Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Side Effects?

Dear Ann:

Sulfasalazine is a sulfa drug, so if you are sensitive to these you will have trouble. WBCs (white count) are monitored as a matter of course with this drug, and alcohol and sunlight must both be avoided. Folate absorption is reduced drastically, so supplementation is important.

I was taking 3g tid and had nearly constant under-water feeling and sometimes nausea, and it takes up to two months for this drug to work, albeit it is about the best of the entire lot and one of the most effective DMARDs (it can stop the fusing) for AS--provided the enteric-coated variety is used (Azulfidine--EN in the US).

No direct experience with the other drugs, but good luck with this package, and welcome aboard,
John

Sulfasalazine - Many people have great results with this drug and tolerate it well. I didn't. I only lasted four days on it. My glands were swollen, had a wicked sore throat, and the worse thing is my gums were leaking blood And of course the pills are the size of hockey pucks

Plaquenil - Didn't seem to do anything to alleviate my symptoms. One thing to watch out for is it can cause eye problems, even months after you stop taking it. About a month after I discontinued it I ended up with Sjogren's Syndrome, could have been a coincidence -- that is dry eye and dry mouth, which are the parts we area aware of - my eyes felt like someone had rubbed sandpaper on them and then starched them, and I was squirting artificial tears on a regular basis and using eye gel at night. But Sjogren's also can dry up bodily fluids internally, around joints, for example. Now, many people do use Plaquenil without any of this happening, but I haven't heard many success stories here that it actually has helped anyone to any great degree.

Vioxx - - As someone else said, monitor your BP. Vioxx and Celebrex have been very effective for some in alleviating the pain and stiffness, at least for a while, like all NSAIDs they have a tendency to stop working after a period of time. I was on Celebrex and it did help with the pain and stiffness. Unfortunately my BP went from nearly comatose to 190/70. Since AS (and RA) patients generally take it at a much higher dose than is prescribed for OA, the BP thing can be a common side effect.

Also keep in mind there are other DMARDS out there, some new, some not so new, that actually retard the progression of the disease and hopefully prevent fusion. I'm on a relatively new one, Arava, and other than recurring heel pain which has plagued me for years and still some morning stiffness, I am feeling very, very good these days, and only hope this "remission" continues.

With most of these meds it is very important that you have blood tests on a regular basis, and with many it is also important to avoid alcohol. With Plaquenil use a sunscreen! I once forgot and went out to garden and 15 minutes later noticed that I was developing a hellavagood tan on my arms You can burn very easily with very little exposure to the sun.

Cheryl


Dogs know the meaning of faithfulness

You's would all have to be the best bunch of people & I am so lucky to have found you all -

Okay - my next question - not too sure I want to hear the answer though. And if I did have some alcohol (which I hope to have one day soon - like maybe more than exactly one glass) WHAT THEN???





angel kisses to you all xxx

Anne, I used to take sulfasalazine EN and drink alcohol without any problems. I suppose the best advice is to start the sulfa and if after a few days things seem ok - no allergic reactions - resume the gargle.

& John, those two comics make me feel very old. Peter Cook is now dead and Dudley Moore is in a bad way ...

Dear Ann:

A little alcohol might not be a problem, but just watch out for the attractive healthy orange glow of jaundice. It will probably go away in a week or so...later in the now reddish sclera of your eyes.

uV exposure will exacerbate the problem and otherwise complicate things due to the phototoxicity of the sulfa radical of the drug, but there are things that can be done to more quickly reverse the condition. Good to take folic acid and vit B12 well beforehand; probably in any eventuality.

Anyway, intestinal damage will heal-up eventually, too...with proper abstinence. Besides, nobody ever notices this--even we owners of the bad tracts and about as often our gastroenterologists as well, with their all too friendly innuendo scopes.

Cheers,
John

The guidelines differ depending on the drug. With sulfasalazine alcohol is not as much of an issue as with, say, MTX. On Arava I'm allowed a few drinks a week. However, the important thing is not to remain "dry" all week and then have two or three drinks in a row and thus overload the liver. So my few drinks a week are never on the same night, never more than one in a 24 hour period. And get regular liver tests done, because we all react differently, especially if you have some unknown liver problems that can be worsened by Vioxx in particular, and sulfasalazine also. Most problems with elevated liver enzymes are reversible if caught in time.

Cheryl


Dogs know the meaning of faithfulness

Sorry, bilko--

I just like to remember them young and healthy and wonderfully funny...timeless. I guess my own perceptions of "old" are a bit distorted by the AS, but now that you mentioned it I'm really on borrowed time compared to our ancestors. Amazing that any of mine had genes that survived this far!

Best to you,
John

Hello Ann,
I have to butt in here 'cos my information is rather different to John's....

This is what I have gleaned from the British National Formulary and 8 year's experience of taking sulfasalazine.

While alcohol should be avoided if taking methotrexate (an entirely different disease modifying drug) and a few people might be more sensitive to sunlight on certain anti-inflammatories, neither is a problem on sulfasalazine.

I say by all means have a few glasses in the sun and don't worry about it!

Differential white cell, red cell and platelet counts need to be undertaken regularly and liver function should be tested too. This means initially monthly, but eventually 3-monthly, blood tests. It's true that folate levels may occasionally become defficient in some patients, but really a possible allergic reaction to the drug is the main problem to look out for. In the first months after starting this drug always report any unexpected occurrances (sore throat, malaise, fever, or non-specific illness) to your doctor immediately.

Cheers without beers,

      Loz  

Hi Ann,

the sulfa med didn't do much for me, except to stain my bright white T-Shirts orange!

Vioxx really works well for me , I only take it as needed (not in a flare right now so I've been off the stuff for a while, but it also helps with 'normal' muscle-aches. like after a work-out)

Take care,

Mark

I took Sulfasalazine for a couple of yrs. Seemed to work okay on the inflammation. Had the sour stomach problems as previously mentioned-ate TUMS like they candy-then started have problems with bowel control and after a couple of rather embarrassing situations I stopped taking it. Problems cleared up within a couple of days.
Vioxx-worked really well for pain-after several months I noticed I was gaining a lot of weight but had not changed my eating habits.Then started having edema to lower extrimities-discover kidneys were fuctioning about 60% of normal and was on verge of congestive heart failure.Stopped Vioxx and started on trial of MTX-lost 65 lbs(mostly fluid)within 3 months. It has taken almost 2 yrs but all my kidney function tests are now within normal range.MTX didn't work so now I'm on oxycontin for the pain and aspirin as needed for inflammation.
I am very leery of Vioxx-found out from talking to others that many have problems with fluid retention and kidney dysfunction.Take it if you must but watch for adverse effects. Ottis