Sjogrens syndrome

[kibs]

I was recently diagnosed with Sjogren's symdrone. I plan my first thru-hike of the AT this spring.
Has anyone hiked the AT while dealing with this Autoimmune disease? Right now, I'm dealing with nasty joint arthritic pain. I've been told by my Rheumatologist to begin taking Plaquenil for the pain and joint swelling. How well has that worked while hiking and what other precautions should I take?​

[Traveler]

What does your physician say about your planned thru hike and how it will impact treatment? With noro-virus outbreaks a fairly common element of thru hiking, especially in the "bubble", this alone will be a concern.

[illabelle]

This time last year I had a bout of bilateral joint paint and swelling affecting both arms up to and including the shoulders. Never had anything like it before - totally out of the blue. A thousand things became suddenly difficult or impossible: getting dressed, bathing, opening a door, even pushing open a door, steering a vehicle. How on earth was I going to grip a trekking pole?

Flare-up lasted three weeks, then faded away, leaving permanent (I think) issues with my left shoulder and right thumb. Rheumatologist hasn't named a specific diagnosis (some sort of arthritis?), waiting for further development/definition. Talked about Plaquenil (which I've taken before for another condition), but ended up with Meloxicam. The very first day that I took Meloxicam I felt noticeable relief. Not full range of motion and full pain relief, but definitely an improvement.

I've been backpacking since then. I've learned now to put on my pack (and shirts and jackets) left arm first to avoid stressing the shoulder. The pack strap and weight of pack don't bother me. I typically use my palms on top of my trekking poles. Both joints of my thumb are affected, but especially the one at the base of the thumb. When grasping the pole, I've learned to shift the load to adjacent areas, avoiding that joint.

My hiking is weekend and weeklong. Not sure what a thru would be like for you. Wish you all the best.

[moldy]

Sjogren's syndrome manifest's itself in so many ways that it will be difficult to predict what hiking will do to you. Most people have never even heard of it. Many doctors still deny it's existence. But, if you can take a week of hiking, you may be able to take a month. If you can take a month...well you know. Best thing to do is get out there, take your meds, drink lot's of water. It is truly amazing the cure that the trail provides. I have seen it cure a dozen different disorders. People who start with bad backs, ankles, feet, necks, shoulders, etc. are routinely made better by the trail. (note that I did not say knees). I would like to hear back how you did. Perhaps if you are successful I can pass it on to my wife who also suffers from Sjogren's syndrome. Hiking may be the new chapter in treatment. Trail name Ghinea Pig?

[moldy]

My say's that Plaquenil only lasted about a week before it turned on her. After a few days of feeling better the side effects kicked in. She dumped it.

[TwoSpirits]

I have Lupus, which as you may be aware is an autoimmune disorder similar to Sjorgren's.

Intense activity & physical stress can often cause flare-ups of a wide variety of symptoms, most notably muscle and joint pain, and deep, mind-numbing fatigue. Hiking is of course an intense activity, but the better you know your body and it's response to particular stresses, the better you can plan your hike.

For instance, one especially sensitive trigger for me is summer heat, so I hike very little during the summer months (which where I live begins in May and lasts well into September, if not October.) I do get in some dayhikes during the summer, but I am careful to avoid the hottest days and those hikes are early in the day and generally short. I take many breaks and protect myself from the sun as best I can. These hikes are almost leisurely strolls compared to what I am able to do during early spring and fall.

I completed a section from Harper's Ferry to Rockfish Gap this past October. I had anticipated/planned on cooler temps, but the first few days were hot (mid-eighties) and wicked humid. I pushed myself through it because "Hell I planned and PAID for this great trip!" And so aside from being just plain unpleasant, it really triggered a significant flare in symptoms that I am still dealing with 3 months later. I knew better, but I didn't DO better, and now I'm paying for it.

Pay attention to and learn your triggers (although you can always count on new ones) and respect your body. Repeat: respect your body. Autoimmune disorders demand your attention and respect. Communicate with your physician(s) and develop a care plan with them.

