I saw my doctor today and had blood work done. I told him about the increased bruising and we talked about how my body is handling the change to MTX injections. I told him I was still having pain in several joints and then mentioned maybe I’m never going to be pain free…this is the new me and this is a possibility. He reminded me the MTX could take a long time to work. I’m wondering if that means pain free or just flare free? I’ve been thinking a lot lately,I’ve had a lot of time to think and really my body has blessed me for many years and I’m happy I’ve been able to accomplish what I have however I have so much more I want to do! Reality sucks…this disease sucks!
MTX is not the world’s best single treatment of PsA. The TNF inhibitors have been shown to be more effective, but typically have a short lifespan
Greetings, when you speak of MTX do you mean methotrexate? I spent over a year on it. I had to get off of it because of the side effects. And I believe it stopped working for me. I have taken Cymbalta with bad side effects and had to stop. I live in pain every single day. I wake a about 4 am and tears roll down the sides of my face into my ears because of the
pain and it's effects. I eat a cracker or something so I can take my pain meds and it takes about 1.5 hours for them to kick in. I try to get out and around with a knee brace and cane but the price I pay in pain is too high and I spend days in excruciating pain. I recently attended a family dinner at a local restaurant with my family and when we finished the cars
were parked a block away. I am ashamed to say my family left me behind to cross a high traffic street alone and hobbling. That told me just how they consider me. And now, the husband retired for a few months and has returned to a job that takes him to another city everyday and I am left alone on the top floor of a townhome with 5 flights of stairs. I stay in my room and seldom go down if I don't have to as I am afraid of falling and also the added pain of stairs. I am used to being alone most of the time but am concerned that if I fell no one would know. Hurting.
Hi Treasure,
Yes, I’m talking Methotrexate. 3 months now, two Months on pills and currently injections of 25mg. I’m so sorry to hear that your family is not being supportive :-(. I’m very lucky to have a supportive husband,family and friends. Is it possible to have a family heart to heart and explain the challenges(I’m sure they are obvious) and look at solutions? I’m in the beginning stages of PSA, so I’m able to function other then fatigue,increased daily aches and pains in several joints. As long as I’m not flaring I can manage and my goal is to get back to work and make it through a shift with out having to go off.
My PSA has been pretty much in remission for several years until the past year when the flares started to happen more often, hence the start of MTX. I’ve already started planning and thinking of our future. Both my sisters work with people with disabilities so I’m aware in our area there is help if ever needed. Is there any support groups or help in your area for people with barriers?
Hi Mataribot, I’m realizing that MTX may not be the best single treatment and I’m thankful for the feedback on this site as I’ve learned so much by reading posts and feedback here! I understand biologics tend to be what works however I have to go through the motions of trying everything. i guess this could be a long road and patients is a virtue… The slowing down part is tough!
Since starting the MTX my flares have settled down but the overall joint pain has increased. The past few days it’s been knees, hands,wrists and shoulders. I’m not sure I’ve had a day pain free in months now so I guess the PSA is here to stay. I know it can always get worse and I’m grateful for every day I can move.
mataribot said:
MTX is not the world’s best single treatment of PsA. The TNF inhibitors have been shown to be more effective, but typically have a short lifespan
I'm not trying to be contrarian here but the most effective treatment is NOT biologicals.
They only work about half the time when they work. It is rare that they have a lot of effect on anything except axial pain. It is now becoming pretty standard to use DMARD's along side them MTX of course is the most common. An lets be honest one costs $300.00 a year and is effective 80% of the time. The other over $30,000.00 a year. There are a few very specific types of pain MTX is totally ineffective against as are the Biologicals. Unfortunately that happens to be a common type pain with PsA (enthesitis.) The NSAIDS however are partially effective while the only thing that is totally effective is PT.
We also know a few other things:
- people who are not involved in specific low impact highly repetitive exercise have more pain
- people who take narcotic pain medications have more frequent and more severe pain
- people who discuss and read extensivley about side effects of drugs (and worry about them) have side effects at rates 10 times more the regular population (most people have only temporary effects from MTX and for example those who exercise ingest LOTS of water take folic acid daily maintaining more normal body chemistry have fewer SE yet)
- NOBODY over age 40 is pain free.
