ETA: Darnit, I forgot to mention that my RD wanted me to start with MTX too but he asked if I liked a drink now and again, I answered in the affirmative and he said we will leave the MTX for now! Started on Plaquenil and Sulfasalazine plus Prednisone and have been pretty good ever since.
I agree...you need to read about the drugs any doctor wants you to take. Find out everything you can. It's your body and you're the one who has to live with any problems that occur. BUT....don't be too afraid of methotrexate. I was once where you are now. Terrified (I'm assuming here) of the side effects of methotrexate. I didn't take the methotrexate prescribed to me for some time. I eventually gave in when I couldn't get out of my bed. It's now been 17 years that I've been taking methotrexate (along with plaquenil and sulfasalazine) and I've had no problems with it and it's worked very well for me. I found that plaquenil did nothing for me on it's own, but with methotrexate it does help.
I'm sorry you felt you were talked down to and hope you can find a doctor to work with you in this long journey that you will be on.
Welcome pursuit. I do not have RA, but I do want to welcome you and answer any questions you may have.what exactly scares you about methotrexate? MTX is probably the most tested RA drug we have out there. It was originally a drug to treat cancer at a much much higher dose than we take for RA and many of the side effects listed for the med come from that use.
Welcome pursuit. I have only been on MTX for 9 months and really have tolerated it well. I, like Kelstev started on plaquinel which didn't do much for me. We then added MTX and Enbrel and I have had a remarkable response. Don't be too afraid but this is ultimately your decision and you know what is best for you. I just thought I'd share my experience with you as it is fairly consistent with Kelstev's. I also remember LyndeeNZ when she was going through treatment options. Hang in there, a treatment plan will present itself for you. Good luck to you, Hiking_galHello Pursuit, welcome. I would say if you feel that strongly, make an appointment with him or another RD. Go to the visit armed... have a list of questions about the drugs you are considering (make sure you have done research and are familiar with the drugs before the visit - saves precious time) and don't leave until you have the answers you seek.
drugs to treat RA, we are lucky we have them available.
The more you know, the better you will be able to communicate, the better treatment you will receive. In this battle we fight with RA,
Thank you so much everyone! I appreciate the quick responses and advice.
What scares me about the MTX? Every possible side effect of it scares me. It's strange, because I never would have been scared to take a medicine in the past, but when they send you down to radiology to have your lungs checked, and then proceed to tell you that you can only have 1-2 drinks a month from now on, you start to think "really???" You guys don't even know what causes it and you're throwing this stuff at it, which they don't even know (from my research) from what mechanism it works.
Someone mentioned this disease is a mind trip. I think that pretty much sums it up. I make a living on the computer and spend my days playing sports with my 3yr old son and last night I couldn't do either of them.
Can I ask you guys something? What do you consider living again and being under control? Will I be able to play basketball with my son in 5 years? Will I be able to provide for my family if I take this stuff, or am I just going to get by on it?
Can I ask you guys something? What do you consider living again and being under control? Will I be able to play basketball with my son in 5 years? Will I be able to provide for my family if I take this stuff, or am I just going to get by on it?
My hands are my tools as I am a caterer. When I was having an enormous flare, my hands did not function at all. The meds gave them back too me and boy was I grateful! So being able to walk, work and carry on pretty much as normal was/is under control for me. I have not missed a day at my kitchen since I began the meds ( well it was the Pred that worked overnight for me) with only minimal discomfort on occasion.
To be honest, you have a much better chance of being able to carry on and provide for your family with some kind of medication that will work for you. Sorry that you have had some real bad side effects from some meds....that has happened to many here and nearly all of them have found something that works after a time.
Lyn Everyone questions their future with RA, but the diagnosis now is nowhere near the same it was 20yrs. ago. There are tons of meds. and options out there. But-you need to be on something that will allow you to do what you want in the future. I started MTX day one of diagnosis. Partly because I was a teenager and just accepted what the dr. said. It was actually the first major appointment my mom didn't come too(I was in college). Anyway, I am now 32 and still work full time. I have had very few problems with the MTX. Most people tolerate it very well. I was told I can still drink-I do occasionally on weekends. Just in moderation. People get scared cause it is classified as a chemo drug-but we take it in nowhere near the cancer dose.
Damage can occur very quickly without some form of treatment. You definitely need an RD you can trust. This is a lifelong illness for most of us. You need someone who will work with you and will explain treatments/meds.
Good luck to you. Let us know what you decide.
