Good Morning All!!
First I want you all to know how grateful I am to have found this site and all of you. I'm gonna try to make this as sort as possible but I really need some feedback on this one. I'm lost, confused and quite frankly scared to death. Ok, here we go....I am 36 years old and was diagnosed with aggressive RA 3 weeks ago. Although the pain started in my knees about 3 years ago, I had no insurance until recently and quite frankly...after researching on the internet about the pain I was having, I was and am scared to death. It is now in my shoulders, hands, knees and ankles. Once I got my insurance, I had to kick myself in the butt and realize that being in denial was not going to help my problem so I made an appointment at the Rhuematologist. My biggest fear was confirmed with my RA factor coming back at 189 and the doc diagnosing me with class III aggressive RA. Now, here is what I need your feedback on...It seems as though what scared the life out of me in that one sentence my Doc said, actually gave him more excitement than a child with their first piece of candy. He immediately brought in paperwork for this University of Alabama Study called T.E.A.R.S and told me this was the best option for me. Of course, turns out he is the head investigator for this study. I have read this study over and over. I talked to a friend of my Dad's that has had RA for over 20 years who has severe joint damage and has undergone some joint replacement...she thought the study was exciting and wished it was available to her many years ago. I talked with a friend of my Mother's who is a retired Orthapedic Surgeon, his thought was absolutely NOT. T.E.A.R.S is a 2 year BLIND study with 4 different groups. Neither you or your doctor know what group you are in unless there is an emergency at which time your doctor will be told which group you are in. All subjects will receive weekly MTX. You will be assigned by chance to one of the 4 study groups. GROUP 1: aggressive treatment using etancercept in addition to MTX plus a placebo which will look like SSZ and HCQ throughout the study. GROUP 2: aggressive treatment using SSZ and HCQ in addition to MTX plus a placebo which will look like etanercept. GROUP 3: MTX and placebos for etanercept, SSZ and HCQ for 6 months. If the disease is not active enough to require step-up therapy at 6 months, no changes will be made. If the disease is active enough to require step-up therapy at 6 months, the treatment will be changed to MTX plus active etanercept while the placebo SSZ and placebo HCQ are continued. GROUP 4: MTX and placebos for etanercept, SSZ and HCQ for 6 months. If the disease is not active enough to require step-up therapy at 6 months no changes will be made. If the disease is active enough to require step-up therapy, the treatment will be changed to MTX plus active SSZ and active HCQ while the placebo for etancercept is continued.
I'm so lost in all of this! I'm newly diagnosed and feel as though I've been slapped in the face with this study that makes absolutely no sense to me....Heck, I'm still trying to get a grasp on what RA is all about. I do have to make a decision soon though and until then the Rheumy has me on samples of Celebrex. I welcome all opinions and/or comments you have and look forward to reading what you have to say. I apologize for the length of my post and appreciate you taking the time to read and respond. Peace & Love -- Neasy
First of all...sorry you have to be here and are scared. That is such a normal reaction. Even after 21 years of this I have my moments of fear. It is a lot to take in at once especially since you are being asked to participate in a study. My opinion on the study is go for it. No matter which group you are in, you will be getting MTX. So at least that will be a start in treating this. Not everyone responds to MTX and there can be yucky side effects. did they mention if it will be oral or injectable MTX? I'm guessing it would be inj. as the entancercept is also an inj. But I could be wrong. Inj. MTX is usually easier to handle as the nausea is less than oral. Not everyone gets the nausea and other side effects either. Anyway, I am of the opinion that any study unless the side effects become too much to handle is a good thing. But, that's me. I was on study drugs as a kid. (seems like tame ones now but this was to see if they were safe in kids...ibuprofen and naprosyn). I didn't have a problem with taking MTX although it did make me extremely tired and queasy. I did not like the oral MTX though becuase the nausea was strong and it wiped me out completely for 2 days.The study seems fine to me. No matter what group you're assigned to you'll receive MTX, which has a long track record as an effective RA treatment and is one of the more aggressive DMARDS. The only group that seemed a little worrisome to me is Group 4. In that group, if you need step-up therapy, you get HCQ (which is a weaker and less effective DMARD than MTX for most people) and SSZ. It would seem better in my mind to step-up to a biologic drug if you're not doing well on MTX and if you have aggressive RA. Group 2 also has that same feature--no biologic drugs.
