Thank you for connecting. I haven't talked to anyone who also has RA and Sjögrens. I haven't heard of Xeljanz. I think I mentioned I have been on Humira, Enbrel and now Orencia (along with methotrexate since beginning treatment. Humira didn't do anything, with Enbrel I had bad skin reactions, so now on Orencia. I was told it needed 12 weeks to "kick in" but I'm at 10 and 1/2 weeks and MAYBE minimal improvement. That may be because I had 5 days of prednisone my dr prescribed due to severe pain.
Is the Xeljanz a biologic or something different?
Thanks!
Hi there. You can read all about it on Xeljanz.com. For me it has been a life changer and I am grateful. I have not been on Humira but I have been on Enbrel and Orencia and a long list of others that works for a short period of time and then stopped. I wish you the best. By the way Xeljanz is 5 mg twice a day in pill form.
Marg, I'm wondering if you could share a bit more about your situation. Have you been living with RA for a while and recently discovered that it is now also affecting your lungs? What medication are you on? What type of diet or food plan do you follow now?
I have been hospitalized on and off locally for 3 months. Could not remain home for longer than 4 days before I would suffer from pleural effusion. Took a trip to Mayo Jacksonville to finally be diagnosed with RA of the lungs. Waiting to start Rituxan IV. Now currently on prednisone temporarily. Feel like a person again. No where near my old self but able to function somewhat.
Non processed, low sugar and moderate nightshades, dairy, whole wheat. Keep a diary and maybe notice effects of some foods. Get a daily walk in and/or see about PT with someone who can show you isometrics, yoga and other moves to keep you strong . Some like the AIP diet, Meditteranean diet, but I have done better adapting the ingredients of what we usually eat, as well as adopting a few recipes from Terry Wahl and others.
I am striving for a Mediterranean type diet although I am not quite there yet. No red meat, lots if vegetables and fruits, gluten-free bread if I have bread at all. Chicken and some fish for protein, and have started organic protein shakes which I strive for daily. Nuts and seeds for snacks. I have rheumatoid arthritis, Sjögrens and stage 3 CKD. I do not have any lung involvement that I am aware of at this time. I take methotrexate and O6rencia for the RA. I am on Losartan and Amlodipine besylate (Norvasc) for controlling my blood pressure. I have recently had a course of prednisone for increased RA symptoms which helped briefly. My RA is not yet responding well, the Orencia is my third biologic drug (previous drugs were Humira and Enbrel) at an attempt to bring the RA under control, which has not yet happened after almost a year and a half of treatment. I'm not sure if I am responding with the information that was requested. If I can be of further help please let me know.
I tried Mediterranean diet first with some success but switching to whole food plant based, low-fat diet has been a game changer. Especially when I learned low-fat meant, no oils and cut out salad dressings that have oil, olive oil, and processed foods with oils. Within a few days my digestive disorders (gerd type symptoms) calmed down and all but disappeared. Then I cut out alcohol. The hip and leg pain is getting better day by day, slowly but steadily feeling stronger. What this equates to is cutting out all animal products, all oils and fats including nuts, seeds and avocoda (for now, maybe not forever but until gut is healed), sugar, artificial sweeteners, honey, (any kind of sweet other than fruit), processed starches, caffeine, alcohol, etc. Basically eat only whole food plant based, low-fat.
I haven’t done it 100% without fail but close. At some point you begin adding back foods to determine whether you’re sensitive to them or not.
Also, try a natural de-wormer like wormwood. I’ve used Fenbendazole which is an anti-parasite that also kills tumor cells. If you have autoimmune disease, the bad bacteria in the gut is overloaded and parasites feed on bad bacteria so there is a parasite load. Eating leafy green vegetables is a natural way of increasing good bacteria which crowds out bad bacteria and hence parasites. But give your body a boost by eating bitter foods which are natural anti-parasitic.
Hi there. You can read all about it on Xeljanz.com. For me it has been a life changer and I am grateful. I have not been on Humira but I have been on Enbrel and Orencia and a long list of others that works for a short period of time and then stopped. I wish you the best. By the way Xeljanz is 5 mg twice a day in pill form.
Thank you once again! It sounds like one of the category options my Rheumatologist mentioned in the past. I think she wanted to see how I responded to biologics first. I like the sound of a pill form as opposed to the injection form of Orencia, although it is every day rather than once a week. I will read the info on the website again to make sure I didn't miss anything. Thanks so much!
