Thanks for the info on your experience. Makes me feel better. I was quite worried about the effects of going off suddenly. I will continue the drugs once i get some money, but i haven't worked in so long that i am struggling to pay bills and such. My doctor isn't forcing me to take the drugs, but he expressed a concern of going off them. I don't think doctors understand the meaning of financial trouble.

No the doctors sure do not understand I have NO money... I had the same problem with my rhemy in AZ.  I have come off meth also no side effects but wait you will get a big flare.  However if you go to the maker of the drug they might assist you in the cost if not all of it. Humira paid for the entire bill when I tried that drug.  They shipped it directy to me.  So if you want to take it and dont have the ill side effects... go directy to the maker of the drug, if you dont  know who it is let me know and I will look it up for you. 

 

good luck.....

Thanks for your information. I have looked into disability and medical help but due to the fact that i still have a month and a half of Employment insurance, I am not eligible yet. So I have to wait it out. I have had arthritis for 20 years now, and so I know general fatigue is normal with the disease, but since I went on these meds it is extreme. Some days I can't even get out of bed, my muscles shake and almost give out on me. My doctor says it will get better with time on these meds. I am glad to hear going cold turkey off them won't hurt. Both my doctors said it will be bad if I do. I will go back on once I get some money, but for now I have no choice. I do take many vitamins to help the energy, but they don't seem to be helping for now. But I don't have actual Rheumatoid arthritis. I have a Seronegative Arthritis, and inflammation doesnt only happen in my joints, but in my organs as well...so there could be other reasons for the extra issues.

My doctor lead me to believe that sero-negative RA is just "usually, but not always" a milder, slower progression type of RA--but I guess you can have sero-neg and have it be severe as well if you've been battling this for 20

yrs. :( Because RA can give you the inflammation in your organs, I'm pretty sure sero-negative can too because it's just RA w/ out your RA titer changing or becoming positive. I know they took a chest x-ray on me because labs came back normal as they normally do, but they found 2 mild erosions (one in my hamate the other on my pinky finger) and so they wanted to see what the heart and lungs looked like and those came back fine. 

Like I said, all that (sero-neg) means is that your RA titer is in normal range...but it's still RA an can cause the same amt of inflammation and damage to joints and organs. ~

Dina,

Being sero neg or positive means nothing.  It's just a test to determine the presents of RA in the body.  Nothing else.  No indication of milder, slower.  It's just a test. There are a lot of other tests they do on us to help determine the same thing.  I do believe you have been there and done that one...LOL

 

Jackie says she has 20+ years of battling RA.

LOL Ronie. I think I have had every test they can pull out of their butt in a short period of time. I know for the past yr, every lab tech at the hospital has used this line when I see 20 or more viles "please know that this is really not a lot, because if you were donating blood you'd see so many more."

 

What I wanted to say was, listen I get all these viles done every 4-6 weeks, plus a urinalysis w/ each...so I probably have in a yrs time given a good amout of blood and urine. LOL. NOT to mention certain blood tests like the ch50 OR total complement has to be on ice real fast and when it's NOT, they have to call me for a DO-OVER.

 

I remember one of my Rheumy's saying..."Ya, normal range was like (I wanna guess 48-60 something for ch50, but I could be wrong..lol) and you are a 12." WHAT! I said. 

He said if it was flagged as too high over the range we'd say there is inflammation in your body but sed and crp are normal as well...if it's too low like this shows, it's indicative of SLE most of the time or another AI disease. BUT we want to re-check this, because your c3 and c4 was normal."

 

I remembering getting a call from the hospital's lab saying in transit, something happened w/ the ICE it was supposed to be in/on...sooooooooo more tubes had to be drawn. It (a new sample) came back normal the next day. So they messed up in transit w/ the old.

 

AS you know, they took from both arms many a time when they just couldn't get anymore from one vein, :P so I looked like I was a crack addict w/ the marks and bruises. lol~

 

But ya, most of the Rheumy's I went to see said sero-negative usually takes a milder route. I know they throw in usually.