I guess a question that you would need to ask yourself is if you think the treatment that you'd get in the study is better or worse that what you'd receive not being in the study. One thing to take into account is your financial situation and whether your insurance company would cover you for biologic drugs in the first place. If they won't, then the study might provide access to them that you wouldn't get otherwise. You should also ask how frequently they would monitor you in the study and what costs are covered. It may be that you'd get in to see a doctor more often being in the study than not being in the study. If, however, you'd have more flexibility and access to more drugs if you weren't in the study, then I don't see what the benefit to you would be to enroll in it.
You should definitely not feel pressured into the study. You should think first about what's best for you personally. However, I can understand your doctor's excitement. It looks like the study is designed to answer the question of what combination of treatments works best for RA patients, which is something we'd all like to know the answer to. And as a community we rely on people to be in these studies in order to make advances in treatment. It was a little unseemly though that your doc seemed excited that you are sick enough to be part of the study! That was probably the researcher inside him forgetting that he's in a clinical setting.
P.S. My one other thought is that if you're in the study you may have to do a lot of placebo injections. I don't mind poking myself with a needle because I know that there's real medicine going in. It'd be hard to keep doing it if I knew that there was a good chance that it's just a placebo.
Good luck with your decision!
Hi Neasy,
I have had aggressive RA for 24 yrs. It took 3yrs of trying everything before the right mixture was found. The first 3 Rheu... used the mildest drugs possible to start and then gradually moved on to stronger NSAIDS. They said it was my fault that I wasn't getting better.
Since you have been diagnosed with aggressive disease, I think you need aggressive treatment to try and stop the progression. I would opt out of the study if it were me. I would also insist upon aggressive treatment. Many Rheu... would start you on Enbrel or one of the other biological treatments that can stop the RA in its tracks. You are young and have many years ahead of you, let them use someone older with aggressive disease if they need that. There are many people out there with RA he can ask to join his study. He may try to push you into joining. I worked in medicine for many years and they can be pretty persuasive with pet projects.
The subject of money hasn't come up. Enbrel, Remicade etc are very expensive. Many insurance co will pay for them, but not all. The drug companies do have help for patients who can't afford to pay for those drugs. Methrotrexate is not too expensive because its been around so long and more than one company makes it. I used the injection MTX to stop nausea.
Ultimately you will make the decision and whatever you decide I hope you get better very soon. I'll be thinking of you.
Barb You're in my thoughts. I can be pretty frightening to find out you have a disease like RA. It's a scary thing, but please try to relax and breathe.
Sorry to ramble. I just wanted to let you know that there is hope, and we're all here to give you support and encouragement. Cris I've found that one of the hardest things to deal with having RA is the lack of control and predictability that it introduces in your life. And from your last post, Neasy, it seems like the lack of control has you reeling. Maybe what would help you mentally is if you focused (to whatever extent you can) on those areas in your life that are relatively predictable and where you feel a sense of control. Also, gathering as much information as you can about RA and your treatment options may help you feel less lost about what your future holds. I remember having several meltdowns when I was first diagnosed about 9 months ago. I had all sorts of fears that in the end never materialized. So, take a deep breath and remember that you've only been dx'ed a few weeks ago. No one is expecting you to "take the bull by the horns." It's normal to feel scared, anxious, and worried and talking about those emotions to others is good. But at the same time it's possible to do small things that make you feel like you have some sort of game plan for dealing with the disease. Some people find that making lists of questions for their doctor helps or researching all the different medications. Interestingly, research has shown that control doesn't have to be real for it to have a positive effect on emotional and physical health. So, whatever