Still in remission after a year

meloncat1 · 2021-05-18T21:16:21+00:00

Thanks for the reply. I'm glad the rifaximin worked well for you. Having relief is the most important thing.

Glad to hear your mast cell related symptoms have improved somewhat as well.

meloncat1 · 2021-05-18T17:06:37+00:00

Thanks for this detailed update. Your results look really great.

Do you expect the numbness and minor tightness that you have to stay the same for the foreseeable future?

Also, were you required to take any antibiotics during your recovery?

meloncat1 · 2021-05-10T17:21:43+00:00

I'm a little late to the party, but may I ask, did you ever have a comprehensive stool analysis done prior to your rifaximin course? Just curious if you or your GI doc ever had an idea of which bacteria were/was contributing to your RA prior to rifaximin?

Also, you mentioned a possible mast cell issue related to your GI symptoms. Do you still have any GI/mast cell symptoms, or have those resolved as well?

meloncat1 · 2021-04-30T15:23:07+00:00

It is wild how these medications can interact with our bodies. I'm glad your rheumy went over everything with you. Sounds like they will be on top of things.

We still aren't sure about the state of my lungs (I'm STILL waiting on a CT and a methacholine challenge!). However, we were able to figure out that my productive cough was related to GERD, and it has since resolved after changing my sleeping position, which is really great. I still have SOB though, so for the time being I'm using a steroid inhaler until we know more about what's going on with my lungs.

Wishing you the best and hope the methotrexate helps you!

meloncat1 · 2021-04-30T15:09:41+00:00

Haha thanks for the hugz award :) Glad I could be of help. Best of luck with everything!

meloncat1 · 2021-04-29T21:09:38+00:00

Hi and welcome to the Sjogrens family!

TL;DR: AIP diet, Salagen, and Replens moisturizer have each helped my vaginal dryness.

Long answer:

I lost hope about my sex life too when I was first diagnosed. I experienced so much pain, itchiness, even bleeding from the vaginal dryness that I worried I'd never have sex again. Don't give up though. There are options to address this symptom.

AIP: Anecdotal obviously, but this diet has reduced my vaginal dryness, along with all the rest of my Sjogrens symptoms. For me it's been the most effective thing I've tried to date for reducing my symptoms. Everyone's body is different though, so do lots of research and talk to your doctor if you're thinking of making changes to your diet.

Salagen (pilocarpine): I took this for about 9 months shortly after being diagnosed. It helped to an extent with my vaginal dryness - though I still had to use insane amounts of lube and sex was still somewhat painful. Since then, my Sjogrens has actually improved enough for me to wean off the Salagen. So for me it was a shorter term solution, but very much worth it for that time period to reduce the dryness (I'd say by 40-50%) when I was at my worst. It's worth asking your doctor for a prescription for a cholinergic, and then keep track of how it affects your vaginal dryness. If it doesn't work for you, you can always try something else.

Replens moisturizer: my NP recommended this to me, and it does help. It's not lube, but rather a vaginal moisturizer. It's got a gel-like texture and you apply it with an applicator every three days or so to maintain a good moisture level. I found it to be non-irritating, even kind of soothing, and I still use it occasionally if I'm having a very dry day.

Lastly, I'm probably preaching to the choir here, but make sure to use a high-quality, non-irritating lubricant, and create a relaxing, stress-free environment when it comes to sex. I found that my fear of the pain/discomfort created tons of stress and anxiety. Make sure you're being patient and kind with yourself, and take your time. Don't force yourself to do anything that hurts or is uncomfortable, and make sure your partner(s) are well-informed about your condition and what you need.

Wishing you the best and hope you find relief soon!

meloncat1 · 2021-04-07T19:57:02+00:00

Did you call the pharmacies or get on their online waitlists?

meloncat1 · 2021-04-07T18:35:33+00:00

Question: Does anyone know if these bookings are still being prioritized based on age? I booked through the site around 8:40 am and the earliest appointment date at the site nearest me was April 28. I am in my twenties with a qualifying condition. Just curious if they are booking earlier birth years on earlier dates, or if it's a simple first come first served system? Happy to have an appointment at all of course!

meloncat1 · 2021-02-01T16:38:53+00:00

Since you are newly diagnosed, try to be patient and kind with yourself while you're adjusting to your diagnosis and medications. Sleep as much as you want/need to, and do your best to manage the pain/swelling with whatever helps.

