so far from disability it was ludicrous. A lot of them were sheriff and California Highway Patrol personel. One woman had a home health caretaker and was caught doing endurance rides on her horses....of 50 miles per day. That one hit close to home, I'm lucky if I can do a slow walk for 50 minutes and she was riding at a trot for 6 hours at 8mph over mountainous trails. (I've volunteered working at these rides because I cannot actually do them, so I am familiar with it) Unfortunately for her, she placed well at a ride and somebody recognized her as that supposedly permanently disabled sheriff's department retired person from the news. Oops. She then claimed she was pyschologically traumatized by her injury. Okay, but look, enough people have horses in this state that they KNOW how fit and mentally tough you have to be to do endurance racing. People like that really screw it up big-time for the poor people who are genuinely physically unable to function, like workers who have broken arms or legs or are using wheelchairs. This woman needed a mental health care professional visit, not a home nurse.

There are some types of insurance that let you see lots of doctors if you have a big, honking deductable and pay out of pocket for lots of things before the insurance kicks in.

Once you have a disease, if you lose your insurance, or have to change it, the new insurance may either make you wait a certain period of time before they cover the "pre-existing condition", or they may just not cover it at ALL, which leaves many people in the lurch with no coverage for their chronic diseases. I find this the most exasperating thing about our system, that the powers that be do not mandate coverage for this situation. There is coverage for so many months between jobs, called COBRA, but it's expensive and it does not last forever. Many small companies will then not hire a person with a chronic, but manageable condition, because they cannot afford to insure the employee long term because they know the insurance company will jack their rate up the second year after offering a sweetheart deal the first one. I was watching a health care symposium yesterday with the former Secretary of Health for this political administration(the rats are jumping off the sinking ship...) and he mentioned that only about 60% of small businesses were now offering health insurance. Hell oooo? How is this a sustainable future?

So that is a very short overview of the American system.

If I had to make a value judgement because of rationing an expensive drug, on who got the TNF stuff and who did not, I would be wanting to give it to the people who were suffering the most pain, because that is to me more miserable than losing function. (ergo, none for me...but I have other issues also) But I am thinking that they don't know how to do that, you cannot see pain, so they are looking at the obvious physical manifestations and using that as the criteria.