you can do to feel like you're in control may help you feel better. Good luck and hang in there! (((((((((((((((((((((((((((((Neasy)))))))))))))))))))))))) I hope the big hug helps. I agree with Barb since it is agressive you must take agressive measures. Ask your dr if they have samples of the drugs they can give you, also check into the drug companies of the meds you will be taking there are quite a few out there that are willing to help with cutting the cost of your meds. What kind of med co-pay do you have with the insurance?? I know it is scarey and frightening, but hang in there we are here for you and anytime you have a question or need a shoulder to cry on we are here this is what this board is for. Neasy, check at the library for some books on ra and check them out read them you will find lots of info there, they have books on the conventional ways, holistic ways, and brand new ways of treating ra. Barnes and Noble has an excellent selection too, if you would like to get a book to keep for yourself. Remember we are here for you, if you would like pm me anytime with aquestion and I will try to find you an answer, take care. meme
Ps Ask the dr for something to help sleep you need your rest or it will just make it worse. Hi Neasy, I noticed that you said you were having major anxiety attacks, depression and not getting adequate sleep. These can turn into something serious, so you need to talk to your Dr. He can do something to help you. Be sure too tell him everything you're feeling. I had a reaction similar to yours when I was first diagnosed. The medications they tried weren't working and I hurt awful. I was unable to work. I didn't say anything to anyone until I started seriously thinking of suicide. I was a single mom with total responsibility for raising 2 kids. I got it into my head that they would be better off without me. I didn't know if I would be able to work or if they would have to take care of me. I am a strong, independent person also, but sometimes we need some help. I told an Orthopedic surgeon friend what I was thinking and he stepped in. He got me appropriate treatment and I've always been glad that God sent me to tell my friend and get the help I needed. As my Rheu... says, "these days they have lots of things in their bag of tricks." Sometimes you do have to choose to take a drug that can have some bad effects. I chose to take the chance and I have a relatively good life. And you never know what break-through might be just around the corner. Everybody at this site will try to help. You can send me a private message anytime. Take care.
Barb I ( no doubt all of us ) hurt with and for you. We have all been where you are now and know its not a fun place to be , heck sometimes we go back and visit during a bad flare-up so we do know ! The others have all given you sound advise the only other thing I can suggest is to reach out to close friends, family, clergy and let them know how scared you are and that you need help. Don't forget your family includes all of us now so reach out to us also , we won't think your whinning , complaining or just being a foolish baby ! We were all in your shoes once and someone ( or many ) has helped us to carry on , shed a tear or laugh . Yes , sometime you will laugh again ! Trust me I'm 700 years old and play with elves
p.s. did you at least smile on that 700 year old part ? Santaruss Dear Neasy, I can totally relate to the anxiety you are experiencing. I too had that when I was first diagnosed. You're right, it does help knowing someone who also has RA. I wish I had so I could ask them alot of questions, and just to see that they were doing fine. My severe anxiety lasted almost 2 months until a good doctor prescribed Xanax for me and then eventually switched me to Zoloft (anti-depressant that helps with anxiety too). I'm still on this and feel great. Other things that might help you: write how you're feeling every day; talk out loud to yourself giving positive affirmations, like "You're O.K.","You're doing great",etc.; read inspirational books; talk often to people who truly love you; spend alot of time outdoors with nature-gardens/animals...; don't watch anything scary/depressing on TV-only positive. REMEMBER- You're not going to feel like this forever, you will gradually return to feeling like you old self again. Hope any of this helps. We're all here for you, Rana Neasy, I tend to agree with Barb & Meme. Opt out of the study and start aggressive treatment right away. Time is not on our side with this disease...the sooner you get started the less damage you'll have in the years to come. It's not really a choice you can wait to make especially if it's as aggressive as they say. MTX has been good for me; but I'm taking