I am new to this site and have been diagnosed with RA. I keep reading that such and such a treatment works with early to moderate RA or not with severe RA etc.
Can someone explain to me how moderate to severe or early to late is diagnosed? My RA factor was 219, my sed rate was 57. I had changes on my x-rays, my rheumatologist told me I caught it early. I don't believe him at all. I have had the same symptoms, with the exception of my hands and wrist hurting, for a long time.
Thanks for any information.
Welcome to AI Danielle.
How do you manage physically? Pain levels? I think that has a lot to do with how they would consider your RA.
You'll probable find a lot of people here that are sero-negative but are in horrible pain on a daily basis and nothing seems to control it.
Then you'll find other's here with a really high RA factor and hands that look like thye can barely be useful. Some of those folks manage daily life very well.
I think it's based on a case to case situation. I doubt anyone here can tell you exactly.
Thank you Lovie. I would then consider myself having mild RA. Before I posted I read all of the posts that I could find regarding RA. I felt for some of the people on this site as it appeared that they are suffering far more than I and that's how I conclude this is mild RA.
But, there are changes on my x-rays. I can see changes in my hands (knuckles bigger, one finger a bit crooked) so I do have some progression.
However, I do not have what I would consider to be severe pain. It does hurt but I can stand it. At times I feel as if someone is holding a blowtorch to my right hand and a sheet can't rub against it. Other times it's fine but my wrist always hurts, no matter what.
In the AM I always hurt, take an Ibuprofen and then I'm okay for the day. It isn't pain I'm afraid of, it's what happens when it progresses but, since I am almost 62 years old, how much can t progress?!
I have yet to take a medication as I have not decided what I wish to do. I was diagnosed in March and I am still mulling over my treatment decisions.
Thanks, in advance, for any help you may give. I appreciate it. OH, one thing that does bother me very much. The fatigue is unrelenting, debilitating. I see that as a common thread in a lot of posts.
Hi Danielle, until you get your disease under control with medications for RA, your fatigue will always be with you, some people can;t even shake it with ra treatment (I am one of them) but you have a better chance. I would get treated asap for a better chance of control, the longer you leave it the harder it can be to control, all the best Janie.
Hi Jane,
I have been prescribed methotrexate and plaquenil. My doctor told me they have been around forever and are very safe. Never advised me what to look for regarding side effects. When I returned home to research them on the web I couldn't believe the results that were returned to me.
It was kind of unsettling to think that I would be taking these meds and he didn't care enough to explain to me that plaquenil could cause eye problems and the other drug (mtx) could also cause problems.
Yes. I know they are obligated to write down each and every problem and that it may not ever happen but I disliked being in the dark and that's how he treated me. Like, what she doesn't know won't hurt her.
It could hurt me if I didn't know what problems I am supposed to report.
Guess I sound kind of disgusted with my physician, and I am. I can't trust him any longer and have been looking for a decent rheumatologist in this area. So far I have gone to two that I didn't care for and am still searching. I need to have that 'good feeling' about a doctor or I won't go, I know myself.
Thanks for letting me know the repercussions of my actions. I had no idea that treatment would alleviate the unrelenting fatigue. I thought it was because I am not young and my immune system is shot.
I have been lurking for awhile on a lot of boards and the prevailing thread seems to be the tiredness that comes with this disease. Makes me feel much older than I really am. I thought it was just me and now I see that a lot of these unfortunate women have children and must work and keep house. I don't see how they do it. I know I can hardly do anything I did prior to my diagnosis.
My hat's off to all of you.
Danielle,
I've had RA now for 13 years. I was in my 20ties when I was originally dx'ed. Although it has progressed and changes are evident on x-rays the medications have gone a long way toward slowing it down. I honestly believe that.
Maybe it would be possible to use just one of those medications he's prescribed. MTX & Plaquinel together is not uncommon, but it is a little odd that your doctor would prescribe them both together right from the start. Usually a combination treatment isn't used until it's proven that one alone isn't helping. The ultimate goal would definately be to control the disease with the least amount of medication possible.
I know the side effects sound scary but it's often not as bad as you read. I've been on both of those over the years and still to this day use MTX. It's been a really good medication for me and I'd highly recommend it to anyone.
