Hello all,
I am posting here because I don't know what else to do...no one understands what I am going through (thank god they don't have to) and how much pain I am in so I really need to vent and I was hoping you all wouldn't mind if I told my story. This forum seems lilke it has some really great people on it from what I have been reading and I think some similar experiences may be out there, so here goes...
1 Year ago (age 25) I started experiencing lots of pain in about every joint in my body. My feet and knees were the worst at that time, I didn't have health care so I bought aleve and ate it like candy. Eventually it got so bad I couldn't get out of bed let alone even dress myself. I couldn't move my hands, my wrists and arms were numb and painful, it was just absolutely horrible.
Finally after coping with this for a few months I got my employer to finally provide me health care otherwise he would lose me as an employee. I went to my general practitioner and he ran blood tests and found very high levels of (something) that indicated I could have RA.
So, on to the rheumy I go and he verifies I have severe RA. He starts me off on prednisone and aleve for about a month. Eventually he puts me on MTX and folic acid also. After a few months of this I started to feel a little bit better but my body was getting worked. I have various knuckles that are bigger than large grapes, some of my fingers are swollen, my feet are deforming and in serious pain all the time causing me to limp all over the place. The pain is horrible I can not always bear it and I become a weaping baby whenever I try to help my wife with our 3 kids or anything else for that matter. To think I used to be the one to open the mayo jar for her, now she does it for me, LOL.
Anyways his next suggestion is enbrel or rhumacaid (not sure on spelling sorry). both of which I can't afford and my insurance won't cover at all. He says they will help me alot but I just can't afford them. Especially now that I lost my job because of all of this and we are totally broke and tap'd out.
So I have been now going on over a year with this, on prednisone and MTX with no sign of hope for the future. My dreams are shattered to pieces (wanted to be a police officer my whole life), my wife is trying to finish up school so I can stay home and take care of the kids but she still has two more years of school and I feel like I only two more months that I can take of this. They say the good die young right...but they never tell you that they cripple too.
For anyone else that is dealing with this as well as other health problems, my heart goes out to you I am so sorry. After dealing with this myself I feel so bad to hear that others have to as well it just is not fair.
Thank you for your time and letting me vent it feels good to talk about it because it is killing me slowly mentally and physically. Any advice or suggestions I am "all ears".
Thanks again,
Buck
Buck,Hi Buck..welcome.
Sorry you're in such pain right now. Just curious...how much of the mtx are you currently taking?
Hi Buck, Welcome to the forum!!, this is a terribly lonely disease. We can't understand what our bodies can possibly be doing to us!! I started out 'not being able to walk!' and took plaquinel, which is not terribly expensive, and then various amounts of methotrexate (more and then less), my life saver was 15 mgs of prednisone.
Others have suggested you contact you doc's office, and find out how you can get help, right now! YOU can't sit home and wait for this to 'clear up' because it won't. Your life has changed and your dear wife must know the terrible pain you are in. If she could get health insurance some way, you so you can get on your feet again it will be the best for your family.
This is a terrible situation for you and I'm so glad you contacted this forum. Please keep asking questions, we'll do the best to help you. Lynda
As a couple of the others suggested, you need to contact the companies that make these RA drugs. Most of them have a plan to help provide meds to people in need, who are not financial able to pay for them. I'm surprised your doctor did not check on that for you. Is he aware of you situation? If not, please let him know what is going on in your life. Stress also plays a big part in how we feel, and how quickly the disease progesses.
Also the Arthritis Foundation has some programs for people in need, I believe. Call them and explain your situation. Hopefully they can help you.
We are always here, if you need to talk.
Take care.
Gentle hugs, Nini
Hi all,
Thanks so much for your warm welcomes and kind words.
After reading these posts I called my Dr office and they just got this new program documentation called Remistart.. It's supposed to pay for some of the co-pay for infusions or something like that. I am going to go to the office tomorrow to fill out the paperwork. It's exciting knowing that help may be on the horizon :)
I'm scared to file for disability. Might be hard to get a job later I heard. SSID also makes me feel like I've given up and I haven't "yet", lol. I just may have to go this route someday even though it doesn't pay anywhere near what I make now.
