Does anyone have any alternatives to steroids? I'm back on them again after being off of them for about 8 years. The side effects are HORRID!!!! I'm at the point where I would welcome the SLE pain over the steroid side effects.
Thanks!
Dobby
Dobby
You can find a lot of information on line about things/foods that cause inflammation. There are drinks you can make to prevent it. There are companies out there that sell anti inflammatory drinks. However, I have to take the steroids to slow down the reaction that my body is having to the over active immune system response. I take 2 to 6 mg of medrol/methlprednisolone a day for a few days and then tapper down the milligrams. That is what works for me. It just depends on how bad my body is feeling on how much and how long I take it. They only side effects I get is bruising (but that is also a symptom that us lupies get anyway) and a little bit of a blood sugar issue!
I have been on prednisone too and I can’t stand taking it! It is harder on my body as a whole than Medrol is! For some reason my body tolerates the medrol much better!
My son is a doctor in Pharmcy and I have asked him to tell me the difference between the too and I was told: Both drugs work the same way. See below the three attachments
389-image.jpg (115 KB)
Trying this again see attachment two below!
388-image.jpg (114 KB)
Third one
387-image.jpg (122 KB)
Sometimes, for some people, there are no alternatives to steroids due to the seriousness of their conditions. Personally, I too have Medrol for bad flares. A lot of people find it easier on their body than Prednisone, even though they are both steroids. That aside... I don't know what measures you've taken, but here is my routine:
I removed from my diet certain things, and added others. I avoid high fructose corn syrup, sodium nitrate (in lunchmeats and bacon - you can get uncured without it), sodium benzoate (known to cause joint pain in injuries and arthritic conditions), and highly processed/preserved food products. I buy fresh foods and prepare meals from them. I purchased a rice cooker and food steamer, and a good quality wok to make that easier, and a one touch drink mixer that handles ice, coffee beans, and fruit/vegetable chunks. I do NOT consume Aspartame or Sucralose under any circumstances, and I avoid MSG when I can as well. I try to avoid as many GMO crops as I can as often as I can. I do not consume tomato products in metal cans - they're acidic and leech the BPA out of the coating. I have tested on and off consuming and not consuming those products and have proven for myself that eating them increases my pain level. I can eat tomatoes that are fresh or in glass. I haven't read anything about canned pineapple, but since it is acidic I switched to fresh only. I use as many BPA free plastics as I can, and especially avoid putting that type in the microwave or using them for hot foods. I eat fast food occasionally and selectively, but for the most part it isn't a part of my life. Most of the cruciferous vegetables I eat have been cooked, as cabbage and it's relatives can suppress thyroid function when fresh. The same applies to soy - and I only buy organic sprouted Tofu because soy is a GMO crop unless listed as organic.
Those are the "don'ts" I adhere to. The "do" list: 1-a-day vitamin carefully chosen for not having bunches of herbs included (chewable for easy absorption), gummy vitamin D3 and gummy Omega 3 supplements (CVS has a good price). I also take SAM-e, ALA, krill oil, and if particularly inflamed I take Boswellin (from Myrrh - anti-inflammatory). I cook with coconut oil, sunflower oil, or grapeseed oil, and sometimes peanut oil. I avoid Teflon and prefer enamelware and ceramic coatings. No aluminum pans. I sautee occasionally but rarely fry. Many of my meals are steamed as mentioned above. A lot of what I eat is rice, beans, vegetables and fruit.. chicken, fish, but I do still eat red meat. Just not every day. I buy high omega 3 cage-free eggs. I drink water, green tea, Tulsi tea, and soda water with a splash of lemon, lime, or cranberry juice. I allow myself the occasional crafted or throwback soda with regular sugar. I also drink almond milk.
I cook with spices like turmeric (anti-inflammatory), garlic, peppers (red, white, & black), galangal (related to ginger, also anti-inflammatory) regularly. I also keep black salt in my cabinet because it's loaded with sulfur (to avoid confusion as often happens, that's not the same as sulfa). I use granulated kelp on my salads to make up for the lack of iodine in my sea salts. I use olive, flax, and safflower oils for salads along with apple cider vinegar - unfiltered. I keep Bragg's aminos because it's the one soy sauce on the market I know doesn't have wheat, alcohol, or sodium benzoate in it.
I do not use sour cream. I replace it with plain yogurt. I prefer fresh oranges over the juice.. which lacks the fiber and bioflavinoids that are in the white part of the peel, and dumps too much sugar into your system unhindered.
