I have diagnoses: Sjogren's and PLMD

[popmom]

Many of you were super helpful over the past year as I have been working through all these mysterious health issues. I saw a rheumatologist, got a ton of bloodwork done, had a sleep study, etc.

I started Requip (Parkinson's drug) a couple of weeks ago for the Periodic Limb Movement Disorder. I am on the lowest dose. .25mg a couple of hours before bedtime. I know it's doing ((something)) because the first 10 days or so, I had incredibly vivid, long dreams. That seems to be easing up. Otherwise, I still feel horrible when I wake up in the morning. Daytime sleepiness may be a tad better, but still struggling mightily with fatigue. Fatigue is absolutely the most debilitating symptom I have.

Rheumatologist offered hydroxychloroquine (Plaquenil) for the Sjogren's. After discussing it, we both thought it would be a good idea to see if the Requip helped before trying the Plaquenil. Now I'm not sure how to proceed. I am a little leery of my PLMD dx. That doctor said I averaged about 38 movements per hour with around 5 arousals every hour. Most people with PLMD have low iron/ferritin. Supplementing helps most of them. My ferritin is high (400) due to inflammation--high ferritin is common with Sjogren's. I told him about my history of seizures, but he didn't really seem to think it was related. I am considering consulting a neurologist. 

I have been debating what to do next. I think I am going to not worry about upping the dose of Requip but add the Plaquenil. 

My bloodwork shows my hematocrit is back in the normal range. High normal but normal. My primary care doctor is monitoring that. 

Anyway, just thought I'd update. At first I was relieved to have some answers, but after researching the (lack) of effective treatments... And I made the mistake of joining a group on FB. That was depressing lol. I had gotten my hopes up that I might get my life back. 

I'm planning to call the rheum office tomorrow to get a script for the Plaquenil. Any advice is welcome. I'll take all the info I can get. 🙂

[prairiewindmomma]

Plaquenil has been great for me. I have been on it for well over a decade. I was pregnant and gave birth on it a few times.  Lots of people are on it 30-40 years with no problem. The rare side effects are indeed quite rare. The yearly eye exams are a hassle, but a couple of hours and a couple of hundred dollars later we are all reassured that all is well. If they start to notice change, they take you off and the effects are reversible.

[popmom]

2 minutes ago, prairiewindmomma said:

Plaquenil has been great for me. I have been on it for well over a decade. I was pregnant and gave birth on it a few times.  Lots of people are on it 30-40 years with no problem. The rare side effects are indeed quite rare. The yearly eye exams are a hassle, but a couple of hours and a couple of hundred dollars later we are all reassured that all is well. If they start to notice change, they take you off and the effects are reversible.

Does it help with fatigue? Thank you for sharing that--so encouraging. I will probably need an opthamalogist anyway to deal with my dry eyes eventually. I don't have dry mouth--yet. Maybe taking the Plaquenil will stave that off.

Edited November 6, 2022 by popmom

[prairiewindmomma]

1 hour ago, popmom said:

Does it help with fatigue? Thank you for sharing that--so encouraging. I will probably need an opthamalogist anyway to deal with my dry eyes eventually. I don't have dry mouth--yet. Maybe taking the Plaquenil will stave that off.

Honestly, it only helps a tiny bit with the fatigue. It has helped with the dry eye and joint and tissue pain. It takes 8-12 weeks to really build up in the system, so don’t quit on it early. I firmly believe that early treatment of AI generally staves off the acquiring of more AI and delays progression. There are some really encouraging studies out there about Early disease treatment…in general, the people I know who have had really discouraging outcomes either waited a long time to treat or are a small percentage of people who have just had really aggressive disease and haven’t had luck finding a good treatment plan. 

I think I remember a little GI discomfort when first starting—drinking sodas helped—anything with bubbles and cola syrup. That sounds odd, but it was a tip from a pharmacy friend, and it did help.

Systane drops are also your friend for dry eye, fwiw. IME, dry mouth doesn’t show up as dry mouth per se but as getting a lot of cavities all of a sudden. If you have had an uptick in needing dental work, try to get the special mouth wash and toothpaste.
 

