I try not to complain to anyone, but I need a place to vent. While I am grateful that there is medicine to slow the progression of psoriatic arthritis, I really hate the side effects. I take it on Friday so it does not effect me being able to work. But every other weekend, sometimes every weekend is a loss. I am sad and frustrated and some of my family don't get it. It is not the fibro washing me out, it's the side effect of meds. I do not have the support of my husband and one of my daughters. The other two really try to help but I will not take advantage of that. , Two of the three are adults and one is a teenager. I will be starting Enbrel soon but I think I have to stay on the Mtx. On a positive note, I have good doctors. Thank you for letting me get this out of my system. It is good to have a place to go. Lucia
Lucia- You're definitely in the right place to vent. Nobody likes the side effects. It's a real shame that you don't have full support from your husband in particular. I happen to be really lucky, and my husband is very supportive. Sometimes a little bit too understanding, sometimes not. Like this morning, when he asked me to go get wood from the woodpile.
I'm sure that you've tried different ways to get your husband to understand more. Being specific is always helpful, but may not work. I'm sorry.
Remember you don't HAVE to stay on MTX if you find a biological med that works. Personally I would never take both. But that's just me. I know some docs recommend it to boost the effects of the Biological and to help slow the development of anti-bodies but the ultimate decision is up to you. Either way, hang in there! You'll get thru this.
Lucia welcome! I take both a biologic and mtx. The doctors are still trying to find a biologic that works for me, I have just started Remicade and my responses are hopeful. I have taken mtx with Humiria, Enbrel X2 and Simponi. If I respond well to the Remicade my Rheumy says we will titrate the mtx down and discontinue it. You did not say how long you had been taking the mtx; I have no side effects to it now but I have been on it for over a year. I hope this happens for you too.
Stoney sou are so sweet! Chris my rheumy wants me stay on both when I start but I will question that. Thank yo. and Michael I have been on it almost a year. I take 8 once a week. There was a pause in the side effects for about three weeks but it came back. It kind of scares me that you had to change biologics three times. Is nothing easy with this disease. I have carpal tunnel syndrome from the tendons swelling in arms and wrists. Pain in back is worse. I would say Mtx is no help at all if I weren't able to walk. My feet were severely effected but now just moderately. Thank you all for your responses. Your caring comments brought tears to my eyes. And I was never a crier. Have a good weekend. Lucia
My Rhuemy wanted me to take MTX along w/ my Humira. I told him to stick the MTX where the sun don't shine lol. I told him it was not an option. Oddly enough my Rhuemy will NOT rx MTX along w/ Remicade for some reason. I never asked why cause I wasn't going to take it anyways. Anyways, have you considered trying the injectable form of MTX? From what I've been told, many people tolerate the injectable form better then the pills.
I understand. You're not alone in this. I had terrible side effects from Mtx...there was just no way I could stay on it. My mind was in a cloud all the time. The pain in my muscles and probably 8 other side effects were just unbearable for me. I'm so glad to hear you have a good doc. I really hope it gets better. No one really understands PsA unless they have it.
I do inject mtx, 22.5 mg a week. Some weeks it really helps, some not so much. But it is suppressing my immune system from rejecting the biologics. At least that is the hope. I am not sure after the Remicade if there are any more for me to try.
Until you and Chris replied, Dini, I didn't remember that I have the power to day no. Time to move on to the biologics
I am on both Embrel and Mtx and Sulfazn. I am not sure if my Mtx will be decreased after I have been on Embrel for a full three months.
Are you taking Folic Acid as that will help with the side effects. I take 5mg of Folic Acid every day except on Mtx day.
I have an adult son who did not understand and did not want to know about what I was going through. I felt like he did not believe me either because I didn't look sick. Just a suggestion, perhaps encourage your family members to read this site or print out information off the net but be selective as some articles do not come close to the reality of this disease. So much information just seems to dismiss this disease as another form of arthritis which is true but it is so much more to it. Keep searching until you find more accurate information that you can relate to which describes your symptoms. Ask your family to read it and then perhaps it might be open for discussion..