What I follow is a whole foods diet. I don't dissect my food. If I make mashed potatoes, the skin stays on. Vegetables get cleaned with a brush, not a peeler. I eat egg yolks, not just egg whites.
It sounds like a lot of work to some people. I've seen the reaction of someone saying they felt "overwhelmed". It's taken me time to develop the routine I am in now, but has been worth every single step and change. Does it work? For me, yeah. In 2006 I was in so much pain that I couldn't stand up for more than a few seconds for about half the year. Today I am back to being able to go camping once in a while. I'm not saying that what I do is a miracle, nor would it be the same for everyone. It definitely will make some difference though if you make the effort. A lot of this is about finding out what you personally react badly too. Some people have to go gluten-free to stop the cycle. Making healthier changes certainly will make you feel better in general and reduce the toxicity issues around the meds we have to take.
Oh my goodness Tala, I have a feeling this may be the direction I am taking too. I have contacted my mom's naturopath to help me reduce some of the medications I am on. I am in constant pain every day, and having a different symptom every day. I, too, just started another round of Prednisone because in this flare I'm having a lot of trouble breathing and that's the only thing that seems to help.
Naturopaths are not allowed to practice where I live, so I'm hoping he can help me via phone and email consults. My mom does not have any autoimmune disorders, but her path has helped her tremendously. I'm just at the point where I'm willing to try anything. Because the side effects of some of these drugs us Lupies have to take I feel like will kill me faster than the disease. Hugs to you for sharing this. :)
Tala said:
Sometimes, for some people, there are no alternatives to steroids due to the seriousness of their conditions. Personally, I too have Medrol for bad flares. A lot of people find it easier on their body than Prednisone, even though they are both steroids. That aside... I don't know what measures you've taken, but here is my routine:
I removed from my diet certain things, and added others. I avoid high fructose corn syrup, sodium nitrate (in lunchmeats and bacon - you can get uncured without it), sodium benzoate (known to cause joint pain in injuries and arthritic conditions), and highly processed/preserved food products. I buy fresh foods and prepare meals from them. I purchased a rice cooker and food steamer, and a good quality wok to make that easier, and a one touch drink mixer that handles ice, coffee beans, and fruit/vegetable chunks. I do NOT consume Aspartame or Sucralose under any circumstances, and I avoid MSG when I can as well. I try to avoid as many GMO crops as I can as often as I can. I do not consume tomato products in metal cans - they're acidic and leech the BPA out of the coating. I have tested on and off consuming and not consuming those products and have proven for myself that eating them increases my pain level. I can eat tomatoes that are fresh or in glass. I haven't read anything about canned pineapple, but since it is acidic I switched to fresh only. I use as many BPA free plastics as I can, and especially avoid putting that type in the microwave or using them for hot foods. I eat fast food occasionally and selectively, but for the most part it isn't a part of my life. Most of the cruciferous vegetables I eat have been cooked, as cabbage and it's relatives can suppress thyroid function when fresh. The same applies to soy - and I only buy organic sprouted Tofu because soy is a GMO crop unless listed as organic.
Those are the "don'ts" I adhere to. The "do" list: 1-a-day vitamin carefully chosen for not having bunches of herbs included (chewable for easy absorption), gummy vitamin D3 and gummy Omega 3 supplements (CVS has a good price). I also take SAM-e, ALA, krill oil, and if particularly inflamed I take Boswellin (from Myrrh - anti-inflammatory). I cook with coconut oil, sunflower oil, or grapeseed oil, and sometimes peanut oil. I avoid Teflon and prefer enamelware and ceramic coatings. No aluminum pans. I sautee occasionally but rarely fry. Many of my meals are steamed as mentioned above. A lot of what I eat is rice, beans, vegetables and fruit.. chicken, fish, but I do still eat red meat. Just not every day. I buy high omega 3 cage-free eggs. I drink water, green tea, Tulsi tea, and soda water with a splash of lemon, lime, or cranberry juice. I allow myself the occasional crafted or throwback soda with regular sugar. I also drink almond milk.
I cook with spices like turmeric (anti-inflammatory), garlic, peppers (red, white, & black), galangal (related to ginger, also anti-inflammatory) regularly. I also keep black salt in my cabinet because it's loaded with sulfur (to avoid confusion as often happens, that's not the same as sulfa). I use granulated kelp on my salads to make up for the lack of iodine in my sea salts. I use olive, flax, and safflower oils for salads along with apple cider vinegar - unfiltered. I keep Bragg's aminos because it's the one soy sauce on the market I know doesn't have wheat, alcohol, or sodium benzoate in it.