 

And since she is battling it for 20 yrs...I assume, she is dealing w/ loads of pain etc now.

 

 

I know 2 of my Rheumys said that sero-neg usually will show less joint erosion and deformities than people who test pos. for it, and they "usually" don't get the nodules like pos. RA does.

 

But you know I think they throw in "usually" to cover themselves...but they also said to me there is scientific evidence to back that up when I ask if they are blowing wind up my skirt.

 

I'm sorry, I think the progress is the same as well as symptoms for both like you said. My bad. Just joint erosion and deformities seem to be less severe in sero neg the drs said.

 

But w/ me...I have no visible swelling, and most Rheumys I have seen said that "whatever it turns out be" ie. IA/RA...they caught it so early, no pain for a yr, then it comes back at a 2 out of 0-10... that with minocycline they think they can stop the progression completely, but I need the MRI first before they are convinced--as for some reason they are NOT convinced w/ the xrays showing 2 erosions. 

They did tell me that most people are NOT that lucky. But because I am on their butts all the time for answers... ;) (it's the OCD anal aspect in me) they have been checking everything that they can possibly think of for a year-by blood, x-rays, and now the MRI of the hand and wrist.

 

What aggravates me is that 3 of those 4 Rheumys said not to worry, that it's fixable and not serious.

 

But IA or RA (sero or pos) are all auto-immune and from what I read they are serious...so how can you say not to worry. My husband seems to think because I have little to no pain in yr 1, and no visible swelling yet as these drs see it...that they believe they got this "thing" early enough. Every dr has told me I should be able to live a "normal" life w/ no restrictions if I take a DMARD only of my choosing and just bypass the NSAID if I don't need it because it's not going to help my IBS. Which I choose minocycline if that's what ends up happening.

I also have an appt tomorrow w/ the Neuro-Muscular Skeletal dr who will be doing lab tests to check chemicals in my blood and urine, a stool sample...which I am NOT looking fwd to, I'll tell you that right now, because sometimes she says leaky guts can cause AI diseases, she's checking liver enzymes, enzymes in the pancreas, joint fluid (another thing I'm not looking fwd to-- for viral/bacterial issues) and allergins, hormones etc. Also too much yeast in me? She will then send that stuff over to my GP and Rheumy. Fun fun.

 

This additional specialist said that usually she finds anyone that has an auto-immune disease, has issues that have been going on for years..and that is usually where the AI disease will come from.

I have IBS, which is now inflammatory, I have diverticulosis, I have kidney stones,

& w/in a years time, I developed a LOT of uterine fibroids, polyps, and ovarian cysts. I get chronic UTI's for no reason they can see, I get chronic sinus infections for years...

she said this was all POINTING to something wrong back then. If you can't figure out why it's happening, you are opening yourself up to an AI disease...so I still kinda blame the drs for not seeing this was a problem a few years ago. ;) The GP just sends me to a specialist...ie. ENT, Gi specialist, and urologist, and obviously the OB-GYN. No one knows why I got these all starting a few yrs ago...well the IBS was in my early 20s.

It's just kind of weird when you look at the whole picture as to things you have had wrong w/ you..and then BAM you get an AI disease. Something in the body isn't right.

I'm on a mission to find out why my body hates itself. LMAO.

 

Ronnie, have you ever heard of erosive OA? Sounds to me like that would be like a RA (inflammatory in nature)...as that was thrown out to. Confusing why they call it OA though.

Not to be rude dec2004, but I didn't ask for a description of my disease. My multiple doctors and research have told me what seronegative means. You should not be defining people's illnesses when you don't have a medical degree, and you are not correct. All I was asking for was people who are taking Methotrexate, or who have in past to let me know of their side effects and experiences. I am sure you are just trying to help, but you can do more damage than good if you are giving out medical advice and defining people's diseases to be other than what have been diagnosed.

