Sjogrens World Forums

Has anyone tried it? 

Thanks Linda! I just did my second injection on Friday. No real side effects except for a little upset stomach today however breakfast had more sugar than I normally eat. My rheumy started me on the .06 as well. I'm glad there's been no side effects as I travel on weekends sometimes for work. I appreciate the feedback

Welcome back! Sorry it's because your health has taken a downturn.

I've taken MTX for 20 years, the first year was by oral ingestion, and I had no problem with it, but also didn't have the positive effect we were looking for , so I was switched to injectable, and I've taken 0.6 ml the whole time, with minimal side effects. In fact, probably no side effects, but I sort of got in the habit of allowing myself to feel the fatigue, nausea and mild headache I almost always have, but letting it take over a bit the day after my injection, effectively giving myself a day of rest.

The fatigue is almost impossible to deal with sometimes, and as I said, my way is to allow it for a defined period, and then just trying to push through the rest of the time. I try to keep my overall health optimal; eating well, listening to my body's demands, avoiding all the things we know aren't good for us (smoking, drinking, excessive sugar/fat/additives, ect).

It's taken a while, but I now realize that falling into a nap as I sit watching TV or whatever isn't a failure, it's a necessity. If I can't get all my housework done every morning, it will still be there in the afternoon or the next day. Doing several small jobs is just as effective as doing it all as one big job, just takes longer and is less stressful. When I can, having a helper is a good thing, not a weakness. That also involves realizing that not everyone does chores in the same way and getting used to having things done, just not in "my" way.  And none of these changes are "giving in" they are adapting to altered circumstances.

Hi everyone,


I'm not new to the forum yet it's been awhile since I've been here. 34 years ago I was diagnosed with Primary Sjogrens and Mixed Connective Tissue Disease. I have all of the markers for lupus and RA. Things have been pretty good until this past April. I ended up having a major flare up, couldn't walk, use my hands, hardly anything. My old rheumatologist did barely anything. My family doctor put me on Prednisone, 40 mg and I started getting my mobility back. I saw a new rheumatologist last week and he has put me on methotrexate injections since pills made me sick. I'm taking .6 CC's, 3 mg folic acid and 7.5 mg Prednisone. My question is how do you deal with the fatigue? My job requires travel, usually on a weekend. I took my first injection Friday evening. Any and all suggestions are greatly appreciated!

Deb

Hi, Linda!  Thanks for responding and keeping me updated on the Chat situation.  The problem that I have, which unfortunately is quite common these days for many, is trying to get in to see someone quickly.

I originally went to State Med Urgent Care on a Sunday to have a possible abscess on my chest wall (bottom of breasts by sternum). They prescribed Cefinid, which I could not take because I am allergic to penicillin. My primary care physician prescribed Batrim for me. After five days of taking Bactrim, my abscess was getting larger.

I decided to make an appointment with my primary care physician but he was booked out until November 22.  We decuded to go back to Stat Med Urgent Care that day (Friday).  However, they closed hours earlier for a meeting.  So, my hubby and I headed down to the John Muir Emergency Department to have them look at it.

After waiting in ER for 6 hours, they made an incision and drained the abscess.  They packed it with a cotton wick that I needed to pull out one inch every day. The ER Doc said that if Urgent Care had drained the abscess on the past Sunday, the Bactrim might have had a chance.  So, she gave me another week's worth of Bactrim. Boy, did I bleed for two days!  The first night I bled all over my pajamas and bed sheet.

ER told us to go see John Muir Wound Care in 3 days.  Called Wound Care and they can not see me until tomorrow (Friday, Nov 1).  So, we went back to Urgent Care to have it checked out.  It seems to be doing nicely.  However, the Urgent Care doc decided to pull the rest of the wick out and told me that Bactrim doesn't work on 96% of women.  What?  There were two reasons why the wick was in there.  1) to help keep the incision open so that another abscess does not form; and 2) to keep things draining because I have Sjogren's.