I do not use sour cream. I replace it with plain yogurt. I prefer fresh oranges over the juice.. which lacks the fiber and bioflavinoids that are in the white part of the peel, and dumps too much sugar into your system unhindered.
What I follow is a whole foods diet. I don't dissect my food. If I make mashed potatoes, the skin stays on. Vegetables get cleaned with a brush, not a peeler. I eat egg yolks, not just egg whites.
It sounds like a lot of work to some people. I've seen the reaction of someone saying they felt "overwhelmed". It's taken me time to develop the routine I am in now, but has been worth every single step and change. Does it work? For me, yeah. In 2006 I was in so much pain that I couldn't stand up for more than a few seconds for about half the year. Today I am back to being able to go camping once in a while. I'm not saying that what I do is a miracle, nor would it be the same for everyone. It definitely will make some difference though if you make the effort. A lot of this is about finding out what you personally react badly too. Some people have to go gluten-free to stop the cycle. Making healthier changes certainly will make you feel better in general and reduce the toxicity issues around the meds we have to take.
Dobby,
I was wondering the same exact thing the other day. I went to the walk in clinic earlier this week to get what I call my almost monthly cocktail of Prednisone and anti-biotics. My flares cause me to have a lot of trouble breathing and they do help with that, but the other side effects are HORRIBLE. I just told a friend of mine the other day that if they're supposed to help with inflammation, why do my joints hurt worse when I'm on them? Plus, the insomnia spikes so I have to take something to sleep. It's such a vicious cycle.
Hugs to you.
Jenn
I too eat the anti-inflammatory way… But I’m so sensitive to the food triggers that I actually cannot eat dairy at all. Or corn, soy, any nightshade veggies (tomato, peppers, eggplant, potato.) And I recently have been avoiding gluten too. I was vegetarian (still fish and eggs, but minimally) for ten years in my teens/early 20s, but totally over-relied on dairy and soy products before I really knew how to cook… I’m eating some of the leaner meats now and still only occasionally (0-5 servings per week), and on the occasions I eat beef (once a month maybe), I’m picky about it being grass-fed and organic if possible. Organic produce too, but with priority on local/small farms rather than massive “organic-industrial” farms that still use monoculture and fertilizers and pesticides that happen to be naturally derived but still have potential effects and aren’t great environmentally… This has been my food philosophy since reasing “The Omnivore’s Dilemma” 5 years ago… It follows how American food is produced with wonderfully thoughtful narration of the first-hand experiences of the author investigating creatively… A perpective-changing yet enjoyable read! And was full of challenging vocabulary even for a college senior at the time! Since then I really avoided processed products, even when made with all organic ingredients, in favor of whole foods. When I became so intolerant to the foods I mentioned, I couldn’t even buy most pre-made products, even minimally-processed, so I do a lot of cooking, needless to say! I love it though, and the biggest benefit of not working while I’ve been so sick this year has been the time and rest to save energy to keep up with proper nutrition. It’s tough though, and on worse days when there aren’t leftovers, I may be stuck eating the only canned soup on the market I can eat–split pea (in a non-potato, non-bacon formulation such as Amy’s Organics or Trader Joes’ imitation of it.)
However… I had started ramping up to eating this way 4 years before my diagnosis; indeed, noticed food sensitivity before really paying attention to systemic symptoms… I’m one of those gut-brain-vascular types with my SLE, no kidneys or abdominal organs (though the brain is of course an internal organ, so I won’t say no essential organ involvement!) So, after starting with Plaquenil last summer, it wasn’t doing much and I was getting worse by December, when I started Medrol. Medrol has fewer side effects and is more “potent”, meaning stronger anti-inflammatory and immunosuppressive effects at a lower dosage (4mg Medrol=5mg prednisone, thus the 16mg/day dose I was on Dec-March was like a 20mg daily prednisone dose.) It also doesn’t need a liver-conversion step to be active, so it’s easier on the liver too! I don’t know why ANY doc still prescribes regular prednisone… Medrol is available generic and is quite cheap, too! Old habits? Definitely ask for Medrol! And be mindful your dose should go down according to the 4:5 ratio! I’m also now on Alternate Day Dosing that eases a lot if the side-effects while having most of the same immunosuppression and anti-inflammation effects. Ask your doc about that too, but be aware it’s not usually enough to quell an active flare and more of something you can switch to for ongoing therapy like I’ve been on till starting Rituxan. I just got the Rituxan IV infusions last month, am feeling much better and was able to continue the taper I had started shortly before the treatment… But I’m stuck at a plateau with 3/4 of the original Medrol dose I was taking before and now teetering on the line of flares and having symptoms present but mostly tolerable. Mostly. But I DON’T want to go back up on the steroids and have to start over, so I’m waiting longer for the Rituxan to keep helping and aggressively managing lifestyle and stress, plus remembering how much better I’m doing than a year ago before I was diagnosed! With my current regimen (24mg Medrol every-other day, equiv to a daily prednisone dose of 15 mg per day, a pretty low dose) my steroid side-effects have disappeared (I had some excess hair growth and the beginnings of squishier cheeks, but nothing dramatic, since medrol really doesn’t cause as many as the prednisone, especially in terms of weight gain! My moods/mental state also got better instead of worse because it was treating my NPSLE activity!)