the highest dose my doctor would allow and Humira on top of that. You need to start now and Celebrex isn't going to do it. That's is for people with OA and it is doing absolutly nothing to prevent future joint damage. One more thing...I know the insurance is expensive; but it's an absolute must!! My medication alone would be about 00 to 00 a month if it wasn't for my insurance. There's no way on earth I could afford that. The doctors visits and lab work...x-rays; well you get the point. Do everything in your power to make certain you have health coverage. If it lasp and you have to get it later you'll probable be labled with a pre exsisting condition and imagine the monthly premiums you'll pay then. Honestly; I don't know how that works...but I wouldn't take that chance myself. It's all alot to take in. Do as much research as you can and be well informed when you visit your doctor again. We're here for you. This is a great support group as you've already discovered I'm sure. The advice and friendship you get here is very valuable. Good Luck. Keep us updated. Thank you all!!! I am truely grateful for all the support and every post. I made the decision yesterday to participate in the study. Two things weighed heavily in my decision; 1) Financial situation (It would be hard for me to afford the insurance premium along with medications, office visits, x-rays and all other expenses that go with RA) and 2) I believe they will monitor me much more closely on the study than if I go with private treatment. I go in Tuesday, May 3rd for a 3-4 hour screening process, back on Thursday for the results of the screening and begin the study treatment the following Thursday. I am not 100% comfortable with my decision and am still scared out of my mind but I feel this is the best option. I will keep you all posted as to how things go and what happens with the study. Perhaps whatever happens with me will help someone else with RA in the future...it's not as bad when I think of it that way. By the way, I found out the MTX is going to be oral. The only injectable is Etanercept. Rheumy told me the injections can be done in the stomache or thighs. I can't say I'm excited about that at all, especially not knowing if you are injecting Etanercept or a placebo. Oh boy are we in for a ride
I know God will not give me anything I can't handle. I just wish that he didn't trust me so much. & nbsp; ** Mother Teresa** Neasy; You're right. It's studys like these that help improve the treatment and bring new medications to the market. None of us would be where we are not if people like oyu didn't exsist. Thank you. I wish you the best of luck...and will be following your progress closely. Keep us updated as I know we will all be anxious to see how things work out. We're here to support you. Hi Neasy, You made your choice and I wish you the very best of luck with the program. Be sure and let us know how you are getting along. Thinking of you. BarbCongrats on making a choice. Your reasoning is sound. Don't
let your self doubts get to you. I can't think of anyone (except
myself) who looks forward to shots. But, they aren't so bad once
you get used to them. At least in my opinion! If you ask my
hubby, watching me give myself a shot is creepy. He cannot do
it. I have such a hard time with oral meds (I cannot swallow
them) that I get so sick of crushing them and putting them in chocolate
pudding. It's the only thing that kills the taste for me.
I'd rather have eveything in a liquid or shot form. Convincing
docs of that is fun though. But, then again, I'm an odd duck! Neasy, We all owe you and everyone else in the study a huge THANK YOU!!! We need all the help we can get with this disease, and unfortunately the best way to find out what treatments are best is to conduct these types of studies. I bet you'll get monitored even more closely than those of us who aren't participating in studies! And whoever said "whatever group you wind up in, you'll be getting MTX, which is good" I agree with that. I was just diagnosed in February, and it freaked me out too; it still does sometimes. I take the injectible MTX, and the shots are a piece of cake - totally painless! I just grab a little handful of the fat on the front of one of my thighs, hold the syringe like a pencil, jab it in QUICKLY at a 45 degree angle and - ta daa - DONE till next week! I'm sure they'll tell you, if they haven't already, that MTX is slow-acting -- it can take awhile before you notice improvement. Hopefully, you can take something for pain in the meantime. I have found Physical Therapy to be very helpful too. You will have better days, and when you do, you'll REALLY enjoy and appreciate them like never before!! Best of luck to you. I hope it works like a charm!
