Medical Forum / Diseases and Disorders / Arthritis / April 2006
update on doc visit
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Becky - 15 Apr 2006 17:27 GMT Well I saw my doc yesterday, said that if I wasn't complaining about my feet hurting looking at me I look great, no swollen joints great range of motion, I have always had that. Is having me get another MRI because of the numbness in my lower calf muscles and feet, just to make sure of the MS threat since being on the enbrel, but the first one was fine. Then said maybe a round of prednisone, I have never had it before. My x-rays of my feet showed more erosions so that means it is not under control. I feel so tried int he morning, my feet hurt so bad and it hurts some in my shoulders and hands also. He then said maybe he should send me for a second opinion. I am very frustrated, I thought they said I had RA, just because my blood work has never had a high sed rate or c-reactive protein, it had a very high anti=ccp and I Have erosions in my feet. I take mtx 17.5 and he said that was high enough on enbrel, it might been changing meds he suggested remicade or kineret but would have to wait for the mri results. Does anyone take the 20mg mtx with the 50 enbrel? I am used to the shot, don't really want to take an IV but need some answers and wonder why my feet are going numb and hips hurt so bad, but when I laid on the table and could move my legs up to my neck he said great. The afternoon is not a good time for me to have an appt I am always a little better by then great by bedtime and then go through the same thing each morning. Well would like to know if anyone out there takes the 20 with the enbrel Thank Becky
RoseB - 15 Apr 2006 19:55 GMT >Well would like to know if anyone out there takes the 20 with the enbrel >Thank >Becky I still take 25 mgs of mtx with enbrel. I also have numbness in my feet in the area of the little toes, and now with the lump I have inder my right foot, that foot is numb on the bottom as well. Neither ofmy docs seem too concerned about the numbness, so I am not either. I have bigger fish to fry, metaphorically speaking.
Another thing you can check into is diabetes. Foot involvement can occur in diabetes, with numbness (periferal neuropathy).
Rose @}>->-- Being educated means that rather than fearing the unknown, one seeks to understand it. RB
Please remove "Ima" to reply.
Ann - 15 Apr 2006 22:18 GMT Well I don't take embrel or mtx, am not diabetic, and I have peripheral neuropathy which was diagnosed by a neurologist about a year ago while running tests to rule out M.S. Symptoms are numbness, burning, tingling and shooting electrical type jabs in feet. I stagger once in a while because I can't feel where my feet are on the ground. Not a whole lot to be done for it I'm afraid but then again it's not the worse thing.
Ann
Harvey R. Stone - 15 Apr 2006 22:42 GMT > Well I don't take embrel or mtx, am not diabetic, and I have peripheral > neuropathy which was diagnosed by a neurologist about a year ago while [quoted text clipped - 4 lines] > > Ann Hi Ann, I have some of the same symptoms that you do and I just blame it on being over weight and type 2 diabetes. Back when I had lower back problems from lifting the wrong way, my leg would go away and I could hardly go down stairs. :-) Got some chuckles with my staggering around.... I am sure that some thought I had a few too many beers but then,,, I worked in a brewery. LOL Harv
vickie b. - 15 Apr 2006 23:38 GMT (((((ann)))))
I had RA diagnosed by rheumy for two years before it showed up in my blood work!
Vickie B.
Ann - 16 Apr 2006 02:56 GMT Hi Harv: Did your brewery give free beer at lunchtime? It was a tradition in this area with first Hanley Beer and then Narragansett but I wondered if it had stopped due to insurance issues. After a good many years they have torn down the old brewery buildings and built a shopping center in part of it and are continuing to build in other parts (very big complex).
Ann
Harvey R. Stone - 16 Apr 2006 04:26 GMT > Hi Harv: Did your brewery give free beer at lunchtime? It was a > tradition in this area with first Hanley Beer and then Narragansett but [quoted text clipped - 4 lines] > > Ann Hi Ann, Actually I worked for Schlitz and then for Bud when Schlitz just about went under with green beer pouring out of our Memphis plant. That was a swing brewery that shipped into many different areas due to the fact that it produced wayyy more beer than the area consumed. We had 10 breweries back then and produced and sold just as much as Bud did. You would not think that the shipments for a short period of time from only one of 10 plants would put an operation as big as that down but it did. Once a person takes a cold swig of bad beer,,,, they never forget it and buy something else. So it goes. Harv
Ps a person could have a beer anytime they wanted on in both breweries and it was stopped from lawsuits about a truck drivers getting in wrecks after having a few.