No one knows the future but you have a far better chance of doing well in 5 years by treating the disease than you do by not treating it. RA damage is treated ony by surgery. Put on a pair of shoes that are too tightl, a pair of winter gloves, a shirt that is 2 sizes too small and wrap your knees so you can't bend them. Then try to function..that is what living with damage is like.
The meds are scarey to read about but for me the potential of the disease is far scarier
keep a list of questions to ask your doctor so you don't forget them..then make another appt...let him or any future dr know how you like to communicate. Knowledge and communications are keys to dealing successfully with this thing
Hi Pursuit, I understand your relunctance to taking a potent medication. It is a big deal.
If it's any comfort, Methotrexate is one of the oldest RA meds(30-40yrs), tried and true.
I was ready because my lack of a life, being stuck in bed most of the day, was not something I was willing to continue putting myself and husband through anymore. I could care less about the drinking limitation with Methotrexate since I used to have my 1 glass of wine in a restaurant only to join in anyway. I do join in with toasts at weddings and on a rare occasion have a fancy hot Irish Coffee.. doc said it's ok since my liver labwork is good. Always paying attention to anything unusual ie little cough or shortness-of-breath, I went to dr last July for that but it was just what I thought it was; bronchitis following a bad headcold/with fever, like anybody might get. It took longer to recover due to TNF (you'll learn about that), but I did and ended up just fine. I am not afraid of my Methotrexate, I can see no side effect at all, in fact, I am so grateful for the improvements it has given my life. I am far from remission, which is the goal, but I have learned how to adjust my daily life around my RA needs; I am flexible about what I plan on doing in a day, give myself permission to not get them all accomplished, take a long midday nap daily, make myself do my physical therapy exercises, use heat, let people help me, etc. I'm ok with this level of stability because I remember the years when my life was much much harder.
Methotrexate has helped me. Now, I'm kind of scared about the catagory after the DMARDs, called Biologicals, but if I get to a point where I'm getting worse again, I'll be willing to try one, expecially for the TNF inhibitor effect to decrease my awful fatigue. Scared or not, I will try something to improve the lives of me and all those who love me and want my company.
I do suggest that you study up on this disease and the drugs and find yourself a rheumatologist who will discuss it all with you. There are not many of them around anymore so they are busy, but explain it to his/her receptionist that it is important to you to have a doctor who is willing to really talk and listen to you. Good luck to you,
CathyMarie
I know it's a scary sounding medication. Any of us that have taken it felt that way at first. It really brings it all to light how serious it really is.....and it can be a VERY serious illness if not treated properly as early as possible.
I took MTX for 5 or 6 years and also add Humira. As it turned out it was the best treatment I had ever been on and it has been the one medication that made the difference for me. THe majority of the side effects you read about are never going to happen to you. If they do they will happen early on and either subside or you'll be switched off of it early on if your body can not tollerate it. All of the worst things that can happen can easily be avoided with proper blood test on a regular basis.
The one thing I will warn about is drinking. My doctor is amoung the ones that said it was ok as long as my liver tested ok provided it wasn't heavy drinking. I drank several glasses of wine a week (often a couple a day) for the better part of 5 years while on it. In what I think was my 6th year out of no where my liver test started coming back elevated. In the end I was taken off of it to get my liver numbers under control.....which after a couple of months they did return to normal. Luckily I was also taking Humira at the time and after a period of adjustment I've done ok with out the MTX. If you want to continue on MTX long term I'd advise against drinking on a regular basis. That's certainly a down side....and one that would have made me think twice; but for anyone that is honestly having a hard time managing due to this disease MTX is by far the better long term solution verses a few drinks per week.
We don't really know how serious your situation is so it's hard for us to help you decide if you should put all your concerns aside and go with this med. BUt if it were me and I was in my early years knowing all that I know now and knowing all that can and likely will happen without good treatment I'd definately go with the MTX. You can live a great life with RA but with out a good treatment plan in place you'll be lucky to walk beside your children while they ride their bikes down the street let alone play basketball with them.
Don't waste years. You don't have years. The worst damage occurs in the early years and once you have a lot of damage it can not be corrected and that's where the majority of your pain will come from.
Welcome to AI. Glad you're here.
Hi Pursuit- I will just say welcome because it sounds like everyone has covered all the bases. Come often with your questions, concerns, fears- we're all here for you.
Thank you all! I really needed to hear it from people that live it. I haven't had any major damage since the diagnosis, but now that it's hitting my hands and back in a joint in my foot that hasn't been active in 3 or 4 years; I've come to the realization that I need to face the fact and suck it up. When I had my feet MRId they were actually pretty surprised that the erosions were so mild based on the swelling and joint deformation. I'm not sure if that's common on here.
