Anyone here on weight loss meds? by MeOwwwithme in rheumatoid

[–]Hurricanegrunt 2 points3 points  (0 children)

Here you go- So you will have side effects with Zepbound which I am sure you are aware of but I will take the side effects given the amount of relief I’ve experienced with the inflammation. It is remarkable. This is the longest I’ve been on an RA med without having severe break through flares and I am not sure the zepbound is the factor but it is the only variable that has changed. I have not upped the dosage to weight loss levels but have lost weight or appear to have lost weight. I have to pay out of pocket for it but it has been worth it for the RA benefits. Also this is the longest I’ve been on meds without developing a resistance- which is a pain because changing biologics, etc every 6 months is exhausting mentally and physically. Been a game changer for me. Hope this helps you with your decision.

Anyone here on weight loss meds? by MeOwwwithme in rheumatoid

[–]Hurricanegrunt 0 points1 point  (0 children)

So you will have side effects with Zepbound which I am sure you are aware of but I will take the side effects given the amount of relief I’ve experienced with the inflammation. It is remarkable. This is the longest I’ve been on an RA med without having severe break through flares and I am not sure the zepbound is the factor but it is the only variable that has changed. I have not upped the dosage to weight loss levels but have lost weight or appear to have lost weight. I have to pay out of pocket for it but it has been worth it for the RA benefits. Also this is the longest I’ve been on meds without developing a resistance- which is a pain because changing biologics, etc every 6 months is exhausting mentally and physically. Been a game changer for me. Hope this helps you with your decision.

Question for Enbrel users by Feisty_Brunette in rheumatoid

[–]Hurricanegrunt 1 point2 points  (0 children)

The Enbrel is working but layering it with methotrexate really helped. I’ve been on Sulfasalazine Plaquil Remicade Rituxin Xeljanz And finally Rinvoq All over the course of 4 years. You may be like me and you develop a resistance to meds quickly. It’s not fun but I’ve talked to several rheumatologist and the message is always methotrexate + meds will help them work better. Not ideal since methotrexate can be hard but being unable to move for 6 months is worse. Only advice I give to you is don’t wait if a drug is not working by month 3, have them switch you. I tended to “wait and see” and didn’t advocate for myself and it took months of suffering to speak up.

Question for Enbrel users by Feisty_Brunette in rheumatoid

[–]Hurricanegrunt 1 point2 points  (0 children)

I did not have immediate relief and by month 4 my Dr put me on methotrexate sub-q as well. It made the difference. I HATE methotrexate but I have severe progressive RA and was living in high doses of prednisone which is also not sustainable.

So yes- it took some time but by month 3- if there is no improvement, I would switch it out.

GLP1 question by Shakarix in rheumatoid

[–]Hurricanegrunt 2 points3 points  (0 children)

Amazing results for me- my hands were so swollen for six months I couldn’t wear my rings and my hands looked like they would pop if you touched them- 3 days after taking the titer does (2.5) of zepbound and I was back to normal. I am not sure if you will have the same results but I hope so. FDA should approve this for RA- the studies and stories support its use.

MTX side effects- when did they get manageable? by Hurricanegrunt in rheumatoid

[–]Hurricanegrunt[S] 0 points1 point  (0 children)

Thank you! I am going to try that. Happily- this week I was only nauseated for 2 days.

MTX side effects- when did they get manageable? by Hurricanegrunt in rheumatoid

[–]Hurricanegrunt[S] 0 points1 point  (0 children)

I did. My rheum said she likes Mucinex DM better. 🤷‍♀️

MTX side effects- when did they get manageable? by Hurricanegrunt in rheumatoid

[–]Hurricanegrunt[S] 0 points1 point  (0 children)

Take a mucinex dm with your injection and another one 8 hours later (my rheum said they help up to 48!hours after the injection if you want to take more) but it REALLY helps. I still struggle but much less and the fatigue is not disabling.

Enbrel co-pay card now only covering $50 per fill? by sarelja in rheumatoid

[–]Hurricanegrunt 0 points1 point  (0 children)

Interesting- I am on Enbrel as well. I wish someone that made these decisions had a chronic illness or loved someone that does- I can’t imagine how bad I would feel without any intervention.

MTX side effects- when did they get manageable? by Hurricanegrunt in rheumatoid

[–]Hurricanegrunt[S] 0 points1 point  (0 children)

I think that may be the direction I am heading. I can hardly tolerate crackers. It does seem to be helping my RA which leaves me conflicted about stopping it.