Jo Firey - 16 Apr 2006 21:27 GMT >> Hi Harv: Did your brewery give free beer at lunchtime? It was a >> tradition in this area with first Hanley Beer and then Narragansett but [quoted text clipped - 19 lines] > and it was stopped from lawsuits about a truck drivers getting in wrecks > after having a few. Charlie worked as a driver for a Coors plant for twenty years. By the time he retired they were not only doing random drug tests, they were using breathalyzers on the drivers when the came in to work in the morning. Not everyone has sobered up from the night before when they start work so early.
Jo
Newsgroup Spambuster - 17 Apr 2006 00:33 GMT Becky,
Didn't your doctor lower your mtx dose because you told him it was causing you problems with your interstitial cystitis???
Also, if I recall correctly, you started the enrel, quit using your orthotics, lowered the mtx, etc all around the same time, which would make it virtually impossible to tell whether or not your hip and foot and back issues are from stopping and starting new orthotics, the enbrel not working, or the arthritis flaring, or quite possibly a combination of them all. That is why many of us try not to start and stop multiple things at one time because then you never know for sure what is helping or what is causing the problems.
As for the bursitis in the hips, bursitis can be an extremely stubborn thing to get rid of even with cortisone injections and physical therapy and regular iceing and heating pads.
The foot erosions that you mention will make your feet hurt most of the time as the damage is already there and nothing you take or use is going to change that a whole lot. Unfortunately, that is the ugly nature of these diseases. Damage done can not be undone and even at your best, the damaged areas are going to always remind you of the disease process you have. What do you take for pain???
You might want to talk to your RD about switching your mtx to the injectable form as most of us have found that that works better and cause fewer side effects. Always, always, always, though, keep yourself well hydrated, especially when taking the mtx or you will find you have more trouble with it than normal!!! This little thing is very important and many overlook the fact that being very well hydrated can effect how you do with the mtx.
Like you, many of us here have wide feet and/or use orthotics, so need wide shoes. Read the current thread that is going on right now about shoes for wide feet and such. Very helpful, but also very helpful to go to a very knowledgeable shoe store that can fit you properly!!!
Don't be afraid to try some of the newer meds out there if your RD recommends them. Some of the meds work great for others and some of the others are better for some. It is all a matter of trial and error for all of us, and though it can be frustrating going through the trial and error part of it, once you find the med that works for you, you will be ever so thankful! . . . Donna G
Becky - 18 Apr 2006 01:58 GMT Hi Donna, When I first stated the MTX a year ago, they lowered it at first, but I have been on the 17.5 for 3 months or more and before that 15mg the enbrel I have been on for 6 months going on 7 and that whole time I was on either 15 or 17.5 of the mtx, nothing else has changed. I did stop wearing the orthoidcs in June on the advice of a bad foot doctor, she told me I didn't need them. and started wearing them off and on again in mid November and had been using them for exercise but then wearing dankso to work without the ortodics. I just came back from the new foot doc today. He cut down the new ortodics and I am giving them a week trial as he suggested they are very very hard and they seem to make my feet get really hot when I try to fast walk, which is only for 10 minutes and they also hurt where the arch hits, but he said that is just getting use to them, they are a 3/4 insert and you leave the shoes insert inside. I may have to go to a full length that has a padding over it but not sure. I have a pair of ascis 2100 tennis shoes that they fit it and that is all the other shoes I have won't work with them they are to narrow in the heel. I am having a brain MRI to rule out any difference in the last brain MRI, they said it was basically normal, meaning they found 1 lesion, but didn't think it was anything, now they want to see another one since I have been on the enbrle and having some numbness and muscle pain. I will try knew meds but don't want to right now as we are getting ready to leave for CA in 3 weeks for 2 weeks there and I don't want to worry about new reactions, so will just lay around a palm tree for a while, not to hard to do for me. I can use it after dealing with this bursitis for over a year now and the feet issues. Well thank you for your thoughts and words. Becky
