I'm taking MTX once a week, but 4 pills at a time. I wonder if my doctor will up the amount of times per week that I take it before moving me to Enbrel. Have any of you heard that insurance companies like for doctors to try MTX first before putting patients on Enbrel or Humira or any of the Biologics? This is all new to me and I was just diagnosed "officially" last Friday. Meanwhile, my scalp is still inflammed and I don't see any difference and I still have knee pain even with the prednisone, although it's better and I can walk which is more than I can say for last Thursday evening and Friday morning.
Tootall 62 said:
Well, I have been on MTX for almost 2 years, and I still feel quite crappy, but was told I would feel even worse without it. My psoriasis is still problematic and I still have alot of pain and stiffness. I just take it one day at a time.
BC/BS have lots of different policies. Depending on which you have you may pay a little or a big percentage of different "tier" drugs. I have a very good BC/BS policy but it must be a less common one as each of my doctor's offices has commented on what it allows. Most insurance, in the US have mtx or the sulfa drug on lower tiers so they cost the least. The DMARDs have been around forever so the generics are available and ins would rather pay for us to use a medication like mtx that costs $5.00 a dose than a biologic which is newer and costs $1500.00 per dose. But each insurance is different. Call yours if you want to know about it. Their number is on the back of your card.
Have u rec'd an MRI for your knee? Can you? They are more accurate, detailed for people in the early stages. I am in early stages of PsA and was diagnosed through an MRI. I think xrays show more for ppl who are more advanced and have damage perhaps. that's what Ive heard.
tb said:
I just saw my regular Dr. and she is booking an MRI for my knee. I want to switch Rhuemy to, as I feel he doesn't really answer my concerns. My knee pain is very painful, I need to start something.
yes my rheumy wants me to switch to enbrel frm mtx (I was on planquel for a very short time before mtx). He wants me to switch because my swelling never ceased on mtx. While I did experience some relief in stiffness esp in the morn, it wasnt great. Still there. Still uncomfortable esp at night. the mobility issues in my toes continued. While I was having less painful episodes, i still continued to have painful episodes while on mtx too. Instead of increasing dose of mtx my dr told me to switch to enbrel. The starting dose and he's giving me enbrel on its own. Another reason is my rheumy said mtx isnt safe for women in child bearing yrs and he never felt comfortable with me on it. Even tho i didnt want to have a baby before. Wasnt even thinking of it. But I must admit it is nice to be able to keep my options open again =) ...Anyways I've started the process to get onto enbrel. Currently the paperwork has been done and has been faxed to my insurance company. Today actually enliven services and I are calling them to see how far along they are. You just reminded me, I have to call enliven services today. Thanks lol Im sorry your knee is so painful , it must be so difficult to walk and yesterday was thinking how painful and difficult it must be to do just every day things if u have it in your fingers esp if it is very painful. for me, it is definitely in the toes of one foot. That's for sure. But luckily you can still walk with stiff and swollen toes. My whole foot is swollen and i get pain in my toe area but it doesnt last long. I get shooting pains, quick flashes of pain and they are over with. Heel, arch, sole also get painful and feel just the same....quick flashes of pain..i never expect them..they come on unexpected. Other than the feet, I do experience pain in my hip and lower back but again it is the same type of pain...very painful when it hits and cripples me but doesnt last long and Im able to continue whatever I am doing without much inconvenience after it has passed. It's the damage that PsA can do that my Rheumy is concerned about. Now my Rheumy thinks my pain in my hip is from the inflammation in the foot. That is what is thought at this time. Ive only got the MRI on one of my feet. Well your dr is on the right track getting you an MRI on your knee. . I hope you can switch Rheumys easily. It's important to have a good specialist treating you. This is a life long condition, that could worsen. Im comfortable with my Rheumy for the most part. Which is a good think because I live in Canada and we wait a long time to be referred to a rheumy frm family drs here. It's not so easy to change to a new specialist either here!
Ya, I'm in Canada as well, so I know what you mean.
It started in my toes and I've been able to manage for the last couple of years, no real problem. It's just recently moved to my knees and the arch of my foot, which has made it very hard to move around without pain. My job is physical, I'm on my feet constantly, I've been taking Advil to get through the days.
So, Mtx, didn't really work that great for you? It didn't bring down the swelling? Now that you are off it, did it make your condition worse? This is my concern, starting it, possibly causing damage to my insides and not getting any benefit from it.
tb That's scary. How it started off in your toes and foot and then went to your knee in just a couple yrs. What were you taking when it started and before mxt. Ive only been off it 3 weeks, and well so far all of my symptoms havent returned. but like I said i had symptoms that continued even after going on mtx. No, it didnt bring down the swelling.
Well I found out I got full coverage for enbrel. And I pick up the prescription tomorrow. Im going to get a nurse frm enliven services to come to my house to show me how to use the auto injector. I think I'll be more confident if i take advantage of this service. Well I was iffy and scared about going on enbrel...because of the warnings of side effects. I also questioned my dr's judgement whether i really needed it. After being reassured, I am not so worried about these things anymore. But I admit now Im thinking about how I'll have to inject this medication and it wont be so easy or comfortable as swallowing pills. So now I have something else to worry about. But I know I'll get over it.
