The new me

[TaraLynn]

Thank you tntlamb :-). I appreciate the information. I must say it’s overwhelming and I’m on a fast learning curve here. I keep getting pushed by loved ones to also seek natural alternatives. Have you come across any research regarding natural alternatives? I’ve talked to a few doctors and most are saying it’s a waste of money…it seems that the pharmaceutical companies run everything including cost of meds. I’m lucky as I have coverage along with my husband so dual coverage is a blessing. I don’t mean to rock the boat but knowing there is no cure…anything is possible and worth a try right? Or maybe not??



tntlamb said:

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.

[tntlamb]

While there is not a lot of repeatable verifiable research on "diet" and no explanation of the mechanism there have been a number of studies like these:

http://www.ncbi.nlm.nih.gov/pubmed/8205407

http://rheumatology.oxfordjournals.org/content/33/6/569.short

The Kjeldsen-Kragh study has been repeated in various versions so many times it has become undeniable that one of the major factors of success in treatment of PsA is in fact ATTITUDE, taking control, a knowing you are fighting the disease. These things make a huge difference. And while believing a particular diet will help, and getting some relief from a result. it is important to understand the disease is progressing. The only thing that has been found to stop the progression IS medication. I know one of the hardest things to wrap ones mind around is that pain levels are the least dependable way to monitor the disease.

You can follow up on the research used to write this excellent article (although you can trust the article) that goes into more detail about the moving/exercising etc and the importance of these things to controlling stress/depression and the huge effect stress/depression has on increasing disease activity and flares.

http://arthritis.webmd.com/psoriatic-arthritis/stress-relief

[bumble]

Just thought I’d throw in my two cents worth. Humira has worked wonders for me. My hands were bad enough I couldn’t write or button a shirt and my feet were so bad I couldn’t walk. This was last year springtime. This past Monday I rode (bicycle) 50 miles in an afternoon. I have tramadol for occasional pain (I don’t need it very often) and mobic if I start to get any inflammation. Other than that I take 25 mg of amytriptaline a night to help with sleep. I have a relative with RA who is on a dmard (not sure which one) and hates it. My doc skipped me right over them. Like I said, just my 2 cents

[TEHawk]

lamb, that sounds a little negative. I am about to start Humira and my cost is only $5 a month out of my pocket. It is putting PsA patients in remission. I have a high pain tolerance where the males in my family do not. Everyone just has to do their own research and be responsible for your own health. You know your body better than anyone else. I do regular aerobic exercise and still have plenty of pain.

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.

[lonestarsally]

I'm not sure if this one was mentioned, but here is a study comparing a cohort of patients in a PsA clinic who received a TNF blocker with those treated with MTX that found that "patients with erosive PsA receiving TNF blockers had a better radiographic outcome compared to those treated with methotrexate"

http://ard.bmj.com/content/early/2013/04/24/annrheumdis-2012-202959.abstract

Lamb, I have to admit that your posts sometimes leave me feeling like you are smacking folks with that big stick (knowledge and experience) that you are wielding. Some folks are hearing this stuff for the first time and it is a lot to absorb. The content is good, but the message might be more effectively heard with a less forceful delivery. :-)

[Melody]

This was a more positive, realistic, and helpful response than your last one.. thank you! ... and I tend to agree with you 100% on this although I haven't tried any of the heavy drugs yet. I'm up early this morning because I slept well and I feel great for the first time in months! I'm on Minocycline (antibiotic) probiotics, and supplements for only 10 days now and I have very little to no pain. No other drugs. I exercise consistently, as well... an absolute MUST. Not sure if this is the key or if I'm just in between flare ups but it's really the best I've felt in a very long time. I feel as though now that I have a "plan" to try this route for 3 months, the fear and stress of the disease has been reduced and I can get back to other things. I'm following the Dr. David Brownstein route for now. This site has been extremely helpful to me.. thank you all so much.

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.