[GoVanGogh]

I don’t recall reading about your symptoms, but I have memory issues. It is good to know what you have, as it will get you treatment options, even though it can be distressing at first. I was diagnosed with young onset Parkinson’s and fibromyalgia three years ago. I am still being testing twice a year for lupus and Sjogren’s and see my rheumatologist twice a year, plus as needed. 
Re: consulting a neurologist. I would absolutely see a neurologist, one that specializes in movement disorders if possible. 
Re: high ferritin. Mine has been running really high as well. 
Re: fatigue. I have had bone crushing fatigue for about five years now, which the drs say is related to my diagnosis. (I did have a sleep study.) I am on sleeping pills now, as that is the only way I can sleep. I was acting out dreams really bad prior to taking them. How is your vitamin d level? I have to take super high doses daily and even then it is a struggle to get it up to 50.  (Drs want mine around 80 due to my health issues.)

Some things I have found helpful

- taking a rest throughout the day. Not napping, but up and working for 1-2 hours, sitting and relaxing fo 10-15 minutes. 
- working out harder, which sounds counter, but it does help with my energy levels. I also split up my workouts, like weights in morning and infrared heated hot yoga in late afternoon. (I find the heat helps my body aches.) I work out with a trainer once a week. I needed the motivation a trainer provided to workout with the fatigue. My trainer is also certified nutritionist and keeps me accountable. 
- diet. I stopped almost all caffeine and sugar, I ditched everything inflammatory, like dairy. I went vegetarian almost two years ago. At first, I went plant based entirely so that I could focus my diet on ensuring I got the max amount of my food/nutrition from plants. I gradually went even more plant based, incorporating green smoothies daily, eating more microgreens, etc. I do spend an insane amount of time on my diet, but it has been worth it because - in an odd way - I feel healthier now than ever before. I know that sounds funny for someone with Parkinson’s to say that, but I am now able to deadlift my body weight and I am able to run again. (It ain’t a pretty run and I am not setting any records, but I feel amazing when I run. Then I come home and crash. LOL)  My daily is still a struggle, but the neurologist told me at my last appointment that the Parkinson’s progression has slowed down, which was my goal. Slow down the getting worse part, buy time that there might be new treatment options available, keep me out of a wheelchair as long as possible. Stay positive. That helps so much, though I know it can be hard at times. (Had myself a pity party earlier today.) 
i researched cellular healing and incorporated yin yoga, meditation, massage, infrared sauna, acupuncture, probably more that I am forgetting. Keep an open mind to alternative treatments. 
best wishes!

[BlsdMama]

4 hours ago, popmom said:

 

Anyway, just thought I'd update. At first I was relieved to have some answers, but after researching the (lack) of effective treatments... And I made the mistake of joining a group on FB. That was depressing lol. I had gotten my hopes up that I might get my life back. 

I have nothing useful to add to the rest but I wanted to comment on the rest. You’re wise to recognize how online support groups affect your mindset. I joined a bunch of group so I could be proactive and intentional with House changes, etc. But what I discovered was that it was robbing my joy of where I was presently by fixating my mind on what the future might look like. And I really couldn’t handle the overwhelmed caregiver posts. The idea that my husband would grow to resent my care was overwhelming to me entirely and not representative of our life together. Guard your mind carefully. 

[GoVanGogh]

20 minutes ago, BlsdMama said:

I have nothing useful to add to the rest but I wanted to comment on the rest. You’re wise to recognize how online support groups affect your mindset. I joined a bunch of group so I could be proactive and intentional with House changes, etc. But what I discovered was that it was robbing my joy of where I was presently by fixating my mind on what the future might look like. And I really couldn’t handle the overwhelmed caregiver posts. The idea that my husband would grow to resent my care was overwhelming to me entirely and not representative of our life together. Guard your mind carefully. 

Yes, very very much this. I already feel so guilty at how my diagnosis has changed our lives, our retirement plans, even stupid things like what type of shoes I can wear. I have found that “guard your mind carefully” is so important. I now follow some uplifting people on Instagram and am good with that. 

[popmom]

25 minutes ago, BlsdMama said:

I have nothing useful to add to the rest but I wanted to comment on the rest. You’re wise to recognize how online support groups affect your mindset. I joined a bunch of group so I could be proactive and intentional with House changes, etc. But what I discovered was that it was robbing my joy of where I was presently by fixating my mind on what the future might look like. And I really couldn’t handle the overwhelmed caregiver posts. The idea that my husband would grow to resent my care was overwhelming to me entirely and not representative of our life together. Guard your mind carefully. 

