Getting worse? What options?

[2tired]

      Dx primary sjs in 07.Took plaq two different times because was the opinion of one opthalmologist that my field of vision was being affected. I took it again rx by another opthalmologist, who disagreed that the plaq could affect my vision that quick. In the meantime, I was referred to a retina specialist and he said i had a "retinal cyst".  Even tho it was stable and was not thought to be caused by the plaq, he does not want me to take plaq, because it would be more difficult to "follow" any changes in the cyst.
      My rheumie will not give me methotrexate or prednisone, or any of the immunosupressants.  I realize that these types of drugs have dangerous side effects.   I also have degenerative disc disease and spinal stenosis. i have chronic hematuria and cysts on my kidneys, but they are "normal" in people my age (67).Also, have had kidney stones.  During the last year, I have noticed strange rashes on my face, arms, chest. The rheumie said he thought it was gutate psoriasis; dermatologist says may b exzema.  I usually itch all over, but will have to say that it has subsided somewhat. 
     Most days, I can barely walk.  My feet, legs, back and right knee hurt, sometimes my hands. I have some type of neuropathy and carpal tunnel. If I take a walk, which is supposed to be good exercise(and I know I need it), I pay for it a few hours later or the next day. I have developed a drier throat with a chronic dry cough. My memory comes and goes.  I spend alot of time looking for my keys, phone and other things. Dry eyes of course, but they are not as bad as at one time.
      I was taking green tea supplements, until I read on one site that some people's T cells are adversely affected by the green tea and it could make you worse.  I've tried accupunture unsuccessfully.  Now take pilocarpine, cymbalta, mobic, restasis, use xylomelts, krill oil, natural multivite, voltaren gel, tumeric, cranberry capsules.
      I am about 50 lbs overweight, try to eat healthy, but going to grocery store and preparing meals is getting harder and  harder. I know my pain would be better if i lost weight.  I went on the South Beach about 5 years ago and lost 30 lbs and vowed I'd never get that heavy again...then after about a year or two had put it all back on plus 15 extra lbs.  I am getting more sedentary because of my pain and fatigue. I used to go to the Family Y and work out on the ellipticals, but have not been in over 6 mo.
    I am not convinced that this disease is as harmless as the docs would lead you to believe. I feel that if I have all these additional symptoms, worse fatique and pain, that the disease is progressing. How far will it progress before it has done all its damage? I have read that it can damage virtually any major organ in the body. i live in a town with a medical college; thought they might have some clinical trials...no. I can no longer travel because of the pain and fatique. I haven't resorted to a cane or wheelchair because i am trying to fight the effect it is having on my life.  My husband and I went on a cruise a few months ago and I was miserable...the walking, standing in line.  I used to love cruises, but I am not looking forward to going on any more.  I am sorry for droning on and on. I know there are many people much worse off and I am grateful for the health that i have. I think my husband is slowly realizing that i not the way I am because of laziness or lack of motivation. Those of you that are on methotrexate, prednisone and biologicals, what was the deciding factor that your docs put u on these meds?

[Head2Toe]

I don't have any answers to your questions, but just wanted to welcome you to the forum and tell you I'm sorry you are feeling so unwell.

There are many wise and well-informed members here who can provide you with good information and words of wisdom.

[cremer]

Welcome to Sjogrens World.

I feel so sorry that you are going through such difficulty.

Every time I see my rheumy he asks me am I still walking, am I exercising. And like yourself I cannot do much as I also have lots of things wrong and the pain is pretty bad at times.

But he keep stressing that you must exercise even if it's just 10 minutes a day it's better then nothing. It really does stop you vegetating and as you say putting on weight.

Hope you start feeling a little better soon.

[Joe S.]

You can survive and do well with out the traditional immuno suppressants. I believe our immune system is reacting to mitochondria damage as it should. R-lipoic acid, acetyl-L-carnitine, D3, Omega-3, C500, tart cherry extract,  carrot juice and other supplements can help.

Some members have put what they are taking in their signature line. Always check for drug interactions, counterindications, and side effects.

[gurs]

I would seek out another rheumy for their advice....sometimes, we need traditional medicines.