[TEHawk]

I know I am allergic to gluten and when I eat it, it magnifies the PsA symptoms.

tntlamb said:

While there is not a lot of repeatable verifiable research on "diet" and no explanation of the mechanism there have been a number of studies like these:

http://www.ncbi.nlm.nih.gov/pubmed/8205407

http://rheumatology.oxfordjournals.org/content/33/6/569.short

The Kjeldsen-Kragh study has been repeated in various versions so many times it has become undeniable that one of the major factors of success in treatment of PsA is in fact ATTITUDE, taking control, a knowing you are fighting the disease. These things make a huge difference. And while believing a particular diet will help, and getting some relief from a result. it is important to understand the disease is progressing. The only thing that has been found to stop the progression IS medication. I know one of the hardest things to wrap ones mind around is that pain levels are the least dependable way to monitor the disease.

You can follow up on the research used to write this excellent article (although you can trust the article) that goes into more detail about the moving/exercising etc and the importance of these things to controlling stress/depression and the huge effect stress/depression has on increasing disease activity and flares.

http://arthritis.webmd.com/psoriatic-arthritis/stress-relief

[TaraLynn]

TEHawk I’ve also really limited any gluten and I’m finding it helps too! I’ve also cut back a lot and red meat and feel that changing my diet is worth a try ;-). Every body is different and if diet can make the slightest difference then it’s worth it

[tntlamb]

I agree however I draw the line at red meat and alchol. There are just some sacrifices to great.

TaraLynn said:

TEHawk I've also really limited any gluten and I'm finding it helps too! I've also cut back a lot and red meat and feel that changing my diet is worth a try ;-). Every body is different and if diet can make the slightest difference then it's worth it :-)

[TaraLynn]

Tntlamb I love red meat…wine too for that matter! I’m not totally cutting it because I crave a good steak, burger, roast…actually I think I’d feel super deprived if I totally eliminated it! On the wine subject…this is a tough one! Apparently I can have a very limited amount…some say none. So far my blood work had been great and I’m making sure I drink a lot of water daily. What are your thoughts in regards? By the way I have had a really good few days, got out and did some hiking and was amazed to wake up and no major pain! Thinking the MTX may be working…crossing my fingers
tntlamb said:

I agree however I draw the line at red meat and alchol. There are just some sacrifices to great.

TaraLynn said:

TEHawk I’ve also really limited any gluten and I’m finding it helps too! I’ve also cut back a lot and red meat and feel that changing my diet is worth a try ;-). Every body is different and if diet can make the slightest difference then it’s worth it

[Melody]

I was diagnosed this past spring and before I was even tested for TB, etc, the rheumy had the Humira pushers calling me repeatedly for verification of info to immediately ship out the poison. No follow up, no discussion of alternatives, just an instant connection to the pharmacy for my permanent Rx#. This infuriated me and I refused to support the obvious connection between Conventional Docs & Big Pharms. Even when I asked if there were any dietary triggers to be aware of, she AND the P.A. shook their heads "no", and suggested "maybe tomatoes"... I was "dying" and absolutely desperate 3 months ago for pain relief and a decent nights sleep but I refused to give in before doing my own research. This site has been tremendously helpful with everyone's experiences and I'm convinced now that avoiding all the heavy drugs and "managing" my PsA with diet and exercise and conscientious stress reduction is the way to go for me (for now...) Just getting over the fear of the disease helped with the stress. It doesn't own me anymore. I'm in control ....for now...

[TEHawk]

Sounds like you need a different rheumatologist. A biologic should never be started without a TB skin test first. That is a no brainer. My Rheumy wants to make sure my white blood cell count is normal before starting a biologic. It only makes sense. I am so glad you have found a way to manage without biologics. God Bless You!

Melody said:

I was diagnosed this past spring and before I was even tested for TB, etc, the rheumy had the Humira pushers calling me repeatedly for verification of info to immediately ship out the poison. No follow up, no discussion of alternatives, just an instant connection to the pharmacy for my permanent Rx#. This infuriated me and I refused to support the obvious connection between Conventional Docs & Big Pharms. Even when I asked if there were any dietary triggers to be aware of, she AND the P.A. shook their heads "no", and suggested "maybe tomatoes"... I was "dying" and absolutely desperate 3 months ago for pain relief and a decent nights sleep but I refused to give in before doing my own research. This site has been tremendously helpful with everyone's experiences and I'm convinced now that avoiding all the heavy drugs and "managing" my PsA with diet and exercise and conscientious stress reduction is the way to go for me (for now...) Just getting over the fear of the disease helped with the stress. It doesn't own me anymore. I'm in control ....for now...