I'm just telling you what my drs have told me. And I have seen a range of 4 Rheumatologists, 1 orthopedic surgeon, my GP, an urgent care dr, and 4 internists that practice w/ my Rheumy. I have been misdiagnosed a few times, so I know MEDICINE and a DOCTOR aren't even correct. And I never ONCE said I know anything about a disease. There is also a disclaimer on here that no one said they are doctors. I said what MY OWN DRS who have an medical degree have told me. SORRY that offends you. Yours tell you one thing, mine tell me other information. You are very rude, regardless of your pain or not. This site is useless. It's just people putting down other people. I can do w/o it. I already have enough stress, I sure and heck don't need someone else who thinks they know it all too because of what their dr says telling me what my own drs have told ME sero RA means as well is wrong. Unbelieveable.

hi roni,

 

i am in tx too.  i have applied for disability about 45 days ago.  man, these diseases really rob us of alot.  have any advice or avenues about getting help in tx?  

   Has anyone on this site done any study on the relationship of low Boron levels and Arthritis?..The facts are suggesting that Israel with the highest Boron in their water has the lowest Arthritis per head of population, at 1%. and jamaica the lowest Boron with 20% plus per head of population.

   A second fact that seems to be missing from all the Arthritis threads is that sheep with the disease, seem to get better if given Boron supplements in a couple of weeks. A theraputic dose appears to be from 3mg to 9mg a day.The old time remedy was to lick your finger daily, and shove it into ordinary Borax (thats the cheap stuff from any supermarket) up to the first nuckle stir what was sticking into an 8 oz glass of water and then drink it. As this is no more toxic than salt theirs not a lot of risk.

 

Wow, Deana, Thank you for that information.  I didn't know half it.  I could use some of that assistance myself.

 

I don't know whether Jackie will answer but I believe she lives in Cananda.  So maybe you can help me with some of the research to see if Cananda has some of the same programs you have listed.  Or send me a private msg on how i might find this info on the web.

 

Thanks again.

Thanks to everyone for their suggestions on the medications. I am in Canada, as Ronie said, so things are much different here. Usually there is alot of help in these situations, but my situation is just out of the box a bit. lol I have discussed my issue with my pharmacist, doctors, and some government agencies. Because I am on Employment Insurance right now, I am not eligible for disability (which will cover my drugs) until the EI runs out. I am not eligible for the medical benefit only because I made just over the amount they would allow to get the benefit. But, it will all be ok. I only have one and a half months until I will be able to go on the disability, so I just need to hold on till then. I will probably only have to be without the drugs for a few weeks. It may increase the pain, but from what everyone tells me here, there won't be other side effects, so I can handle that.

Hi there trevor

 

I so badly wanted to stop the meds but hubby not happy cause he believes it will progress much faster. The problem that im having is i battle to breath, its like i breath through my stomache and not my chest that my diagphram hurts eventually from wrong breathing. I feel i have a constant weight on my diaphram and it makes me so tired. i started getting pins and needles in my feet and my hands from hyper ventilating trying to get air. Do you or anyone out there have the same problem and what works best to relieve the constant battle. Im on Methotrexate.

 

Thank You

Annette

    I   hope all those with RA.are up with the play with regards Boron. If money for meds is a problem the old time rule of thumb is lick your index finger..shove it in a packet of 20 mule team borax..what sticks is swirled around in an eight ounce glass of water and this is drunk everday. This gives about 9 mgm of boron which is the theraputic dose.  Remember if your not getting enough Boron your probably not getting enough of the other essential minerals.So a supplements would be advised.

  It might be worth adding that animals with RA were given dmso which cleared the condition in a couple of weeks..The human version is called MSM..its an essential part of the food cycle which is missing in modern food preparation.Just dont take it at the same time you take Gluchosamine and Chondritin as it will give you a headach.Otherwise you can take large amounts of msn, its safe in all quantities as the body flushes what it dosnt need. it enables uptake of essential vitamins and minerals.