So here I am now.  I will go see John Muir Wound Care tomorrow at 12:45pm.  The incision is still open and seems to be oozing clear fluid with a tinge of blood.  I guess that is a good thing.  We will find out tomorrow.

I agree with you.  My neck surgery healed very nicely.  I think it was because I had in home support services coming to check my blood pressure and wound a couple times a week.  I was also on Vancomycin as an antibiotic. The only time one course of antibiotics did not work was when I got C-diff from the last MRSA abscess I had (years ago).  They gave Bactrim, which did not work, so they put me on Clyndomycin which gave me C-diff. It took 3 months of Vancomycin to clear that up.  I wish I could take Vancomycin for all my surgeries and wounds.  I also wish I could see my primary physician when I need him.  I trust him and he has my back on the healing processes of Sjogren's.

Happy holidays, Linda!
Judie (Sjoggiemama)

My healing process is all over the place! Small lesions, like insect bites and bumps or bruises, seem to take forever to heal, meanwhile something like a surgery I had on my forearm a couple of years ago healed extremely quickly, to the point that the surgeon questioned my dates when he re-examined me. I also find that burns (which I have more than my share of because of chronic clumsiness) not only heal quite quickly, but with little discomfort and minimal scarring. I've rarely had anything progress to needing antibiotics, but when it has happened, one course has worked.

Regarding our Chat evening, sadly, the platform we had been using, KIWI, was, as you know, very undependable, and getting worse! AlienDog, our IT wizard, has been trying to find another one that meets our requirements, is compatible, and fairly easy to use, but so far , no luck. The hosts still sign in, and we try the KIWI connection from time to time, and it occasionally does work, so if you try, and are lucky enough to find it in a cooperative mood, someone will be there!

Sound off any time you want! That's why were here isn't it? to share each others concerns and suppost each other.

The most frightrening time in any disease process, I find, is the period of uncertainty; waiting for final results, clarifying things, meanwhile worrying worst case, hoping for best case, and hopefully preparing for anything in between!

Hi ...... I went to my GP last week because I've had a stomach for a while.
He arranged a speedy blood test, a 'poo kit' from the local hospital and an appointment for an ultra sound that I am waiting for a letter for.
Got the blood test result back. The test was for CA 125. Result - abnormal.
I know what the test is for and I know it's not definitive as it can indicate a number of different things. I just need to switch my imagination off now.
Really hoping the ultrasound appointment comes soon.
Thanks for listening - Scottie.

Hi, everyone.  First, let me apologize. There has been a lot going on in my life this year and I have not been very active with the group. I see a few people I still know on the forum.  I have not been on chat for a while now as I have been working with clients and two Thursday evenings a month I am required to spend with the Contra Costa County Genealogy Society.  It seems that the chat night may not be going on any more.  Sad.

Besides falling while sitting in my upright walker, death of my mother-in-law, my husband getting his second kidney stone, and him totally our car, I have been extremely fatigued and my mouth is getting drier, seem to have developed insomnia, and gastrointestinal problems (nothing new).  I thank my lucky stars that my neck surgery (2 years in December) has held together even with the fall.

Right now I am dealing with cellulitis and possible abscess. This is the second time it has happened.  I don't think it is typical for Sjogren's to cause it, though I see that cellulitis can cause you to have Sjogren's.  My questions is, if any of you have had to extend your antibiotics more than one week, and it seems to heal more slowly (probably due to Sjogren's).  It has reoccured again at a very difficult area of my body that does not seem to be able to fit a warm compress, but I am doing everything right to get it to heal.

1.  Bactrim for seven days.  2.  Mupricin antibiotic topical ointment.  3.  Warm compresses. 4.  Cutting out sugar and fried foods.

I just want to hear if anyone else has a slower healing process because of Sjogren's.

Dear Heidiaj,

Nightmare, beyond nightmares!  You must be at your wit's end, for very good reasons.  I'm going back over your post to read about your experiences. 