Hi Neasy... I'm new here too, but it seems that we are amongst a good group of people who offer care and support. I have been reading some posts, and to me it seems sad that we have to have so many medicines, and that so many are paying SO MUCH for their meds. I can't help but think there's a better way, maybe combining nutritional supplements with meds to ease costs and decrease side-effects. Please understand, I'm not one of those annoying "ad-mongers" that roam through here posting "miracle cures"! On the contrary, those people should be banned! However, I have a degree in biology, and have researched nutrition a bit, and also have seen people benefit from nutrition in regards to their joint health and arthritis conditions. I just wanted to pass along that supplements(whatever brand you deem best) might be an alternative to many of the drugs with their nasty side effects. God bless you, Neasy in your quest! Jason Hi again, Meme! I sincerely hope that in my posts I've not offended you in any way. Let me clarify...my wife had fatigue, not arthritis. I have an aunt who suffers from arthritis, and you are right, I don't have any idea what kind of pain and suffering that means...for her, for you, or any other arthritis sufferer. But forgive me if I try to encourage people to find improvement in their condition the way my aunt has. I'm not pushing anything but HOPE. Without hope, regardless if you have fatigue and asthma, like my wife, or arthritis, or whatever, without hope, things are very very difficult, and I do happen to know about that. Once again, I apologize if I've somehow offended you, but as you said, everyone seeks to help the pain somehow...I'm just hoping someone can improve their condition in a natural way. If that's not you, then fine, I'm not here to push you or anyone. But when you've seen what something like supplementation can do, you don't want to give up hope. God bless you, meme and may you find relief from your pain and suffering. Jason I agree with you people need to have a positive attitude to be able to go on with life so many are frighten when they hear the word arthitis and they shut down. One of the most key important things people must realise early detection and early treatment helps to slow down the progression of the disease so that they can continue on with as normal life as posiible. It just upsets me when people assume they know what it is like when they haven't been in the shoes of person who suffers from, ra, pa oa lupus, fibromagylia, etc. So I am sorry is I am very overprotective of my fellow sufferers, we just hear too many people telling us: WELL YOU KNOW IF YOU TAKE SUCH AND SUCH OR DO SO AND SO YOUR ARTHRITS WILL DISAPPEAR... It just burns me up !!!!!
Meme, You're right, it is impossible for me to imagine what it is like for arthritis sufferers. I honestly feel for you, although I know that I have no idea... I hope I didn't come off with an assuming attitude, that wasn't my intention at all. But we need people like you who look out for their fellowperson. That is lacking these days! I can only hope that some might see a ray of hope in what must be at times a dark experience. If I've appeared any other way, forgive me. Jason Jason "reachtheunreached", Please consider us reached at this point. We give and receive rays of hope everyday here through our sharing with and caring about each other. I think if suppliments were the cure for ra or fatigue the secret would have been out long ago. Guess what?? there is no cure. Sorry to jump in here Meme, but I could'nt stop myself. Pam Hi Pam, I couldn't agree with you more! There might be no cure, but there is hope for improvement. That is what I hope I've been portraying in my posts, not some hair-brained idea for a cure! I can only speak of what I've seen, which in my wife's case is a return to her normal energy level through supplementation. That might not be the case for everyone, but it was for her, and that is what has changed my mindset with regards to supplementation.
Jason Hi Jason, I understand that you're simply offering a suggestion, and possibly some hope. But we've been so inumdated with "ad-mongers" lately that we're a bit edgy here. Just don't be so pushy about it, OK? Like Pam said, we receive hope every day. That's why we come here. Because we're with friends and people who care, and we give each other hope. Supplements are always a good thing, and most of us here use them. And alot of the time, they do help some. But alot of the time, they don't help ease the pain, or increase our energy level. (At least not for me.
I appreciate the fact that you're only trying to help, and shed some light in the darkeness. Just ease up a bit, OK? Cris Hi cris, Thankyou, exactly! Wow
I hope you had a good day today, enjoy your evening, Pam Jason....we have been reached now, thankyou. Oh My!!! I leave the board to go watch American Idol and come back to a "Flash Flood".