One of the best pieces of advice on Whiteblaze is that a thru-hike is just a series of section hikes put together. I bet that if you take care, take it one section at a time, and don't put yourself at risk by trying to keep up with a specific group or self-imposed schedule, you can have a great hike.

And I hope you do!

[kibs]

Thanks to all on your responses! I will be extra vigilant now that you folks have outlined maybe, what to possibly expect as well as meds that may not be helpful. I have until may to work out the Meds issue. Thankfully, I will not be hiking the "bubble" and plan my start at Harpers Ferry in May. My Rheumatologists seems to think I am still a candidate for the AT.
Compared to all the other insults to my body over the years, this may or may not be a game changer. I intend to hike the AT no matter what-bring it on!!!!

[ldsailor]

Thankfully, I will not be hiking the "bubble" and plan my start at Harpers Ferry in May. My Rheumatologists seems to think I am still a candidate for the AT.!

Uh, I've got some bad news for you if you are heading NOBO. The annual Flip Flop Kick-Off is at the end of April. A good portion of Flip Flops start in Harper's Ferry going north in May. It would appear that you will have plenty of company. Check the announcement at the link below.

Flip Flop Kick-Off

[rocketsocks]

Lots of good advice here thus far, but if your gonna be nine miles from ja-bippsville, bring some doctor prescribed pain meds for break through pain to get you to a town so you can re-access your situation. The plaque Niall worked for a family member, but not for me...everyone perceived pain differently...I’d go loaded for bear. Now all that said, and you prolly won’t like this, but it is possible that thruhiking is not for you, there isn’t a damn thing wrong with getting out there when ya can, short sections do wonders for the soul. Good luck and what ever you do, keep moving!

[TwoSpirits]

...and what ever you do, keep moving!

Dilly dilly!

[rocketsocks]

Dilly dilly!

love that commercial

[kibs]

Ok RS, I will try and keep an open mind but even the thought of doing just sections right now is not acceptable. I'm a stubborn old German! -will keep you all posted. Thanks.

[SwathHiker]

I have Sjogrens and lupus too and take Plaquenil and Methylprednisolone. I am thru-hiking in the Spring starting at Springer. After I was diagnosed I eventually had to stop working because of the unpredictable nature of lupus. I would work long hours as an attorney and then keel over while walking into court, etc. While adrift after being unable to pursue a profession I had worked so hard to make a success, I found myself wandering around on the AT. I was very depended on the meds at the time, and I get flares in the direct sun and also from the heat. But I found the AT was nice and shady! I also eventually reached a good mindset that you can just do what you can do, and THAT'S IT. Someone online pointed out once that with lupus fatigue and joint pain, it is like you wake up each day with a half-dozen spoons, and every activity you choose to do that day will cost you a spoon. So you choose how you'll spend them, and then you stop when you are out of spoons. Otherwise, if you push yourself, you'll reel backwards into a flare and be sidelined for months, similar to what TwoSpirits described.

With the right mindset, I simply started out going for "a walk" and when I got tired I pitched my tent and hangout. Sometimes I'd hang out for 3 days at one shelter. Once I "hung out" for 12 days in my tent waiting to feel better. But I did. And I found that I felt much much better walking the trail than I ever did at home where stress adds to flare potential. I've walked the middle half of the trail a few times now and so I am taking what I've learned and applying it to a thru-hike. Here's what I've learned:

1. Take the Plaquenil, and give it 6 months. The side effects are stomach aches and very weird noises coming from you abdomen. Those passed after 5 months. Now I have no problems. Always take it with food. I don't take it when hiking because I feel much more well. I resume when I get home and it doesn't start in with the side effects again. I take a stash of Methylprednisolone 4mg tablets and will take 2 on days where I have severe fatigue. Or if I have a flare, I take the "dose pack" for 5 or 6 days.

2. I just stopped taking Meloxicam for joint pain. It was really great and works very well. But I gained 50 pounds over a year, and recently learned that this is a possible side effect. That's too much. Now I have pains from carrying all that weight. I'm going to hike it off in the Spring! Vitamin I works alright (Ibuprofen) but Aleve works better for me.