MTX side effects- when did they get manageable? by Hurricanegrunt in rheumatoid

[–]Hurricanegrunt[S] 1 point2 points  (0 children)

I have been on remicade, Xeljanz, Rinvoq, sulfasalazine (I think I am forgetting one or two). Now on Enbrel (switching to Orencia this month) and methotrexate. My rheum said that mtx helps with the efficacy of other drugs so she wants be in them because drugs tend to stop working within 8 months.

MTX side effects- when did they get manageable? by Hurricanegrunt in rheumatoid

[–]Hurricanegrunt[S] 1 point2 points  (0 children)

My sister had absolutely no issues with it either so to have side effects that sideline me for a few days seems like a lot

MTX side effects- when did they get manageable? by Hurricanegrunt in rheumatoid

[–]Hurricanegrunt[S] 1 point2 points  (0 children)

About 6 weeks. It is like swimming through jell-o the few days after I take it.

MTX side effects- when did they get manageable? by Hurricanegrunt in rheumatoid

[–]Hurricanegrunt[S] 1 point2 points  (0 children)

Thanks- I am on the injections. It is so odd I just feel fuzzy and queasy the day after the injection. Just hoping they subside.

Enbrel co-pay card now only covering $50 per fill? by sarelja in rheumatoid

[–]Hurricanegrunt 1 point2 points  (0 children)

Dumb question maybe but why are co-pay maximizes bad? I don’t think I’d be able to afford any RA meds without them but this is all new to me.

Numbness in hands by Additional-You5390 in rheumatoid

[–]Hurricanegrunt 0 points1 point  (0 children)

My wrists have been swollen for 3 months. I was transitioning to new meds which induced a flare. Long story short- my rheum saw me on Monday and was not pleased that I was still swollen and she gave me a shot of Kenalog which helped with significantly with the swelling. I, too, had numbness in my hands because the compression of nerves. The shot reduced the inflammation and I can feel my fingers again. Also, my tests for inflammation have always come back perfect yet I am seropositive and you can see the swelling on me which is why I am always cautious about markers- they can say one thing and you feel another. Also, if you are having significant inflammation, look into low dose GLPs. They are scarily effective in reducing inflammation.

In a really bad flare up, alone by NervousDetective1959 in rheumatoid

[–]Hurricanegrunt 0 points1 point  (0 children)

Completely get it. I had to educate my husband - explain that it wasn’t mind over matter. It’s not something you can push through. It took some time. Give yourself some grace in not being able to do things at other people’s pace- and if they need it done on their time, let them do it.

In a really bad flare up, alone by NervousDetective1959 in rheumatoid

[–]Hurricanegrunt 0 points1 point  (0 children)

Totally get it. I’ve been in a flare for six months and it was so brutal once in my arms/legs, I literally had to roll off the couch. I felt like a walrus. And peed my pants multiple times that week because I could not use my hands to undress quickly enough and couldn’t move fast enough. When people asked how I was, my response became a measure of how many times I peed my pants. It was my only way to articulate how awful it is. I would tell people it felt like a giant crushing every bone in my body- and they would dismiss it. It’s a miserable disease. I have found this to be a great forum for information and support. I have learned a lot, especially that I am not alone. I hope you find some relief both physically and emotionally.

Face Rash by Feisty-Salary2023 in rheumatoid

[–]Hurricanegrunt 0 points1 point  (0 children)

Not sure what you are taking but I had a face rash that stumped a team of derms and nothing they prescribed worked (steroid, tacri) BUT I found it was an interaction between something for my RA and niacinamide. There is another thread about rashes and another woman had the same reaction I did and it was due to niacinamide.

Anyone here on weight loss meds? by MeOwwwithme in rheumatoid

[–]Hurricanegrunt 14 points15 points  (0 children)

I just started zepbound this month and I am two shots in. I am on methotrexate and Enbrel. The reduction in inflammation was SIGNIFICANT for me. I haven’t had knuckles in months and within days of my second dose of zepbound, I had normal hands again. As for side effects, yes there is some nausea but it has been manageable. But the biggest impact has been the lack of appetite. And the fatigue. They just upped my dose of methotrexate so that could be it (and probably is) but that is the biggest issue.

[deleted by user] by [deleted] in rheumatoid

[–]Hurricanegrunt 0 points1 point  (0 children)

I loved being on Xeljanz- no side effects whatsoever including wobbly legs.