[TaraLynn]

Hi Melody, Great to hear that you have had some success with diet and exercise! I’ve know of a few people who have changed their diet and felt it really helped improve their quality of life :-). I will continue to work with my diet and see if eliminating and limiting food helps. Exercise has always been a big part of my life and I will continue to remain active, probably never running another marathon but happy to be able to move I’ve been able to manage with little medication (mainly Celebrex) until recently when flares and pain increased. I’m now on the MTX. I’ve decreased a lot of stresses in my life and look forward to one day being in control :-). Thank you for your positive feedback this site has been tremendously helpful!



Melody said:

I was diagnosed this past spring and before I was even tested for TB, etc, the rheumy had the Humira pushers calling me repeatedly for verification of info to immediately ship out the poison. No follow up, no discussion of alternatives, just an instant connection to the pharmacy for my permanent Rx#. This infuriated me and I refused to support the obvious connection between Conventional Docs & Big Pharms. Even when I asked if there were any dietary triggers to be aware of, she AND the P.A. shook their heads “no”, and suggested “maybe tomatoes”… I was “dying” and absolutely desperate 3 months ago for pain relief and a decent nights sleep but I refused to give in before doing my own research. This site has been tremendously helpful with everyone’s experiences and I’m convinced now that avoiding all the heavy drugs and “managing” my PsA with diet and exercise and conscientious stress reduction is the way to go for me (for now…) Just getting over the fear of the disease helped with the stress. It doesn’t own me anymore. I’m in control …for now…

[TaraLynn]

See I’m constantly learning here…TEHawk I had no idea about tb testing…I’m thinking I must have been tested as I’ve been dealing with for years however it’s something I will ask next Dr. Appointment or maybe it’s something they do only prior to biologics? I’m so green it’s a little frustrating however I’m so grateful to have found this site and connected with you all!!!

[Melody]

I agree with you TaraLynn, I've learned so much from the folks here! I believe the TB test is done prior to administering the tnf blocker-meds..Humira, Embrel, etc..

TaraLynn said:

See I'm constantly learning here...TEHawk I had no idea about tb testing...I'm thinking I must have been tested as I've been dealing with for years however it's something I will ask next Dr. Appointment or maybe it's something they do only prior to biologics? I'm so green :-( it's a little frustrating however I'm so grateful to have found this site and connected with you all!!!

[GrumpyCat]

The very best natural things that you can do for yourself all lead to one thing: keeping yourself well otherwise.

I think diet is incredibly important. It helps keep all of the other nasty things at bay (hypertension, diabetes, hypercholesterolemia, heart disease, additional pain due to obesity, etc). There is some research that states we are at a higher risk for developing those conditions because of PsA, so we all should do our best to eat as well as we can.

Lamb is 110% right about movement. Whether is PT, walking, swimming, or range of motion just keep going. I understand pain and how debilitating this is. In fact, I’m in one of the worst spots I have ever had right now, but I MOVE . I really have to force myself sometimes, and sometimes I cry but I make myself do it because nothing scares me more than losing my mobility. That is my motivator. Everyone should have something that helps motivate them to keep going even when you really do believe you can’t. I want to be clear that I’m not saying anyone should over exert themselves. Just do what you can to keep yourself strong every day.

As far as meds go, it seems that everyone starts off on MTX. I got lucky as I was already on Humira for severe plaque psoriasis. Had I not been such a know-it-all, I would probably still be on it except I refused MTX co therapy based on what I had heard from others. Stupid? Absolutely. The studies that Lamb referenced do show that patients had significantly less incidences of antibody formation(to Humira) as a result of taking it with MTX. (I won’t go into all of the details. The study is available on the Abbott website.) Humira worked excellently for me until I made antibodies and it stopped working. Now I’m on my second biologic which I absolutely take with MTX. However, I have been on it about 9 months and I have seen some improvement, but its still no where near the relief I got from Humira. My point is that don’t discount a drug until you have thoroughly researched it for yourself from good information. Also, we are all so different and there is still so much to learn about this disease and its treatment. I’ve modified my attitude and if my doc suggests it, odds are that I will try it.

