New to this-which meds has helped you the most?

[Finn65]

Hi everybody,

First of all I want to thank all the members that has contributed to this forum as it has helped me a lot. It feels great to have people here who understand what you are going through as most of the time you feel very alone with your struggles.

I am new to this disease and am interested which medicines has helped you the most with different symptoms from dryness in various parts of the body to pains and fatigue and so on?.? Are you able to work and does it get slowly worse as years goes by?

I am really struggling with my work as I am soooo tired all the time, can't sleep because my legs hurts like crazy and so many parts; eyes, nose ,..burns and itches so much. Do not know why but I have most problems with my eyes, nose and vaginal dryness but mouth is not so bad. I know normally mouth is mostly affected.

Has anything helped you for the fatigue? I feel I am losing my life as i do not have any energy to go out with friends or do much with family and when I try to explain why i do not come they think I am just making excuses and being overdramatic. How are you dealing with these issues as it feels that nobody has sympathy for you and makes you feel like you are just a weak person.

Sorry for complaining so much but it is nice to write and let it out a little bit.

Wish you all Merry Christmas and good wishes from Austria!

[Joe S.]

Welcome to the forum.

First, I suggest you find and read "Spoon Theory" from the web this will help you understand good and bad days.

I have not been able to use traditional medical treatments for my auto immune diseases. So I use supplements and other forms of alternative medicine. Each country has slightly different laws on what supplements are available so it may take som research on your part. Please check counter indications, interactions and side effects before taking any medication or supplement.

If your pain increases with bad weather, try taking inositol. As with most, I take it for a month and then stop for a week to determine if it works for me. I have taken this one for years at this point.

For brain fog and other symptoms, I take acetyl-L-carnitine and R-lipoic acid. These two do mitochondria dna repair. Specifically on gene 6 and 7 so they help with most auto immune diseases.

Since arthritis is a big component for most of us, I take several supplements. Tart cherry extract reduces uric acid.boswellia, curcumin, and UCII together help reduce pain and additional damage.

A good multivitamin and 500 mg of C per day for general health. This helps to reduce other health challenges. I do increase my C, and zinc during cold and flu.

You can check oursignatures for other suggestions. I also use tones from www.chakraforce.com
The mumps tomes plus testosterone tone will put me back to some level of remission. There are tones for dry eyes and dry mouth on the site also.

[Carolina]

Hi Finn65,
 
And welcome.  Sorry you had to find us, but we're always glad to be helpful.

We cannot depend on the understanding and sympathy of our family and friends.

Most people prefer 'conditions' that are simple and easily cured.  They really don't understand Immune Mediated Conditions that are chronic and also have episodes of increased symptoms, that we call flares.  In fact, many doctors do not truly understand these conditions.

And many doctors do not like to treat Immune Mediated conditions because each of us is different and requires special attention and treatment.

I see you've listed your diagnoses and medications, but I'm not sure I understand the European medication names.

1.  I take Pilocarpine (generic Salagen) which stimulates more saliva, tears and body fluids, tho' never enough of course.

2.  I take Duloxetine (generic Cymbalta) which is on label for both depression and pain.  Profound fatigue, body pain (myalgia), and depression are part of a flare of our Immune Mediated conditions.

3.  I take Medrol (Methylprednisolone) which is a corticosteroid.  I take a very low dose daily, to allow me to have a treatment of IVIG without triggering a flare.   This drug makes me feel much better and reduces fatigue, but has many side effects and my doctor keeps trying to find the lowest possible dosage for me. 

4.  I take Gabapentin, which I see you also take.  It has greatly reduced the pain of my Small Fiber Neuropathy.  I also have Profound Peripheral Neuropathy.

5.  I have a large humidifier running next to my bed that uses 5 gallons of water daily in the winter time.  Our furnace also has a humidifier, but I need the humidity to be at 65% in the bedroom in order to help me with dryness.

I complain all the time, here.  It is IMPORTANT to complain because it helps us understand what is really going on.  We must monitor our health very carefully.  Things change over time, and I keep a daily diary (in the morning I write about the night before and about the day before).

Sjogren's Syndrome can be a fairly uneventful condition, and for many people it isn't a serious problem.  But for those of us who post here regularly, we have more complicated health issues, mostly arising from our Immune System problems.

Again, Welcome Finn65!

