New member since March 2014 and interested in more feedback!

Welcome Greetings and Introductions
1

Hi everybody,

I joined a couple months ago when somehow I came across this forum while I was searching for more info about PsA. My story is on my page, so I'll try not to rewrite what I stated there.

I've been looking at photos and reading others' stories as well as entering into some of the discussions on here, and I keep coming across new stuff--like this discussion.

I think my PsA is a little different from most of the people on here because mine has been a slower progression. I feel fortunate that it waited until my late 50s before it started really acting up, because I don't know how some of you cope with raising kids and feeling so crappy! I have 5 grandkids who I am very involved with, and it is so tiring sometimes--but I love them so much and need to spend a lot of time with them and our adult children, too. I feel like they are my life and having them around is good therapy!

My rheumy told me when he gave me the PsA diagnosis a few years ago that my PsA would most likely continue as it was and I felt assured that the ups and downs (flares) would continue to be manageable without DMARDS or biologics. I've had some really bad neuropathy in my feet, which was cured by taking 10mg Nortriptyline for about a year (the neuropathy went away but I still have sore feet--just not unbearably sore). Last year, he strongly recommended a biologic. I told him I wasn't ready for that, so he tried to get me to agree to go on Sulfasalazine. I just couldn't do it....especially because he said it could damage my liver so they would watch that very closely, and the Sulfasalazine wouldn't help my psoriasis.

My psoriasis has gradually worsened over the past few years along with the PsA. I guess I have to accept the fact that this is not going to miraculously go away, but I don't feel I'm as sick as a lot of the members who have told their stories here. Earlier today I told myself to not be so down about this! There are so many people suffering with so many bad things--and young people! Sure, I've had psoriasis since I was about 22, but it never got me down. I guess the worry about being deformed, in pain and possibly handicapped because of the PsA is overwhelming for me! I'm not athletic, but sort of a workaholic, and that's how people know me and expect me to be. My kids have told me I've changed so much in the past few years....it's hard because they're telling me I'm not the same happy person I used to be. I was good at cheering people up and making everyone around me happy--not the one who would EVER get depressed about ANYTHING! They tell me I need an anxiety pill, but I refuse to admit I'm anxious about this disease or anything else. I want to be the person I was 10 years ago.....

I wanted to mention here that I have learned so much in the last couple of weeks on this site....I already purchased the book "Psoriatic Arthritis-The Facts"--thank you very much, Seenie. It arrived yesterday and I will be reading tomorrow (today was dance recital day for my twin granddaughters, plus my grandson's 3rd birthday--so no time to read!!!). Just from reading the discussions on here I have made some decisions about meds already. I like what I've read about Enbrel, but most of what I've read about Methotrexate is negative. (Plus my mom took Methotrexate for polymyalgia and it was discontinued due to bad side effects.) I think I've already written somewhere on a discussion that I proceed with caution always--that's why I didn't get on an airplane until I was 59!! So, a life-change like taking a biologic (which I would call a "big gun") is going to be well thought-out.

Okay, this is getting crazy long....just want to say thanks to all of you caring people for reading my story, and I welcome your feedback!!!

2

Hi Grandma J and welcome to this site. I have been on methotrexate for 10 years and on 6 biologics. They work for me for about a year and then slowly seem to stop working. Apparently 30% or so of PsA patients are able to build antibodies to the biologics rendering them ineffective after a while. Other people can stay on the same biologics for years without doing this.

The biologics make my flares less serious and shorter. It works really well on my spine which is where mine is the worst. Methotrexate or mtx works on my hands and feet which are also bad. And both seem to help my elbows and knees. I also take Celebrex at twice the daily dose. For me and my psa it has to be the 3 pronged approach, NASID or non-steroidal anti-inflammatory along with DMARD and biologic. I no longer work but am able to have a surprisingly satisfying life.

Of all the drugs we take the biologics have the least side effects and harsh effects on the body. Prendisone is the harshest on the body and has some really significant side effects. I was a nurse for 40 years. The arthritic patients we had before the advent of the biologics were horrifying. They tend to be curled in a ball, thin and bony and unable to move and shuddering in pain when we had to move them. They had nothing to treat these poor patients with but prednisone and gold shots and it was awful. With the new drugs we have a chance at a longer and full life. Please give the biologics a chance.