I am going to take the MTX and I did have my mind 90% set when I called my Dr. today. I just wanted to go in and see him one last time, because of the iritis and flare up that I dealt with this week. The fact I specifically said I want to see him or talk to him and not the nurse and then the nurse called and stated my Dr. was running late to a meeting, really angered me.
I'm assuming most of you would suggest that I seek an entirely different clinic at this point and not just a different doctor. Anyway I'm rambling, but again thank you. I'll sleep better tonight.
Hi and welcome to the forum. Everyone else has just about covered what I would have said. The only thing I want to stress to you is DON'T WAIT. I waited 5 years due to fear and denial and have damage to my fingers, wrists, back, knees (new knee) and ankles and feet. Also RA complications of heart and lungs. Waiting is serious and can cause irreversible damage. RA meds have side effects, I know I'm dealing with some of those side effects at the moment but if I had to do it over....I'd still take the RA meds. LindyI'd give the dr. one last shot. It might be the nurse that was the problem.
I have tons of problems with my eyes...iritis, keratitis, scleritis.....
Do you have a good opthomalogist?
You could ask about Arava as well. MTX didn't work for me, but I also had virtually no side effects, didn't know I was on it, really.
I wasn't going to answer your post, because I was just really frustrated with your postponing a decision on appropriate medication based on fear of side effects. Did you read the side effects of Medrol, there is very little that we put in our mouths that won't maybe in somebody cause something. The one thing the other posters have said and I hope you have taken to heart, is that you have to stop the damage from happening before it happens, because once it is done, it's yours, forever. I saw my dr today, she started talking about surgery for my hands. The MTX that I've taken for 20 years and the Remicade I've taken for 3, is keeping the RA from causing future damage, but this is as good as it gets. Because I waited, because I was too scared of the new drugs and the damage was so slow, and I could keep adjusting my life to deal with it, and my dr wasn't pushy, and if I didn't want to try it I didn't have to. If someone could have shown me what my hands would look like in 20 years, I would have rethought that decision. It's ok to be afraid, but you have to think about your future, did you ask your dr that, with your level of disease activity what does he see as your future prospects for damage if you only take medrol? Our oldest DD was 2 when I was dx, I had to start MTX after the second DD was born, when I had an awful flare. This isn't the kind of disease you can ignore. Welcome to the forum. As others have said, doing nothing is often worse than dealing with the side effects. Talk to your doc, seek a second opinion if you need more input, but definitely choose some sort of anti-rheumatic therapy. You can always change your mind later, but you can't reverse damage that might occur while pondering the possibilities.
[QUOTE=LyndeeNZ]i'M one of those people who are happy to take meds! lol
Esp being bipolar, I KNEW meds were the solution.
I would worry a lot more about my bodys rapid deterioration, then worry about a med, that can help , STOP the deterioration!
MTX helped me and I didn't notice anything.
I say go for the meds, the alternatives are much much more frightening to me, being disfigured, unable to get out of bed, etc etc.. The Pain..omg..
Good luck! and just do it!
Thanks again to everyone that gave their advice and input. My doctor did end up calling me and I did end up starting on MTX last week. I have to say though, I don't think it's for me. I enjoy my drinks too much to cut them out. I came to this realization the past few days. If it's a choice between functioning and my drinks, I'll certainly choose functioning. If however I can have both, I'm going to try.
I'm meeting with him this morning and I'm going to discuss giving plaquenil another shot. I only took it for 2-3 months last time, and I remember that I was even against that at the time, so I don't think I gave it a fair shot.
I'm also curious if a higher dose of plaquenil may help along with a slightly higher dose of medrol. I'm also going to look into mega dosing EFAs. I used to be a big supplement junkie, and that sounds intriguing to me. I know it will certainly help with overall joint health anyways. Especially since I'm still lifting weights.
Any input on the idea of reintroducing plaquenil, along with upping my medrol is appreciated. Thank you.
you don't like your wine or brew any more than this Irish lass.... but when it comes down to destruction, inability to function, and pain...... I went with the MTX..... Now, when I have a drink it is special and really savored!!!
maybe you'll never get to where I was when I opted for MTX..
what is medrol? Prednisone? See,THAT scared me more than MTX......
[QUOTE=babs10]you don't like your wine or brew any more than this Irish lass.... but when it comes down to destruction, inability to function, and pain...... I went with the MTX..... Now, when I have a drink it is special and really savored!!!