Hugs,  Elaine

[Winnie]

Finn65
I think plaquenil has helped the most with my fatigue. It took awhile to be effective. I am only taking over the counter products for my dryness which come and go. I was a mess for the first year or two. Had more problems than sicca. Had to alter diet dramatically due to celiac disease.  I finally took an anti depressant for about a year and a half. Now I have learned to love my new self. My symptoms are better, I am a stronger person now and no longer take an anti depressant.  I learn to rest when i need to. I have leg aches, twitching and mild cramps.  It seems that light exercising or just getting up and moving helps me.

 If I am not able to go out with family or friends I just tell them.  No details. Just a brief comment with no explanation. My family doesn't seem to understand my illness or my diet.  I have given up on
trying to convince them that it is more than in my head.  Live life to the fullest and find your inner peace.  Hopefully this helps. Merry Christmas to you too!

[Finn65]

Hi everybody,

Thank you so much for your answers. It is great to have information about the meds and supplements that are helping you to make your lives a little easier. I understand that it is always little bit different for all of us for what works and what not as these illnesses are so complex and we all have different combinations of other problems with this sj?grens.

I thank for giving me the main ingredient of the medication and the supplement as it helps me to find similar things here in Austria.

You made me so happy when you answered even though it is such a busy time of the year and despite your own pains and problems. I do appreciate it. Just to be able to finally to get things out and vent is a nice christmas present.

Tip about not always trying to explain things to people is also good as it makes things easier for all people concerned.

Hang in there and happy holidays again!

[Sleepy In Seattle]

Hello and welcome!

Everyone is giving great suggestions - my fear is that all of it is helpful, which may mean none of it is helpful 

By that I mean that everyone is different - unfortunately, there's usually no clear choice, and finding what works for YOU may take a while.

My Sjs is secondary to Lupus - I also have APS and Raynauds, and probably some other stuff too. I was pretty sick a few years ago, but now I live a relatively "normal", active life and make what I'd generally say are only small concessions to my wacky immune system. Some of them were hard to adjust to, and I struggle sometimes - but I do consider myself very lucky to have the health that I do - and with these meds, diet, etc I have seen a LOT of improvement in my quality of life.

For me, what works best is:

- Making sure I get plenty of good-quality sleep (bought a very good mattress, insist on going to bed early and getting extra sleep if I am feeling low, observing good "sleep hygiene"- look that one up on the internet if you are not familiar with the idea)

- Eating a healthy diet with little or no gluten, no processed foods, no artificial sweeteners, very little dairy, and very few grains/starches. (I do "cheat" on this when traveling or on special occasions, but try to stick to it 99% of the time...if I don't I definitely feel it in body aches, brain fog, and fatigue!)

- Exercising. Ugh - I hate this one, but it's true - it's very important to stay as fit as you can - it helps EVERYTHING. I have a very active job, but I also try to get in lots of walking with my dog, gardening, hiking, etc. I hate gyms so I try to do stuff outside instead.

- Supplements - I take turmeric, fish oil, vitamin D, magnesium, a very low dose of DHEA, a good multivitamin, B-complex, CoQ-10, and some other stuff i am forgetting right now, LOL - but that's the important stuff.

- I take 400mg Plaquenil daily and feel that it has helped quite a bit with fatigue and also mouth dryness.

- I take varying amounts of Methotrexate each week, usually in two doses (Monday night and Thursday night). I have been taking it long enough that my doctor lets me decide how much I need, and I take as little as possible - I kinda let my body tell me what kind of shape it's in. It helps me a lot, and when I go off of it for a while (as you do sometimes when fighting off a virus, etc) I definitely feel it. When I first started, I was very afraid of it and I had to adjust, but now I have almost no side effects. It doesn't work well for everyone, but it has helped me a LOT with fatigue, body aches, and brain fog, as well as general energy level. I also sleep like a LOG on the nights I take it! (That's a GOOD side effect  )

- I do take a very small dose of Prednisone daily - again, my doc lets me decide how much I need, but generally it's between 2 and 5mg, which is technically a "biologic dose" and should not have any side effects. It seems weird to me that such a tiny dose of ANYTHING could matter, but it does....those few molecules of steroid make a pretty big difference in my quality of life, so I take them. I always try to take as little as possible.

It has taken several years of trial-and-error to find this balance, and it's a constant process of monitoring and adjusting. There are periods of feeling great, and also flares, where I don't feel so great - but generally it's pretty good, and it's SO MUCH BETTER that it was before I was diagnosed!!!!!! I know things will probably change, too....that's just the nature of this stuff.