Im a fan of natural therapies, but I don't rely on them soley, in addition, I found some of the herbs/supplements can
be very drying..some though, I can tell they really help with some of my symptoms. I have to experiment. Green tea
was very drying to me and my eyes. Each of us is different, and have so many issues going on...crazy!!!

Again, if you can, find another doctor.

Gursie

[Joe S.]

Yes, you are at war with this disease. Take every reasonable action you can to overcome it. Learn about your enemy. Learn how it attacks, learn its strength and weaknesses. Plan your attack with the best advisors you can find.

[wildforwater]

You have a lot going on.  I also suggest finding another Rheumy who will treat you.

Maria

[finallyadx]

Hello and welcome.  So very sorry  you are experiencing such pain and difficulties.  I would also recommend you find a new rheumy.  He/she may be able to help you with a combination of traditional medications and supplements. There is a way to lessen and manage many of the symptoms we have with sjogrens but it is trial and error...trying different medications, trying different supplements, etc.  Always check with the dr who is treating you prior to starting any new supplements to be certain there are no adverse side effects.

Some folks on the forum also swear by certain dietary restrictions and moderate exercise (in any way, shape or form you can get it). 

Please let us know how you are doing and if you are able to find a rheumy who is willing to work with you.

Sending positive thoughts your way.

Kim

[warmwaters]

Welcome... sorry that you are dealing with such pain.

I will note that you are taking somethings that are helpful to deal with some of the symptoms of Sjogrens - mobic, cymbalta and the pilocarpine. So it's not like you are doing nothing.

I think it's worth having the discussion with your rheumy about why s/he doesn't want you to take predinisone or an immunosuppressant. You may already have had this conversation... but for most doctors it is a benefit/risk analysis. I don't know enough about these meds to provide that analysis, but for some of these meds, the concern is about long term use. But at age 67, "long term" is less than at age "37". So it might be worth asking some concrete questions about "If I use X for 10 years, what are some of the risks?"

It may be worth consulting another rheumy as well. There are a wide range of opinions in the medical community about what appropriate treatment is.

Try not to beat yourself up too much about weight and exercise. If you'd like to tackle these issues, do them incrementally... cut out one high calorie treat, or try to walk 10 minutes a day. Small improvements add up over time.

Best,
warmwaters

[bjnc]

Have you tried any type of water exercise?  I basically do no exercise other than swimming, and I do that slowly these days. If you're not a swimmer, water walking or water exercise might be a good option. The buoyancy of the water helps the joints so that it is not painful. And I find it very refreshing.

[2tired]

Thanks to all of you who replied with words of encouragement. I do have osteoarthritis. My ANA is positive but rheumatoid factor neg. I have done water aerobics but I find it a pain in the winter. Pun intended. Also the pool uses so much chlorine that it stays in my nostrils for hours after. But, I am going to look into another pool that has this other than the Y. The brain fog issues that some of you mention are right on. I too have trouble with coming up with everyday words in a conversation. Before I get to the end of my driveway, I have forgotten where I am going. I go to the fridge and don't know why. Cant focus, multitask. Amazing. What is going in our brains that causes this? inflamation? Something like Alzeimers? I like my rheumy; he is a very kind man and listens to me. But he is a professor at the local medical school and I have been waiting weeks for a refill on my mobic.  I think the problem is the support staff and not the Docs, but I am open to going to another. This is my 2nd, though. The other one insisted that most of my fatique was depression.

[bjnc]

I'm not trying to push the water exercise, but I just switched from swimming at the Y in a chlorinated pool to swimming at a health club which has the salt water instead of chlorine. I've noticed that my skin is much less dry since switching away from the chlorine.

[Carolina]

Dear 2tired,

Indeed welcome.

Your 'saga' sounds very familiar, with doctors disagreeing right and left, and you  'stuck in the middle'..

If you post your diagnoses, conditions, medications and so on, that will help us.  See how my signature line looks for how it works.

I include my age so people know where I am in life, as well.

I exercise in warm salt water, as well, a sort of water aerobics that I learned about 10 years ago, and now do on my own, because it is quieter and calmer.

The battle with weight is common and, in my opinion, part of our conditions.  Others may disagree, but I think the autoimmune/immune mediated conditions we deal with make weight issues difficult for many of us.

Again, Welcome 2 Tired.

Hugs,  Elaine