> Becky, > [quoted text clipped - 44 lines] > . > Donna G GARY Z - 17 Apr 2006 14:11 GMT Hi Harv, I have an uncle that worked for Schlitz in Milwaukee. Seems to me they had a strike and the company shut down the plant and put everybody out of work there. That was many, many years ago. He still to this day gets two free cases of beer a week! Good guy to visit when you were thirsty!! :-) GaryZ
> Hi Ann, Actually I worked for Schlitz and then for Bud when Schlitz just > about went under with green beer pouring out of our Memphis plant. That [quoted text clipped - 10 lines] > and it was stopped from lawsuits about a truck drivers getting in wrecks > after having a few. Harvey R. Stone - 17 Apr 2006 16:43 GMT > Hi Harv, > I have an uncle that worked for Schlitz in Milwaukee. Seems to me they had > a strike and the company shut down the plant and put everybody out of work > there. That was many, many years ago. He still to this day gets two free > cases of beer a week! Good guy to visit when you were thirsty!! :-) > GaryZ Hi Gary, Aaah, your uncle lives and worked in a Schlitz brewery town and it was two cases a week. The brewery where I worked was sold which put a stop to the 2 cases a week and my job. The strike you are talking about took place many years before. The teamsters work for several breweries in the Milw. area and they all went on strike at the same time. It seems that Bud had them paid off and they continued to work in their plants. It took many years to build back the sales lost. About the time that Schlitz was back to neck and neck with Budweiser,,,, the Memphis problem happened and I went to work for Bud for 15 good years. I still get a pension check from both of them until I am 70 and the wife gets it until then if the good Lord takes me away today. So it goes. Harv
Butterfly - 16 Apr 2006 05:29 GMT Dr gave me Lyrica for it....just made me so dizzy I fell....Neurotin did the same thing. So now I just live with it. Just be very careful about breaking your foot bones. I have broken 2 already and felt 'some pain' but not as much as most would because of the numbness. Bone density test has always been in the 'good range'. No, I don't have diabetes either, but I do have Myloperifative Disorder on top of Peripheral Neuropathy.
Butterfly (now have steel plates in the soles of my sandals so I won't break any more bones. It sure has helped with my ability to walk)
> Well I don't take embrel or mtx, am not diabetic, and I have peripheral > neuropathy which was diagnosed by a neurologist about a year ago while [quoted text clipped - 4 lines] > > Ann Becky - 16 Apr 2006 16:22 GMT Ann, Thanks for the info, I am thinking a lot of this is due to my lower back, it is causing me a l ot of pain lately and I think it is from the orthodics and wearing them to much to soon, I don't know but I know that the back around the waist area is very sore to touch and if I press on it seems like you can feel those numb spots more. Who knows anymore it is always something with me sometimes not even worth waking up for!! Thanks Becky
> Well I don't take embrel or mtx, am not diabetic, and I have peripheral > neuropathy which was diagnosed by a neurologist about a year ago while [quoted text clipped - 4 lines] > > Ann Becky - 16 Apr 2006 16:20 GMT HI Rose, Thanks for the info, I don't have diabetes, my husband does though, I actually have low blood sugar once in a while. I am thinking ,maybe it is related to my back. It has been very sore lately and have been seeing a chiropractor but think maybe wearing the new orthodics to much to soon have caused it to go out, it is very painful in the morning and a lot of pressure of lower back maybe that is causing some leg numbness. I took the mtx last night and it has never bothered me but the last 2 times makes every joint in my body hurt so not sure. I also have been eating terrible to much sugar, and not enough water so maybe that is something also, I don't know anymore and am tired of trying to figure it out. I see the foot doc tomorrow to ask about he orthodics, I am not sure I even like wearing them but will see how it goes, shoes are defiantly hard to find to fit them they are so darn wide. Thanks again Becky
>>Well would like to know if anyone out there takes the 20 with the enbrel >>Thank [quoted text clipped - 14 lines] > > Please remove "Ima" to reply. Carolj52@webtv.net - 16 Apr 2006 05:24 GMT Hi becky, I take 20 mgs.of MTX injections,I'm on 50mgs a week of Enbrel.(25mgs twice a week)also 7.5 prednisone,(5 in the a.m.and 2.5 in p.m.) do you take the pill form of mtx or injectons?The injs.work much better for me.Have you tried Humira?I was on that and the Enbrel works much better for me.But everyone is different.I also have been off celebrex for 3 mos now,and was on it for 4 years. I'm far from perfect,but the best I've been in a long time,and I've only been on Enbrel for 2 1/2 mos.So I'm keeping my fingers crossed I'll get better yet.I still have problems with my feet-ankles,and left knee,so I know what your going through with your feet,not fun.I just had a steroid shot in my left (below the outside ankle) lasted for about 2 weeks and is back hurting again,RA Dr.wants to do an MRI now. Don't know much about the feet going numb.How is your back?My foot went numb when I was having lower back problems....I wonder if you could have bursitis in the hips?I have it in my left hip and it gets bad at times,can't sleep on my left side because it will act it up.well, Becky I don't know if I've been of any help to you,but sure hope things start to work for you soon...Carol
