One Chick wrote in:
I am looking for some suggestions. I am at a total loss of what to do and am suffering so very badly. I was diagnosed in 2006 with RA, Fibro and Raynaud’s phenomena when I was 30 years old. I thought this year was going to be a good year because I had been in remission, then fall hit and on came the flares:( I am now on Methotrexate, Plaquenil and Humira shots and nothing seems to be giving me any relief. The flares affect my feet and ankles the worst. I have so much swelling all I can wear are house shoes. Every time they give me a round of Prednisone it pushes my blood sugar and blood pressure up so high that they no longer want to do steroid treatment. I try cool Epsom salt wraps along with elevation, but still I get no relief. Please, if there is anyone with home remedy advice it would be much appreciated as I am now at a loss.
Can you help her out with some advice or tips? (((pain-free internet hugs))) Sending up good thoughts.
What our members have said so far:
Leslie – so sorry. i too suffer like you.. i can only wear flip flops… i to am on plaquenil arava prednisone methotrexate orencia to name a few… my Dr now has me on lisiniprol for my blood pressure .. the high blood pressure could also b from the swelling.. talk to your rheumy about it…good luck!
Kim – I am looking into the paleo diet and everything I am reading seems to make sense, I too am dealing with on going flares and can not get relief, ditch the methotrexate, awful stuff didn’t work for me but if its not working after 12 weeks then its not going to, it works for some people though. Prednisone helps keep the pain and inflammation to a tolerable point most days but I have had to increase it and have not been able to get off of it, I take Humira weekly, sulfasalazine and meloxicam 2 x a day, 15 mg of prednisone a day and neurontin at night for sleep and lorazepam 2 x a day just to stay relaxed. Last year I was only on 2 meds and now a lot more. Good luck, I am really going to try the paleo diet, it will be tough but hopefully it will work!
April – So sorry to hear you are in so much pain I too struggle the same with ra and Psa arthritis and fibro and stuck in a flare at the Moment I take amitriplaine to help with rest and sleep but nothing much helps sending u a pain free Internet hug x
Gretchen – Trying to go paleo is a good idea in that it doesn’t hurt anything (no interactions with meds) and might help. Tumeric and magnesium might help, you just take supplements, and I have had some luck with ginger tea (fresh ginger root grated into hot water seems to help me relax and takes away a bit of the constant ache).
Giggles over Tears with RA – Bless her heart! I hope someone has more help than me. I take colon cleanse, when i’m in a bad flare – helps keep my blood sugar and puffy bloated feeling away while i’m already miserable. But it sure don’t help with pain, just some of the uncomfortable.
Michelle – I’m on prednisolone, sulfazalazine, and fentanyl patches. I was on mtx, but have got two small children, and because they’re little germ magnets, I was constantly getting colds, then they would turn into a chest infection, which in turn, would exacerbate my asthma, so I came off them. Have good and bad days, lots and lots of pain. Found ways round things though, for instance, got slide it for text, that way, you don’t have to type words in! Oh and a lovely caring husband, and he’s a research scientist, so luckily he has a great understanding of this disease!
Amy – god, i can relate. I really don’t know what you can try. Have you tried topical steroid cream on your feet? I had some luck with that — fluticasone cream — but overall nothing worked until the Actemra kicked in, after I had 500 mg iv of pred. I was in a boot for ages and could only wear a man’s slipper on my right foot. This led to deformities and is a constant source of pain and discomfort, even after the swelling went down. I can’t imagine both feet. Ice? Rest? Are you on a biologic?
Jennifer – Go gluten free!!!
Jennifer – I too have feet and ankle flares! I take MTX, Prednisone, Folic Acid, and Ultram. I am reluctant to advance to biologics at this point. When I am flaring, I use a topical cream or gel….Aspercreme, Penetrans Plus, (available via Internet), and I wear ankle supports that can be purchased at a local pharmacy or online via Amazon. I wear shoes that are comfortable, even if they are considered ugly, like Crocs and Birkenstocks, and walk with the use of a cane. At times, when the pain is really severe, I use 2 canes…one for each hand. The canes can take up to 20% weight bearing each, this helps your ankles tremendously! Don’t forget warm, moist heat application, but be careful not to burn or damage your skin! Wishing you the best!