Thank you once again! It sounds like one of the category options my Rheumatologist mentioned in the past. I think she wanted to see how I responded to biologics first. I like the sound of a pill form as opposed to the injection form of Orencia, although it is every day rather than once a week. I will read the info on the website again to make sure I didn't miss anything. Thanks so much!
You are welcome. When I did Orencia I was on infusion form once a month and it worked just fine it just quit working after a while. Xeljanz works very well a pill twice daily. I have had more relief with it than anything. Good luck. Diane.
I have been hospitalized on and off locally for 3 months. Could not remain home for longer than 4 days before I would suffer from pleural effusion. Took a trip to Mayo Jacksonville to finally be diagnosed with RA of the lungs. Waiting to start Rituxan IV. Now currently on prednisone temporarily. Feel like a person again. No where near my old self but able to function somewhat.
@auntcarol You’re the 2nd person to mention RA of the lungs! I had never heard of it. @marg1259 started this discussion about RA of the lungs. Do you have generalized RA?
I’m certainly glad you joined Mayo Connect! We’d love to have you participate in the discussions.
Can you tell us more about what led to your going to Mayo
I tried Mediterranean diet first with some success but switching to whole food plant based, low-fat diet has been a game changer. Especially when I learned low-fat meant, no oils and cut out salad dressings that have oil, olive oil, and processed foods with oils. Within a few days my digestive disorders (gerd type symptoms) calmed down and all but disappeared. Then I cut out alcohol. The hip and leg pain is getting better day by day, slowly but steadily feeling stronger. What this equates to is cutting out all animal products, all oils and fats including nuts, seeds and avocoda (for now, maybe not forever but until gut is healed), sugar, artificial sweeteners, honey, (any kind of sweet other than fruit), processed starches, caffeine, alcohol, etc. Basically eat only whole food plant based, low-fat.
I haven’t done it 100% without fail but close. At some point you begin adding back foods to determine whether you’re sensitive to them or not.
Also, try a natural de-wormer like wormwood. I’ve used Fenbendazole which is an anti-parasite that also kills tumor cells. If you have autoimmune disease, the bad bacteria in the gut is overloaded and parasites feed on bad bacteria so there is a parasite load. Eating leafy green vegetables is a natural way of increasing good bacteria which crowds out bad bacteria and hence parasites. But give your body a boost by eating bitter foods which are natural anti-parasitic.
I tried Mediterranean diet first with some success but switching to whole food plant based, low-fat diet has been a game changer. Especially when I learned low-fat meant, no oils and cut out salad dressings that have oil, olive oil, and processed foods with oils. Within a few days my digestive disorders (gerd type symptoms) calmed down and all but disappeared. Then I cut out alcohol. The hip and leg pain is getting better day by day, slowly but steadily feeling stronger. What this equates to is cutting out all animal products, all oils and fats including nuts, seeds and avocoda (for now, maybe not forever but until gut is healed), sugar, artificial sweeteners, honey, (any kind of sweet other than fruit), processed starches, caffeine, alcohol, etc. Basically eat only whole food plant based, low-fat.
I haven’t done it 100% without fail but close. At some point you begin adding back foods to determine whether you’re sensitive to them or not.
Also, try a natural de-wormer like wormwood. I’ve used Fenbendazole which is an anti-parasite that also kills tumor cells. If you have autoimmune disease, the bad bacteria in the gut is overloaded and parasites feed on bad bacteria so there is a parasite load. Eating leafy green vegetables is a natural way of increasing good bacteria which crowds out bad bacteria and hence parasites. But give your body a boost by eating bitter foods which are natural anti-parasitic.
@auntcarol You’re the 2nd person to mention RA of the lungs! I had never heard of it. @marg1259 started this discussion about RA of the lungs. Do you have generalized RA?
I’m certainly glad you joined Mayo Connect! We’d love to have you participate in the discussions.
Can you tell us more about what led to your going to Mayo
I might be the third, Left lung Pleural effusion in 2020 at first thought to be Mesothelioma, After surgery and chest tube all pathology reports were negative, three days after they pulled the chest tubes, pain, fever, and all my joints swelled up at once. The pain was unbearable it took three weeks before I was diagnosed with RA. Took 10 mg tab of prednisone and was able to start moving my joints. was on a high dose for months and Methotrexate and Humera combined. Weened off the Prednisone in early June of 2022 and boom another pleural effusion in the right lung. Had surgery again on the 10th of July and now back at home back on 40 mg a day of Prednisone. Anybody with lung issues and no joint damage?