We are our best advocates. Learn as much as you can so that you can be knowledgable when talking to your doc. Seenie has a book that she recommends, and it is excellent for lay persons. It gives you all of the nomenclature, testing, therapies, etc. it’s called, “Psoriatic Arthritis: The Facts”, Gladman and Vinod. You can find it on Amazon and its pretty reasonably priced. You can also get it for kindle download.

That whole, “Never being pain free” thing kind of hits all of us hard, especially when your doc is saying it. DO NOT DWELL ON THIS THOUGHT. Trust me, it isn’t helpful. The first year after diagnosis is one of the hardest because there is just so much change. The things you aren’t able to do, the way you change your life to accommodate your new abilities, adding more drugs and doctor visits than you thought possible, coping with pain, disfigurement, weight gains/losses: its nuts, and it feels like you Re whacked with it all at once. I experienced it and felt like I was losing “ME”. I survived. Want my secret? Therapy. I found a great online therapist. We did sessions by email and Skype. It was so great and it really helped me adjust to the “new me”.

So, there’s my shpeel. I hope it helps someone in some way. If you ever need help, I will always make time, even if I’m not on the site too much anymore. (Another secret? I, not as grumpy as you might think!)

TaraLynn said:

Thank you tntlamb :-). I appreciate the information. I must say it's overwhelming and I'm on a fast learning curve here. I keep getting pushed by loved ones to also seek natural alternatives. Have you come across any research regarding natural alternatives? I've talked to a few doctors and most are saying it's a waste of money....it seems that the pharmaceutical companies run everything including cost of meds. I'm lucky as I have coverage along with my husband so dual coverage is a blessing. I don't mean to rock the boat but knowing there is no cure...anything is possible and worth a try right? Or maybe not??

tntlamb said:

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.

[GrumpyCat]

It is possible that they did the tb testing with a blood sample instead. There are a couple of methods for screening.




TEHawk said:

Sounds like you need a different rheumatologist. A biologic should never be started without a TB skin test first. That is a no brainer. My Rheumy wants to make sure my white blood cell count is normal before starting a biologic. It only makes sense. I am so glad you have found a way to manage without biologics. God Bless You!

Melody said:

I was diagnosed this past spring and before I was even tested for TB, etc, the rheumy had the Humira pushers calling me repeatedly for verification of info to immediately ship out the poison. No follow up, no discussion of alternatives, just an instant connection to the pharmacy for my permanent Rx#. This infuriated me and I refused to support the obvious connection between Conventional Docs & Big Pharms. Even when I asked if there were any dietary triggers to be aware of, she AND the P.A. shook their heads “no”, and suggested “maybe tomatoes”… I was “dying” and absolutely desperate 3 months ago for pain relief and a decent nights sleep but I refused to give in before doing my own research. This site has been tremendously helpful with everyone’s experiences and I’m convinced now that avoiding all the heavy drugs and “managing” my PsA with diet and exercise and conscientious stress reduction is the way to go for me (for now…) Just getting over the fear of the disease helped with the stress. It doesn’t own me anymore. I’m in control …for now…

[GrumpyCat]

Do you have follow up exams to assess for joint damage? One may have no symptoms, but the body is still attacking the joints and causing irreparable damage.

It sounds like you had a terrible doc who did you an incredible disservice by not discussing options with you. Even if they had, they would not have offered diet, exercise and stress reduction as primary therapy.

Melody said:

I was diagnosed this past spring and before I was even tested for TB, etc, the rheumy had the Humira pushers calling me repeatedly for verification of info to immediately ship out the poison. No follow up, no discussion of alternatives, just an instant connection to the pharmacy for my permanent Rx#. This infuriated me and I refused to support the obvious connection between Conventional Docs & Big Pharms. Even when I asked if there were any dietary triggers to be aware of, she AND the P.A. shook their heads "no", and suggested "maybe tomatoes"... I was "dying" and absolutely desperate 3 months ago for pain relief and a decent nights sleep but I refused to give in before doing my own research. This site has been tremendously helpful with everyone's experiences and I'm convinced now that avoiding all the heavy drugs and "managing" my PsA with diet and exercise and conscientious stress reduction is the way to go for me (for now...) Just getting over the fear of the disease helped with the stress. It doesn't own me anymore. I'm in control ....for now...