[/QUOTE]
I've had RA all my life.. Dx'd at age 10... it slumbered with only some irritations for almost 40 years.... I had swelling...I had pain.. but I had always had it and thought nothing of it most times... it limited me.... but I was use to it.
In 2007 I had a flare from hell where I was down and out... couldn't walk faster than a 90 year old...hunched... fearful of my joints giving out.. pain, exhaustion, discomfort, fears, unknown, (was this RA? or something more?) add that to an inability to sleep...
Previously, because i am sero-negative, no one believed I still had RA.... so I suffered in silence w/ aspercreme rubs, ice, resting, and ibuprophen...
flares, in my experience, have accelerated deformaties..... I had a slight issue w/ a finger, knees (surgically built up as a child)_ and hips before flare now four fingers are noticeably disfigured if you look... and my arch has fallen completely.... that's what *I* can see... I will have my yearly x-rays this summer... and we'll see what they show...
so... I guess, when you are "there" you know it....
Maybe ask about a combination of plaquinel & sulfersalizine or something. I'd make it your goal to get off that predisone. That should be used mainly for major flairs you can't seem to get over.....not as a long term maintenance medication. The right DMARD combination should make it possible for you to stop taking that. That has nasty long term side effects that you do not want to deal with and this is a long term illness. 10 or 20 years pass before you know it. While pain and functionality
may be relative, joint destruction is absolute, irreversible, and all too often limits function and increases pain. There is nothing like the dose of reality offered up by x-ray evidence. That, at least in my wholly subjective and fully personal opinion, shines a new, and startling light, on RA--whether typical or atypical.
As others have said, my RD limits corticosteroids as do I by personal preference.
Good luck in finding a therapy suitable for your disease and your lifestyle.
[QUOTE=babs10]
[QUOTE=Lovie]Maybe ask about a combination of plaquinel & sulfersalizine or something. I'd make it your goal to get off that predisone. That should be used mainly for major flairs you can't seem to get over.....not as a long term maintenance medication. The right DMARD combination should make it possible for you to stop taking that. That has nasty long term side effects that you do not want to deal with and this is a long term illness. 10 or 20 years pass before you know it. [/QUOTE]
Unfortunately sulfa is out of the question. I believe it was my white blood cell count that dropped too low from it.
I agree and he is pushing for me to be careful with the prednisone.
Here's to hoping that your xrays aren't any worse and you can test out this for a while. Good Luck!you could look into the antibiotic therapy if you are not comfortable with mtx. google the road back foundation.
I can see how concerned you are at the possibility of taking mtx and agree with Isabelle, have a look at the ‘Road Back’ website. It includes a lot of information and support & it's particular focus is antibiotic therapy as a possible treatment. There is no doubt that a variety of treatment options are currently available and that includes AP therapy.
http://www.rbfbb.org/
I hope your exrays are good. We are all really afraid to take meds. I guess there just isn't any choice for us really. The pain and loss of freedom to function just gets the better of us. Which toe do you always have RA in? My big toe has narrowing of the joint space it os very painful. the toe next to it is getting in the act. My feet hurt every day. I hope things work out for you.A good topic and some good info....bump
Prickcushion, stop acting like you care!
[QUOTE=milly]Which toe do you always have RA in?[/QUOTE]
Thank you for the well wishes. I have RA in my left big toe. I actually fought with my doctor for about 6 months over the thought of it being gout. At that time it was my only current symptom and it stayed like that for well over 2 years. My joints on the sides of my feet had already been wrecked, but I wasn't sure if it was something other than RA.
I had problems in that big toe joint on both feet. I think they refer to it as the ball of your foot. Where the joint connects on the underneith part of your foot. My GP said it was bunions and that it would require surgery on both feet! When I finally got in to see an RD she laughed at that and said it was caused by the RA and once I got things under control that would ease up too. She was right. I have had very little problem with it since I was dx'ed with RA and started treatment. Well I just got a call from my Dr. (way to go doc for calling! I really appreciated it!) and the latest xrays showed pretty severe joint seperation and some erosions.
He recommend I get on the MTX, but knowing that I am against it, he is considering moving to the biologicals first. So it looks like Enbrel, Humira, and Simponi are going to be possibilities. Looks like I have a lot of reading to do.
Pursuit, information is your best weapon! Way to go for taking a proactive role in your fight against this disease! Make no mistake, this disease has declared war on you, so polish you arsenal! There are so many good links to information here on AI, it is a good place to start.
Good luck and keep posting!
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