Sulfasalazine and other matters

General
1

Hello all. As I have mentioned in a previous post about working full time with this disease, I am newly diagnosed but have had symptoms for years. I finally found a rheumatologist who I like in March. He did an x-ray of my SI joints, which are diseased, and prescribed voltaren to start with. It did absolutely nothing except increase my heartburn.

After playing phone tag with my doctor for several weeks (I work full time and am hardly around my phone; he's obviously busy) we finally spoke last night. Before trying a biologic, he wants to try a drug called sulfasalazine. Then he wants me to come back sooner than my scheduled appointment (which is almost 2 months away) to get the SI joint injections and possibly start a biologic.

Well, I researched sulfasalazine and apparently it takes 1-3 months to know if it's even working! My doctor explained that he wants to try more conservative measures since biologics are risky, but I told him I don't care at this point. I am so incredibly miserable that I am willing to take the risk. He stands his ground on trying the sulfasalazine.

So, have any of you ever tried this drug? Heard of it? What were your results? I am in so much pain. Shoulders, elbows, fingers are the worst because I used them so much, knees, ankles, feet, toes. AHHHHHHHHHHHH! My knee has gotten so bad I could barely walk at one point. My pain is NOT managed. No one seems to give a rat's booty about that.

I asked my rheumatologist what to do about work. I type all day every day. I am trying to get some feedback from him on how to actually handle living with the disease- when to stop with pain, what to tell my employer, etc. and he has absolutely no advice.

The doctor seems focused on the SI joint injections, and I just want to say DUDE, THAT IS ONE AREA OUT OF 20 THAT IS A PROBLEM. Of course I would love to get rid of any of this pain, but why in the world do doctors focus on one area and decide that's what they want to treat? I understand he x-rayed my SI joints because I have pain there and it helps diagnose this disease if those joints are diseased, but what about the rest of me? I haven't had x-rays of my hands, feet, knees, shoulder, c-spine, etc. What about THOSE joints? Can they get injections? I realize these are all questions I should ask the doctor, but I just don't feel like he gets it, and when he wanted me to try some other conservative med, which is the billionth I've tried, I wanted to scream and I was so stunned that I couldn't even get any words out without crying. I also have bad migraines and I wonder if the pain is coming from my c-spine and this disease, It hurts to even turn my head. I've been to a neurologist many times but they haven't been able to help.

I've considered going and checking myself into a hospital. I am in that much pain. Should I try this medication I have zero faith in? Should I stop working? I've looked for myself to all these answers and have come up with lots of tears but no answers.

2

The peripheral areas are treated by NSAIDs It takes a while to get the right one. Generally if there is no response or improvement from NSAIDS, then its safe to assume the problems are not caused by inflammation and they look elsewhere. The SI joints rarely respond to just NSAID treatment OR biologicis but a combination of drugs. Yet the most common symptoms of PsA come from that joint especially the grpoin, hips legs and knees. Tame that bugger down and things get better quickly.

You didn't mention your insurance, BUT you do understand that Biologic treatment costs in excess of $20,000.00 per year and requires pre-authorization? With rare exception they also require failure of other treatments including at least one and sometimes two DMARDs (Sulphazine and MTX the more common)

Because these are seronegative diseases, there is no blood test (or any other test) to "prove" their existence, thus we are caught in a protocol vortex. If A then B and on down the line. Response to treatment is also a part of it.

I would NOT suggest you check yourself into a hospital because of pain. Chances are they will throw you out,and you will go on the watch list as a drug seeker, and depending on the state go into a generalized data base having the label follow you for dang near ever. If you are reffered by a physician its a different matter. The assume (correctly) that if you are being treated and/or worked up for a condition you would be prescribed appropriate medication. (narcos rarley work BTW unless you take enough to be partially stoned)

I realize I have said absolutely nothing you want to hear and very little of comfort. Of course you should try what he has suggested. Its one more check in the "protocol" be thankful he didn't try MTX first. He is working inside a less than 3 month window thats good. Keep in mind even if you do get some relief from sulfazine, that doesn't mean there isn't a biologic in your future.... Most of them take 3 - 4 months to have any effect. He needs to find some relief for you before you start dowwn that road. It isn't like the TV commercials or close. It takes months and lots of tweaking to get it right with biologics (they are NOT monotherapy) Only 60% of folks taking a biologic get relief from their first one.