But for right now this is working well for me. I hope it helps! Don't be afraid to try things, just be sure to work with your doctor on it, even if it's just OTC stuff, diet, or supplements.

[grammad97]

Hello finn65 !
Welcome.
This is the place to vent your complaints, fears, frustrations etc.

We all get it. Each of us has been or is going through a lot of the same stuff when it comes to dealing with friends and family. People don't understand something they can't see or know.

As Joe mentioned read "the spoon theory". If someone expresses a desire to understand your fatigue give them a copy of the spoon theory to read.
 
I have secondary sjogrens and connective tissue disorder aka possible lupus or me. So many of our symptoms are similar with other autoimmune issues.

I have all the dry parts especially the mouth ,eyes and girl parts. I also am fatigue d with chronic widespread joint pain ( no swelling in joints due to sjogrens), hearing impairment ( autoimmune related), gluten intolerance and digestive problems.

I take omaprazole( for reflux);400 mg of plaquenil( 7 years and it helps with fatigue);restasis( my eye dryness relief); butrans(pain ).
Supplements are fish oil; vitamin D; multi vitamin.


I wish you a Happy Christmas!

[Maria3667]

Hi Finn,

For more mouth & eye moisture: generic pilocarpine 8x2.5mg/p/day AND 1.25mg Livial (Tibolone).

Against fatigue: 150mg/p/day natural thyroid hormones.

Against general malaise: handful of supplements.



Good luck!

[Finn65]

Hi everyone,

Thanks again for your tips! It was very interesting that many of you mentioned the hearing loss as mine is getting worse all the time. It is hard especially  at work when you have to ask often three times what they said to understand and that makes most of them very irritated. I hear all kind of noises and wind sounds in my ears. Is that part of this Sj?grens or can it come from osteoarthritis as mine is extensive..?

I also keep to gluten free, lactose free and very low fructose diet, although I too cheat at special occasions and unfortunately also in not so special ones. But I do try and that does help some.

It is really interesting and for me very important to hear your stories and symptoms as many times it is hard to mention them all to doctors as you choose the main problems when you visit and hope the rest of the symptoms will not become the main ones that are very hard to live with. But in the end it is this combination of them all that makes this so difficult to deal with.

Lots of love to you all from your fellow sufferer!

[Carolina]

Hi Finn65 again,

About the hearing loss it may be that those of us with Immune Mediation Disorders (like Sjogren's, RA, Hashimoto's, Lupus, etc) are also more prone to another set of conditions:  Menieire's (hearing loss + tinnitus), Raynaud's Disease, Temperature Dysregulation (too hot, too cold, running a low body temp), Osteoarthritis, Anemia, Interstitial Cystitis, etc.

It isn't clear that there is a causal relationship, that Sjogren's causes hearing loss.  At least not that I know of.  But I think, and this is just me talking, that we are people with 'problems'.   Many many people have Sjogren's (so I'm told) and deal only with dryness and manage it reasonably well. 

I thought that was me, but while I was thinking that all these other problems started creeping in: anemia, Interstitial Cystitis, Meniere's and Hearing loss....then Profound peripheral neuropathy.  And I tore both menisci without doing anything particularly stressful.  And developed carpal tunnel and on and on and on.

I am also Immune Deficient.  And I have a history from childhood of sensitivities, poor health and general malaise.  I always felt like I was' coming down with something'.  I never had the energy I saw in others.

I'm going to say that there is a pervasive dysfunctional nature of my body.   You would NEVER know to look at me, which is almost funny.  And I guess at least one thing works FOR me. 

But I think for many of us, there is a complex set of immune system problems.  I have a friend on another forum who has finally been diagnosed (after more suffering than I can bear to contemplate) with a damaged pituitary.  Her autoimmune system or her basic immune system attacked and damaged her pituitary.  The consequences are devastating and it has taken years and years of testing, treatment and completely horrible illnesses (herpes virus on her organs and persisting in her body always, for example), before the Mayo Clinic finally found out what the underlying problem is.  There are treatments but they are mostly prednisone and prednisone related and require constant monitoring.  She has not had nor ever will have anything approaching a normal life. Oh, and she is also immune deficient. 

