Introduction- 34 year old, athletic male with sjogrens

[sjenny]

Sorry to butt in on this thread, but I keep seeing people recommending, or the taking of Tumeic,
Can I please ask how would one take this stuff and how often.   Have I to start eating lots of curries?
                               Thanks Dolly

My doc provides me with a supplement called Turmero Active (K-75) from Apex Energetics which is 420 mg of turmeric extract per serving.  You can probably find it online.  I take 5 ml twice a day.

Sue

[Sleepy In Seattle]

Zyflammend is also a good tumeric-based supplement.

I am female, but very active - and really don't like taking drugs.

Going gluten and dairy-free has helped me a LOT - and so has Plaquenil, but it does take 6 months to kick in.

I thought I was doing pretty well on just the Plaq, but this last April I lost hearing in one ear to autoimmune issues (my Sjogren's is secondary to Lupus, and I also have APS and Raynauds - all of which predispose me to CNS issues, unfortunately, though I have been pretty lucky so far - main symptoms fatigue, body pain, some other stuff that comes and goes but is not nearly as bad as some people get...yet, anyway, LOL).

SO - I started on Mtx. I was really scared and unhappy about it. BUT - I have to say - it's been amazing. I feel better than I have in many years! Yes, I miss my glass of wine with dinner - but it's worth it to feel good. I have had very few side effects so far - I take 12.5mg on Monday nights and 12.5mg on Thursday nights.

There are many diet/lifestyle/supplement choices and pharmaceuticals available to treat these diseases, and it can take some experimenting to find which one(s) work for you - but DON'T let the disease run away with you. Do lots of research and keep demanding good care!

[eyeamdry]

Hi Ryan, I'd like to just say a word about Methotrexate.  I've been on it and Plaquenil since I was diagnosed six years ago.  I have recently began having other problems and I am on a trial type thing to see if I can help the drs pinpoint it.  I am female and twice your age, so different things apply. :-)  I am having trouble breathing and I stopped the MTX of my own accord about 6 weeks ago.  My breathing is not any better (I have COPD).  I am beginning to feel pain in my lower back and hips which I believe the MTX was taking care of.  I will see my drs and likely go back to MTX.  I remember when I started taking this med.  I was so sick I thought I was going to die.  The only thing I could do was lie on my stomach on the couch or my bed.

I knew it took some time for the med to work.  I took my dose and the night before my second dose, I realized I felt better.  I thought this is my imagination.  It wasn't my imagination.  You take this med once a week and sure enough the first dose began to work on me by the 6th day.  Not everyone would have this fast relief.  It kept getting better the longer I took it.  I never did notice any bad effect from the MTX.  Good luck and keep up with the board. The best folks are on here and really help each other out.  Lucy
)

[purplegirl]

Hi A66

I have been on the Plaquenil for 2 years now. I take 1 a day, not sure of the mg, Im guessing 1 is 200 mg? I started off only taking it for 5 days of the week, but rheumy has upped it to 7 days a week and included 5 mg prednisone to my meds.

It has been 7 days on the increased dosage and so far I have not noticed an improvement.

Perhaps it will take a few weeks, I really do not want to go the Methotrexate route.

[A66eyroad]

Hey, 'Girl!

My rheumy started me out on Plaquenil with 400 mg per day, although I've read on this forum that some people sort of ease into it.  Maybe by increasing your dosage will help.

My rheumy says that Plaquenil is a more innocuous drug than any of the others out there, that's why he gives me the highest dosage available. It's the only thing I take for my SJS (except for the medrol dosepac for flares which happen about once a month or so).  I would question him/her as to why you can't take a full dose on a routine basis.

Hope you're feeling great today!

Love,
A66ey

[meow]

I can't take the full dose, maybe because of my sulfa allergy? My skin turns into an inflamed, itchy nightmare. It's barely tolerable at 1 200mg dose in the evening.

[Tivia]

 Sorry to hear you have this horrible illness Ryan, I am like you and wondering at this stage what to do next. This is interesting to me. Looking back I had a lot of the same symptoms for the past 6 years as Ryan. I naturally attributed them to my thyroid disease, now I think it was sjogrens the whole time. I had the extreme muscle weakness, fatigue, tremors, but it wasnt till the dryness appeared this year that I found out about sjogrens. I am at a crossroad, my rheum doctor will put me on plaq if I press it, but she said she normally dont until there are more severe chronic symptoms. Mine seem to wax and wane, she said I have sero negative sjogrens. Should I push for plaq if I am in a mild stage of the disease, or should I hold off and see if things stabilize where they are or get worse?

I hear from people on these boards the disease does not always progress, how can you know what course it will take. I hate to start a major long term drug therapy if I have a milder form that will stay about level, outside of flares of course. The other issue is I have major gastro/pancreas issues that I believe are a part of this. But my rheum doc wont treat for that and I have to see a gastroenterology doc, who btw knows absolutely nothing of sjs. And is putting all my problems down to severe gerd/hiatal hernia/ pancreatic dysfunction and poss SoD.

Long story short, if the gastro issues are caused by sjs then plaq would stop that right? I guess Ryan is also concerned if the time is right to start such drugs, how far can we go and not cross the point of no return

[Ark mom]

Tivia, regarding your wondering if the disease will progress or not, my sjogrens has been very mild for about 20 years, so mild that no doctor ever had a clue what was wrong with me and just blamed it on anxiety.  However, about two years ago I had a flare that caused lots of pain and suffering. The flare itself lasted a few weeks, but the resulting PNS/CNS damage lasted over 6 months.  I was miserable and could not function.  I took no medication because no one still had a clue what was wrong with me.  Then I had another big flare this year, which finally led to a sjogrens diagnosis. 

My point is, even a very mild course can turn ugly at any time, out of nowhere, just something to think about when making your choice about using medication.  Perhaps, if I had known about my disease earlier and had started treatment then, maybe I would be better off than I am now.  Good luck and take care!  Hugs. 

[Tivia]

Tivia, regarding your wondering if the disease will progress or not, my sjogrens has been very mild for about 20 years, so mild that no doctor ever had a clue what was wrong with me and just blamed it on anxiety.  However, about two years ago I had a flare that caused lots of pain and suffering. The flare itself lasted a few weeks, but the resulting PNS/CNS damage lasted over 6 months.  I was miserable and could not function.  I took no medication because no one still had a clue what was wrong with me.  Then I had another big flare this year, which finally led to a sjogrens diagnosis. 

My point is, even a very mild course can turn ugly at any time, out of nowhere, just something to think about when making your choice about using medication.  Perhaps, if I had known about my disease earlier and had started treatment then, maybe I would be better off than I am now.  Good luck and take care!  Hugs.

Good to know...well not about your flare but that you stayed pretty much level with the disease. I too am hoping for a milder course. But am wondering if the beta cells dying off in my pancreas and the insufficiency coupled with the severe GERD is act sjs related. And if going on plaq would knock that out. I see my rheumy in jan I guess I have to make a decision on pushing for plaq or not. My GI doc is usless you bring up the possibility of sjs causing pancreas problems and she goes ..lol no sjs is dryness, stay on the ppi's and the enzymes 

[meow]

I started taking Turmeric about 3 weeks ago, at lunch, and I am seeing an improvement in my hip pain. Small, but nonetheless, there. YAY!