OK, I've never heard of most of your tribulations. I will read up on them after my post.  Your stomach volvus is terrifying.  You could have died!  I'm glad the surgery saved you, but I'm sorry it wasn't the end your horrors. The feeding tube, more surgery to repair your hernia and put a mesh around your esophagus, and your food goes right through you!  I wonder that you can ever leave the house.

I had to look up the tests you've had for calprotectin and lactoferrin, indicators which show the horrible stress in your in your gastrointestinal system.  Both ischemic colitis AND diverticulitis! How do you keep your weight up?

I have issues with my gastrointestinal system from autonomic Polyneuropathy.  My neuropathy attacks the organs and systems in my body, starting with Sjogren's in 2002, which took out my moisture system, as you know.  Then my bladder lining is inflamed and bleeding. 

And the worst came in 2008 when the nerves in my legs were attacked, killing two out of three main nerves in my lower legs. I have progressive polyneuropathy, even my skin is attacked leaving me with a condition sometimes called "skin on fire".  I take 3600 mg of Gabapentin Every Day, which gives me relief.  At 82 I am unable to walk and confined to a Power Wheel Chair.  I have zero ablility to stand unsupported for more than 3 seconds!

The scariest thing started in 2008.  My small intestine spontaneously closes (probably nerve damage?).
It has happened 3 times.  I must immediately go to the hospital, where I have a nasogastric tube to keep my stomach empty since nothing can go down past the blockage, an IV for fluids, and of course nothing to eat.  We wait to see if my small intestine will spontaneously open, then all is well.  But I spend 3 nights in the hospital, the NG tube is awful.  If my small intestine doesn't spontaneously open surgery will be necessary.  But all three time it opened on its own.  The thing is I never know when it will happen again.  The last time was in the middle of the night on Memorial Day weekend.

THEN in about 2017 I developed Small Intestinal Bacterial Overgrowth.  My small intestine is supposed to sweep the 'bad bacteria' into my Large Intestine, but it has nerve damage, so the Bacteria builds up and gives off gasses, which are painful and sort of like Celiac (which I don't have).  I diagnosed this from talks here at our web site by others, and my gastroenterologist ordered the tests.  I was positive for SIBO.  The good news is that a course of the right antibiotics kills the bacteria, they start building up again, requiring more antibiotics.

THEN I developed problems with my esophagus which suddenly stops moving the food I'm eating and it backs up into my. mouth.  I also sometimes have achalasia, which is when the valve at the bottom of my esophagus doesn't open properly.  A Balloon was inflated to open the valve and then Botox (of all things) was injected all around the bottom of my esophagus walls to relax the muscles.

I have autoimmune polyneuropathy caused by Cytokines attacking my body. This is an autoimmune condition and it gives me profound fatigue.  There are no cures and very few treatments

AND my Immune System is deficient and every four weeks I have an infusion of IgG to replace what's missing.  It does keep me from getting sick all the time.  I started the infusions in 2013...and I'll never stop them.

Unfortunately 25% of the people with my Immune Deficiency develop COPD.  So I have that now.

Both diverticulitis and colitis are autoimmune conditions, Heidiaj.

I always look for supportive forums for my conditions, but they aren't very good, I've found.  I imagine you would find it difficult to find a Forum that addresses all of your conditions.

This forum isn't at all like is was when I found it in 2010.  I think that so many doctors now think about Sjogren's now and people are not waiting 5-7 years for a diagnosis and treatment.  So there aren't many new people frantic to find support.

Most of the people here are the small percentage who go on to have many additional autoimmune problems and reading their posts has helped me immensely. 

I hope you hava some respite from the constant diarrhea.  My husband has microscopic colitis and I'v seen first hand the effect it has has on his (and our) life.  We've been married 62 years.e

Keep in touch and best wishes.

Elaine (aka Carolina)