Lucia,
It doesnt take long to get frustrated with a medication that won’t work for you! Especially one that has all of the side effects that MTX does.
I read that you were worried by the number of biologics that Michael has been through, but it’s a pretty common pattern. One drug will work for a while then just stop. This is due to the body making antibodies to the biologic drug. When switched to a different drug, there are no antibodies to that particular drug, so the new drug works (hopefully). After time, the body will stop making the antibodies to the first drug. So you can try all of them and be on the same drug several different times. The use of DMARDs, specifically MTX, inhibits the formation of these antibodies, and thus, make the biologic drug more effective for a longer period of time. Because of the whole antibody issue it is VERY IMPORTANT to take your dose as scheduled; on the same day and at the same time. In the studies that I read, test subjects with consistent, high levels of the drug in their body had less incidences of antibody formation. So, of you have to order your drug from a specialty pharmacy, make sure you place your order when you use your last dose. Then, you will be all set to stay on the dosing schedule. I am on my second biologic and I will be inquiring about adding MTX to the mix.
I am lucky like Stoney is; my husband is very good at trying to understand this. I am very honest with him about how I am feeling, what I can and can not do, how I need help, and sharing my emotional trials. If he did not understand, though, I would put him on this site and have him start reading. Its one thing to read information from webmd.com or the NIH site. Everything there makes it sound like PsA is no big deal. This site is more honest and gives a “behind the scenes” view of life with PsA. After he spent some time on this site, then I would direct him to the information sites like the ones I listed below to help him understand the medical aspect.
psoriasis.org or
http://www.arthritis.org/conditions-treatments/disease-center/psoriatic-arthritis/ or http://ghr.nlm.nih.gov/condition/psoriatic-arthritis.
Then you can explain to him what it’s like for you. I just asked my husband to start accompanying me to my doctors appointments. I think it will help him understand the clinical information a little better, and it will be nice to have an advocate with me. It might help your husband and you if he went to your appointments too.
I don’t know if you have read “The Spoon Theory” or not, but it’s really good. It really hit home for me and described so well how I have had to change my outlook. I had my family read it too, even the older kids. I think it helped them understand even more. So, I’m adding the link for that too.
http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/
You are welcome to let it out and vent anytime! Not everyone is able to understand some of our unique frustrations, and it is good to have somewhere to go where you can get some empathy and solid advice.
If you need anything at all, message me. I am here if you need me!
GrumpyCat
(feeling grumpier than ever at 5am!)
Grumpy, do you have any links that support the possibility of returning to a Biological drug once it has stopped working? My doctors have always told me the exact opposite. I've been told that once the body builds up sufficient anti-bodies to render the med ineffective that was it. You could never return to that medicine and expect positive results. I sure hope you are correct. One of my big worries is the fact that i've used up two biologicals already and have a third (Enbrel) sitting in my fridge waiting. Thanks for any links! That will make many of us on here rest a little easier I suppose.
The thing is lucia, MTX as a therapy is one thing. MTX when coupled with a biologic is an entirely DIFFERENT thing. The MTX in that case has a couple of different jobs.
One of the primary is prevent antibody production to the Biologics. Most of the bio drugs are humanized proteins made from other sources, the body eventually rejects them. Ebrel is is the least likley for this to happen but even it is cultured in the uterus of a chinese Hamster..... It too can develop antibodies
Humira in particular has been found to be FAR more effective when used with a DMARD MTX is not the only option but its been the one studied most. That same effectiveness is being found with the other biologics. usually the dose is lower, but not always. Long term MTX is easier on your body than either the NSAIDSs or Predi.
The nature of your disease is important too. The biologics are generally pretty effective EXCEPT periphirally (hands feet and such) often times id these areas are effected the dics keep the MTX going.
And heres one big one. Enbrel is still the more commonly used and is the most flexible for dosing schedule. the docs love it because fizer has by far the most flexible and inclusive assitance programs.Because its almost a pure synthetic it can be used for years by most (if its effective) we have posters here that have been with enbrel for 12 years or more.. There is one teeny tiny problem with enbrel I mentioned theat many of the bios sometimes have limitations with peripheral symptoms, Enbrel has one other, it isn't effective with Uveitis (several other biologics aren't eiuther) MTX is.