- Women have more pain than men, tolerate it less well and are more prone to idiopathic effects. (They also are better able to overcome it than men)
- 90% of people with PsA are never disabled and get good effect from treatment.
- PsA is in large part Mind over matter. The most frequent cause of flares and pain is hormonal. Stress, excess weight and depression are the most frequent causes of these imbalances. Exercise, weight loss,medication (tricyclics primarily,) DIET, and cognitive training are highly effective at eliminating these imbalances (Narcos aggravate them)
Nothing cures the disease but you can ACTIVELY fight it (once you know what the disease) is and have improved results. Fight it hard take on every front, take your meds and keep moving and you will be amazed what can happen.
I'm having pain all the time lately. The last two days were the best I've had in months. Now my had is getting worse again.
This disease does suck. It makes me wonder if the docs really get how bad the pain can be or if they really treat PsA enough to really help.
I know how you feel
I'd like to know where this " women tolerate pain less" comes from. I disagree. When did gender come to play in this.
Men I know complain more about pain than any women I know.
Hi tntlamb, thanks for the info. I’ve lead a very active life up until a few months ago I was training for my 3rd half marathon, lifting light weights 3-4 times a week, hiking and various other activities along with working on a ship( climbing minimum 15+flights of stairs a day,walking 8k,along with Line handling and packing ship stores) I started having flares…maybe two a year in my late 20’s early 30’s. Last Aug the flares increased and I continued to get worse. Currently every time I walk, lift,swim I suffer with pain after even when I’m not active so I’m trying to find a happy medium. My doctors have told me I have to slow down and actually I have no choice but to listen. I’m currently off work because I was coming home all the time due to flares or illness from the PSA and or the side effects of the MTX. I understand what you are saying however I’m also confused because if exercise and diet is key…why the heck am I like this? Anyway I am absolutely frustrated, not taking any pain meds…would love to be on the Celebrex daily but I’m hanging on and waiting to see if the MTX works alone… Im aware there is no cure…as there is for no arthritis! I come from a family with a long history of several different kinds of arthritis and have watched my mom and other family members cripple from the disease! It sucks…really it does and from what I’m reading, seeing and learning everyone is unique! What works for one may not work for another…but it’s worth trying every thing right! I’m now 41 and I’m not sure I believe everyone over 40 has. Pain. Because I know people who are in their 40’s with out pain. Again thanks 
tntlamb said:
I’m not trying to be contrarian here but the most effective treatment is NOT biologicals.
They only work about half the time when they work. It is rare that they have a lot of effect on anything except axial pain. It is now becoming pretty standard to use DMARD’s along side them MTX of course is the most common. An lets be honest one costs $300.00 a year and is effective 80% of the time. The other over $30,000.00 a year. There are a few very specific types of pain MTX is totally ineffective against as are the Biologicals. Unfortunately that happens to be a common type pain with PsA (enthesitis.) The NSAIDS however are partially effective while the only thing that is totally effective is PT.
We also know a few other things:
- people who are not involved in specific low impact highly repetitive exercise have more pain
- people who take narcotic pain medications have more frequent and more severe pain
- people who discuss and read extensivley about side effects of drugs (and worry about them) have side effects at rates 10 times more the regular population (most people have only temporary effects from MTX and for example those who exercise ingest LOTS of water take folic acid daily maintaining more normal body chemistry have fewer SE yet)
- NOBODY over age 40 is pain free.
- Women have more pain than men, tolerate it less well and are more prone to idiopathic effects. (They also are better able to overcome it than men)
- 90% of people with PsA are never disabled and get good effect from treatment.
- PsA is in large part Mind over matter. The most frequent cause of flares and pain is hormonal. Stress, excess weight and depression are the most frequent causes of these imbalances. Exercise, weight loss,medication (tricyclics primarily,) DIET, and cognitive training are highly effective at eliminating these imbalances (Narcos aggravate them)
Nothing cures the disease but you can ACTIVELY fight it (once you know what the disease) is and have improved results. Fight it hard take on every front, take your meds and keep moving and you will be amazed what can happen.