Re: the arthritis confusion. I wish PsA had a different name, because we're talking about two different things. There is osteoarthritis that is "wear and tear" arthritis. It is caused by constant use of our joints. Almost everyone's joints start deteriorating slightly - very slightly - in their 20s and that continues inevitably until we die. Okay? So that's the arthritis that is most common and that most people get as the get older.
PsA is a totally different disease. It is not caused by "wear and tear" or use. It is an autoimmune disease - auto as in "self" - in which the immune system becomes confused and starts telling cells in our immune systems to attack our own connective tissue: it can attack tendons, ligaments, eyes, cartilage that makes up part of our rib cages, and so on. Joint pain is often connected with it because when our tendons and ligaments become inflamed, they can pull our joints out of normal position, or become inflamed at the points where they attach to the joints.
RA - rheumatoid arthritis - is another autoimmune disease - our bodies get confused and attack their own tissue. The joints affected are usually fingers, feet, wrists - they feel swollen, painful, warm, red, inflamed. If a joint on one side of your body is inflamed - for example, a joint in your index finger, usually the same joint on the other side of your body will be inflamed, too. Often a person with RA feels stiff for over an hour when they get up in the morning. There is also a helpful blood test to help diagnose RA and PsA.
An MRI will show so much more than an x-ray if PsA is your problem. Good luck!
beecreek said:
please clarify. You mentioned that your xray didnt show signs of arthritis in your knees. And you are thinking it's PsA but PsA is arthritis? Or am I missing something? Please let me know. Im still learning about PsA, My dr has recently decided to diagnose me with it after almost 1 yr thinking it was RA. So Im new to the condition and what's it about. I also dont think any of these drugs are good in the long term. It's a risk. I was so scared of starting Enbrel for this reason but I am more relaxed about it now. It was the same when I used to take mtx. Had to face it. I admitted to myself I have a disease and I need to control it or I can suffer frm it in the present, suffer worse in the yrs to come and get damage and become disabled in the future... I am 34 and I guess I am willing to take the risks now. Everyone reacts to these medications differently too remember. They are all strong medications with SE but if you need them what do you do!!! Not everyone improves on holistic treatment,diet, & exercise alone.Or through prayer lol. When my dr told me I should switch to enbrel I was serious about finding out alternative treatments....just so i could avoid it..but after i did my own research they are all bad. Sorry to say. On mtx I got no SE; serious or minor...but perhaps if i was on it longer and in the long term maybe I could have developed a serious SE linked to it..I dont know..it's hard to say... not everyone does. It's a risk.
tb said:
I've been avoiding MXT for two years now. This past fall my knees started hurting, they still do, it's ahrd to move around without pain. My Rhumy had me do X-rays, as my toes are all swollen and slightly curved and my right pinky finger is all swollen and sore.
Anyway the X-ray showed no sign in my knees of arthritis, I've been icing them and going for massages, but nothing is relieving the pain, so i'm thinking it is PsA in my knees. The right knee is swollen, it did go down, but has come back, I think do to going to a massage person who may have aggrivated it. My left arch in my foot is painful as well. It is hard to sit for long periods.
I've been prescribed MXT and was suppose to start taking it, but I am afraid of the side effects. My wife's friend's mother was on Biologics and now has developed leukaemia in the blood, she is searching for a bone marrow donor. So hearing that scares me.
I've started ayurvedic supplements, there is a whole chapter in this book about Rhuemitoid Arthritis, which I'm trying to follow, as it is similar to PsA.
has anyone tried an alternative to MXT, My fear is starting it and it doesn't help but I've messed up my insides.
I was diagnosed with PsA from a Rheumatologist and it was my MRI results that confirmed the diagnosis. I dont have osteoarthritis. And I know the difference.
ok no problem Gardener...thats ok. i thought something was off. Because i know my own situation, and if anything i thought maybe I wasnt explaining myself properly in my msg exchange with tb and created a misunderstanding. Which could happen knowin me lol...I also get confused too.
And as for tb she's going to have an MRI to confirm whether PsA in her knees too.
Thanks Beecreek, just for the record, I'm male, but PsA doesn't care, male, female, it attacks us all.
As for your question, I haven't taken anything yet for my PsA, the side effects scare me. My rheumy has filled a prescription for mtx out for me, but I haven't taken it yet. I'm first concerned with the side effects, and you have said it didn't really help you by stopping any progression of this decease, I guess that is my biggest fear, it not helping. Has anyone on this site had any benefits from Mtx?
beecreek said:
ok no problem Gardener...thats ok. i thought something was off. Because i know my own situation, and if anything i thought maybe I wasnt explaining myself properly in my msg exchange with tb and created a misunderstanding. Which could happen knowin me lol...I also get confused too.
And as for tb she's going to have an MRI to confirm whether PsA in her knees too.