I have lined up more work but for someone with RA, auto mechanics is super tough. I can barely twist off oil filters anymore.
I really just want to be able to play with my kids again. My son always wants to rough house with me and I miss being able to do that with him. On my good days I can but it hurts, though I love seeing him have fun and smile it just makes all my worries melt away for a while :)
Thanks again for the support I appreciate it!!
Buck
P.s. I heard Remicade has a side effect of lowering the immune system and illness and infection can insue, have any of you on remi dealt with that or had problems with that yet?
Welcome Buck
I am so sorry to hear that you are in such bad shape. Makes me sad. I hope they can find something to help you as you truly need it.
Feel free to come ask questions or vent. I am told that's what this board is for.
[QUOTE=kelstev]Hi Buck..welcome.
Sorry you're in such pain right now. Just curious...how much of the mtx are you currently taking?
[/QUOTE]
Hi,
I am taking 8 MTX a week right now, can't remember the milligrams. And I take 1 prednisone a day at 5mg. Also take folic acid, glucosamine, majestic earth vitamins and minerals and I just got some of this new stuff called Trigosamine. Suppose dto e helpful for RA sufferers I don't know we'll see....
Buck
so sorry about what your going thru. In some states you can get help thru the state, here in Ca. you don't have to be broke, they can do a share of cost till you can get on ss of some kind. My husband and I had too, a few years ago when his insurance ran out from his job. We both was working, then within 2 years we both were down with arthritis and couldn't work, It was so hard to even meet the share of cost without working, but we made it and so will you. Don't do without your meds. find help some where.
Will be thinking about you and pray that things will get better for you.
Take care Rusty
Buck, your story sounds so similar to mine as far as how RA hit me and progressed, I could have told it myself. Take Cheeseheads advice (that feels weird to call someone Cheeshead seriously ). I bet their is something that can be done. Enbrel made me practically normal again. I take it with MTX, but started MTX first with some good result, but I was still handicapped. Maybe the two would do the same for you.You definitely need to be on a biologic-Remicade, Enbrel, Humira,
Hey Buck -
If you decide to do the Remicade, these guys can all point you in the right direction of getting some financial help for it.
If you want, look into the antibiotic route - called AP for Antibiotic Protocol. There are studies, info, and a forum at www.roadback.org. The generic of Minocycline is not very expensive at all.
Just don't let anybody tell you it doesn't work for 'early onset severe'. It does!
Hugs,
Pip
P.S. you need to get all copies of all tests, X-rays, doctors notes and start a file. Also, journaling really helps figure out what is going on when you're in the trenches day to day.
Buck, you have received some great info here and there is not much more to add. But I do want to welcome you and wish you great success in your search for help as it is out there.
Hi Buck,
Welcome to the board. I'm so sad for you but it'll be okay. I've had severe arthritis in all joints from nose down since birth. It does get better. The docs just have to find the right medication for you. You've already been given some great advice re: help with your medication. What I wanted to add was about being on SSDI. I had to go on it 2 yrs ago because the RA was causing shoulder issues. It's a long process. 6 months long. Anyway, this wasn't what I wanted to say re: SSDI. I don't look at it as giving in to RA. I look at it in 2 ways. 1) It's preventitive medicine. Stress can cause havoc with our RA and one of the biggest stresses people have is money. So, I'm eliminated that by going on SSDI. 2) I have the best job in the world right now. I stay at home and play with my 2 yr old daughter all day. If the RA hadn't chosen to go crazy about 8 months before I became pregnant and make it so I couldn't work anymore, I wouldn't have been able to do this.