3. There is a prescription cream pain killer called Voltaren Gel that I apply directly to joints and muscles. It doesn't have a smell like Ben-Gay, so I don't attract bears and porcupines!

4. For Sjogren's I haven't had the experience that doctors don't believe it exists. There's a biopsy for it, and a blood test I think, but with lupus they don't bother with the biopsy since it's an auto-immune disorder that frequently accompanies lupus. For that I've had no luck with Restasis. What has helped me most are tear duct plugs. I would suggest getting those before you leave. It's very simple and not too expensive, and helps enormously keeping the moisture in. For hiking I also bring a pair of moisture-retention glasses or sunglasses. They are wrap around and they look like horse blinders. They keep humidity in. On the AT it isn't nearly the problem that it is on the desert sections of the PCT.

5. Even though I can't work without getting flares, I can WALK. But I don't set goals for the walking other than aiming for the very next shelter. I then reevaluate when I arrive, whether I can make it to the next that day. I got to the point last time where 20 mile days were doable with no additional problems except my feet (plantar fasciitis).

6. Make you life as easy as possible and spend the major cash to buy the lightest gear. Spend a lot of time and money on this. You want to glide down the trail. And you want very little weight on your back. You also want something to occupy your mind if you lay up in a shelter to recover for a couple of days. I carried books, but this time I plan to carry my iPad mini. Unlike a kindle, I can use my cel phone data plan with it and communicate with the outside world, and pull up GPS maps. And it has a camera. And I can watch DirectTV Now streaming TV on it!

7. I carry gear that is very very well thought out for joint pain and fatigue, and this works for me:

ZPacks Arc Blast pack at 21 oz. It is smaller than the Arc Haul etc but it has the smaller torso length I need.

Montbell 900fp bag at 24.5 oz. Heavier than a quilt by a few ounces but some days I know I'll be laying around in it all day. It zips but has stretch baffles and thread. So you can sit up cross-legged and still be zipped in. It's heavenly! For quilts I like Katabatic's much better. Much more cozy for long lie-ins.

I also this year got a Thermarest Pro Lite Plus sleeping mat (20oz!). I looked at the others and once you add the weight of the device to inflate them, you are within a few ounces of the same weight. I got that because it's reasonably thick but has built in foam padding because it's a self-inflate. It's comfortable like a real mattress, and more importantly, if it deflates I won't be on the ground, because the built in foam. So my worst-case scenario that I'll be 15 miles from a road and get sick, and my mattress springs a leak, I still can use it to stay off the ground.

I also carry a Pocket Rocket 2 RELIABLE stove and Titanium 700 "Bot" from Varga (Vargo?), so that I can eat warm oatmeal and enjoy my coffee while I am "sacked in" for a few days here or there. The bot has a screw on lid which is great because you can carry your cooking water back from the stream with it, giving you more usable water between trips at night at camp. You can also rehydrate meals in it before cooking to save fuel, allowing you to carry the small canister and not run out while holed up for a few days.

I love the Lightheart Gear and Tarptent tents, but I decided I have to go with the ZPACKS for the weight. I am still undecided on which to get! But the weight issue is paramount to minimize joint pain while maximizing COMFORT. That's the key balance for people with joint pain, you must get comfortable.

Pillow: Nemo Fillo Elite is only 3.5 ounces and has a nice pillow case like covering. I can throw my down jacket under it to add a little more height.

I also carry wool long johns to sleep in and a silk bag liner. I keep my base weight under 12 in summer and under 14-15 in winter, even with all the luxuries. I just bite the bullet and buy the best and lightest. It is the best "health insurance" you can buy on the trail to go light and go comfy!

For Sjogrens bring two bottles of drops, a regular medical-level bottle of drops and a "night" gel version and that will really help. Actually the individual drops are much more sanitary for trail conditions. Just put them in your supply boxes. Get tear duct plugs even if your doc says they don't work. They work for me! Try the Plaquenil. Also if your copay for that is high, look at GoodRX.com for coupons to use when paying cash for it. That ended up saving me hundreds of dollars each year.