It has helped me. Not a big difference but it is noticeable, esp when I stop it. I have been on mtx in order to help the biologics work better and longer. I don't do prendisone any more. It has significant s/e. But I do stay on mtx between biologics. I have been on Humiria, Simponi and Enbrel X2 each for about a year. Unfortunately I only have gotten about a 60-70 % reduction in symptoms but they all have become ineffective in about a year. I have had the 3 loading doses of Remicade and after the third loading dose on 1/10/13 I had a symptom free (!) three weeks. I am not scheduled for another infusion until 3/7/13 but I have called my Rheumy requesting that it be moved up. I am very excited. I think of the mtx as my right now med and my biologic as my long term med. It is more complicated than that but mtx is a very effective DMARD so it helps reduce inflammation but does not prevent joint damage. It does inhibit immune systems so you are less likely to render the biologic ineffective. Our over active immune systems can prevent the biologics from working for long periods. That is what I believe happens with me so they do not work in about a year. Good luck on getting a recipe that works for you. PS In honor of full disclosure- I am female :-)
I cant read all the comments from my phone but I am starting mtx today also. I was wondering how long does it take for you to see a difference. I am on Humira weekly and medrol. I still have inflammation in my ankles and new patches of psoraisis coming up. Hoping for relief soon. Although, I have had improvement but its not as much as I hope for… I am able to work about 3 days a week at the moment. I hope once the mtx kicks in I can have a full week.
It was 3 months for me to get full effect. I am not sure when I started to see improvement thouhg. It was a few years ago and I have forgotten! Good luck!
I'm feeling good but not great.. Hope this makes me feel great. Thanks again.
michael in vermont said:
It was 3 months for me to get full effect. I am not sure when I started to see improvement thouhg. It was a few years ago and I have forgotten! Good luck!
I'm feeling a little depressed, my work is very physical and I dread the thought of going to work. It also sounds like mtx and the other drugs give some relief but not much...I'm feeling confused as to whether it is worth it? I'm in extreme pain in my one knee, if that would calm down, I would be able to function. Has anyone found that any of the drugs calm down the chronic pain? I would love to feel some relief from it so I can't not have to think about how I'm going to get from one end of the room to the other.
I have found the only thing that really helps with pain is getting the disease under better control. I have had multiple cortisone injections and use heat, ices NSAID, Tylenol, Vicodin, splints, etc all to help with the pain until I find the right drug combination which slows the disease enough to help the pain and prevent further joint destruction. I found the more active I was the more it helped pain and symptoms. But that was 30 years ago I couldn't do that now. Towards the end of my career I was a desk jockey only and eventually even that was too much. I retired earlier this year and went out on disability. I am 55. Good luck with your search for the correct meds for you I am sending prayers and hugs your way.
tb, i started out on just a steroid medrol, experienced some relief, not too much, i wasnt able to get of bed. i started taking humira, biweekly, a little more relief t not enough to get me active again. Started weekly Humira again some more relief. started mtx today, i dont know how i will respond but it does take time. when looking back 4 months and now, i am not in as much pain and im able do more each day. im not rely patient so i understand how frustrating it can be. hang in there. my job isnt physical but its still a struggle.
tb sai
I'm feeling a little depressed, my work is very physical and I dread the thought of going to work. It also sounds like mtx and the other drugs give some relief but not much...I'm feeling confused as to whether it is worth it? I'm in extreme pain in my one knee, if that would calm down, I would be able to function. Has anyone found that any of the drugs calm down the chronic pain? I would love to feel some relief from it so I can't not have to think about how I'm going to get from one end of the room to the other.
I don’t have any experience with methotrexate, so I can’t advise you on that. Some Insurance providers in the States require that Patients try MTX before approving a biologic medication. Does the health care in Canada require something similar?
I was on Humira alone for almost 2 years and only had one flare that entire time. It was WONDERFUL. I thought the benefits far outweighed any risks. I had no side effects whatsoever with Humira, and other than the one flare, i had NO pain. It did stop working for me and I have recently started Remicade. Everyone that I have spoken to who takes remicade has had really good results with little to no side effects.
There are people on this message board who have had great results with MTX. I do notice that more people have side effects with it, but those that do generally discontinue it and move on to one of the biologics pretty quickly.
Which is more frightening: living as you are now, unable to “get from on end of the room to the other” or trying a medication that could help you get your life back?
tb said:
I’m feeling a little depressed, my work is very physical and I dread the thought of going to work. It also sounds like mtx and the other drugs give some relief but not much…I’m feeling confused as to whether it is worth it? I’m in extreme pain in my one knee, if that would calm down, I would be able to function. Has anyone found that any of the drugs calm down the chronic pain? I would love to feel some relief from it so I can’t not have to think about how I’m going to get from one end of the room to the other.
Yes, I've put it off for at least two years and was able to function normally. Now the pain is just too great. I ahd some massage therapy done on my knee as I thought it wasn't PsA, I think that may have made it swell worse, as It had gone down previous.
Yes, it's the same here in Canada, you have to start on mtx first before they will move you to something else.
Question about Humria. My wife says her friends mother was on it and now has luekimia of the blood and is now looking for a bone marrow donor. I don't know all the facts, but does that sound like a possibility?