Big Hugs for you,
Steph
HI BUCK AND WELCOME ARE STORIES ARE SO SIMILIAR IT WAS KINDA OF WEIRD READING MY STORY SOMEBODY ELSE WROTE. LOL I AM GLAD YOU FOUND THIS SITE EVERYONE HERE IS JUST WONDERFUL THEY CAN ANSWER JUST ABOUT ANY QUESTION YOU COULD COME UP WITH AND THEY TRUELY SEEM HAPPY TO DO IT. I DON'T KNOW ABOUT THE OTHER BIOLOGICS THEY MAY BE THE SAME BUT IF YOU GO ON HUMIRA'S WEBSITE IF A PERSON QUALIFIES THEY HAVE GRANTS TO PAY FOR THE MEDICINE THE OTHERS MAY DO THAT TO I DON'T KNOW. THE ONLY DIFFERENCES IN OUR STORIES IS I AM 35 AND HAVE 2 KIDS AND INSTEAD OF ADVIL THEY GAVE ME ULTRAM. KINDA FUNNY HUH IT REALLY DOES GET BETTER. BUT UNFORTUNATELY IT TAKES TIME HANG IN THERE AND JUST LOOK AT THOSE KIDS WHEN YOU FEEL LIKE GIVING UP. THAT'S WHAT I DO.
BEST WISHES TO YOU AND YOUR FAMILY.
Buck,
I totally agree with Daryl...you wrote my story also!!!!
Welcome to the board.....so glad you found us! Just sorry for why you had to find us!
Everybody gave you great advice (as usual) everyone here is so great!!!
My story is I am 36 and a mother of 4 beautiful children. Please keep posting!!!!
Hugs to you and your family!!!
HI all,
Thank you all for being so warm and welcoming it is very nice to have find a great community like this. Some of your posts brought my wife to tears
It's interesting to hear some folks have had such similar stories! Let's hope they all include happy endings, I know I want mine to.
I was curious if anyone on SSDI can answer some questions for me, I think gordon mentioned beign on SSDI, anyways. How is the pay comparable to what you used to make? How long can you be on it? Do they help you with medical visits and RX?
Oh man I almost forgot. I'm not sure if this is a side effect of RA or the meds I'm on but sometimes I get serious fatigue. I've fallen asleep in traffic a couple of times commmuting home from work. Someone had to honk to wake me up, scary huh? I'll find that I get up in the AM and I'm already ready to hit the couch and sleep for 4 more hours after breakfast. Is this normal?
Blackwell
Hi Buck,
I am on SSDI. The pay you get is different for everyone because it's based on what you made and paid into disability insurance while you were working. There is no time limit to be on SSDI however after 5 years, I think they send you for another review of your case. As far as help for medical visits, that doesn't happen until you've been on SSDI for 2 years and then you're eligible for Medicare. I've just become eligible and gone through the Medicare process. I have to pay out about 0/mo for medical insurance between Medicare and the supplemental policy I had to purchase to cover drugs, physicals etc. But that amount for the supplemental policies differs by state and even area, I believe. If you need more info either post here or PM me. I'll answer anything I can.
Hugs,
Steph
Forgot to add, the pay isn't comparable to what I made before having to stop working. I make a lot less but it helps and being on SSDI, there are other programs I have qualified for.
I wanted to say "HI BUCK".
To answer your question about fatigue....it's something that goes along with ra. For me it is the worst. My sleeping pattern is so mixed up. I sleep half the day away and then take a nap around 4pm and stay up until 1 or 2 am. I can nod off in a heartbeat! LOL
When you get on your remicade or whatever it is you are getting on, it should help with the fatique. I am on humira and notice that it has increase my energy and has helped my swelling.
Good luck and best wishes
Hi Buck...sorry to hear you're having such bad problems.Hi Buck,
I am sorry you're struggling to get the treatment you clearly need. I hope the advice you've been given will help you! I can't add much really as I live in the UK and healthcare is different over here... You're in the right place here to get help and support. I know you asked about the effects on your immunity of remicade and I couldn't find an answer in the other posts (although I might have missed it). Remicade can have an effect on your immune system, just like any of the other biologics and also like MTX which you're already taking. If you start remicade you'll be given guidance by your Dr and by the drug company about keeping yourself healthy and about things to watch out for.
I hope you get some treatment sorted out soon.