Don't think that you're too old for things to get much worse. It can and for some people the crippling effects can happen in as little as two years. I'm not trying to scare you; but I want you to be aware of the facts.
We're glad you're here with us. Hope to see you more often.
It really is very rare to have eye problems with plaquinal. Especially in the 1st 6 months, people get a little braver when they find a treatment that works and causes them no problems. Perhaps your RD thinks people of your age don't want to know, but would just rather follow instructions. (That is the way it used to be and you are border line on that 'Father Knows Best' age group.
You really have to clue them in that you want to know in detail about all the treatment options. I just flat out tell them. Saves everybody's time.
ps WELCOME.
Welcome to the board!! Super name. My youngest daughters name is Danielle...and she has jra.
Does your doc have you on folic acid? the mtx causes a folic acid deficiency. Side effects are different for everyone. I inject the mtx and am only super wiped out the next day.
lol Gram, I thought maybe that was her joining us at first.
M~I agree with you about the doctor. Some aren't the best at explaining things and to be honest, most patience aren't quite as resourceful as we all are here. Frankly most Dr. don't think their patience will bother with the research. My doctor learned pretty quickly that I knew a good bit about these medications and the disease itself. It's helped our relationship once he realized that.
I've been on MTX for 20 years and have had no problems. One office visit, when my exays showed no damage, I asked him if that was unusual. He said the mtx stopped the desease from progressing and causing damage and I should be glad that it did. Not to say that one day things might change but for now it seems to be working. I do take folic acid and have blood work done every 3 months to check for liver problems.Danielle, you've been diagnosed and now you seriously need to consider taking the meds that have been prescribed to you. Not every physician has a great personality but that doesn't mean they're not a good doc. Actually, my RD has the bedside manner of a flea, but he's brilliant, top notch credentials, aggressive with treatment, respects my intelligence and listens to me. I don't care that he's socially inept.
I can guarantee that you'll develop damage from RA if you don't get it under control. And no, I can't tell you what "under control" means. It's different for everyone else. I've never been in remission, but since I've been treated by my RD the damage has been controlled and has slowed. I'm also 62 years old and I think that's about all I can ask for at this stage. I was diagnosed in my early 50's and went into denial and didn't start meds like I had been prescribed. I've developed some severe damage and complications to other organs due to RA.
At our age it's about quality of life. I've felt better in the last couple of weeks than I've felt in years.
When I was diagnosed I was bedridden with a severe onset of RA, my RA factor was 900 and SR off the scale. It was ugly and unrelenting. Now I don't consider myself severe. On the best of days it's mild and on my worst it might be between moderate to severe.
Don't be scared of the meds, be more scared of the progress of RA. Please establish a relationship with a RD. They'll become your buddy. I hope this helps and keep us posted on your progress and your decisions. Lindy
HI Danielle, I know it can be worrying reading all of these side effects but as the other people are saying they are very rare, I know that doesn't really make you feel any better but honestly, the relief you will get will be worth it, find yourself a good rheumy and GP as it really is important that you feel you can talk to them about anything, your Dr really did do the wrong thing by you not explaining, nut the same thing happened to me and when I read the leaflet in the box, I freaked and phoned the Dr, and he said "oh, I meant to ask the pharmacist to remove that so as you wouldn't worry'!!!!!!!!!!! Anyway, I have been on MTX on and off for 7 years and have had problems with bad tummy, mouth ulcers, hair loss and infections, but trust me that is better than the alternative, best of luck Janie. PS the newe biologics scare me even more so I am glad we have the better choice in my opinion of MTX. (I had allergic reactions to Enbrel and Humira).
Hi Lindy and Everyone,
A friend of mine gave me the name of a physician who gives antibiotic therapy for RA. I don't know if I actually believe in it or not but I told her I would give it a shot and see if I get any results from it. She saw that Kathleen Turner (movie star) was taking minocycline and Celebrex and did some investigating for me. At the time I was ill and did nothing at all. Much better now. I am presently researching all I can about antibiotic therapy. The only con that I can see is that it does not promise results right away. It's a very long and drawn out process and I am no spring chicken. But, and this is a big but, I am terrified of taking those toxic drugs. Absolutely terrified. I will do anything so that I don't have to take them.
I spoke to my doctor about the antibiotic therapy and he totally disagrees telling me that RA is a viral disease and not bacterial. The premise for antibiotic therapy is that RA is from bacteria.I just saw that the American college of Rheumatology has added minocycline as a treatment for RA so I don't understand where my doctor is coming from.