In the meantime you need to go to work on things you can do (including those you think you can't) heat, ice, posture, pillow, aids, life style changes and adaption and most importantly EXERCISE and movement. BUT ABOVE ALL attitude. stress is one of the major causes of flares. You may need to consider counseling (this is a huge change in life) support groups/partner, prayer/meditation, and even anti-depressants.

Come here often, you have friends and understanding. Be careful of "research" and web sites designed "to help" many online groups are poison (this one isn't) and concentrate on the worst case scenario and are full of people who refuse to come to grips with their disease and fight back. The facts you find are extrapolated from real research and most often have no bearing on you or what you are experiencing. I design those studies and statistical arrays, and I am constantly amazed at the conclusions drawn from them.

3

It sounds to me like you need to be spending a little more time now on you. I know that you want relief and I know how badly you want it. Unfortunately, and this is especially true in the beginning, you have to get in to see the doc frequently to get some help. I don’t have to tell you how awful it feels to have the disease so out of control. If you try a new NSAID, report back in a week to let the doc know its not working. At least, then, he has the chance to try another one and there are many to try. Many Rheums love to give out oral steroids and steroid injections which can provide a tremendous amount of short term relief. They also have a ton of side effects so you have to weigh the good and the bad (mainly oral steroids). Also, most won’t hesitate to hand out some tramadol to help with break through pain. There are topicals that are so good that they feel heaven sent and are non habit forming. Splints, braces, a cane, comfortable shoes can also provide a lot of relief. Warm water PT is a life saver, so is a personal TENS machine (not expensive). Try SalonPas patches. Find out whether heat or ice relieves your pain the best and use it. But to do all of this, you have to make some time for yourself to learn what works and try to be more available to communicate with your doc. I recommend that in the beginning, you should see him more often until you can get some of the symptoms under control enough that you can function. Don’t expect anything more than symptom control until you are started on a DMARD or biologic drug. Also, don’t expect to be pain free. At this point, your goal should be keeping as much of your present level of function as you can which you can achieve by symptom management.

So, the SI joint injections can help a ton. You might be surprised at how much you are compensating with the rest of your body for the pain in that area. Having that pain relieved might just provide relief in other areas too. I have adopted the “don’t knock it till you’ve tried it” mantra when it comes to different therapies!

It does stink that you have to start with Sulfasalazine before anything else. Unfortunately, this is the way the treatment of PsA works. Start with a DMARD, fail that (usually), maybe try a second DMARD, fail that one, and then you get to try biologics. They are just so unbelievably costly, that biologics are rarely used as the first line drug. I got lucky and was able to start them right away, but I have since learned that my experience is quite unusual.

For some reason, rheumatologists are not what I would call holistic docs. They really tend to focus on the medication management of the PsA itself. I do not look to my rheum for any kind of education or support. I read for myself, ask questions on this site, and see my primary care for everything else. When I needed to take off work, I went to my PMD. When I wanted a different PT referral, primary care. I don’t know why the docs don’t seem to treat the whole patient, but that has not been my experience so far. Anytime I ask an outside the box question, I get looked at like I’m looney. So I stopped asking. My rheum is EXCELLENT at being on the ball with my medications and the latest and greatest, which is why I see him. I have tried to force him to treat me as a whole person, but he can’t or won’t, so I found that care elsewhere.

The hospital can be good or bad. If you aren’t a frequent flyer in the emergency room, chances are you can get some help. It will all be temporary though. They might give you some steroids and an opiate to take, or they might be jerks. I have had phenomenal ER care and I have had really humiliating, call the patient advocate, get a nurse disciplined ER care. It’s also a long wait for arthritis pain which isn’t considered an emergency in the grand scheme of things. If you do feel really awful and decide to go, at least wait until its really late at night like 2 or 3 am. It’s more quiet then and you won’t get stuck in an uncomfortable waiting room chair for too long. I know what it’s like to just feel like you need someone to help you, or just need to not hurt for a little while. If you feel like you can’t make it, call the on call service at the rheum’s office before you go. At least let them know how miserable you are.