So, I’m using them in the context of the bigger picture of both natural management and major pharma management. When your disease is highly active and steroid-sparing drugs like methotrexate, mycophenolate and azothioprine aren’t doing enough, cytoxan and Rituxan are the main disease-reversing options, but they take time and you need steroids to act immediately. Checking whether the steroids work is indeed a reason to move onto the long-acting drugs with good expectation of success! Using steroids is sorta a fact of life for active lupus, but remission-inducing drugs like the Rituxan I’m taking, especially early on in the disease course (I’m recently diagnosed) are shown to reduce relapses and the need for steroids. I also believe in lifestyle being essential to prevent recurrence: nutrition, activity, stress-management, taking it easy enough and refusing to over-stretch yourself. However, when the disease flares up, it has to get stopped and the lifestyle actions will support but probably not replace medical intervention. Keep them up so it doesn’t happen to you (whether that may be at all, as often, or as severely…) in the future! I know you already do the work balance with your home job 
Once you get your flare resolved on the steroids (ask for Medrol right away! It can be substituted at equivalent dose!), ask about switching to alternating days (double the dose every other day) and then start a slow, careful taper… While you take over management with lifestyle. In the mean time, read the Ominvore’s Dillemma while you’re in bed recovering
Brynn
I would also love to find an alternative to prednisone. I've been on it for almost 4 years straight, ranging anywhere from 60 mg to 15 mg. Any time I go below 20 mg I start having symptoms. I tried Benlysta - that didn't work. I'm on an anti-inflammatory diet (which is whole foods, plant-based and excludes sugar and processed oils). I feel like I'm doing everything I can and yet I'm still on a plethora of drugs. My bones are starting to thin out, my skin is so thin that the slightest bump causes bruising and bleeding. Everything I'm doing keeps the lupus at a dull roar but I'm never "well". I know all of you understand!
I have tried stopping multiple times during my 15years of being on prednisone. I’ve had to take IV bolus presnisone at times but quitting never helps. A good Epsom salt bath eases it for a little bit but not long however I’m grateful for the life I have.
There is some great information here. I guess life for us is a balance, medication, rest, diet, etc. I am on Cellcept. I began taking this last January when I developed a pretty impressive peripheral neuropathy. I was very concerned about long term steroid use. It has done wonders for me. My symptoms of joint pain and fatigue have decreased. The neuropathy persists but my mind is clearer, my speech is clearer and I feel like a new woman. I know that there are side effects from this med too, and to read them makes me nervous. But like I said life for us is a balance thing.
I got so sick of what prednisone does to me, I went to the Rheumatologist and begged him not to put me on it. He put me on azathioprine and gabapatin. It was so much better. My lupus didn’t act up and I didn’t notice any side effects.
Come to find out, I am mot suppose to take prednisone because of my kidney disease. There are other medicines and foods you should not eat or take ehile living with lupus.
http://www.hopkinslupus.org/lupus-info/lifestyle-additional-information/avoid/
I'm on azathioprine, methotrexate and plaquenil in addition to the prednisone. I'm going to talk to my rheumy about Cellcept or Rituximab. Maybe one of those will help me get off the prednisone. I'll also ask about medrol. Thanks to everyone for good information!
Thanks for all the great info everyone!
I was reading about cellcept and thought it would be great for me. Then it says not to take if you have kidney disease. That was discouraging. I have tried medrol for allergic reactions but never for lupus. I want good treatment period. I wish you the best in your future treatment regimen.
The azathioprine put me in the hospital years ago with drug induced hepatitis. That was not fun. I will definitely ask to be switched to Medrol while I try to wean off it and give the methotrexate time to start working. I've never noticed many food issues except dairy. I'll definitely start reading up on some of these other sources you have all mentioned. I appreciate all the insight.