I guess I'm in denial but you are correct and I am darned stupid. I already have changes from it as I wrote in a previous post. I can actually see them and if this is not severe it is certainly very aggressive/progressive.
I am angry with my rheumatologist and not about his bedside manner. I told him that I wanted to know everything he was doing, what the prognosis was, if we caught it early, what he thought of the new biologics, and yes, why he was prescribing these meds. He gave me plaquenil first, when the results came back he added the methotrexate. No other drugs along with it and I was to go back in three months (the beginning of July ) to get checked, then after that less often.
Tomorrow I have an appointment with my primary care physician. Now he does have the bedside manner of a flea but I am going to appeal to him to give me the minocycline until I can get to the doctor who will administer my antibiotic therapy. I can't sit around and do nothing and wait to disintegrate. I know that you're right and that it will get worse.
What are your thoughts on this therapy? I'd appreciate your input. Thanks for your help and your concern. I was very afraid before I posted. I'm feeling better now knowing that I'm not alone. Please excuse the long winded post.
Jane,
You wrote that the meds are better than 'the alternative.' What exactly is the alternative? What happens to persons with RA? Is this a fatal disease? Does it shorten life span? That's what I wanted to know from him and that's what he didn't answer.
Do you know that when they said RA, at first, I was relieved? How stupid of me. I thought it was just arthritis, like everyone I know thinks of it, no big deal. I have learned a lot in a few months.
Thanks for your help.
Hi again Danielle, I have tried the antibiotic therapy and I can honestly say it did nothing for me, I stayed on it for 3 years, but don't let that put you off as some people swear it works and maybe it will for you. My rheumy and the Dr who prescribed the AP for me did say though that it was to be used with the regular meds for RA as AP can take a long time to work and you can do a lot of damage in that time while you are waiting. You will probably find that a lot of rheumys don't believe in it, especially those from the old scholl, but you never know so give it a go, it certainly won't hurt you. The GP that treated me with it said it had to be used in union with a restricted diet, no wheat, dairy, etc etc and using some naturopathic medicine too so it became quite expensive for me. Besy of luck and well done for doing all your research, love JAnie. You have certainly done your homework on RA, so I can see why you are so upset with your RD for treating you like that. I would not want to continue with him either. As to having the pharmacist remove the package insert, aren't they aware that we not only have the internet, we USE it? Maybe some patients like to be treated by a benevolent father figure who tells us not to worry, but most of us on boards like this are far too savvy for that. As to antibiotic therapy, I am sure you have already visited the two main boards: www.roadback.org and www.rheumaticsupport.net. If not, they are great sources of info. It can take time to work, but the sooner it is started after diagnosis, the better. You can always try the other drugs later, or add one in if absolutely needed. Good luck in whatever you decide, and keep us posted, everyone's experience benefits others. Pat
Thank you Janie,
At my age, in my opinion, I should be out enjoying myself, having fun with my husband and doing what I can to make life good, no matter what gets thrown my way. This disease has been 'thrown my way' but I can't allow it to destroy the rest of my life. No wheat, no dairy, no chocolate covered cherries, nuts, M&M's, Baby Ruth bars? Those dietary restrictions alone would make me hate to get up in the morning.
I really am willing to do what I can to get well, even diet (I was just kidding) but I have heard from several others that the antibiotic therapy does not work, others have said it does but takes years and then some have had immediate results. I am willing to, as I said, 'give it a shot.' If it doesn't afford me some relief in a reasonable amount of time then I will have to take the traditional meds and hope that I can manage them. My rheumatologist told me that sometimes nothing works, no matter what one does.
I just want to try this instead of the harsh toxins that are the alternative. Those changes come on fast though, I am watching it happen, so I will keep having testing done to insure that I don't allow the progression to become worse.
Thanks for being so kind and allaying my fears.
Hi Pat,
I have done nothing but lurk on all of the boards, not asking questions, just reading and studying everything that I can. I am learning a lot from the experiences of others. I have ordered the book, New Arthritis Breakthrough, and am waiting for it to arrive.
This board seemed very, shall I say, homey? I felt comfortable posting here so this is where I landed.
