Do the meds work?

[Daisy]

Hi all,

As the title reads, does the medication given to relieve some of the symptoms of SS work? By all means I am not expecting some kind of miracle but for example does the Pilocarpine etc work for saliva production? I am currently on zero medication but it is because I am seronegative and was sent away by the rheumy (I am going back to an oral expert as my GP said it needs reviewing and that my mouth is the main symptom).  My eyes are (I don't want to jinx it) feeling ok at the moment, with only minor dryness.  My nose is terrible and it's the first time I have experienced that, which also makes me worry that this disease is progressing.

I have had my symptoms on and off for around 2 years. I feel like I have had this years though as I also have fibromyalgia and I suspect that some of this pain could actually just be related to SS.

I just wanted some reassurance I guess, i am hoping i get put on some medication to help as it is affecting my quality of life

Thanks

[Joe S.]

Learn to manage your symptoms and live your life with out the medications. Then if you get them and they do help you will do better. But if you do not get them you will still do better because your learned to do with out.

I looked at alternative therapies that included: meditation, tones, reflexology, reiki, supplements, acupressure, and various types of massage. Start your journey to find what works for you.

[Pete0211]

I've only taken pilocarpine and cevimeline so far, but I call tell you that both work.

My experience is that pilocarpine is kind of like a wild ride - I produces tons of saliva, but its effect wouldn't last very long. Pill > 30 minutes > rivers of saliva > 2 hours (2.5 total) > fading saliva > 1 hour (3.5 total) dryness again. 

Cevimeline has a nice, natural saliva production that lasts pretty much from dose to dose. On bad days / times (sometimes it's not a full day), chewing gum helps keep things a-flowing in addition to the cevimeline.

[Daisy]

Thanks both. I have been managing for 2 years without any meds at all but think I've sadly got to the point where I need a bit of extra help.

Pete - thanks for the info re the meds. Without these meds, do you normally have total dry mouth? Does it help your quality of life? I've been avoiding things where I have to talk which is severely affecting my wellbeing

Thank you

[SunshineDaydream]

Cevimeline (generic Evoxac) helps me a lot, especially when talking, exercising and overnight while sleeping. Non prescriptions things that also help are sugarless gum, dry mouth mouth spray and dry mouth lozenges. Humidifier at night.

ETA: I also carry water to sip as necessary.

For dry nose, I use saline nasal mist.

[Pete0211]

Thanks both. I have been managing for 2 years without any meds at all but think I've sadly got to the point where I need a bit of extra help.

Pete - thanks for the info re the meds. Without these meds, do you normally have total dry mouth? Does it help your quality of life? I've been avoiding things where I have to talk which is severely affecting my wellbeing

Thank you

I don't know what it's like without either of these drugs at the moment. Before I started taking them, my mouth was dry to the point where I wasn't eating or sleeping much, and I could barely talk. Some steroid injections and the pilocarpine were the first meds I was given. With the pilocarpine, quality of life was better, but still laggged in between dosing (e.g. I would wake up in the middle of the night due to the dryness and wait until it was time to take the next pill), but now with cevimeline and about 9 months since my symptoms ambushed me I'd say my mouth/throat are almost normal-ish.

[Sharon]

Hi Daisy,
From my experience the saliva meds generally work for most people.
I had a bad reaction to Pilocarpine and to Plaquenil but they're great for some.
I use Ubiquinol supplement for saliva it and it works for me.
For the stuffy nose/sinus issues I use Avamys nasal spray daily and it's the only thing that helps.
It's a lot of trial and error with SS.

[DarleneB]

Yes..evoxac is my most important drug I take.....gives me normal amount of saliva...everytime I see my doctor I tell her how important evoxac is to me...

[warmwaters]

Some of the meds work for some people, and almost all of them also have side effects. Whether they will work for you is a matter of trying them. It can be a long and somewhat frustrating process.  Some people have found success with using supplements (vitamins and minerals) as well spices. Changes of diet have helped some. If you are considering a specific treatment, search on this site, and read various peoples' stories.

Things that have helped me

Prednisone & Cellcept. These are both immunosuppressants, and I had less pain and more energy with them. However, they increase risk of infections, so I couldn't continue them.

Meloxicam - anti inflammatory (many other choices in this category) Reduces pain

Vitamin D  - I also have a vitamin D deficiency, which is common in this disease. Improves feeling of well being.

LDN - Reduces muscle pain.

Eye drops -  Help with dry eyes

Things that haven't helped

Plaquenil - Have tried it multiple times for 1-2 year periods, and feel no difference. Others report good help with it.

Diet change - Tried gluten free, dairy free several times for 6 month periods with no changes

Acupuncture

Massage

Vitamins B (various), Fish Oil, peppermint (for IBS), hmmmmm don't remember them all now.

IVIG (had to discontinue due to reaction)

Rituxin


I do have a complicated situation, I've got IBS and immunoglobulin insufficiency, as well as neurological involvement.

[Emics]

Thank you all for this valuable comments, it is very useful for me also. Unfortunately, Evoxac is not sold in Spain, but I guess I will need something like that in a brief period.

I can only tell that I am trying hydroxichloroquine 400 mgr daily since December and I haven?t noticed any relief in dry eyes and mouth. I have read that it is useful when you feel fatigue or joint pain, but this is not my case until now.

I have tried low dose prednisone and I haven't notice anything, so I stopped it.

I have been diagnosed only some months ago (dry eyes symptoms 7 years ago), so I am new in this also. I started to practice yoga kundalini and I feel better, specially my eyes. In my case I think when I feel anxious I am worse.

[quietdynamics]

Hello Daisy.. and an early congratulations on your soon to be earned nursing degree. 

I found in my situation that the sicca (dryness) symptoms were subtle and insidious. Other symptoms were affecting my ability to function in the work environment and family needs; fatigue, pain, weakness, etc.

I was very surprised when I was sent for a Salivary Gland Scintigraphy: result gland dysfunction. Thus, my statement about symptoms being "insidious".
I go have fibromyalsia as well.. so both this and Sjogren's are being managed with medication.
I was also tested for Vit D and B level; both were deficient (you can search symptoms of deficiencies) and was placed on therapeutic levels with labs to monitor. Result was less leg/shin pain (Vit D3). And less tingling/numbing of extremities (Vit B's).

I was asked if I had considered an anti-inflammatory diet during an appt. As a matter of "inner voice" I had moved toward a Mediterranean type diet before it became a trend. Sugar just trashes me.. and I have not had for example a 'soda' in decades.

I use pilocarpine. I was Dx'd late in life and after jumping (so to speak) through hoops. So I sadly have dental issues, and of course bone lose in jaw due to decades of VitD deficiency.

Even for those without dry eyes, hygiene is important to keep Meibomian glands clean.. so wash face with for example baby shampoo and a face cloth. Just an adaptation in routine.

You do not say if your Fibro is being treated.. Sjogrens and Fibro are separate treatment protocols.
(I believe some of the pain/symptoms I believed where Fibro.. were from VitD deficiency..especially shin pain.)

Some information on Sjogren's care  https://www.niams.nih.gov/Health_info/Sjogrens_Syndrome/

So in my experience "Yes" medications help and I believe if I had been Dx'd earlier some of the resulting problems I have Dental, perhaps gland dysfunction could have been avoided.

For eyes search Omegas (fish oil) for eye health.

Keep a symptom diary. Date. What you think could be the 'trigger' (weather, food, stress,new med, etc) duration, pain level, etc.
From a diary you can provide concise information for your Dr. and you can see where you can make life adaptations to better your Quality of Life (QoL)