KT
I'm sorry to be so late here, but your post brought tears to my eyes and I just wanted to welcome you and remind you that you can post, vent, yell, cry....whatever, and we'll be here to "hear" you and help you through, and that goes for your wife too. It may help her to vent sometimes too. There's nothing more I can add to the excellent advice you've already received from others with more experience than I, but I was glad to read posts from others who were where you are now and doing better, as I know you will too.Hi Buck,
None of us realize how many others know exactly how we feel until we come accross a site like this one. Your story is so like MANY of our stories. I to was a mechanic when I first stated getting symptoms. I was fortunate enough to change positions before it got to its peak! As I am sure you have read it verries soooooo much from person to person. Stop in as often as you like or need to. Tell your wife she is just as welcome. Feel free to PM me anytime.
Keep us posted and take care of yourself.
Jay
Hi Buck
Sorry you are here but welcome. I'm right at the beginning of my RA life cycle and cant tell you how great the girls and boys on this site are with regards to info and support. RA fatigue is a bummer and normal, we just have to learn that our 'normal' is changing/has changed whether we like it or not.
Hi Buck, my heart goes out to you.
I am sorry to be so late to post here and you've been given such great advice by all the fab people here on this Forum. Just a few things to add from me.
First, though I echo what Linncn, Darrel and Angry-TV-Junkie have said ... the story was all too familiar and it touched the emotions very much .. took me back 12 years to my own onset of R.A. which escalated over a sort period of time and was hard to control at first - it went beserk really.
I thought I would be in a wheelchair and asked my partner to have all the doors widened in our house and had little hope of anything to be honest. (he didn't BTW!). I saw a psycho-therapist at the onset of R.A. because I was angry as well as upset as I was convinced an ex-boss had brought on my R.A. as she was a slave driver. Whether she exacerbated it is still open to debate. It was easy to blame her anyhow as she was not a good person. I was told that when you get something like R.A. you "grieve" for the person that you were. I think that's true. I was an athlete and a fellwalker so it hit me hard. However, I did pursue my love for art (I was working in advertising but never had time for the hands on art anymore but I did a Degree in Fine Art when I stopped working) My life changed so much over the past 12 years - OK, not always for the good . .there's been ups and downs with the R.A. and I have found that, as Gimpy says, gentle but regular exercise such as the swimming pool is very good for you (I did hydro for three years and I swear this has saved my leg muscles!) and saw my physio for about two years, three times a week (he saved me did that guy - he used to say the old thing about - if you don't use it you lose it) so there is hope when things are rough, I promise. I am tellling a bit about my onset as it shows I did turn it round .. with a little help from my friends, as "Ringo" once sang!! - (Beatles!!) Well a lot of help to be honest.
I couldn't beleive that I would ever get pain relief - know we all felt/feel like that at times (I am thinking recently of Cordelia too and all her pain ... hope she's continuing to get relief, BTW) but I did. It just took time. However, if I had been offered one of the biologicals if they had been in wider use in 1995 (they were just on safe trials here in the UK and I declined one of those trials) then I would have said yes to anything as I had gone so far down the road with the immobility of the R.A. . I won't go into much detail it here but I will say it hurt to breathe my back muscles were so stiff at one point.
I am wanting to tell you things did get better - but that first year is hard to get used to change ... I am now doing OK on MTX having been on Sulphasalzine which didn't work after 6 good years and 2 iffy ones. It just ran its course - that first initial med.
I wonder Buck, if you could get relief from the most inflammed and troublesome joints by having a hydro-cortisone injection. In th UK where I live, it is the procedure to give patients with the onset of severe R.A. (whch is flaring out of control) shots of hydro-cortisone to the joint(s) or a general one (in the bottom) to "dampen down the fire" (what my Rheumy says) which is what they did to me and it helped/helps so much. It's worth a try if they dont suggest this to ask about it this is a possibility. It relieved me whilst my Sulphasalazine took time to effect (about two months for me).
I have no idea of how the benefits/social/disability works in the United States, but I would have thought - like here in the UK, that an employer can't discriminate against someone with a medical condition or disability - specially if you are a current employee. I am sure that the DDA (Disability Discrimination Act) does not allow this in the UK but again don't know what you have which is similar. (Pin-cushion,Gilly or anyone else from the UK - you may know this?)
My warm wishes to you in the hope something starts to get better really soon for you.
Joolie