I have wanted to ask this. What does RD mean? Is that short for rheumatic doctor?
Thanks very much for your kind welcome. I appreciate it and will let you know what my primary physician tells me after my appointment tomorrow. I am going to ask him for minocycline as I have to wait a month before seeing the physician who will prescribe the antibiotic therapy. I am hoping against hope that this will be the answer though I know I have an old immune system and that's one count against me.
I need all the help I can get. A little luck won't hurt either!
Pat,
No, I have not heard of rheumaticsupport.net. I am going to look it up. Thanks for the information.
Hi Pat,
Wow, what a great source of information. I clicked on your link (rhematicsupport) and started reading what to do (and what not to do) if considering antibiotic therapy. There's so much to read there.
I am going to ask my physician tomorrow if he will do the testing for the mycoplasma and send it to the labs they recommended.
Thank you. I may be able to get a jump on this with all the information you gave me. I'm very grateful.
Hi Danielle!
I'm totally into AP - I was diagnosed 'early onset severe' and was nearly incapacitated within 5 months. I started AP 5 months after diagnosis without using any of the traditional meds except a couple of predisone packs and was lucky as all get out - I was an early responder. At my AP intake my RF was 703 and dropped to 395 within 2 1/2 months. Any of the people here will tell you I'm totally pro-AP - LOL.
That being said, I assume you'd already found the www.Roadback.org? That's the one I like the best. On their home page under studies and education you will find both a physician package that you can print out as well as studies to take to the GP. If I remember correctly they are paraphrased but running a google search for some of the key words (ie Israeli study and Minocin) and you'll find the exact study. Usually giving studies to back up your request will sway the GP.
Also - make sure they write the scrip for Minocin and write DAW (Dispense as written) on it. That will get you the brand to start. Minocycline will work but try the big gun first (until your insurance company realizes you're getting it every month and forces you to the generic). The brand is time released and is much gentler on the stomach especially if you have GERD or any stomach issues.
I am so with you - I'm angered by some of the BS rheumy's did to try and talk me out of this. My opinion - how many of us would be so much better off if they only offered this first. It's an ARC approved DMARD but they act like we're asking for VooDoo Dolls and pins.
Read the book when it arrives - it totally makes sense and is such an easy read!
Also - please don't discount the diet aspect of this. I was doing wonderfully but had a big stress filled cross country move and forgot to take my probiotics and AP'ers know NOTHING is more important than probiotics. I'm backsliding healthwise but hope I can quickly 'undo what I just idioticly undid' if that makes sense?
Feel free to ask questions and/or PM me.
Pip
HI Pip,
Cute name!
MY RF was only in the low 200's and I thought that was bad. I still don't know how you got a diagnosis of 'early onset-severe'. My physician said. RA. Period, nothing else. No explanations, no words of encouragement, nothing. Plaquenil, Methotrexate, see me in 3 months. I am still annoyed with him.
Pip, do you know any place where it states, in writing, that antibiotic therapy is now an accepted therapy according to the ACR? Or. is it stated anywhere, in writing, that it's a now accepted DMARD? If I can find that to take to him he may write me a prescription based on that.
I really was kidding about diet. I know that it's important. My husband and I will barbecue a few steaks and then, in the am, we will both say how ill we were during the night. We both call it 'steak stomach.' But we still don't learn. If a bad diet causes the pain then I will do anything to adjust my diet.
Thanks for your kind and generous offer of help. My friend did a lot of research for me when I was ill, in the beginning, and she really found out about the antibiotic therapy and found me a doctor too. I will have to travel but I have heard that he's the best and that he is well known for administering the therapy. I am keeping my fingers crossed.
Wish me luck and thanks, everyone is so kind.
Yep -
Go to the American College of Rheumatology website - they call it a DMARD, I think.
I knew you were kidding - heck, I thought I had to give up bagles because of gluten - can't tell you how many decades I've had a bagel for breakfast - but it would have gone in a second if gluten was my problem. Most current research says 70% of all AI diseases start in the gut - I just didn't think that would apply to ME! LOL But apparently I've been borderline yeast for a long time and skipping the probiotics for 6 weeks did me in. I'm going to be doing a HUGE post on the RB in a day or two because I want to bring this under control fast.