[bumble]

I’m going to have to agree with Lamb on the fact that giving up red meat and alcohol are too great a sacrifice On a more serious note, I have personally seen that attitude is indeed a HUGE factor. At least it is for me.

[TaraLynn]

Thank you GrumpyCat :-)it’s a huge learning curve and your right we have to learn to advocate for ourselves! So much to learn, so much to take in. I’m sincerely grateful for all the support and knowledge here. I love the fact your cats are purrtherapy I have a yellow lab and she is also a big part of my therapy…she gets me out walking never believed your grumpy you have a great PP thanks so much for the feedback! PSA is tough and there sure is a lot of strength and support here! What a wonderful strong group



GrumpyCat said:

The very best natural things that you can do for yourself all lead to one thing: keeping yourself well otherwise.


I think diet is incredibly important. It helps keep all of the other nasty things at bay (hypertension, diabetes, hypercholesterolemia, heart disease, additional pain due to obesity, etc). There is some research that states we are at a higher risk for developing those conditions because of PsA, so we all should do our best to eat as well as we can.



Lamb is 110% right about movement. Whether is PT, walking, swimming, or range of motion just keep going. I understand pain and how debilitating this is. In fact, I’m in one of the worst spots I have ever had right now, but I MOVE . I really have to force myself sometimes, and sometimes I cry but I make myself do it because nothing scares me more than losing my mobility. That is my motivator. Everyone should have something that helps motivate them to keep going even when you really do believe you can’t. I want to be clear that I’m not saying anyone should over exert themselves. Just do what you can to keep yourself strong every day.



As far as meds go, it seems that everyone starts off on MTX. I got lucky as I was already on Humira for severe plaque psoriasis. Had I not been such a know-it-all, I would probably still be on it except I refused MTX co therapy based on what I had heard from others. Stupid? Absolutely. The studies that Lamb referenced do show that patients had significantly less incidences of antibody formation(to Humira) as a result of taking it with MTX. (I won’t go into all of the details. The study is available on the Abbott website.) Humira worked excellently for me until I made antibodies and it stopped working. Now I’m on my second biologic which I absolutely take with MTX. However, I have been on it about 9 months and I have seen some improvement, but its still no where near the relief I got from Humira. My point is that don’t discount a drug until you have thoroughly researched it for yourself from good information. Also, we are all so different and there is still so much to learn about this disease and its treatment. I’ve modified my attitude and if my doc suggests it, odds are that I will try it.



We are our best advocates. Learn as much as you can so that you can be knowledgable when talking to your doc. Seenie has a book that she recommends, and it is excellent for lay persons. It gives you all of the nomenclature, testing, therapies, etc. it’s called, “Psoriatic Arthritis: The Facts”, Gladman and Vinod. You can find it on Amazon and its pretty reasonably priced. You can also get it for kindle download.



That whole, “Never being pain free” thing kind of hits all of us hard, especially when your doc is saying it. DO NOT DWELL ON THIS THOUGHT. Trust me, it isn’t helpful. The first year after diagnosis is one of the hardest because there is just so much change. The things you aren’t able to do, the way you change your life to accommodate your new abilities, adding more drugs and doctor visits than you thought possible, coping with pain, disfigurement, weight gains/losses: its nuts, and it feels like you Re whacked with it all at once. I experienced it and felt like I was losing “ME”. I survived. Want my secret? Therapy. I found a great online therapist. We did sessions by email and Skype. It was so great and it really helped me adjust to the “new me”.



So, there’s my shpeel. I hope it helps someone in some way. If you ever need help, I will always make time, even if I’m not on the site too much anymore. (Another secret? I, not as grumpy as you might think!)







TaraLynn said:

Thank you tntlamb :-). I appreciate the information. I must say it’s overwhelming and I’m on a fast learning curve here. I keep getting pushed by loved ones to also seek natural alternatives. Have you come across any research regarding natural alternatives? I’ve talked to a few doctors and most are saying it’s a waste of money…it seems that the pharmaceutical companies run everything including cost of meds. I’m lucky as I have coverage along with my husband so dual coverage is a blessing. I don’t mean to rock the boat but knowing there is no cure…anything is possible and worth a try right? Or maybe not??

tntlamb said:

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.