I appreciate you. ❤️ 
I will definitely guard my mind.

I crashed a few hours ago—not to sleep—just had to get in bed. Lots of time to think. I am realizing that I am going to have to have more help around the house. I detest asking for help. The housekeeping is overwhelming. Dh is so tolerant of things—the messes, etc. But it’s depressing me because what little energy I do have—I feel guilty if I’m not cleaning something. If not guilty then anxious. I just want things to be in order. 
I split my energy between dd, housework, and my garden. Dd and garden get first priority. Dh is a priority, too—should clarify that. I was referring to the daily routine, schooling, etc

Edited November 7, 2022 by popmom

[popmom]

@GoVanGogh my vitamin D has been low or at the low end of normal, so I’m taking prescription vitamin D now.

[GoVanGogh]

1 hour ago, popmom said:

I appreciate you. ❤️ 
I will definitely guard my mind.

I crashed a few hours ago—not to sleep—just had to get in bed. Lots of time to think. I am realizing that I am going to have to have more help around the house. I detest asking for help. The housekeeping is overwhelming. Dh is so tolerant of things—the messes, etc. But it’s depressing me because what little energy I do have—I feel guilty if I’m not cleaning something. If not guilty then anxious. I just want things to be in order. 
I split my energy between dd, housework, and my garden. Dd and garden get first priority. Dh is a priority, too—should clarify that. I was referring to the daily routine, schooling, etc

Asking for help was the topic of my therapy session last week. I detest asking for help. When I have tried to ask for help in the past, I was made to feel guilty for needing help. (Family of origin, not DH.) I have a small business and I need to downsize it greatly because I just physically can’t keep up. I am overwhelmed thinking about how to downsize. My garden is my priority. I am convinced gardening is the fountain of youth. 

[Tap]

For me B12 helps with the involuntary movements. I take a quality B-complex and orally disintegrating methylcobalamin. Taking my vitamins definitely makes my sleep better. 

I have punctal plugs to help with the dry eye syndrome. They are one of the best things I have done for my eyes. My eyes were so dry, I had vertical scratches from my own eye lids. With the plugs, I don't even need to do daily eye drops. Just sporadic drops for specific reasons. 

Stress absolutely makes my fatigue worse. I can always tell when my Sjogren's is flared. I will find my self thinking "it feels like I am carrying a 50lb back pack"....and then I know....my Sjogren's is taking me down...and I need rest. I feel best if I lay down flat and just relax. Low stress movies, hydration and healthy eating. 

Edited November 7, 2022 by Tap

[popmom]

I’m thinking about quitting therapy because my therapist doesn’t take insurance. And even though I met my deductible with all this testing, she doesn’t have the particular license required for me to file it myself. I’m still going to contact my insurance company and ask about it. 
 

I think I’ve done enough work with her on the family of origin stuff that I’m in a good place mentally. My stress level would come down a few notches if I had that extra money in my budget. 😕

Edited November 7, 2022 by popmom

[popmom]

53 minutes ago, Tap said:

For me B12 helps with the involuntary movements. I take a quality B-complex and orally disintegrating methylcobalamin. Taking my vitamins definitely makes my sleep better. 

I have punctual plugs to help with the dry eye syndrome. They are one of the best things I have done for my eyes. My eyes were so dry, I had vertical scratches from my own eye lids. With the plugs, I don't even need to do daily eye drops. Just sporadic drops for specific reasons. 

Stress absolutely makes my fatigue worse. I can always tell when my Sjogren's is flared. I will find my self thinking "it feels like I am carrying a 50lb back pack"....and then I know....my Sjogren's is taking me down...and I need rest. I feel best if I lay down flat and just relax. Low stress movies, hydration and healthy eating. 

If I’m already taking Thorne’s methyl-folate, would it be overdosing to add your supplement? I have 3 bottles of that $$$ stuff. I stopped taking supplements last summer when I started having all the labs done. It was on auto ship. I’ll look into what I can cobble together to get the other ingredients. Thank you for the link.