OK, so if he's the best he's probably Dr. F in Riverside or Dr. T in Boston. Or maybe some of the hotshots out of Vanderbilt. Am I close? Darn - forgot Dr. S in Iowa. I went 2500 miles to see Dr. F and am glad I did. But, day to day this is a hard program (especially in the beginning). It's better to have friends to hold your hand. Sometimes when you're scared you don't know if a reaction is normal or if you need to go see the doc. Those boards Pat mentioned - I've seen posts about 'get the to the doc, NOW!". LOL
Good Luck and happy healing!
Pip
Pip,
It's the doctor in Iowa. Is he good? I have heard he is the one to go to so I am making a special trip to see him and I hope that I am picking the right one. It took forever to get an appointment.
Boston is closer for me but my friend said that the doctor in Boston doesn't do IV therapy and she thinks that I should have that first so we picked the Iowa doctor. She and I are going and hopefully will make a fun trip of it. I hope.
Yes, I will post what happens. Thanks for the help.
I've been thinking of going to see him!
Did you see the recent post on the RB - seems the place to go is the bowling alley/restaurant. LOL Hey, the guy's in the middle of a cornfield and studied under Dr. Brown - he does consults for docs everywhere! What a cool man! So I've heard. His patients all LOVE him.
I see Dr. F and just found out today I could get the IV's so I'm asking for them on my next appointment in a couple of weeks.
The Boston doc doesn't believe in infectious therapy - which I really don't care if they believe or not. I BELIEVE. Rumor says he does the 5 minute limit on subsequent visits. That's why I saw Dr. F - that and I love LA so we moved here to get me closer to my AP doc. LOL
Good luck tomorrow! It will go fine!
Pip
Hi Danielle,
I'm 60 and have been diagnosed with RA for about 3 years. Like you I was confused about what constitutes severe as opposed to moderate RA. I have Sjogren's, fibromyalgia and OA in addition to the RA and I thought having more than one autoimmune disease would make you have a more severe case. According to my rheumatologist, you have severe RA if you have bone erosions.
Hi Pip,
I sure hope I don't love this man that much. I do not want to move to a cornfield in Iowa. My apologies to anyone in a cornfield in Iowa, it may be an excellent place to live, but not where I would choose.
The bowling alley/restaurant? As in the same place? We'll make sure that we don't miss it.
One question, why does everyone say Dr. F and Dr. S etc? Are we not permitted to write their names out? Thanks.
Just the rules on the RB so because I didn't know the rules here I chose to do that. We're not supposed to advocate one particular doc.
Hey - you're not the person posting about the RV trip are you? Cz if you are - what a fantastic idea!
Pip
Hi Linda,
That settles it and thanks for the information. I wish my rheumatologist had told me that. I thought that because I wasn't hurting as much as the next person my case was mild. Guess I was wrong.
I'll back up and say that yes, I do have a severe case of RA. My x-rays showed changes in my hands and wrists that were said to be indicitive of early RA. I also have lyme disease and fibromyalgia and if having more than one AI disease makes you a severe case then I am a severe case.
I was tested for Sjogrens about 20 years ago. I was told that I had abnormal cells (biopsy of my salivary glands) but not enough to make a definitive diagnosis.
I don't understand how the changes can be early RA unless it's early but progressing rapidly. Scary thought.
Thanks very much for your information. I want to know all that I need to so that I can make some informed decisions.
I'd better get to sleep as I'll know how severe this is in the am when I can't get out of bed!
Hi Pip,
No RV trip but wish I could. We are going to fly. I doubt that we two oldies would be able to maneuver an RV. Maybe we could hook up with the RV people. LOL
Thanks for all of your help. I really appreciate it. You sound so upbeat that it makes me feel better about this rotten diagnosis. I hate it but I am sure that there are poor people much worse off. Makes me count my blessings. Thanks.
The important thing about choosing what you are going to do for treatment of ra is doing what you believe in and what you think is best for you. That goes for anyone!
Linda and Danielle -
I really don't think these rheumy's work from the same book. My rheumy said I was early onset severe because my PRA was very aggressive and progressing very, very rapidly. As of now I do not have any bone erosions but I'm going to have them check every year because it's better to be safe than sorry and somebody posted that they thought they were herxing but they were flaring. Until, for me, all herxes are gone - I'm not taking any chances. :-) Of course, I believe I'll be in remission soon. Also, I have only one AI disease now. Just trying to keep it that way.