Thanks Dini…I hope you can find some relief. I had a few good days energy wise however both knees,wrists,hands,shoulders and hips are hurting today…I hope to get out hiking this weekend but I’m nervous about going too! I’m finding every time I wear shoes my feet start to hurt, been living in flip flops lately.
Dini said:
I’m having pain all the time lately. The last two days were the best I’ve had in months. Now my had is getting worse again.
This disease does suck. It makes me wonder if the docs really get how bad the pain can be or if they really treat PsA enough to really help.
I know how you feel
Me too Dini…I truly have a hard time believing that too! I also disagree with that comment!
Dini said:
I’d like to know where this " women tolerate pain less" comes from. I disagree. When did gender come to play in this.
Men I know complain more about pain than any women I know.
Stanford University in the most recent study (11,000 subjects):
http://healthland.time.com/2012/01/23/men-vs-women-on-pain-who-hurt...
You might follow these studies (there are about a dozen): http://www.iasp-pain.org/Content/NavigationMenu/GlobalYearAgainstPa...
Then you might do the follow up on this one:
http://healthland.time.com/2012/01/23/men-vs-women-on-pain-who-hurt...
Some 20 years ago a liberal (BTW I'm considered such) group forced a change in clinical studies that included gender as selection criteria. They had to (and still do) take volunteers in the order they applied if the met the clinical criteria, Gender can not be used You can question when gender came into this all you want, but it is about time that it does. Women are suffering unnecessarily because their needs can't be considered separately. medication should be based on more than body mass. ESPECIALLY when chronic pain is involved.
BTW men are Dx'd far more often with PsA than women. I have often wondered why the women outnumber men almost 10:1 on most boards???
Dini said:
I'd like to know where this " women tolerate pain less" comes from. I disagree. When did gender come to play in this.
Men I know complain more about pain than any women I know.
Where did you get your numbers? The current research tells a completely different story.
In the word of dermatology, Biologics are slowly becoming the front line of systemic treatments. They simply have a better safety profile then old school drugs like Cyclosporin and MTX. My first treatment was Enbrel.
Also, I never suggested not giving a drug A try. If one drug is not working for you, try another.
TaraLyn there is is difference between "exercise" and therapy. I understand what you are saying. I was runner, biker etc too at one time. When i talk about movement its more what you would get from a "good trainer" the old saw of "I'd exercise but it hurts too much" typifies it. No matter what is going on "flare wise" or "pain wise" you can move. Its can be as simple as rolling your foot back and forth on a pop bottle or making a fist and straightening your fingers multiple time. Its probably harder for people who were really active at one point to understand the repetitive motion and stretching thing. You really want to be concentrating on ROM stuff. This DVD is helpful.
Mataribot, I'm not sure what studies you are referring to. DMARDS are effective a third more often than are biologicals. There is not that I am aware of a single study out there that shows any biologic to be equally effective as a monotherapy to a combination with a DMARD (MTX is the standard used in studies)
The statement around here of "get to a biological, they work better" simply is not true. A person in pain simply has a better chance of getting relief more quickly (even if partial) with first a NSAID and then a DMARD) perhaps its medicine by the numbers but pain relief is the first goal, then disease management.
It is unnecessarily discouraging (and flat wrong) to insinuate that anything less than a biological drug is less than appropriate treatment. Hindsite of how great a biological is when it works is great, not so great when you are on your third and still isn't working. It discouraging enough when a drug regime that works 70% - 80% of the time doesn't
You might also note the most COMMON complaint around here is hands and feet (besides general yuck and fatigue) Even the Biological manufacturers admit their stuff is pretty ineffective for peripheral systems.
My apologies to the OP, I did not mean to derail this thread. It was simply my opinion that there are other (better in my opinion) options than MTX.
Here is one study:
http://m.rheumatology.oxfordjournals.org/content/early/2012/02/17/rheumatology.kes001.full
There are others out there and more out.