Jessica – I am not taking any meds for my RA even with my bad flares I just can’t take the side effects or the chance of the shingles flaring again because of these meds..not worth it!! I will tell you though that I have taken systemic enzymes called Neprinol that have saved me several times from horrible flares..my dad introduced me to them when I thought I was going to stay very ill constantly. i noticed a difference almost immediately..though everyone is different, i think you may want to read up on them..they have kept me going..http://www.arthurandrew.com/human-formulas/neprinol/ I think it’s worth a try.. Here is one of the case studies for Neprinol!!http://www.fibromedica.com/rheumatoid-case-study
Anne – I think I would ask your Rheumy to switch up biologics at this point. There are so many biologics out there now… if one is not giving you remission, another should… have you tried Enbrel or any of the others yet?
Lee – I am also in your shoes (or flip flops). I have found that when I cut down or out carbs in my diet, the swelling is greatly reduced. You might give that a shot.
Kathleen – I would suggest acupuncture. If you can afford it almost insurance will not cover it. Also, I was on Humira for 5 years and then one day it just stopped working. I am now on Cimzia once a month and mild anti inflammatory daily and feeling comfortable.
Dawn – I pray for you! It also affects my feet and surrounding area the worst! I ice mine every night and also take Epsom salt baths. It helps some. I’m also on humira and doesn’t seem to work well for me.
Athena – Absolutely ask about changing biological drug… that’s where i finally got most of my relief from. Taking Rituxan every 6 months (2 doses, 2 weeks apart) along with other meds too (plaquinel, Tramadol, low dose prednisone, horizant for the restless leg syndrome, vit C, D3, coQ10, fish oil etc….). Have they ever tried a diuretic on you? Xoxoxoxox Oh…and about the diet…definitely try it. I stay away from high amounts of sugar, as they tend to cause more flare ups with me. GLUTEN FREE also worked, except it got very expensive xox
Vanessa – Agreed about the gluten free!
Susan – Cimzia is the only thing that worked for me and going gluten and sugar free. I was diagnosed with type 2 diabetes after being on MTX and pred for 2 years and trying every other injection and tablet. Cimzia was the only injection to bring my inflammation and pain down. And stopping the pred and losing weight helped my liver problems and the diabetes. Best of luck Hun, it is so hard. I am on cortisone shots for bursitis in my shoulders and pain killers but the swelling has gone down so much and the feet pain too from losing weight mainly from no bread products, hard at first but so worth it.
Lori – Many insurances are now covering acupuncture……my Cigna covers 26 visits per year and what a difference it has made for me. I was having fluid shifts of 7-10 lbs over a 24 hr time frame which wouldn’t respond to diuretics. I live in my Birkenstocks (because anything else doesn’t provide the hard sole I need to even be able to bear walking) and I stretched them out so badly I had to replace them once the fluid issues stopped. I also am taking licorice root at the advice of my acupuncturist. It has many of the same qualities as prednisone without causing all the blood sugar issues. If blood pressure is an issue, you need to get a specific type of licorice root which has eliminated the component which raises blood pressure. Good luck to you and stop don’t searching for answers!! Xoxoxo
Debbie – As someone who has had RA and Fibro for 20 years, I keep a pain diary and record weather, pain scale, and everything I have eaten. There is a real effect to my pain with what I have eaten. Salmon gives me days of lower pain, and also fresh veggies. I have found that processed boxed foods like, hamburger helper, instant potatoes, prepared frozen foods all increase my inflammation. I have been not taking any medications, ( This is not for everyone) for 10 years and have been able to control my comfort with better food choices, rest, education of the mind and mood, and best of all, accepting this is a condition I have, not who I am.