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Hi there. You can read all about it on Xeljanz.com. For me it has been a life changer and I am grateful. I have not been on Humira but I have been on Enbrel and Orencia and a long list of others that works for a short period of time and then stopped. I wish you the best. By the way Xeljanz is 5 mg twice a day in pill form.
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3 ReactionsI have been hospitalized on and off locally for 3 months. Could not remain home for longer than 4 days before I would suffer from pleural effusion. Took a trip to Mayo Jacksonville to finally be diagnosed with RA of the lungs. Waiting to start Rituxan IV. Now currently on prednisone temporarily. Feel like a person again. No where near my old self but able to function somewhat.
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Helpful -
Hug
2 ReactionsNon processed, low sugar and moderate nightshades, dairy, whole wheat. Keep a diary and maybe notice effects of some foods. Get a daily walk in and/or see about PT with someone who can show you isometrics, yoga and other moves to keep you strong . Some like the AIP diet, Meditteranean diet, but I have done better adapting the ingredients of what we usually eat, as well as adopting a few recipes from Terry Wahl and others.
I tried Mediterranean diet first with some success but switching to whole food plant based, low-fat diet has been a game changer. Especially when I learned low-fat meant, no oils and cut out salad dressings that have oil, olive oil, and processed foods with oils. Within a few days my digestive disorders (gerd type symptoms) calmed down and all but disappeared. Then I cut out alcohol. The hip and leg pain is getting better day by day, slowly but steadily feeling stronger. What this equates to is cutting out all animal products, all oils and fats including nuts, seeds and avocoda (for now, maybe not forever but until gut is healed), sugar, artificial sweeteners, honey, (any kind of sweet other than fruit), processed starches, caffeine, alcohol, etc. Basically eat only whole food plant based, low-fat.
I haven’t done it 100% without fail but close. At some point you begin adding back foods to determine whether you’re sensitive to them or not.
Also, try a natural de-wormer like wormwood. I’ve used Fenbendazole which is an anti-parasite that also kills tumor cells. If you have autoimmune disease, the bad bacteria in the gut is overloaded and parasites feed on bad bacteria so there is a parasite load. Eating leafy green vegetables is a natural way of increasing good bacteria which crowds out bad bacteria and hence parasites. But give your body a boost by eating bitter foods which are natural anti-parasitic.
-
Like -
Helpful -
Hug
1 ReactionThank you once again! It sounds like one of the category options my Rheumatologist mentioned in the past. I think she wanted to see how I responded to biologics first. I like the sound of a pill form as opposed to the injection form of Orencia, although it is every day rather than once a week. I will read the info on the website again to make sure I didn't miss anything. Thanks so much!
You are welcome. When I did Orencia I was on infusion form once a month and it worked just fine it just quit working after a while. Xeljanz works very well a pill twice daily. I have had more relief with it than anything. Good luck. Diane.
@auntcarol You’re the 2nd person to mention RA of the lungs! I had never heard of it. @marg1259 started this discussion about RA of the lungs. Do you have generalized RA?
I’m certainly glad you joined Mayo Connect! We’d love to have you participate in the discussions.
Can you tell us more about what led to your going to Mayo
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1 ReactionRegression of Diabetic Neuropathy with Total Vegetarian (Vegan) Diet https://www.tandfonline.com/doi/abs/10.3109/13590849409003592
This video explains how plants diet positively effects dietary neuropathy (from diabetes). They give wonderful insights backed by scientific studies.
I might be the third, Left lung Pleural effusion in 2020 at first thought to be Mesothelioma, After surgery and chest tube all pathology reports were negative, three days after they pulled the chest tubes, pain, fever, and all my joints swelled up at once. The pain was unbearable it took three weeks before I was diagnosed with RA. Took 10 mg tab of prednisone and was able to start moving my joints. was on a high dose for months and Methotrexate and Humera combined. Weened off the Prednisone in early June of 2022 and boom another pleural effusion in the right lung. Had surgery again on the 10th of July and now back at home back on 40 mg a day of Prednisone. Anybody with lung issues and no joint damage?
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