Another fun thing about Sjogren’s is I can’t swallow large pills or capsules anymore. After reading your post, I decided to take my methyl folate and my honkin magnesium capsule. It got stuck in my throat. Not fun at all. 

Edited November 7, 2022 by popmom

[KungFuPanda]

6 hours ago, BlsdMama said:

I have nothing useful to add to the rest but I wanted to comment on the rest. You’re wise to recognize how online support groups affect your mindset. I joined a bunch of group so I could be proactive and intentional with House changes, etc. But what I discovered was that it was robbing my joy of where I was presently by fixating my mind on what the future might look like. And I really couldn’t handle the overwhelmed caregiver posts. The idea that my husband would grow to resent my care was overwhelming to me entirely and not representative of our life together. Guard your mind carefully. 

If it helps, as the sometimes tired and overwhelmed caregiver, I NEVER resent my son and I want to give him good quality care for his health and everyone’s happiness. I do resent that his disease exists and our poor luck at drawing that card in our family. But the occasional caregiver frustration is almost like being tired from caring for a houseful of tiny kids, but with more worry about the person receiving the care. Sometimes I need a rest or a break that I don’t get, but I don’t actually want anyone else providing the care because we like everything done OUR way and we have a rhythm to our days. Our care schedule creates so many opportunities for close interaction and discussion that’s absolutely precious to us. 

[popmom]

@prairiewindmomma do you take generic or brand name Plaqenil? 
 

My doctor called it in today. I think I read somewhere that the generics can cause more side effects???? 
 

[prairiewindmomma]

31 minutes ago, popmom said:

@prairiewindmomma do you take generic or brand name Plaqenil? 
 

My doctor called it in today. I think I read somewhere that the generics can cause more side effects???? 
 

I’ve taken both. It has been hard to get at times (remember when some thought it was a miracle COVID cure?), and therefore had to do a lot of manufacturer changes just to get supply, but I haven’t had any issues among the 5-6 versions I have had over the past many, many years.

On the other hand, I must have name brand thyroid medicine. 
 

[prairiewindmomma]

Magnesium oil you rub on your skin is bio-effective if you can’t swallow the pills.

[SHP]

I was recently dx with Sjogren's. I then had a endoscopy and theybtook biopsies to check for scleroderma and am having another test in a couple of weeks. Are you seeing a GI? 

 

The endoscopy showed another issue at play, Sjogren's is still on the table but the findings were significant and will impact treatment, hopefully for the better.

 

 

[popmom]

11 minutes ago, SHP said:

I was recently dx with Sjogren's. I then had a endoscopy and theybtook biopsies to check for scleroderma and am having another test in a couple of weeks. Are you seeing a GI? 

 

The endoscopy showed another issue at play, Sjogren's is still on the table but the findings were significant and will impact treatment, hopefully for the better.

 

 

Actually, I just recently saw a GI dr. I’ve had some lower GI issues recently—bad enough to make the appointment and schedule a colonoscopy. I’ll be having that in December. I am not clear on if they will definitely be taking samples to biopsy, but I did make the dr aware of my AI diagnosis. I will follow up on that. Thank you for sharing your experience. 
 

Knock on wood, my GI symptoms have been much better. My labs/samples showed no signs of infection, so I’m hoping it was just some fluke. 
 

eta: I don’t even know what scleroderma is. I’ve definitely heard of it. Off to Google.

Edited November 9, 2022 by popmom

[Alicia64]

For my severe fatigue, a UCLA neurologist recommended the med: Amantadine. I had the kind of fatigue that if I didn't have access to my house, I could have conked out in my car. It was bad.

The neuro said that I should only take it in the morning, and that if I took it later it would give me insomnia.

It's not the kind of med that makes you super hyper and cleaning everything in sight (I wish).

It completely put an end to my fatigue though.

At first she put me on 100 mg., but with her permission, I got up to 200. At 200 some things didn't feel right. So I've been down to 75 mg a morning for at least a year.

I haven't needed a nap in over year.

Good luck to you! I know that doing the round of doctors is really not fun.

Wendy

[Ellie]

Well, bless your heart, (((popmom))).

As Sjogrens is an autoimmune disease, perhaps the Autoimmune Protocol (AIP) would help. Many people have found that eliminating certain foods has made all the difference in the world for them.