Becky - 16 Apr 2006 16:25 GMT Carol, Thanks for your words, I take the pills of mtx, 17.5 and may be upping to 20, it makes my stomach hurt a little the next day. I have noticed lately it also makes all my joints hurt more after I take it why I don't know. Enbrel is the only one I have tired of the new drugs that are out. The enbrel worked good the first shot I thought it was wonderful each shot after it went down hill. I was told bursitis of the hip and that is why they gave me a cortisone shot, to much of the same repetition of exercise they said, who knows. thanks again, Becky
> Hi becky, I take 20 > mgs.of MTX injections,I'm on 50mgs a week of Enbrel.(25mgs twice a [quoted text clipped - 15 lines] > I don't know if I've been of any help to you,but sure hope things start > to work for you soon...Carol Sue - 17 Apr 2006 12:06 GMT Hi Becky. I was on Enbrel along with 20mg MTX. The Enbrel didn't help me at all. I have RA and Ankylosing Spondylitis. I am now taking Humira with the MTX, as well as Prednisone. Now i have a question for anyone else on Humira. I don't know whether it is just a coinsidence, but i have been getting sick after the Humira shots. After the first one, i ended up with what seemed like the flu. then it turned into a cold, then a sinus and ear infections. i was sick for 2 and 1/2 weeks. i skipped my next dose because i was sick. then i took another shot Wednesday night, and was sick again on Friday. It felt like the flu again, and i still have a whopping headache, and cold symptoms coming on again. I don't know if my immune system is so suppressed that i instantly catch something, or if it is just a coinsidence. well, next week i will see what happens. If i get sick again, then i know it has to be the Humira. If so, i don't want to take it any more. It is bad enough being in constant pain, without being constantly sick! Does anyone else have the same thing going on? The Enbrel did nothing for me, but it didn't make me sick at all. I'm sick of all these meds, and sick of being bloated from prednisone too! sorry, just had to whine a bit! Sue
Thumper - 17 Apr 2006 17:59 GMT >Hi Becky. I was on Enbrel along with 20mg MTX. The Enbrel didn't help >me at all. I have RA and Ankylosing Spondylitis. I am now taking [quoted text clipped - 15 lines] >sick of being bloated from prednisone too! sorry, just had to whine a >bit! Sue I am on Humira and haven't noticed any side effects. Thumper
Janice Bolick - 17 Apr 2006 06:49 GMT Becky all your foot problems sound like mine. email me and I will discuss with you. I have diabetes and severe OA in my feet janice
> Well I saw my doc yesterday, said that if I wasn't complaining about my > feet hurting looking at me I look great, no swollen joints great range of [quoted text clipped - 23 lines] > Thank > Becky Charrlygrl1 - 17 Apr 2006 17:55 GMT Becky, yours sounds like ankylosing spondylitis to me. Hi Sue, I am a fellow ASer!!! (I haven't been on Humira, YET, so I can't help you there.) Enbrel hasn't been that great for me either; but combined with injectable MTX, azulfidine, a little bit of prednisone and a few other drugs, my AS is pretty much under control, at least for right now. I have been through so many meds, NSAIDS, DMARDS, blah blah blah. With AS it is not unusual to have pinched nerves or neuropathy due to spinal narrowing, curving or fusion. What I encounter is severe burning in the feet, plantar's fasciitis (which is heel pain that feels like stabbing up through the heels with each step) and also a feeling of rocks being underneath the balls of my feet. I have dealt with all three for almost 3 years until we finally hit on the right combination of drugs (the last of which was the injectable MTX). My doc switched me to the injectable...the same EXACT dosage as I was previously taking orally, and my foot pain disappeared the very next day. I still experience the burning and the ball of foot pain here and there. HTH, Char
Becky - 18 Apr 2006 02:05 GMT Janice I tried emailing you but it came back as undeliverable, try emailing me Becky
> Becky > all your foot problems sound like mine. email me and I will discuss with [quoted text clipped - 28 lines] >> Thank >> Becky
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