As far as work, no one can answer that question but you. Work as long as you possibly can, but be prepared to file for FMLA. At least, then, if you need to be out from work, your job is protected. I ended up using my entire 12 weeks of FMLA during my initial months dealing with this and it was one of the best things I could have done for myself. It allowed me to get the rest I needed, go to all of my appointments, make it to PT, swim, and try to get myself strong again. It also allowed by work to hire a temp so that my job would be covered.

I know that is way more information than you wanted, but I talk too much when I can’t sleep! I do wish you the best with this messy thing, PsA. Of course, if you need to talk, message me.

Grumpy(and sleepy!)Cat

4

Thank you all for the thoughtful responses. I took the sulfasalazine for the first time last night and I have a headache and some nausea but so far it's tolerable (I always have headaches anyway so it will take a while for me to know if it's just my normal headache or the medicine). Thankfully, the one thing I do have going for me is that I am a military spouse and have great insurance. The doctor I went to was out of network and I was expecting to pay, but somehow, my insurance paid it! So, luckily, it doesn't matter how expensive the medications are. They will be covered.

I'm not so lucky with FMLA. I work for a small law firm and there aren't enough employees for me to be eligible for FMLA. They have expressed a willingness to accommodate but at this point I'm still trying to figure out what I might need. I think a leave of absence would be miraculous so I can get this under control, but I don't think that's realistic for many reasons. I was considering asking to work from home 1-2 days per week until I get this under control so I can eliminate my travel time, take naps as needed and have time for physical therapy. I am really in a fix with my schedule. I teach at night twice a week (thank goodness that's ending in a few weeks) and my husband is stationed out of state during the week, so it's just me, my five year old daughter, my full time job, my part time job, and our pets. I know it's a ridiculous schedule but it's very hard for me to cut back. I know I do need more time for me.

Aquatic therapy is sort of an issue for me. The smell of chlorine triggers my chronic migraines and we don't have a salt water pool near us. I can't even take my daughter to her swim lessons because it causes a migraine. That makes things challenging. Since this disease became active I have gained THIRTY pounds. I know everyone keeps saying how important it is to be active, but with severe pain, usually a migraine and the extreme fatigue that accompanies this illness, I just literally cannot do it. I have tried everything I could think of. I was a long distance runner before this crap took over, so being overweight and having sores all over my face is very disheartening. I took pride in my appearance prior to this. Now I feel disgusting. I am going to see a derm about the skin part of this disease, but I don't know what to do about the weight loss. Sorry that's kind of off topic but I keep reading that weight loss is a symptom of this disease and wow, I wish!!! That would have been a silver lining! I don't eat that healthy and I know that's my fault, but I have so very little pleasure left in my life that I want to eat food that tastes decent. Cravings come with stress too. Everything is a struggle right now.

Steroids have never done anything for me. Neither have NSAIDS. This new med is not really an NSAID but I have become very discouraged with medications and that's why I want so badly to try a biologic. I have tried many, many NSAIDS. Presdnisone brings swelling down but has never, ever helped me with pain. The only thing that's ever helped me with pain is opiates and they are the devil and I know that. I am tolerant to them after long-term use with surgeries, etc. and lamb is correct, I would have to be basically stoned in order to get relief form opiates. Tramadol is a JOKE for me. I might as well take sugar pills. The only reason I am considering going to the hospital is because I am so desperate. You are all correct. It would not be a long term fix for anything. My body just isn't sensitive to most meds. That can be a good thing, but it's usually not.

Thanks again for all the advice and opinions. I better go splash some water on my face so I don't fall asleep at my desk. That is a constant struggle.

5

Oh and I am definitely going to do the SI joints injections. I was planning on doing them anyway, but your comments have helped me understand what a difference it may make. I am more hopeful about it now. I'm all about whatever treatment might help, I just wish I could get help with all the joints!