We each have to travel our own path, and we make the journey in our own time, Finn65.  I sometimes wonder how many are out there who do not find us.  And perhaps even those in our situation wouldn't appreciate this forum.  But for those of us who do, it is a Godsend.

Hugs,  Elaine

 

[A66eyroad]

Besides Plaquenil (generic) and Evoxac (generic), my rheumy has just added a supplement called DHEA which, I think, has really helped. At least, it seems like I have many more good days than I've had since this whole mess started!

I also use a lip balm called A Kiss of Smoothness which is made by Nivea. I have one in my desk drawer at work, one in my purse, one next to my reclining chair at home and another next to the bed. This stuff is great!

I use Biotene toothpaste as well as Orajel anti-bacterial rinse for mouth sores. I just found an amazing toothbrush (only your Sjoggie friends will describe a toothbrush as amazing!) which is so super soft that it doesn't cause any mouth injury. I can't think of the name of it, but I'll post again tomorrow with the name of it.

When I get mouth sores I try to tough it out, or I use Mary's Magic Mouthwash which is a mixture of Maalox, Xylocaine and something else, I can't remember. If I have a particularly stubborn mouth sore (more than five days) I will touch it with a Q-tip full of tea tree oil for several seconds. It tastes like kerosene and really burns, and it's probably not good for me, but it will get rid of a sore overnight.

The lotion I swear by is Aveeno. If I'm having a rash flare-up, I'll take a bath in Aveeno oatmeal bath. I also keep Cortisone 10 ointment in my desk drawer and at home because I do have rash problems a lot due to lupus.

Ice water works best for me as far as keeping my mouth hydrated. My mouth always feels hot and dry, and the ice water feels so good! I hold it in my mouth, and I swish it around. Ahhhhh!

A nasal spray called Ocean helps me a little, but using the saline and neti pot make my dry nose even worse, so I don't use that. Sometimes I'll take a bit of Vaseline or antibiotic ointment on a Q-tip and coat the inside of my nose very lightly. This feels good, but I don't know how good it is for you, since it coats the little nasal hairs and keeps them sort of matted down. But it's better than a bleeding nose at work, right?

I also sleep. A lot. For example, this past Friday I got home from work at 5:30, ate dinner and fell asleep at 6 and slept right through the night until 8 a.m. Then I took a two-hour nap in the afternoon and went to bed by 9. On Sunday I woke up at 7:30 and had another two-hour nap in the afternoon. Last night I stayed up until 11, though, because DOWNTON ABBEY!!! But I have to sleep a lot in order to work full time. Lucky for me my kids are all grown up and my husband is retired and loves to cook!

I've had to let go of a lot of things, which is sad. My house is never presentable for drop-in company, but I try not to stress or feel guilty about that. I can't always show up for planned outings with friends, but my friends understand and love me anyhow. I haven't been to a shopping mall in more than five years. Sometimes I cry, and I don't feel guilty about that, either!

I hope this helps!

[Karlij]

Plaquenil has helped my fatigue & joint pain tremendously.  It still sucks, but mostly tolerable.
Tramadol helps my almost daily pain. 
Prevacid for acid reflux.
Floridex, a Rx high fluoride toothpaste, is amazing for tooth sensitivity!

Any recommendations for vaginal dryness?  I think it's time to visit my Gyn.  It's really hurting my intimate life with my husband, because sex has gotten so painful.  Astroglide is no longer enough.

[A66eyroad]

Karlij, have you tried Astroglide X? It has a black label. My GYN recommended it, and it's made a huge difference.

By the way, the toothbrush I mentioned in my earlier post is called Colgate Floss Tip.

[warmwaters]

My "miracle drug" is immunosuppressants. I have taken prednisone, Medrol, and Cellcept, and felt much better on each of them. More energy, less pain, less brain fog. Unfortunately, they come with a lot of risks, and when on them I get severe infections, so they are a resource that I use only as a last resort. Just finished a Medrolpak this week, and feel like a human being again, after a 4 month flare which left me in bed for days at a time.

So while there's something that does work for me, I don't use it very often.

LDN (Low dose naltrexone) helps me with joint and muscle fatigue.   

Some people can use stimulants such as provogil and adderall to help with energy. It can also help with focus. For me, it works for a day or two, but I am just draining whatever energy I have. So I can't use it on an ongoing basis.

Making sure my vitamin D and B levels are correct is important, I supplement for B1, B12, and D.


There are many things you can try, and find the best solutions for you.