Sulfasalzine and Comlemetary Therapies - whats working for me

Symptoms & Treatments Complementary Therapies
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Hi I am a new member and this is my first post – had PSA now I guess for 15 years in one form or another, but was officially diagnosed about 4 years ago. My doctor at that time gave me two choices – Biologics or Sulfasalazine, possible side effects of the biologics took that option off the table for me.

Up until that time I was taking a lot of Advil and martinis, it was very effective in the short term but I do not recommended it for the obvious reasons – it’s not good for you. So since that solution wasn’t a good idea to continue I tried a more natural approach of fish oil( 3000 mg /day) , turmeric supplements, L carnitine( 3000 mg a day ) and probiotics – with an occasion does of 600mg of Advil maybe once a week, and I have to say this approach if followed every day worked just as effective as taking Nsaids. I did quite well for the past four years on that regiment. ( I buy all my supplements at GNC, they cost more but the quality is consistent and I find better than other brands and shops, I have other brand name supplement that did not work as well)

However the past year I was getting more tendinitis and now have a locked trigger finger as a result – I found that repetitive motion issues is what I am particularly prone to, the mouse on my computer being the biggest culprit

So the hand doctor who it treating the trigger finger suggested I go back and see my rheumatologist and see what other options might be out there. I did and she had the same options

So last week I started sulfasalazine, I was on it for 7 days at two pills a day then broke a fever so my doctor took me off it. The time that I was on it, I never felt worse, it was like I was hung over the entire day. I read on this site that you need to take folic acid ( Vitamin B ) and a lot of water to help with the side effects. Funny because that’s exactly what alcohol does to your system to make you feel hung over. ( it depletes the b vitamins and dehydrates you ). However at that time I continue the fish oil, turmeric and lcarnitine, as well as up my probiotic dose up to two 5 billion caplets a day to battle the stomach issues with the sulfa

However here is the odd thing – this past week as bad and as tired as I was I never felt so pain free in a long time, the sulfasalzine takes a long time to kick in – so my doctor told me now way it could have been the meds. Now the only thing that was different is that I upped the probiotics and I stopped drinking , I would have a few drinks every night – either three glasses of red wine or a few vodka and sodas.

The only pain I have right now is in my hands due to the tendonitis.

So my doctor thinks it might be the probiotics that improved my condition – other than that she had no explanation. I would rule out a placebo effect from the Sulfa since it made me feel worse than I have in years. I know there is an aspirin component to the Silfasalazine perhaps that is what was making me feel better I don’t know

But I have to think that cutting out the alcohol and the increase in the probiotic hade to have helped. Right now I have no choice but to fight this thing with non medicine methods, I was wondering if anyone has any suggestions to what works for them and what supplements. Thanks

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Cutting out booze will always help! Something that concerns me is that in taking neither DMARDs or biologics you aren’t addressing your disease. I agree with all the supplements and take my share as well. But these only help your basic metabolism, help reduce inflammation from food and promote general wellness. In your shoes I would worry that doing nothing to prevent the constant advancement of your disease–a chronic disorder that doesn’t max out its effects–puts you at risk for joint deformity and serious tendon problems. That’s just my point of view, of course. My disease is quite active and I simply cannot function without a biologic or DMARD. The months I endured on NSAIDs and methotrexate before taking Enbrel were some of the worst times in my life. And even on biologic medication, and sulfasalazine, and supplements, and being gluten free, my disease was STILL active.

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Hi nick1117,

I had been trying probiotics myself but have found my stomach gives me a bit of trouble when I take them. I'm told it wears off but I'm not sure I could wait that long.

I am also taking sulfasalizine and had a little trouble with it at first but waited a week then tried again and I've been ok on it since. Lots of water is important. It does take a while to kick in. I found the last 5 or 6 months my pain and swelling has increased and spread to new areas. My hands are the biggest problem. Thanks so much for sharing.

My son used probiotics also for his autoimmune disease and I tried to use the same strain. I'm going to have to look into another strain I guess. Right now I am taking sulfasalazine and plaquenil but find they don't help enough without Advil which I know isn't a long term option. I don't know why the docs don't give folic acid supplement when on sulfasalizine, I read the sulfa meds block the body's absorption of of folic acid ( just as mtx does ) so it's definitely needed.

I have only found temporary solutions myself. It seems everyone's system reacts differently to meds and supplements.

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I felt pretty bad at first on sulfasalazine, doxycycline, and diclofenac. It has reduced my pain to almost nothing. He told me to take the meds with water and then eat. I had forgot what he said and was doing the opposite. I ate then took the meds. It made me feel sick with acid burn. I saw him yesterday and he reminded me how to take them. It made all the difference in the world. No acid indigestion or burning diarrhea. I feel really well. I had an injection for piriformis syndrome. Whole leg went numb for half an hour but hopefully it will work. The sciatic nerve runs through my muscle which I tend to squeeze when stressed. That causes pain. The meds are working really well for me. He prescribes enbrel and other biologics but likes to begin with what I’m currently on. The biologics will be there when these meds poop out on me. Mine was caught early. The sulfasalazine may be worth trying again. I like the cocktail I am on. If I take it as he said I don’t feel sick.

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Mom5...I was diagnosed with piriformis syndrome many years ago, along with bursitis issues. The piriformis muscle runs along side the sciatic nerve, some people (like you) have the nerve run through the actual muscle.

I'm now thinking it's all part of PSA. My first problems were in my SI joints. I've had cortisone shots in both hips over the years and it did help. Actually it was the fastest relief I ever had with a flare in those joints, however I was told I can only have a few of them as every shot weakens the tendon.

I'm realizing the best way to manage this disease is to keep the inflammation down. With less inflammation comes less joint pain. Daily stretching of the pisiforms muscle lightly (hurts) just until you feel a pull and then releasing actually really helps. I've also found foam rolling to be beneficial. Of course both of these shouldn't be done on days that the inflammation is really bad as that may aggravate the area. Rest and meds to take the inflammation down during a flare...

mom5 said:

I felt pretty bad at first on sulfasalazine, doxycycline, and diclofenac. It has reduced my pain to almost nothing. He told me to take the meds with water and then eat. I had forgot what he said and was doing the opposite. I ate then took the meds. It made me feel sick with acid burn. I saw him yesterday and he reminded me how to take them. It made all the difference in the world. No acid indigestion or burning diarrhea. I feel really well. I had an injection for piriformis syndrome. Whole leg went numb for half an hour but hopefully it will work. The sciatic nerve runs through my muscle which I tend to squeeze when stressed. That causes pain. The meds are working really well for me. He prescribes enbrel and other biologics but likes to begin with what I'm currently on. The biologics will be there when these meds poop out on me. Mine was caught early. The sulfasalazine may be worth trying again. I like the cocktail I am on. If I take it as he said I don't feel sick.
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Hi Nick,

Booze aggravates PsA pretty badly (as well as other autoimmune conditions). It's not surprising that you feel a lot better without it!