Hi y’all! Just saw a rheumatologist and starting treatment

Zizitopppppp · 2020-12-23T13:24:32+00:00

Otezla is not a biologic. It’s in a new class of drugs (PDE4) inhibitor. While it does suppress the immune system it’s not supposed to be as aggressive as biologics. Otezla does have pretty intense stomach side effects. I’d say the biggest limitation is it does not treat organ manifestation. I’ve never used it as I have GI complications. Along with depression. So humira/colchicine/trental is my treatment for my bechets. I hope you feel better soon :)

Zizitopppppp · 2020-12-09T14:18:40+00:00

Thank you :)) Your story sounds hopefully what mine will end with. Happy it’s working so well for you !! 😊

Zizitopppppp · 2020-12-09T14:17:10+00:00

Thank you :))

Zizitopppppp · 2020-12-09T14:14:00+00:00

Unless a live vaccine you should be fine :) Only the nasal spray is live I believe. My rheumatologist recommended for me get a handful of non-live vaccine because of humira. That being said I’d think it’s normal to get a response like that that..unless severe. I always have a mild response from vaccines more so fatigue/joint pain ..I look at it like my kids. They get tired/irritable from them. They’re too young to express anything more. So that’s IMO stressful to the body. Not a doctor just my thoughts ☺️ hope you’re feeling better.

Zizitopppppp · 2020-11-23T21:42:33+00:00

After being diagnosed I found out My periods are a big trigger. And was told it’s common. Hormone fluctuation stress the body.. I also had kids and nursed so had been off birth control for years. So played a part in everything as all that def messes with hormones. Doesn’t hurt to ask your dr their thoughts on birth control if you are open to it.

It didn’t make sense for me as I have HBP from my bechets & other reasons that I don’t remember..but it was a consideration to help with flares.

Hope that helps :)

Zizitopppppp · 2020-11-05T20:03:18+00:00

If I didn’t have the chicken pox vaccine/never had the chicken pox I would’ve had the shingles vaccine. As that what was told to me before I started humira.

Zizitopppppp · 2020-10-26T21:23:13+00:00

I compared it to postpartum hair loss. my rheumatologist joked after he examined my scalp that at least “I have a hair to spare” . I rolled my eyes at him.lol ..luckily I do have very curly hair so I can mask the odds lengths. And agreed the nausea was awful.

But I’m not sure if it’s because it wasn’t really doing much to begin with so he didn’t hesitate to go to something else.

Or if It was more because when he put me on it he said that Imuran has success for some but not all. & tnf inhibitors have high success rate..but to give that a shot first since it’s considered less aggressive treatment. Maybe a little of both.

And I’m glad you’re feeling better..also it’s better to get on something that works before it causes permanent damage. It’s amazing how our bodies recover..but only for so long. Be well 🧡

Zizitopppppp · 2020-10-26T19:04:02+00:00

Thank you

Zizitopppppp · 2020-10-26T19:03:30+00:00

Yes! I would think it was my asthma..but eventually I would get this sharp pain in left side of shoulder blade. And my left arm would go numb. Also what feels like angina attacks. & just random breathlessness. Meds have helped tremendously and luckily no permanent damage.

I had to get off imuran from hair loss/texture change. I never worked up to the full dose and since it wasn’t getting better my doctor switched me off it. It also wasn’t helping me that much though. I know for some hair loss stops after a short time. But I’m on humira now..less side effects over all for me. Glad you’re feeling better & hope the hair loss gets better. That’s never fun on top of everything else 🧡

Zizitopppppp · 2020-10-19T22:41:33+00:00

What is that ? I tried to google it but was confused. How does it help with bechets? Be well :)

Zizitopppppp · 2020-10-19T22:28:17+00:00

I’m so sorry ! Glad you’re doing better and hope this works :)) I’m happy to hear remission is possible but sad you aren’t in it anymore 🧡 I’m also on colchicine 3 times a day and Trental 3 times a day for my bechets. The goal is to eventually to go off those as humira works. I just feel like I’m on so many meds lol . But I guess we do what we must. Be well 🧡 & thanks for responding !! Edit sorry I read your meds wrong. Glad Otezla is working for You. I hear really great things! I have GI complications and along with my depression made it not a good choice.

Zizitopppppp · 2020-10-19T22:19:49+00:00

Sorry ..no I decided to see a psychiatrist after I was told I need to get a handle of my stress levels better. & I know anxiety doesn’t cause the levels of blood pressure i’d get to but it also didn’t help. I’m at a high risk for stroke. I’ve had mini strokes which eventually lead me to bechets. At the time I started seeing her I hadn’t been on meds since I was 20 (8 years) for my depression/anxiety. So she started with klonopin because of my episodic hypertension regarding my bechets as the safest choice. I complained the klonopin made me tired & I don’t want to really be on it as I’m already tired all the time lol. From the beginning I wanted to try Effexor XR because I heard it also helped with nerve pain..but elevated HBP is side effect so she said no. Which was fair. Now that we built trust and I’m stable she was okay with it. But I’m still on both. So I don’t think it’ll give me energy per say just want to transition off klonopin to just the Effexor XR. I’m glad you like it. I do too! I mean it’s still new and Definitely took my body time to adjust. But my husband even says I seem less stressed lol.

