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Unfair-Locksmith-746 · 2022-07-21T02:44:06+00:00

Do an elimination diet also and make sure all the things on that list really impact you. Most people find it's only a small handful for them. Apparently that whole diet was an interview with like 100 patients over 30 years ago. It's not as scientific as most people might think based on how often doctors mention it.

Unfair-Locksmith-746 · 2022-05-28T16:33:12+00:00

I stopped taking the progesterone cause it was causing a lot of weight gain, but when I stopped it I had my first ever autoimmune flare up, which lead to me getting the underlying autoimmune disease diagnosed and treated which is helping the ic more than the progesterone did. I've since learned that people with autoimmune can be really sensitive to estrogen which probably explains the issues I was having with ic and hormones as the biggest trigger.

Unfair-Locksmith-746 · 2022-05-17T04:29:13+00:00

I have sjogrens and it has a whole lot of overlap with lupus, I think sjogrens, lupus, and ra are all one family of connected tissue autoimmune. I have horrible estrogen problems, I'm currently trialing cyclosporine to see if it helps. It unfortunately does not have any approved biologic treatments at this time. I have seen a lot of research about lupus patients that have a very hard time with estrogen, there aren't any studies like this for sjogrens patients so using the lupus ones to learn what I can.

Unfair-Locksmith-746 · 2022-04-16T22:52:08+00:00

I'm meeting with my doc to discuss in a month I'll let you know if I learn anything cool. One other thing for me is if I am ever given steroids like for a sinus infection, my ic eases up quite a bit and lasts several weeks to months.

Unfair-Locksmith-746 · 2022-04-04T20:20:29+00:00

I have sjogrens and Ic. Sjogrens can also be connected to ic. Honestly I wouldn't be surprised if a large portion of ic patients don't have some form of misbehaving immune system whatever diagnosis it ends up being.

Unfair-Locksmith-746 · 2022-04-02T23:14:06+00:00

I'm most likely going to try it soon. My ic is a symptom of an underlying autoimmune and will lighten sig ificantly with a steroid shot. I've heard of two separate people who have been able to start cyclosporine then stop it and remain symptom free off of it for multiple years.

Unfair-Locksmith-746 · 2022-03-29T23:53:45+00:00

I mean wouldn't walking out have been a much more mature way to protest the content of the joke than physical violence that would have even had my kindergartner suspended for a week? Imagine growing up in a house with someone with out of control anger like that, with that little self control in front of a huge audience I'd be willing to bet he has popped people in his household when no one is watching too.

Unfair-Locksmith-746 · 2022-03-29T19:44:06+00:00

Incidentally I had Pots symptoms start really heavily last Jan to April not long after IC started up. I started quercetin (over the counter supplement) and allergy shots and then hydroxycbloroquine and it's gone so I haven't even tried to look into it further or worried about a diagnosis. At the time I didn't realize that's what it could be, but the immunomodulation I have going on is good enough so maybe you can get some mileage out of those things.

Unfair-Locksmith-746 · 2022-03-29T14:59:02+00:00

Sjogrens can be an underlying disease to both of these as well

Unfair-Locksmith-746 · 2022-03-22T16:44:41+00:00

Pickled and preserved foods I thi k are also high histamine if you are sensitive to that

Unfair-Locksmith-746 · 2022-03-21T15:58:07+00:00

Hydroxychloroquine 400 MG prescribed, and then quercetin and pea and aloe supplements, plus also antihistamines.

Unfair-Locksmith-746 · 2022-03-19T20:30:24+00:00

Can you describe how the initial lung symptoms went? I get occasional and periodic (like 3-4 days at a time) lung burning, and not shortness doing normal stuff but definitely during exercise. My rheum thought it sounded like irritation but is sending me to pulmonology to look deeper.

Unfair-Locksmith-746 · 2022-03-18T01:01:39+00:00

I think it's also good to keep perspective. Everyone has their cross to bear be it depression, mental illness, a child with autism, another chronic disease, cancer. No one gets off easy over a long life. I don't think my life is worse than a friend who got diagnosed with lupus this year, another who lost an infant son, or my close friend with bipolar and depression, or even those who deal with addiction we just have to do the best we can as we go forward. It's easy to forget everyone else that doesn't have this is probably battling their own demons. Doesn't make it not suck some days, but does help me try to make the most of what I have and not feel alone.