Jason, I know you meant no harm and obviously you have a good heart. I do have to admit that while reading the board and seeing several post by you regarding natural supplements, I thought to myself "Would you stop already". I'm not sure what brings you here but nevertheless, thank you for caring. Please understand that no one has anything against you or what you are saying. It's just that RA is a very frustrating and complex disease and those of us suffering from RA amongst other horrible diseases, experience pain physically and emotionally that you could not possibly imagine. I'm sure EVERY ONE of us wishes there was a natural way to help ourselves but the ugly truth is...there isn't. In the time you take to experiement with a natural remedy, your joints can become detroyed which leaves you severly deformed. I'm not willing to take that chance, would you? Try to imagine having a doctor tell you that you for some unknown reason have an auto immune disease, a disease in which your body attacks itself. A disease that will cause you pain beyond your wildest imagination, chronic fatigue where you literaly feel like you are dragging yourself around and all kinds of other horrible things, a disease that you did not cause in anyway and there is no cure...you just have to learn how to live with it. We all know what the drugs we take can do but the truth is, what can happen is worth taking those risks. The pain associated with RA is so bad sometimes that it actually makes you feel crazy. I personally have had so much pain at times that in my mind I think "If I could just cut my leg off it would feel better" or "If I knew how to get a hold of heroin, I'd shoot it in my veins in a heartbeat just to make the pain go away" or "Maybe I'll just take some sleeping pills, go start my car in the garage and just gas myself". These are very real feelings when you are experiencing such pain and I know I'm not alone with those thoughts. I can't even begin to describe the emotional roller coaster of finding out you have RA or anything of the like and learning to live with it. You really NEVER know what it's like until it happens to you. Even if you have someone close to you that has RA or the like, you still can't come close to knowing. That's why we are here for each other and "yes" very protective of each other. This is the only place for us to go sometimes where people truly understand and know exactly what we're feeling. The only place people are truly accepting on good days and on the bad yucky days. We all know how good natural supplements and healthy diets are for us. Unfortunately for us that's not enough for us and taking conventional drugs just isn't an option, it's a must. When we were healthy, we too took daily things like getting out of bed, brushing our teeth, walking the dog etc.. for granted and we too had options. Once you reach this point, you can't take one day for granted because the next day might be THE DAY. As far as options, they are limited as well. I personally am very afraid of my RA, the drugs I take etc... However, as afraid of the drugs as I am...I am also grateful that they exist because without them we would be in a far worse situation. With all this said, thank you again for your kind heart and please try to understand where we are coming from. Hopefully I did not ramble too much and have given you a little insight as to what we experience on a daily basis. Peace & Love....Neasy ((((((((((((((((((pam, Cris, and Neasy))))))))))))))))))))))))))))) Ladies I couldn't agree more!!! xoxoxox Meme
I have to agree with my friends here. These so called natural cures are wonderful things for people such as your wife who suffer from fatigue. Chances are she was lacking some sort of nutrients that these vitamins have replaced and has helped her to feel better. Although fatigue is one of the symptoms of Rheumatoid Arthritis that is not our only problem (Although granted we do suffer with it). Like Neasy mentioned we do not have the luxury of experimenting with different “natural cures” time is not on our side. Every day, month, year that we waist the destruction to our joints….and in some cases vital organs gets worse and worse. The damage that occurs is not reversible. Once it happens it’s too late. A lot of us here use vitamins in conjunction with our doctors prescribed treatments to help with numerous problems; but to even suggest that we could do without our medication and simply use these natural cures it makes me wonder exactly how much you actually know about the diseases you are targeting here. That’s not good advice at all any doctor knowledgeable in Rheumatic diseases would tell you the same thing. Many of us here know that given 6 months (That’s being extremely generous) without our medication and our bodies would literally lock up. We would not be able to function. Many of us here have spent years and years trying to find drug combinations that work for us. It’s a never ending process. It’s not something we take lightly…in fact most of us are more scared of the medications than the disease itself; but we’ve lived with the pain long enough to realize that this is just our lot in life. We do whatever we can to live somewhat normal lives. There are a lot of groups out there that think everything can be solved with natural supplements and homeopathic cures; from the responses here we are obviously not one of them. Maybe you should research the net for some of these groups and mingle on their boards. Indeed, very big difference between fatigue and fatigue caused by a chronic illness. I got sick when I was a year and a half but wasn't diagnosed with RA (JRA) until I was 3 years old (35 now) and every friend, family member and nosy body had me trying every hairbrained "cure" out there from shark vitamins to cabbage diets to dirty socks wrapped around my head. They all had good intentions of course but when it comes down to it, the only thing getting me out of bed in the morning is my enbrel, arava and naprosyn and a good 'ol does of spunk. I come to this board to look mingle with "my people" not to be confronted by some vitamin pusher. I agree with the previous posters. Consider us reached and please mingle elsewhere. I for one am very curious about the study. Neasy - how is it coming along? Kayobe...I checked back here to see how she was doing as well. I'm going to start a new post; I'm sure we're all very curious. Vitamin Pusher!! Love it...looks like he's gotten the hint. Good work my friends!!