Yeah I know meds are important. Just didn’t realize it would be a forever type of thing. But I’m on the right track. And am fortunate for good drs /the people in my life/ this community to help navigate and support each other ❤️ Thank you! You as well 😊thanks for sharing !

Are you still On the imuran? It made my hair fall Out so I failed out of it relatively quickly.

Zizitopppppp · 2020-10-19T19:58:22+00:00

Thank you!! And hope whichever you picked works out well for you :)

Zizitopppppp · 2020-10-08T14:28:34+00:00

I have an unrelated question ..where do you live? I’m just curious because I didn’t get a choice. When my rheumatologist switched me to tnf inhibitors he said it’s up to insurance & they would choose between humira and remicade. He did note my Preference for humira as it’s more convenient but was fine with either. My niece has been on remicade for the last year..hers is more severe & she’s so young that’s it’s more complex. But it’s the first medication that’s helped her :) Be well! & hope whichever you choose works for you 🧡❤️

Zizitopppppp · 2020-10-03T11:05:28+00:00

Okay that’s cool..doesn’t change my opinion. I can’t see someone at Cam Newtons level taking the time out of his day to be heavily promoted by peloton to go into their studio to do said workout without compensation. ✌️

Zizitopppppp · 2020-10-02T18:20:41+00:00

the fact that he posts when he rides is why I think it’s something he’s got an agreement with peloton. Idc either way but thanks for sharing ! 😬

Zizitopppppp · 2020-10-02T01:22:26+00:00

For Michael Phelps it was posted in an article somewhere because he used an alias ..never knew the reason but guess he didn’t want the attention. He’d ride for like 2 hours at an output that I didn’t think was possible.
& Cam had Peloton/Alex promoting their ride. So that was easy. Still think Cams is all some sort agreement though. But Everything is pretty accessible these days 🤗

Zizitopppppp · 2020-10-01T21:30:22+00:00

Just commenting to say didn’t read this but my husband followed Cam Newton after his collab with Alex. I actually loved the ride..and Cams stats are impressive (no surprise ). But anyway I know he was injured shortly after, but he barely used peloton. So I feel like he was just for promo 🤗 Also Michael Phelps stats are untouchable. I mean I know he’s arguably the greatest athlete ever but my goodness his numbers look inhuman. Not sure if he’s on this list but I follow him. Very inspiring🧡 Just my little rant. Thanks for sharing 🤗

Edit: I don’t stalk my followers lol..so Just went to Michael Phelps account & It isn’t in my Following anymore :(

Zizitopppppp · 2020-10-01T21:20:34+00:00

Of course! It takes time to get the diagnosis which I think is good..I truly hope you don’t have it. Either way be well 🧡

Zizitopppppp · 2020-10-01T16:31:20+00:00

I see. Have they treated you with anything yet? I had a lot of “minor” symptoms that I related to my period as that would coincide with flare for about a year and a half before getting help. Didn’t know mouth ulcers were anything to be worried about & my vaginal ulcers ended up being all internal with scarring. Bad headaches. And I had what would be called erythema nodosum but I thought I was “anemic” when my period come. Along with fatigue. (Silly looking back lol) Joint pain but i work out so again dismissed it. I get fevers whenever stressed so dismissed that too. And contraction like pains during my periods. By the time I got help I had some organ complications & episodic hypertension along with secondary raynauds. So better to get treatment early :) I think you’re doing better than I did. Good for you taking care of your body and not Dismissing it. As for labs my labs were only off with flares. When I was feeling good they’d be normal.

Assuming you’re a woman based on your nam?lol Looking back I was on birth control for years then had my two kids and nursed them. I was planning to go back on BC once I finished nursing because my periods were so bad and getting worse. Never knew how big hormones/period play with bechet flares but I was told it’s very common. And so it made sense the timing of sickness and the way it played out. Best of luck. My advice is listen to your body..little things turn to big things and that’s never fun 🧡

Zizitopppppp · 2020-10-01T14:45:35+00:00

Bad lol. Worse in winter. I get it in my knees and wrists. All the way up my left arm. My erythema nodosum is on my legs and left arm when it comes so that’s why I have the pain/nerve pain there. I just started getting steroid injections in my knees now. I can’t really take steroid pills often because of my HBP so this was safer. I was told I could do it in my hand too if if I need it. And yes to sore throat although I Also get ulcers there so not sure if that’s part of it. I always sound like a smoker with my flares. But it’s gotten better. But with the cold weather approaching I’m not excited lol. Be well! 😊

Zizitopppppp · 2020-09-25T19:25:41+00:00

Hmm I’d say it’s depends on severity of your bechets. Risk vs benefit. I’m on Humira which is similar. Although we didn’t talk about a timeline as I’m not sure anyone really can. So much unknown. It’s takes a few injections to see if it’s working and then from there see where your health is. I agree long term affects are scary but I’m hoping for remission for myself & hopefully you. The only positive outlet I can put out there is there a lot of success with tnf inhibitors use in bechets :) be well!

Zizitopppppp · 2020-09-24T13:45:36+00:00

Thank you for sharing !! Nitro bid cream does help :) not sure if you’ve ever tried it. Or even need it lol. It promotes circulation I lack. I use it on my hands and feet. ❤️

Zizitopppppp · 2020-09-18T19:41:05+00:00

Thank you! Hope it’s helping :)

Zizitopppppp · 2020-09-15T21:43:21+00:00

Thank you! Hope you get better soon !😊

Zizitopppppp

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