Ask for a couple dose packs of methylprednisolone to bring and understand "pulse dosing." Try Aleve; or Meloxicam is great if you don't gain weight on it. Bring warm gloves even in summer as the warmth eases joint pain, just get the fingerless kind.

Get all your shots before you go to minimize illnesses that come along with your weakened immune system, especially tetanus, flu, pneumonia, hepatitis and if you haven't had it get the chickenpox shot (not the shingles shot). Avoid sick people and tight quarters, which means hostels during peak bubbles, and busy shelters. Just tent nearby.

I hope some of these ideas are useful to you. I may see you out there!

[dudeijuststarted]

I don't have Sjogren's but I do deal with a weird endocrine issue which wreaks arthritic madness if I don't stay on top of it, and the weight loss of another thru hike would probably end me. I'm saying this because you should go into your thru with some things in mind:

A.) This hike is going to do insane things to your body hormonally, metabolically, etc. Explain the real nature of your quest with your doctor and let him know you'll be doing the equivalent of running half marathons every day for possibly several hundred days. Get full bloodwork done, get extended scripts on your meds, and work out a way to get bloodwork done periodically throughout your hike. See a nutritionist and understand what guidelines you need to follow for your condition.

B.) Be prepared and comfortable with the result if Sjogren's sends you home. There are many people who complete this trail in their own time battling things like MS, Lupus, etc. If you need to take a break for your health, be a smart responsible hiker and do it. Thru hikes are an extreme thing to do and the value of them over section hiking is very debatable.

Have fun, and good luck!

[rocketsocks]

Ok RS, I will try and keep an open mind but even the thought of doing just sections right now is not acceptable. I'm a stubborn old German! -will keep you all posted. Thanks.

Believe me, I get it, best of luck.

[kibs]

Very good info Swathhiker. You know the saying "be careful what you ask for" Holly C _ _ _!
At least feel very enlightened!! I will take everyone's experience and suggestions with me. What are you using in the drops bottles?? Wasn't clear.
-

[RockDoc]

It's perhaps easy for me to say, but if I had an inflammatory condition I would look for a cause before I accepted strong drug therapy aimed at symptoms rather than causes. Might have to go outside of conventional (prescription-based) medicine. I would start with an elimination diet...

(I had a close family member who had Sjogrens; I couldn't help but notice poor diet, poor sleep--bad circadian cycle, lack of exercise, lack of sun (vit D), basically made all the mistakes of modern life).

[SwathHiker]

Eyedrops. I like TheraTears from Amazon. Or Systane. Regular ones for day and the thick lubricating drops for night. But tear duct plugs and special dry eye glasses really help the most. Oh! and Omega 3 flaxseed oil or fish oil caps. Those are very very good to take everyday to help with dry eyes. Good quality ones. I actual use Udo's Oil 3-6-9 mix from Amazon and I bring those along on the trail. They are heavy.

[SwathHiker]

(I had a close family member who had Sjogrens; I couldn't help but notice poor diet, poor sleep--bad circadian cycle, lack of exercise, lack of sun (vit D), basically made all the mistakes of modern life).[/QUOTE]

This is true. Once you get out on the trail these things fix themselves though since you get plenty of light, exercise and sleep! Food is iffy. But I feel much better on the trail than at home, mostly because of the constant exercise, and the mood boost of being able to spend time outside in the fresh air (I get sick in the sun, and the shade of the "long green tunnel" is awesome). It's also reasonably humid, and my eye symptoms also dramatically improve out there.

[kibs]

Hey Illabelle,
Have you heard back on your diagnosis yet? Just curious what the Rheumy is telling you. Mine does not think I should hike the AT.
However, I am going, but will remain vigilant for possible flare ups that may lead to a bail out( heaven forbid)
Been wanting to do this since I was twelve and not looking for an excuse. Thank you for words of encouragement.
kibs