Kathy – Try another drug enbrel, orencia …
Augusta – I had a lot of flare ups and started eating gluten free foods and it has helped a lot. Athena is correct it is expensive but I think with it. Also buy organic fresh ground meats because they don’t have the hormones that the other ones have. Those hormones make our inflammation worse. Good luck and hope you feel better soon.
Erika – Juicing! Adding ginger & garlic to your diet. They are natural anti-inflammatories. Fresh pineapple is as well. Try to stay away from yeast & sugar as much as possible.
Nilsa – first how long have you been on Humira, the drugs take a while to work with everyone is different. If you have been taking them a about 6 months or more try some other treatment talk to you doctor, there are other treatments out there. Also you might want to try natural herbs and spice that help with inflammation, like ginger, turmeric cinnamon, garlic etc. you can take it in pill form or cook with it. It has helped my daughter a lot. Some people don’t believe that they wont work but remember our grandparents never got so sick like people now a days and it was because they believed more in natural remedies than meds. Times change but they can still help. You might want to also check what you are eating some foods cause inflammation. It works different for everyone so its a try basis until you find what works for you. Good Luck.
Lauren – Take fish oil and msm supplements. Won’t work overnight, but eventually you will get relief. Also, look into Rituxan treatment instead of humira. Humira made me worse.
Debi – Try taking omega 3, Evening Primrose Oil,Cod Liver Oil gel caps and Flaxseed oil. They are all natural anti-inflammatories. My feet were really bad too and ankles bad too. I take Mtx and Humira. I take all the supplements above. I try to eat healthier and cut out the sugar. Also, I take Neurontin. Ingot off the prednisone too but take a 10 day dose pack with a flare. I am doing better now but I know what you are going through. I wear Crocs and they are a comfortable and allow me to walk without as much pain. Sending you prayers.
Angela – Try drastically changing your diet! Acupuncture can also give you some relief. Stay away from any processed foods. Root veges and salmon worked for me and then you slowly introduce other foods. This is not easy. Also juicing is a way to jump start. Good luck.
Trudie – Don’t give up on biologics!….I was diagnosed in 2005 with moderate to severe RA…I have been on quite a few of them…Humira, Enbrel etc. But, my relief and remission came from Rituxan …I get IV infusions every 5-6 months…2 of them 2 weeks apart. Rituxan has been a lifesaver for me!…I too had most of my problems in my feet…to the point I could not walk at all!…Now, I hold down a full- time job and do most of the things I want too! Of course I still have issues with Energy levels and tiredness!…In addition to the Rituxan, I take folic Acid, daily Prednisone 5 mg, daily MTX 6 tablets weekly, Mobic 15 mg daily, Pamelor daily, and Tramadol at night!….I will tell you Rituxan infusions are VERY expensive and I had to try several biologics before my insurance would approve it!…..It’s thousands of dollars per infusion!….Please don’t give up…..keep trying ….you will find one that works for you! Praying that you will find the right combination of drugs that will give you relief!
Jenelle – Acupuncture and Detox saved me. Nitrates give me terrible flares (wrists and feet/heels) I eat organic nitrate/trite free meat as much as possible. When first diagnosed a Podiatrist helped me with shoe inserts that took the edge off pain when in a good athletic shoe. Don’t underestimate REST and Hydration too. Best of luck to you, prayers for you to find what works!
Christina – Jenelle’s right…get some good orthotics made to help with arch support & good athletic shoes. I’ve had JRA since I was 3 & have had to wear arch supports ever since. My ankles & feet suffer if I go more than a day without them. Get a massage or acupuncture anytime you can afford it too. A lot of people seem to benefit from fresh veggies & hormone free meats, but don’t disregard meds all together. Give any new med at least 6 months to kick in. I know too many people who stop meds altogether & go all natural & they’ve all suffered in the end. Meds help with pain, but can also stop the progression of these diseases, something diet alone can not do. Hang in there & keep an open dialogue with your doctors…and find new ones if you’re not happy with the care you’re getting.
Beatrice – Gluten free helps.
