u/Toothfairy_92

Hey everyone,

General inquiry here. I am newly diagnosed since March. My rheumatologist really thinks I have lupus but isn't ready to give me that official diagnosis. She said it could also be rheumatoid arthritis or even both.

Anyway, I wanted to ask if anyone knows the point of testing hs crp? Last month it was elevated but I was on prednisone. I've since tapered off and started hydroxychloroquine and my recent blood work shows that my hs crp has doubled.

At my last appointment, my rheumatologist said the hs crp doesn't give a lot of information because it just detects generalized inflammation. My ds dna is always high so it's obvious I have inflammation.

So I guess my question is, why even test the hs crp if it doesn't really give a lot of information? I get my labs through quest and it says I have a higher relative cardiovascular risk because of how high my hs crp is. Why am I at a higher risk for cardiovascular issues if the hs crp is just a sign of generalized inflammation?

I'm confused. Can someone educate me please? Lol

Hello! My husband and I are going to NZ in November. I'm a planner so I'm already thinking of souvenirs for some family members. I was wondering if anyone would have specific recommendations for these types of items:

1. Tea. My grandmother loves tea. What is a specific NZ favorite or brand?

2. Children's books. My nephews are 5 and under. I always try to bring them back a children's book that's related to the country we're visiting. For example, when we went to Iceland we bought them books about sheep doing silly things around Iceland and also one about a boy escaping a volcano. OR, if there's something else that would be a better gift for kids, I'm open to suggestions.

3. Spices. Any special spice blends or anything that are unique to NZ?

4. Coffee. Any special blends that are unique to NZ or are an NZ favorite?

5. Art. Aside from pounamu carvings, anything else within the art scope (sculpture, painting, etc) that is unique and recommended?

If there's anything else that would fall under 'not your average ' souvenir, I'd love suggestions! (:

Hello everyone,

Is anyone else having issues with their Ajovy auto pens skyrocketing in price? I used to pay $24 for a 3 month supply, then it went up to $50 for a 3 month supply and now it's $252 for a 3 month supply ($84/pen). And supposedly that's with the copay assistance program through Ajovy with my insurance. I am at a complete loss. I've been on this medication for 1.5 years now and it's been life changing for me. I just want to crawl into a cave and cry my eyes out. It's been one road block after another to get medication and get my migraines under control.

If anyone knows why the price has skyrocketed please educate me. If anyone knows how to get the price down further, please give me instructions to follow.

I'm desperate. 😭

Hello everyone!

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I'm about to finish my 4 month treatment for rifampin and wanted to ask for those who finished this treatment, did your physician repeat the TB blood work to make sure it was out of your system? My pulmonologist apparently doesn't repeat it at the end of treatment and my rheumatologist (who originally found it) didn't think it was necessary. Extremely frustrating because after going through this treatment, it would be nice to know if it worked or not. It just seems odd to me. Is this normal??

Hello!

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I have an upcoming appointment next week for a second opinion with a new rheumatologist. My backstory is that my first rheumatologist was convinced I had rheumatoid arthritis or palindromic rheumatism. My rheumatoid panel all came back negative. One of my coworkers has lupus and was asking me questions and encouraged me to get tested for lupus. I asked my rheumatologist and he agreed. I had several things come back positive on the lupus panel. My rheumatologist was so sure I had lupus, he talked about putting me on hydroxychloroquine and possibly entering me into a study but needed more blood work. The blood work he did came back negative. Now he's backpedaling and saying he thinks it's rheumatoid arthritis but there is a possibility it's lupus but it just hasn't made itself obvious yet, and that he's unsure about putting me on hydroxychloroquine. I'm currently treating latent TB so I have to finish that before starting any medications. But in the meantime, he apparently classified me as having UCTD without reviewing that with me at my last appointment.

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With all this said, that's why I'm seeking a second opinion. From my research, isn't it recommended to be on hydroxychloroquine even if you are classified as having UCTD? Or is that not always the case? I'm currently on prednisone and was doing great until he cut back my dosage.

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Does anyone have recommendations on questions or additional tests I should ask the new rheumatologist? My original provider didn't even tell me he classified me under UCTD until I asked for my medical records so I've been trying to educate myself on what that means and what's recommended.

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And help, suggestions, or advice is much appreciated. Thank you!

Hey everyone!

I have a 6 year old lab beagle rescue. She had her first IVDD flare in 2023. At that time, she went to bed fine but woke up very weak, hunched back, and "tippy toeing" with her back legs in place. Took her to the emergency vet and they said she was fine but did give her a strong pain medication. We did strict crate rest and she was fine. The last few years have been awfully quiet until last week. She couldn't get comfortable. She isn't very vocal but she did have a moment where she kind of suddenly and quietly yelped/whined while looking at her back. But she was getting up and using the stairs with the couch and would just pace the house and then sometimes stand in place. At times she would be trembling while laying down. We didn't know what was going on and thought maybe her stomach was upset. By morning, she was doing much better but I noticed she stopped using the stairs to the couch and wouldn't jump onto the couch, but would jump off. When she'd try to lay down, it looked awkward. So that's when it finally clicked that maybe it was another IVDD flare. So we went immediately into picking her up and making sure she wasn't jumping off the couch and all that. We saw the vet on Monday and they also think it was a flare. Gave us gabapentin to have on hand in case she has another flare, but didn't give us resources for long term care.

So my question is: should we seek a neurologist? Does she need to be on a steroid long term to aid with inflammation? Are there therapies we should be doing?

Also, what does the long term care look like after surgery? Both my husband and myself work outside the home. So in preparation for if she eventually needs surgery, what does the long term care look like?

Thank you for any knowledge or advice that can be thrown our way. This disease is terrible and so scary. We just want to be as proactive as we can and have a plan in place for if that fateful day ever arrives.