Right Tntlamb I understand the difference between therapy and exercise. I will be seeing a physical therapist next week. I commented on my past active life because of the statement that people who do low impact repetitive exercise are listed in the findings you posted as not being impacted by PSA…I simply feel that’s not the case. I do believe that moving and keeping active helps. I’m sorry but when I’m having a bad flare I’m lucky if I can sleep in my own bed and getting to the bathroom takes triple time…it all depends on the severity of the flare. Just my opinion…I also am open to trying different things because as we all know there is no cure, medication is a wonderful thing but food can also heal so that too is worth a try along with being active and so on…thanks
tntlamb said:
TaraLyn there is is difference between “exercise” and therapy. I understand what you are saying. I was runner, biker etc too at one time. When i talk about movement its more what you would get from a “good trainer” the old saw of “I’d exercise but it hurts too much” typifies it. No matter what is going on “flare wise” or “pain wise” you can move. Its can be as simple as rolling your foot back and forth on a pop bottle or making a fist and straightening your fingers multiple time. Its probably harder for people who were really active at one point to understand the repetitive motion and stretching thing. You really want to be concentrating on ROM stuff. This DVD is helpful.
Mataribot, I’m not sure what studies you are referring to. DMARDS are effective a third more often than are biologicals. There is not that I am aware of a single study out there that shows any biologic to be equally effective as a monotherapy to a combination with a DMARD (MTX is the standard used in studies)
The statement around here of “get to a biological, they work better” simply is not true. A person in pain simply has a better chance of getting relief more quickly (even if partial) with first a NSAID and then a DMARD) perhaps its medicine by the numbers but pain relief is the first goal, then disease management.
It is unnecessarily discouraging (and flat wrong) to insinuate that anything less than a biological drug is less than appropriate treatment. Hindsite of how great a biological is when it works is great, not so great when you are on your third and still isn’t working. It discouraging enough when a drug regime that works 70% - 80% of the time doesn’t
You might also note the most COMMON complaint around here is hands and feet (besides general yuck and fatigue) Even the Biological manufacturers admit their stuff is pretty ineffective for peripheral systems.
No worries! All the feedback, debate is good and I appreciate looking at the studies! Thanks for sharing
mataribot said:
My apologies to the OP, I did not mean to derail this thread. It was simply my opinion that there are other (better in my opinion) options than MTX.
Here is one study:
http://m.rheumatology.oxfordjournals.org/content/early/2012/02/17/r…
There are others out there and more out.
Most of what you've said is contrary to 3 decades with this disease, as well as all my research.
You have a very loud voice on this board, and I think it's terrible how you use that voice to push your ideas.
tntlamb said:
I'm not trying to be contrarian here but the most effective treatment is NOT biologicals.
They only work about half the time when they work. It is rare that they have a lot of effect on anything except axial pain. It is now becoming pretty standard to use DMARD's along side them MTX of course is the most common. An lets be honest one costs $300.00 a year and is effective 80% of the time. The other over $30,000.00 a year. There are a few very specific types of pain MTX is totally ineffective against as are the Biologicals. Unfortunately that happens to be a common type pain with PsA (enthesitis.) The NSAIDS however are partially effective while the only thing that is totally effective is PT.
We also know a few other things:
- people who are not involved in specific low impact highly repetitive exercise have more pain
- people who take narcotic pain medications have more frequent and more severe pain
- people who discuss and read extensivley about side effects of drugs (and worry about them) have side effects at rates 10 times more the regular population (most people have only temporary effects from MTX and for example those who exercise ingest LOTS of water take folic acid daily maintaining more normal body chemistry have fewer SE yet)
- NOBODY over age 40 is pain free.
- Women have more pain than men, tolerate it less well and are more prone to idiopathic effects. (They also are better able to overcome it than men)
- 90% of people with PsA are never disabled and get good effect from treatment.
- PsA is in large part Mind over matter. The most frequent cause of flares and pain is hormonal. Stress, excess weight and depression are the most frequent causes of these imbalances. Exercise, weight loss,medication (tricyclics primarily,) DIET, and cognitive training are highly effective at eliminating these imbalances (Narcos aggravate them)
Nothing cures the disease but you can ACTIVELY fight it (once you know what the disease) is and have improved results. Fight it hard take on every front, take your meds and keep moving and you will be amazed what can happen.