Karis – I have RA and FM and have serious problems with swelling in my lower legs and feet. In addition to Mtx, Plaquinel and Cimzia for the RA I am taking a prescription water pill and potassium supplement to go with it. I also wear compression socks- not just strong hose, like ace bandage material, I put my feet way up every chance I get- I even manage to sleep a few hours every night with my feet up. I drink lots of water, and try not to make it worse. The swelling is part of my flares and I’m at about 6 weeks now- its painful! The only shoes I can wear are flip flops, house slippers and my Birkenstocks. Good luck, I know its tough.
Michelle – Thank you so much for all the great advice !
Kelly – Definitely adjust your diet and rive all foods with a moderate to high inflammatory index.
Kathy – Check into a Paleo diet…and ACV tablets…they are cheap and they work for RA and Gout…
Kendra – Avoid night shade vegetables. Also I wear Croc sandals (same company as the ugly dutch shoes, but they make beautiful, super comfy, super arthritis friendly sandals too) http://www.facebook.com/#!/photo.php?fbid=10151383192570269&set=a.10150129626310269.333528.655450268&type=1&theater my shoes :o) Croc sandals rock!
Jana – Earth Spirit makes a sandal with long velcro straps that fit around swollen ankles also. Cheap and available at Wall Mart.
Suji – Hi, I hope this helps, but I’ve seen some help w/ strict diet and using foods to heal – i eat coconut oil a tbsp 2 x a day, I used olive leave extract, I drink water w/ tspn of apple cider vinegar, I make fruit/veggie smoothies w/ ginger and garlic – and as mentioned by some others before, I used digestive enzymes, drink water w/ turmeric and ginger, I used castor oil packs at night to remove toxins and I do dry skin brushing. I have to stay off of most foods w/ preservatives, colors, flavorings, etc. and eat fresh home-cooked foods most all the time – I go off of it when eating out, but take extra digestive enzymes. I also use probiotics and drink warm water to aid w/ digestion. I hope some of these things can help you. Good luck….
Carol – Along with the elevation, try wrapping your feet and ankles with an ace bandage or use a neoprene or elastic ankle support. It may help east out some of the swelling and keep the joints warm. If you use a wrap, start near the toes and wrap upward, not too tight as to make your toes turn blue. Hang in there!
Kami – I have had ra for 21 going on 22 years. Talk to your rheumy! It may be that your meds arent working. Keep you stress levels low as this causes flares. Try startimg a multi vitamin and calcium. Stay away from lots of caffine and sugar. Dont go drastic on the diets and detoxes. Just stay aware of how things you eat affect you personally. hang tough, stay positive and good luck
Billie – I have a knee that just never goes down. I put cooling gel on it when it’s really bad. You will survive, adjust, and live a great life.
Pamela – I have used voltaren gel~I can’t take Voltaren in pill form but the gel has been helpful. As far as adjusting,how sympathetic.I found that in adjusting was a process of loss and acceptance. You will survive,yes,but be good to yourself,be patient.
Pamela – May I ask,is the Humira a form of Gold Salts. My experience included Gold Salt Injections until i had a severe allergic reaction. I then used oral anti steroidals and fortunate for me had a long period of remission as far as swelling went, and a lot of the stuff that goes along with that.
Pamela – I don’t know if this will help but i too had a bout with RA in my early thirties~went into remission and feel fortunate not to have had HUGE issues until my fifties. It is always there though isn’t it?I feel extremely grateful,and humble when I look back at it when I see a post from a young person going through that same situation. I was working for a horse trainer,divorced with two small boys when i began my worst nightmare ever!!!Don’t give up,but be patient~and I would love to say I lived my life well~I didn’t “get over it”,I didn’t handle things well,but I did get through it and we are all different in how we handle things.Sorry I am posting so much as now I am 60 and really having issues all intertwined with it all.
Carol – Pamela, no Humira is not related to gold salts. I took those gold injections too, a long time ago, and also tried the oral form. Neither did much of anything.
Janel – Going through similar stuff here but doc is changing up my treatment again. Just remember, talk to your doc, he can’t help you if you don’t keep him up to speed on what you are going through.
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