Dobby
Sleep is the best remedy I know. The more rest you get, the sooner you're off prednisone. But the person I'd ask about alternatives is my rheumatologist. There are various strong NSAIDs; there is plaquenil; there is methotrexate. I don't know what's right for you. Maybe there aren't any alternatives right at this moment - and I write this knowing I never want to take prednisone again. However, I did, for about a week, about a year ago, when I had terrible bursitis in one hip. Get lots of sleep is my best advice - and ask your rheumatologist if there is anything else you could take. I'm sorry about your situation. Good luck! Julia
Thanks Julia.
I've been on placquenil & Naprosyn for almost 25 years. For the last 8 years, that was enough to keep me quite stable. I have had to alternate a different NSAID for the Naprosyn when my body got too used to it. I was just curious what some other rheumatologists were prescribing since all the rheumys I've ever had all seem to fall back on the standard old prednisone. My current rheumy tends to be more conservative. I've been very very fortunate to have had such a long reprieve from any major flares, but like my boyfriend told me when I turned 40 last year...I was going to start falling apart now. He's 6 years older than me and was speaking from experience. LOL. Luckily he has been very supportive and keeps me laughing. Yesterday he said don't think I'm getting a Rascal Scooter before he does. Thankfully neither one of us are at that stage yet. :o)
You are correct that sleep does wonders, unfortunately the prednisone tends to hinder my ability to sleep. I have been getting in short naps whenever I can though. Have my Diflucan for the severe oral thrush the prednisone has given me, so that is improving...I've never had acne like this in my entire life though which also appears to be a prednisone side effect. My face, neck & chest are just covered with acne. I'm scrubbing my skin 3X a day and it just isn't improving. So my vanity is taking a big blow because now I look as bad as I feel :o) I refuse to be a victim of prednisone side effects if I can find an alternative. The rheumy and I will have a good discussion next week when I come in fully armed with my research. Thanks again!
Sending you all well wishes and pain free days!
Thanks Julia.
I've been on placquenil & Naprosyn for almost 25 years. For the last 8 years, that was enough to keep me quite stable. I have had to alternate a different NSAID for the Naprosyn when my body got too used to it. I was just curious what some other rheumatologists were prescribing since all the rheumys I've ever had all seem to fall back on the standard old prednisone. My current rheumy tends to be more conservative. I've been very very fortunate to have had such a long reprieve from any major flares, but like my boyfriend told me when I turned 40 last year...I was going to start falling apart now. He's 6 years older than me and was speaking from experience. LOL. Luckily he has been very supportive and keeps me laughing. Yesterday he said don't think I'm getting a Rascal Scooter before he does. Thankfully neither one of us are at that stage yet. :o)
You are correct that sleep does wonders, unfortunately the prednisone tends to hinder my ability to sleep. I have been getting in short naps whenever I can though. Have my Diflucan for the severe oral thrush the prednisone has given me, so that is improving...I've never had acne like this in my entire life though which also appears to be a prednisone side effect. My face, neck & chest are just covered with acne. I'm scrubbing my skin 3X a day and it just isn't improving. So my vanity is taking a big blow because now I look as bad as I feel :o) I refuse to be a victim of prednisone side effects if I can find an alternative. The rheumy and I will have a good discussion next week when I come in fully armed with my research. Thanks again!
Sending you all well wishes and pain free days!
Ok so I have been on prednisone and it was torture. I am currently on it because I can’t get my asthma under control. I shouldn’t be on it due to kidney disease but it seems GPs don’t have all the knowledge on what to and not to give people with diseases, at least mine don’t. Azathioprine worked great along with Gabapatin. I didn’t notice any side effects like prednisone causes. Skin issues, check with a all natural health store for skin vitamins and suppliments. Make sure to ask a sales rep or research what is safe with the medicines you take and all the health issues you suffer from. If it is coming from within then cleansers aren’t likely to do the trick. Also drink a lot of water. I know soft drinks can cause skin issues as well but I try to stay away from them because they are hard on the kidneys and I’m trying to preserve mine. I did ask about what I can do to get better sleep and the doctor told me to do like you do a baby and wear yourself out. Pfft ugh.I do that crawling out of bed. I’m tired a majority of the darn day. Melatonin isn’t good at all for Lupus so stay away from that. The only thing that works for me at the moment is Benadryl and Tylenol together. I hope they can find a regimen that will better help you.