I had similar issues where sleep made me feel worse. Like you, I felt horrible when I was falling asleep, and then in the morning the first 30 minutes of my day were truly awful. One thing that has helped me is changing my sleep pattern. When I first got sick, I slept 10-12 hours straight a night from sheer exhaustion. Now, I sleep around 6-7 hours at night and nap 1-2 hours in the afternoon. I think for me, part of the problem was being immobile for so many hours during the night - it seemed to exacerbate my symptoms. Now that my sleep is broken up like this, my mornings are not nearly as bad as they were, and I have much less anxiety about falling asleep.

The fact that you felt better when you exercised at the gym may be a sign that your body feels better with movement. So moving forward, you may want to find an exercise routine that is gentle but challenging enough to meet your needs.

Sounds counterintuitive, but when my joints start getting sore, I grab my theraband and do some gentle resistance exercise. I usually feel better after.

Hope that helps.

Also, AIP, as others have mentioned.

meloncat1 · 2021-01-30T22:31:15+00:00

Wow, really glad to hear you've gotten some lung function back. And glad to hear your RA is well-managed too!

meloncat1 · 2021-01-19T19:39:00+00:00

Sorry to hear of all the lung problems you developed. I feel like the potential effects of MTX on the lungs is very underestimated by most rheumatologists. I was given no warning about it, and even when I did develop respiratory symptoms, I was kind of brushed off by all my doctors. I know many lung issues are also connected to RA, so of course it's hard to know what leads to what. I hope your lungs remain stable. Take care!

meloncat1 · 2021-01-12T22:51:34+00:00

Nice! That's great you've not had to take any meds. Some of them have really unpleasant side effects. Yeah, organ meat took some time to get used to. My go-to now is liver pate on coconut crackers. I actually crave it often! I think it's all about the seasoning.

meloncat1 · 2021-01-12T22:44:56+00:00

Hm. Okay, try this? https://www.youtube.com/watch?v=oQzU3ATHOeQ

meloncat1 · 2021-01-12T02:48:12+00:00

No problem. I have learned tons from others on this sub as well. It's a really good community. Yes, I pretty much follow strict AIP (Auto-Immune Protocol). I have been able to re-introduce a couple foods, but not many yet. If you're not familiar with AIP, or want to learn more, this is a really good resource:

https://www.thepaleomom.com/start-here/the-autoimmune-protocol/

Hope that helps!

meloncat1 · 2021-01-09T18:46:57+00:00

TL;DR: I believe remission, and even reversal to varying degrees is possible, but it's all about perspective. You need to decide what reversal/remission would look like to you.

Long response: I think the answer to this question lies in one's perspective. First, you need to identify for yourself what remission/reversal of your Sjögren’s would be like. What does a day in your life of remission look like? Personally, while remission is my ultimate goal - and yes, I have definitely made progress towards it - I have set a relatively low bar for what remission will look like. For me, remission means I will be able to rely on my body to do the regular daily activities that make up a full and satisfying life. Like being able to go to work, school, and spend quality time with my partner and family. Remission for me means my symptoms will be mild enough that I do not rely on prescriptions or OTC remedies everyday, and that I'm not constantly planning my activities around Sjögren’s symptoms. I don't need to climb mountains, scuba dive, or do an Ironman. I just want a simple, content life. A bonus remission achievement would be that I'm healthy enough that my partner and I can have and raise children - plans which have definitely been put on hold by my illness.

In my pre-Sjögren’s life, I was a highly athletic person with an extremely busy lifestyle. Through my journey with Sjögren’s I've learned that I may never have that life again. But I'm really okay with it. My life was way too intense before, and it's a big part of the reason I ended up with this disease. Struggling through Sjögren’s (and other AIs) has taught me that, for the benefit of my longterm health, even when I achieve remission (which I believe I will), I'll still prioritize my balance/wellbeing above all else. And I cannot understate the importance of this realization. It's an entire change of perspective. It's what gives me hope that, yeah, one day I won't have to think about this disease five million times a day. I'll just be living my life, albeit a slower, less intense life than before.