Two problems with that study. First they were evaluating the rffect of MTX on synovitis. secondly they were using ESR and CRP levels to determine its effectveness.. Do yoy see ANY problems there? How many of us have ever had abnormsl ESR or CRPs? For that matter how many of us have synovitis as our big problem? Of course there ar options to MTX. Bit there are very good reasons why other therapies are used first.
mataribot said:
My apologies to the OP, I did not mean to derail this thread. It was simply my opinion that there are other (better in my opinion) options than MTX.
Here is one study:
http://m.rheumatology.oxfordjournals.org/content/early/2012/02/17/r...
There are others out there and more out.
You got it Tara. It ALL works together. I only mentioned the difference between the low impact stuff and "working out" because a lot of folks figure it takes some massive exercise regime to make a difference when it doesn't. Just flexing your toes when you have time helps the foot pain immensly.
In terms of drugs there are a couple of things to remember (I design medical studies and review them for living) The bulk of the drugs we use are considered effective if they reduce symptoms by 25% (the biologicals are prime) We cna not distinguish between men and women in drug trials despite massive volumes of data showing distinctly different pain mechanisms.
Although I personally believe the sooner you move to a biological the better, keep in mid there are only 4 or 5 approved for PsA. Most people burn through a drug every few years. Its possible to run out. Afterall the have only been around a dozen or fewer years. there are several on these boards that have done just that.
You slow start isn't necessarily a bad thing. These studies (which I am somewhat intimate with) are what is defining todays treatment:
http://www.ncbi.nlm.nih.gov/pubmed/21267733
http://www.ncbi.nlm.nih.gov/pubmed/21044435
Its all about combination therapies now. Humira did a massive post market study and is recommending the addition of MTX. Remicade includes it in their prescribing information (to prevent anitbody formation) etc etc So you are not wasting time or getting less tha treatment than you should. It takes a while to learn how to take MTX. I would NOT hesitate to push for the addition of a Bio though.
TaraLynn said:
Right Tntlamb I understand the difference between therapy and exercise. I will be seeing a physical therapist next week. I commented on my past active life because of the statement that people who do low impact repetitive exercise are listed in the findings you posted as not being impacted by PSA...I simply feel that's not the case. I do believe that moving and keeping active helps. I'm sorry but when I'm having a bad flare I'm lucky if I can sleep in my own bed and getting to the bathroom takes triple time....it all depends on the severity of the flare. Just my opinion...I also am open to trying different things because as we all know there is no cure, medication is a wonderful thing but food can also heal so that too is worth a try along with being active and so on.....thanks :-)
tntlamb said:TaraLyn there is is difference between "exercise" and therapy. I understand what you are saying. I was runner, biker etc too at one time. When i talk about movement its more what you would get from a "good trainer" the old saw of "I'd exercise but it hurts too much" typifies it. No matter what is going on "flare wise" or "pain wise" you can move. Its can be as simple as rolling your foot back and forth on a pop bottle or making a fist and straightening your fingers multiple time. Its probably harder for people who were really active at one point to understand the repetitive motion and stretching thing. You really want to be concentrating on ROM stuff. This DVD is helpful.
Mataribot, I'm not sure what studies you are referring to. DMARDS are effective a third more often than are biologicals. There is not that I am aware of a single study out there that shows any biologic to be equally effective as a monotherapy to a combination with a DMARD (MTX is the standard used in studies)
The statement around here of "get to a biological, they work better" simply is not true. A person in pain simply has a better chance of getting relief more quickly (even if partial) with first a NSAID and then a DMARD) perhaps its medicine by the numbers but pain relief is the first goal, then disease management.
It is unnecessarily discouraging (and flat wrong) to insinuate that anything less than a biological drug is less than appropriate treatment. Hindsite of how great a biological is when it works is great, not so great when you are on your third and still isn't working. It discouraging enough when a drug regime that works 70% - 80% of the time doesn't
You might also note the most COMMON complaint around here is hands and feet (besides general yuck and fatigue) Even the Biological manufacturers admit their stuff is pretty ineffective for peripheral systems.