3

Hi Michael,

I didn't know there were that many different biologics. So, when one stops working, do your PsA symptoms come back worse than ever, or do you just start noticing flare ups more frequently? That's one of my worries--that I'll get on a biologic, only for it to stop working and having to constantly be going back to the doctor to figure out what will work--a lot of trial and error! It almost seems like life can be simpler just not doing anything. Maybe my pain isn't bad enough yet.....it is interesting that the biologics have the least side effects. When you listen to the ads on TV, you'd swear you were going to end up with any number of illnesses or side effects that you wouldn't get if not on a biologic! It's very interesting that you don't have problems from the Methotrexate, because so many members here have said that Methotrexate was horrible. I must sound so pessimistic, but I just need to be totally educated about this disease and the drugs before I take the plunge.....I'm starting to accept the fact that I just can't go on like this much longer. Thanks for responding!!!



michael in vermont said:

Hi Grandma J and welcome to this site. I have been on methotrexate for 10 years and on 6 biologics. They work for me for about a year and then slowly seem to stop working. Apparently 30% or so of PsA patients are able to build antibodies to the biologics rendering them ineffective after a while. Other people can stay on the same biologics for years without doing this.

The biologics make my flares less serious and shorter. It works really well on my spine which is where mine is the worst. Methotrexate or mtx works on my hands and feet which are also bad. And both seem to help my elbows and knees. I also take Celebrex at twice the daily dose. For me and my psa it has to be the 3 pronged approach, NASID or non-steroidal anti-inflammatory along with DMARD and biologic. I no longer work but am able to have a surprisingly satisfying life.

Of all the drugs we take the biologics have the least side effects and harsh effects on the body. Prendisone is the harshest on the body and has some really significant side effects. I was a nurse for 40 years. The arthritic patients we had before the advent of the biologics were horrifying. They tend to be curled in a ball, thin and bony and unable to move and shuddering in pain when we had to move them. They had nothing to treat these poor patients with but prednisone and gold shots and it was awful. With the new drugs we have a chance at a longer and full life. Please give the biologics a chance.

4

I had to educate myself when I realized I had PsA too. The medical field really does not know much about it. I know when I was a nurse we sort of lumped all the inflammatory arthritis into one category in our heads. When you realize you have the disease the distinctions between types becomes much more important to you.

While I agree it is simpler to do nothing in the beginning it really isn't in the long run. Without proper treatment a lot of us will need assistance with bathing, eating, dressing and toileting which in my opinion is a complication I do not want. We all have to accept a trial and error period as we do not all respond in the same way to the same drugs. Someday they may be able to tailor the biologics to each of us. But we aren't there yet.

When I am becoming immune to a biologic my flares become more frequent and more fierce. I notice an increase in lots of allergy symptoms, my nose runs and I have trouble taking a deep breath and get wheezy and need to use my inhalers. And my eyes get gritty and hurt. As I continue on the biologic which I am becoming immune to my pain, muscle and tendon spams, fatigue and brain fog become worse. My husband says I look depressed and he can hear the change in my voice. Luckily they seem to come out with a new biologic almost annually for those of us who build immunity. Remember lots of people don't do this. For some of us there is more trial and error than of others. You may be one of the lucky ones whose first biologic brings you long and lasting responses.

5

I forgot to mention about the ads on tv. I believe it says more about our legal system than it does about pharmacology. I have to laugh at some of the class action suits. They are about a lot of medications we still use frequently. One is about YAZ or Ocella which is a frequently used birth control another is about Risperidol growing breasts on young men. As far as I know Risperidol is only used in disabling psychosis. If it is a choice between a very psychotic son burning down the house or killing someone or growing breasts I know what I would pick!

I think we need to keep in mind that due to our lawsuit happy society drug companies must now list all possible side effects on each medication. If you read the insert on Tylenol you might be afraid to take it but it is a very safe and useful pain killer and fever reducer.

6

You address so many things here! I will tackle one at at a time.

  1. Side effect with MTX. People who take MTX orally often DO have a hard time with side effects (SEs). A lot of us “old timers” take it via a small injection. It doesn’t hurt, you do it at home, it’s an insulin needle (very tiny, mosquitoes hurt me more!), and we take it with Folic Acid which minimizes the SEs a TON. I have been on it for over a year, I think, and have no problems with it, nor do most of the others who take it via injection.
    2)You aren’t as sick as a lot of the folks here. That may well be true. We attract new patients and folks who have complicated illness who have difficulty getting the sweet spot with their treatments. The other folks with PsA, who aren’t so sick, are also on bios, but they are do ft well, and don’t spend their lives hanging out here. They don’t need us because they feel good! :slight_smile:
  2. Maybe your pain isn’t bad enough yet…Pain isn’t a good indicator of how advanced or not your disease actually is. Even if you aren’t hurting too much, one can still have very active disease causing damage on the inside. The only way to see this is through X-ray or better an MRI. Since you’d have been reading, you probably already know that this is a chronic, progressive disease. It’s not a matter of IF, but WHEN. That’s why the American College of Rheumatology recommends early and aggressive treatment for all PsA patients.
  3. The horrible warnings at the end of all drug commercials. These things are awful, and do noting but cause fear is patients who could be avoiding a potentially life-saving drug. This makes GrumpyCat ANGRY! The risk with bios is actually quite low, and some of those warnings aren’t even for our particular patient population! When the drugs are in trials, the researchers are required to report everything that happens with each patient. So, for instance, and I am using meds up numbers here, say they test the new drug EyufNewt on 1000 patients. Of those patients, 20 develop green skin and warts. Well the risk of developing warts and green skin is 20 in 1000 in the non- drug tested population too. The drug co. Still has to report their findings that 20 of 1000 of the people who took EyofNewt ended up with green skin and warts! This results in the old correlation does not equal causation phrase being chanted. I sincerely hope I made that understandable and not confusing. The take-away lesson is easy, Take the warnings with a grain of salt. We live in a litigious society and companies are trying to do a lot of preemptive cya.