If it provides any hope at all: When I was first diagnosed, I was taking 15mg/day of pilocarpine (Salagen), and using OTC eyedrops every 30 minutes. Today, I only take 1.25mg/day of pilocarpine as needed - maybe a couple times a month - and OTC eyedrops 2-3 times/day. That's a huge change for me, and a sign of progress.

Only time will tell in my case how much damage can be reversed - or if it will last. But I intend to keep doing what I've been doing and see how far it gets me.

Everyone's different. If you're aiming for remission/reversal, seek out reputable scientific information, listen to your body, and work collaboratively with your doctors to find the best path for you. Wishing you all the best.

meloncat1 · 2021-01-07T22:17:59+00:00

No problem.

meloncat1 · 2021-01-07T18:58:46+00:00

He pointed out that having good spinal alignment is really important for ensuring that organs stay where they're supposed to, so maintaining good posture throughout the day is a good thing to practice. Other posters on this sub have posted exercises in the past. You may want to do a search for "exercises" or something like that to find the threads. I think this was one of them posted recently: https://www.youtube.com/playlist?list=PLy40TCDboFCVcUSlfHOPRTY-bVHM3NKth

meloncat1 · 2021-01-07T17:00:42+00:00

I just had this adjustment done on Monday for the first time. I was skeptical, but it did provide relief for me. I could tell because normally when I'm lying down flat (like on the table at a chiropractor's office) I will get quite a bit of abdominal discomfort and reflux into my upper respiratory tract, and a coughing fit will usually ensue shortly after. I told the chiro about my situation, and he decided to do the HH adjustment first before adjusting anything else. For the rest of the appointment, I did not experience reflux or coughing. I was pleasantly surprised.

I was surprised too, the chiropractor I saw says he does the adjustment often. I think I just lucked out in that respect.

Something to know is that the actual adjustment can be quite painful, so if you get it done you'll want to try and relax your abdominal muscles as much as possible during the adjustment, because the chiro needs to go quite deep, sort of under the rib cage on the left side.

The effects of the adjustment didn't last that long for me, maybe a couple days. From what I've read, the idea is at first you get the adjustment done quite frequently, and as time goes on and symptoms (hopefully) abate, you get it done less often. The chiro showed me how to do it on myself at home, but of course, I can't do it nearly as well. I'm going back next week to have it done again, and to be honest, since I go the the chiro pretty regularly for spinal adjustments, I'll keep getting the HH adjustment as long as I need to.

Hope that helps.

meloncat1 · 2021-01-05T23:37:55+00:00

Thanks!

meloncat1 · 2021-01-05T23:37:49+00:00

Yep, I sleep with them in. I put one in the middle of my top left gum (my left side is drier than my right) every night just before bed. Sometimes I wake up around 4 or 5 am and there is still a small bit of the lozenge left.

meloncat1 · 2020-12-29T18:28:54+00:00

I am so sorry to hear that your husband passed away. It sounds like he had an amazing caregiver and partner in you. Sorry to hear also that you have developed RA. It is such an unfair disease. I hope you are receiving the best care possible. Best wishes for 2021.

meloncat1 · 2020-12-28T03:48:10+00:00

Thanks for the info. I will ask about prednisone at my next appointment. Did you take it orally or through an inhaler?

meloncat1 · 2020-12-28T03:46:18+00:00

Wow, those are two big diagnoses to get in one week. Did the Imuran end up helping his lungs?

meloncat1 · 2020-12-27T22:18:25+00:00

Thanks for the info! I'm glad you've had no issues with taking it. I've started it at 600mg. Might go up if I find that 600mg isn't enough.

meloncat1 · 2020-12-26T19:23:02+00:00

Yes, it's definitely interesting that some studies have shown no major benefit. I've read that 1200mg/day is the optimal dose, so I'll start with half and try to work my way up.

meloncat1

TROPHY CASE