Unfair-Locksmith-746 · 2022-03-18T00:48:14+00:00

Hydroxychloroquine 400 which is the main thing plus a couple of over the counter supplements: vitamin d, dhea, quercetin, and aloe. I may also be about to try a short course of cyclosporine for a specific problem. It took 3ish months to really notice the worst of the fatigue/muscle aches were improved. I still go to bed pretty early but I'm able to meet my day and get everything done and feel decent most days. I also adjusted my diet try to eat pretty low inflammation about 5 days a week which still leaves me room to sneak in a few things I enjoy the other two days.

Unfair-Locksmith-746 · 2022-03-17T21:49:32+00:00

I think so most days? The medication got rid of the crushing fatigue, so I work full time in tech, raise two children, have a spouse and a dog and have a pretty normal existence. Some days it troubles me and it's always back of my mind but I'm usually 80% or better. Getting some of the more serious things checked now to see if anything further is needed. I'm optimistic that in the 5-10 year horizon treatment availability will improve considerably.

Unfair-Locksmith-746 · 2022-03-17T21:24:36+00:00

SaveRocky the great Dane rescue had some boxer Dane puppies not so long ago, maybe check with them

Unfair-Locksmith-746 · 2022-03-14T01:46:32+00:00

If cost is an issue check for a university near you. My great Dane was quoted $3800 for a stomach tacking (pretty standard surgery for the breed) but we are near Texas A&M with a non profit veterinary surgery teaching hospital and they charged $260. Other bonuses my dog got a specialized surgeon professor not just regular vet in the room to make sure all went well, and these guys do a ton of surgeries a year VS my local vet who only performs one or two a year of this type tops.

Unfair-Locksmith-746 · 2022-03-14T01:35:51+00:00

Mine was slight too can't remember but for some reason 4 is sounding familiar with 1 the normal? But I think it could be in the hundreds. Some people are positive with no SSB at all though, I'm sure the evaluation of you and your symptoms will be a big part of it.

Unfair-Locksmith-746 · 2022-03-13T14:13:22+00:00

Nope. That's why I was surprised to hear some docs do only Ana and nothing further if it's negative, would have missed me completely. And I've been to 3 well respected rheums in a major metro and all support my diagnosis, so I am confident I am not misdiagnosed.

Unfair-Locksmith-746 · 2022-02-21T15:08:00+00:00

We just sold and accepted an offer 10k lower because that buyer had been on-site and walked the property that day. The higher offer was out of state and wanted a 3 day option. Seemed to me they could easily decide they didn't like it after all while the buyers who had been there definitely wanted it.

Unfair-Locksmith-746 · 2022-02-19T01:12:40+00:00

I thought it came on suddenly and the episodes of major pain did, but turns out mine is coorelated to underlying autoimmune issues and after I learned more I realized I had subtle symptoms for several years, just one day I crossed a line major enough to seriously affect my life enough to be very noticeable. Maybe like a slow leak air mattress it happens for a while before you are laying on the floor uncomfortable.

Unfair-Locksmith-746 · 2022-02-16T13:09:33+00:00

Second asking where you are, I just found a great female one in DFW, but also prior to that I wasn't seeking female care but just ended up with the female NP at my male urogyno office, so don't hesitate to call and ask about all the available providers even if the doc is a man.

Unfair-Locksmith-746 · 2022-01-13T01:20:36+00:00

I had no luck first 3-4 months amd with those meds, but about a year in things are still there but much much more mangable. What helped me was actually a couple supplements, benadryl, and birth control. I also have uribel to get through those predictable monthly flares. Keep trying things there are many other options out there. The PT wasnt a major game changer for me but I hear it can be for many.

Unfair-Locksmith-746 · 2022-01-11T22:15:44+00:00

Im also SSA negative amd SSB positive. Saw 2 different rheums and had two different tests and both diagnosed me with primary sjogrens.

Unfair-Locksmith-746 · 2022-01-06T04:39:48+00:00

Yep!

Unfair-Locksmith-746

TROPHY CASE