I hope this was helpful, I just want to echo what Michael said. Sometimes it helps to hear the same things from a number of sources.
“Fear the disease, not the drugs”

7

Thanks again, Michael. I know I might be just a tad pessimistic and fearful--just a TAD haha!!! All you people on here are really helping me a lot! I appreciate the encouragement and the first-hand information from those who actually have the disease, and I am filling my brain with all your positive feedback. It is leading me to a well-informed decision on what course of action I will take!

michael in vermont said:

I forgot to mention about the ads on tv. I believe it says more about our legal system than it does about pharmacology. I have to laugh at some of the class action suits. They are about a lot of medications we still use frequently. One is about YAZ or Ocella which is a frequently used birth control another is about Risperidol growing breasts on young men. As far as I know Risperidol is only used in disabling psychosis. If it is a choice between a very psychotic son burning down the house or killing someone or growing breasts I know what I would pick!

I think we need to keep in mind that due to our lawsuit happy society drug companies must now list all possible side effects on each medication. If you read the insert on Tylenol you might be afraid to take it but it is a very safe and useful pain killer and fever reducer.

8

Hey, Grumpy Cat--thanks! Like I told Michael, you people are helping me so much. I'm lucky to have moderate P and PsA--it could be a lot worse! Although, today has been a reminder that I'm really not that well--I'm so tired after a good 8 hours sleep and my hands, arms, knees and feet are killing me. I need to mow our acre today (with a riding mower) and know how that's going to cause my arms and hands to hurt even more for several days! I just read about Otezla (apremilast) on psoriasis.org....I'm going to check to see if there's been any discussion about it! Have a nice day!!!!

GrumpyCat said:

You address so many things here! I will tackle one at at a time.
1) Side effect with MTX. People who take MTX orally often DO have a hard time with side effects (SEs). A lot of us "old timers" take it via a small injection. It doesn't hurt, you do it at home, it's an insulin needle (very tiny, mosquitoes hurt me more!), and we take it with Folic Acid which minimizes the SEs a TON. I have been on it for over a year, I think, and have no problems with it, nor do most of the others who take it via injection.
2)You aren't as sick as a lot of the folks here. That may well be true. We attract new patients and folks who have complicated illness who have difficulty getting the sweet spot with their treatments. The other folks with PsA, who aren't so sick, are also on bios, but they are do ft well, and don't spend their lives hanging out here. They don't need us because they feel good! :-)
3) Maybe your pain isn't bad enough yet.....Pain isn't a good indicator of how advanced or not your disease actually is. Even if you aren't hurting too much, one can still have very active disease causing damage on the inside. The only way to see this is through X-ray or better an MRI. Since you'd have been reading, you probably already know that this is a chronic, progressive disease. It's not a matter of IF, but WHEN. That's why the American College of Rheumatology recommends early and aggressive treatment for all PsA patients.
4) The horrible warnings at the end of all drug commercials. These things are awful, and do noting but cause fear is patients who could be avoiding a potentially life-saving drug. This makes GrumpyCat ANGRY! The risk with bios is actually quite low, and some of those warnings aren't even for our particular patient population! When the drugs are in trials, the researchers are required to report everything that happens with each patient. So, for instance, and I am using meds up numbers here, say they test the new drug EyufNewt on 1000 patients. Of those patients, 20 develop green skin and warts. Well the risk of developing warts and green skin is 20 in 1000 in the non- drug tested population too. The drug co. Still has to report their findings that 20 of 1000 of the people who took EyofNewt ended up with green skin and warts! This results in the old correlation does not equal causation phrase being chanted. I sincerely hope I made that understandable and not confusing. The take-away lesson is easy, Take the warnings with a grain of salt. We live in a litigious society and companies are trying to do a lot of preemptive cya.

I hope this was helpful, I just want to echo what Michael said. Sometimes it helps to hear the same things from a number of sources.
"Fear the disease, not the drugs"