I am always suspicious of people who join this group and they or no one in their immediate family has arthritis. Don't they think we are going to wonder what their angle is? I worked in surgery for many years and I swear everytime I got on the elevator someone (in the medical field) would tell about a sure cure for arthritis.
Barb
Not a vitamin pusher or pusher of anything that claims to be a cure! I understand how you must feel, with everyone promising some great new product or home therapy and trying to shove them down your throats...it's got to be tough. In my case, I do have family members with arthritis, so I simply wanted to pass on something that has helped them. I sometimes get the feeling that in this message board, some folks don't really care if something has helped someone else. That's fine. To each his own, right? So, whatever works for you guys is awesome. I hope you find relief with whatever drugs or home remedies you find. I just hope that we can each benefit from the experiences of others, and make this message board a place for acceptance of all people, whether they find help with drugs, nutritional supplements, or even socks around their heads! Thanks. Jason I don't understand why you are still posting here if you do not have any form of arthritis. I could understand your relatives that have arthritis posting here but "why are you still doing posts?" Get a hobby! Barb That last post from Jason reminded of an old familiar phrase from the headlines--"Can't we all just get along?" I notice he keeps saying his wife has arthritis, but is very nonspecific. What kind of arthritis, Jason? Is it rheumatoid arthritis? I submit probably not. Because if she had it, and he were trying to push her to take supplements to cure the disease, he'd probably have not appeared here, since she whould have found a way even in pain to shove the supplements down his uninformed throat, thereby rendering it difficult to type as he was turning blue... And if wifey indeed has RA, why isn't she here? Where do these people come from, and why are they here? And how do they find us. Do they just Google "arthritis" because they have nothing better to do? That's just weird. Jason, we DO accept all people (with arthritis) and all suggestions for things that may help. What we don't accept is someone who DOES NOT know what we're going through, try to PUSH things on us that don't work. Supplements are NEVER a bad thing, but they are NOT a cure for RA. They CANNOT make the autoimmune system do it's job properly. Period. RA is a very different condition than "arthritis." All of these people with their "cures" are really making me angry. Yesterday I even had a friend try to sell me an antioxidant liquid that a friend of her families is selling. She told me her mom no longer gets headaches all of the time, and the woman selling this stuff had a problem with a knee that has gone away since taking the antioxidant. She told me she thought it would be good for me with my condition. Don't people understand that these things are not going to make the RA go away? Do they just not get the fact that RA is an autoimmune disorder? Sheesh, I'm sick of it! Cris HI ALL!!!
Sorry I haven't posted lately...I've had doctor appointments coming out of my bum and yes, dealing with a tad bit of an emotional slump but today is a new day right?! Thank you so much for your posts and pm's...I love you people!! Okay so here we go....Last week I went in for the final screening so I could start the study. Part of that was an extensive eye exam which did not come back well. The doctor came back to tell me he suspected early stage glaucoma and wanted me to come back for even MORE test. I sat in the chair with tears streaming down my face thinking "Just shoot me, I can't take anymore of this". Well, I had two appointments this past Thursday. One at the Opthamologist. Results there came back a much better. Hooray!! Dr. scanned my optical nerve and although I didn't pass with flying colors I passed well enough that he wasn't too concerned and we set up an appointment for him to re-scan in 6 months. Second stop was the Rheumy so that they could show me how to give my self injections and give me my study kit. Study kit???
Sounds like you're off to a good start; and don't be so afraid of the MTX. 2 tablets? That's hardly any at all. I now take 9 and think I started with 4. Take it before bedtime to start...if there are any side effects you'll sleep through them. Good Luck Girl!! Keep us posted. Lovie Oh Neasy, WOW! It does sound overwhelming, and I really really respect and applaud what you're doing!
Your Friend, Jason Awww, that post really made me feel bad. I really do believe Jason's intentions were good. I don't know what brought him to this board but I do believe his heart was in the right place. I know that some of the things he posted were irritating to us but I also believe that was because 1) We are so frustrated by Ad Mongers, 2) We are protective of each other and frustrated by our illness and 3) Jason came here not truly understanding what our illness is or what we feel on a daily basis. This is only my opinion and certainly hope I'm not offending anyone. Peace & Love....Neasy No offense here Neasy.