Danielle -
You have lyme? Have you been to lyme.net? Not sure if that's the right address but there are a bunch of lymies posting on the RB. You guys have more to deal with than 'regular RA'. I think you guys have to do multiple ABX but don't quote me on that.
P.S Anybody susspecting their RA started with Lyme needs to get tested by Igenex. The standard tests (Western Blot etc.) are really flawed.
Gram! - How have you been? I tried to send you a PM when I got back but your mailbox was full - as usual! LOL
Pip
LOL sorry Pip!!! it's all cleared out now. I am doing very well!! Finally!!! How have you been? The move go smoothly? You all unpacked and settled yet??
Thanks Grammaskittles. It will all boil down to doing what I am comfortable with. I appreciate the input.
and Pip, yes, I do believe that my RA began with lyme. I don't know if they co-existed or one precipitated, or caused, the other. Please tell me how I can get tested by Igenex? Thanks, off to my doctor appt.
PS Grammaskittles,
When I said things could be worse I was speaking of your situation; children having RA. I am thankful that it was me and not one of my children. That would be much worse and something that, for me, would be very hard to handle. So, I imagine that I am lucky.
I'm really sorry regarding your situation and hope that she is doing well.
Thanks Danielle. She is doing well on pred and celebrex right now. Most likely adding mtx at her next appt. and taking her off of the pred. She has decided to do injectable mtx and said I can inject her if she can inject me lol. So I let her do my humira injection last night in my arm. I didn't let her do my mtx since I do that IM. No way is that kid going to dart an 1 1/2in long needle into my thigh muscle lol. I can just hear her laugh evilly about that one lol.I don't really agree with the Dr. that says any errosions indicates severe RA. I have errosions in my hands, knees and back. These are just the areas that have shown errosions on MRI's and X-rays. I imagine other places would show the same signs; but there has been no test to confirm it. I also show bone loss on a bone density scan.
I'd still consider myself moderate. Although things have progressed over the years I still manage very well compared to many people I hear about and would consider severe.
I'm not sure there's a real chart that indicates that. It might just be on a case to case basis. I'd be interested to know for sure....but don't suppose it would change much either way.
Danielle -
While I'm sure you'll get the scrip for Mino - you might wait until you see Dr. S to start. When is that appointment? If it's still too far away you need to call them and ask about getting the mycoplasma tests and Lyme tests (and any other test he can think of) before you start treatment. I had a scrip for Mino but decided to wait until I was tested because if I could get a positive diagnosis then, in theory, if later I needed IV treatment, then insurance would cover it. I decided to wait 6 weeks before starting AP just to see what I had - and for me it was strep. This can save you big bucks down the road because I'm pretty sure most Lymies need a rotation of ABX to bring the beast under control. If you test postitive for a myco then the insurance will cover the IV's.
Also, because of the possibility that you have a multiple mycoplasma issue you need to seriously think of testing first. Most labs in the US are not set up for this. They'll send your blood to a specialty lab. This is part of the reason I went to Cali to be tested - the Great U near me doesn't test for this stuff and was so confused on the LADA tests for my husband they may have messed up the blood they did take.
IgeneX has a website - you can send for the kit but my AP doc had his own. :-) The Great U near me refused to allow me this test even tho I'd been camping and could have been exposed and even after admitting to me that the Blot was 'flawed'. Sheesh. I didn't have Lyme but what are you willing to pay for peace of mind - which - I'd told the docs at the U and that I was willing to pay for the test myself.
The myco tests are flawed too - we joke they take a vial and we hope a bugger swims in - but, if you test positive you are better off down the road with the insurance companies.
Gram!
Oh, I am sooooo behind. But there is light at the end of the tunnel - I can definitely see patches of carpet in the front room. LOL I'll send a PM as soon as I finish stripping and repainting a cabinet in the apartment. Too UGLY for words! I finished the first coat of paint yesterday and hope to be done tonight!
Pip
I was told it is when you have a lot of damage in a short period of time, when you are monitored the damage continues, your RA is med resistant and has not been controlled you are considered severe. Also, severe onset. Hope this helps.
There is a chart published that has mild, moderate and severe. I wish I knew where it is. I will look.
Thanks Roxy,
I'd love to se that chart. I appreciate the help.