I do believe he had good intentions, but before telling us that we should take this stuff, he should have researched what he was talking about. He doesn't even know what kind of arthritis his aunt has, just that the stuff worked for her. I'm sure he meant well, but he came off almost the same as the holistic healer did. I get so frustrated with people telling me what will help when they have no clue what they're talking about. And I know that some of them mean well. But they need to know what I'm dealing with before they can presume to offer me a cure. Just my opinion. Cris Oh, and by the way, Neasy, you're in my thoughts with the study. I admire you for taking it on, and hope it all works great! Definitely keep us posted. Cris No offense taken and I absolutely agree with you. The post just made me feel bad. Peace & Love...Neasy I feel a little bad too. Jason; obviously none of us understand your intentions...but you make a very good point. Why continue to come back and correspond with us...defending yourself? If you were just here to get a few sales; you would have posted two or three "Ads" and moved on like so many others do. But you keep coming back for more. BY now I think you are probable starting to understand that most of us here...I dare say all of us here suffer from far more than fatigue. It's a very serious illness that has caused us to seek support here from others in our same situation. I'll admit I don't quite get your point...but I personally won't continue to abuse you ;) Best of luck to you and your family. It seems like hardly a week goes by without someone telling me about something that worked for someone they know and they just know it would work for me. I just nod and smile (through gritted teeth) and then change the subject. Most of them mean well and are not trying to sell me anything. But the point is, my true feelings have to be repressed or I risk becoming a pariah that people will avoid at all cost. Along comes Jason with his well meaning advice, posting here at the one place where we can vent our feelings and not be declared an outcast. Of course I'm going to tell him what I really think about his advice. He's standing in for all those other people and their well meaning advice that I can't tell what I really think. I don't think that makes me a "mean person". I had another similar post under the prednisone heading. Margarete sent a personal message telling me that if I cut out salt, I would easily lose the weight gained taking prednisone. That post is under the prednisone heading. I was very angry,
I am not going to feel bad about my postings to these people. I haven't used any bad language or made threats. I think they are just in the wrong place and need to find a group that would welcome them. Unfortunately some of them don't seem to be able to take a hint and have to be hit over the head with a sledge hammer. I'll get down off my soapbox now. The end. Barb
Yeah, and I got a PM from Esther today. She offered me a free session, convinced that she can help me in some way. I'm tired folks. Very tired. My days are getting worse, and I'm getting frightened. My kids are getting frightened. I can't sleep, too worried. I know I shouldn't get so worked up about it, since that only makes it worse, but right now I can't help it. And having to deal with all of these people telling me to simply change my diet or let someone talk my body into working correctly, is more than I can take right now. I'm sorry.
Cris Cris, No need for apologies hon. As you know, this is the one place you can come and say exactly how you feel. We are all in this together and it's incredible how much love there is on this board for one another. People who have never met, yet have a closeness that most of us don't even have in our personal lives because the people we love and that love us can never truely understand. I am so very sorry that you are going through such a hard time. My thoughts are with you and your children and hope that things start to look up for you.
Peace & Love...Neasy Hi All!! I've had a few request for an update on the University of Alabama Study (T.E.A.R.S). I just wanted to let you know that I have an appointment Thursday, June 23rd. I'll be sure to post an update after the appointment. So far, I'm not real impressed with the study. I've had headaches, blurred vision, more aches and pains and more flares. I've also had problems with my hands that I didn't have before. I'm still battling this horrible head and chest cold and although I'm feeling better, I just can't seem to kick it. I'm wondering if the MTX might be the culprit. Anyhow, hopefully I'll have more information on the 23rd. Peace & Love...Neasy (((((((((((((Neasy))))))))))))))) Hang in there sweetie, I hope things get better for you really soon!!! xoxox meme Neasy, Sorry to hear about your cold, having arthritis should be more than enough by itself. You may have to stop the MTX to give your body a chance to deal with the cold. Usually you can restart the MTX at the same dosage. Take it easy until you can see the Dr. When you do, be ready with your list of questions and make them answer them all to your satisfaction. Barb
Hugs, Wayney
Copyright ArthritisInsight.com