I chose NOT to take it (I'm a rather passionate homebrewer and scotch collector.) I learned Friday that was NOT a good idea. We will know in few months how permanent the damage is. One eye is 20/100 and not correctable the other is is 20/80 and able to be corrected 20/40. I don't use my tab anymore, so I will be absent a fair amount. (that ought to make Grumpy happy :-) )
Anyway a frank discussion with your doc forearmed with some info is the BEST way to make a discussion. Sure you DON"T HAVE to take anything you don't want to. You could skip it all paint yourself blue and go on a tofu diet too. My guess is though a few weeks/months into the regime, you will wonder what you were worried about........ This is the SECOND worst time of the disease (after the working up to finding out you have it) 90% of us Hang in there we know you will get there, even if you aren't so sure.
Lamb,
Are you saying that you have vision loss? Yikes! I’m sorry to hear that. I will keep you in my thoughts and keep my fingers crossed that the damage will reverse itself.
By the way, I missed you this weekend. Too dang quiet with out you around!
Grumpy
I would like to print a retraction. I misstated what i mean to say. I was thinking of me as the subject. Humira didnt completely quit working, it just wasnt as successful after a year or so. You’ll have to forgive me, I forgot to sleep last night!
It seems to me from the 20 articles that I just read that for Humira (I only looked up one drug) one could resume it at a higher dose with MTX and still have success with it. If a person had no success at all with all with a Biologic then that particular med is off the table for them. Subjects studied with the Humira who produced antibodies had their doses increased to every week instead of bi-weekly. This was done based on their Humira trough levels (the lowest amount of Humira available for use in the body). After a period of time in with the increased dose they showed higher Humira troughs with less antibodies. Patients who took methotrexate along with the Humira had much less incidences of developing antibodies. Ill post the studies that I looked at. The success with Humira and concomitant MTX is significantly greater than Humira alone.
The summary of all of the studies I looked at is that the production of antibodies can be significantly reduced when initiating Humira if the patient is given 40mg injection weekly, is on concomitant MTX therapy, and if trough levels are routinely monitored.
I am hoping to return to Humira with MTX added in if remicade fails. I will be asking the doc about adding MTX to remicade. Remicade has a similar make up to Humira with similar incidences of antibody production. I’m also hoping to keep the infusions no father apart than 6 weeks. I think I I can handle this plan (and my doc goes along with it) that the remicade will work for a good long while.
http://medlibrary.org/lib/rx/meds/humira/page/3/
http://archderm.jamanetwork.com/article.aspx?articleid=209615
Chris said:
Grumpy, do you have any links that support the possibility of returning to a Biological drug once it has stopped working? My doctors have always told me the exact opposite. I've been told that once the body builds up sufficient anti-bodies to render the med ineffective that was it. You could never return to that medicine and expect positive results. I sure hope you are correct. One of my big worries is the fact that i've used up two biologicals already and have a third (Enbrel) sitting in my fridge waiting. Thanks for any links! That will make many of us on here rest a little easier I suppose.
Lamb- And sometimes one can do everything right, and still have vision loss. Mine is very minor thus far, but I have had some retinal damage, due to inflammation alone.
I hope that you are able to slow down/stop the vision loss. I'm really sorry about that.
Excellent info TNTlamb!! Wow! I learned a lot in this post! Thanks!!
tntlamb said:
The thing is lucia, MTX as a therapy is one thing. MTX when coupled with a biologic is an entirely DIFFERENT thing. The MTX in that case has a couple of different jobs.
One of the primary is prevent antibody production to the Biologics. Most of the bio drugs are humanized proteins made from other sources, the body eventually rejects them. Ebrel is is the least likley for this to happen but even it is cultured in the uterus of a chinese Hamster..... It too can develop antibodies
Humira in particular has been found to be FAR more effective when used with a DMARD MTX is not the only option but its been the one studied most. That same effectiveness is being found with the other biologics. usually the dose is lower, but not always. Long term MTX is easier on your body than either the NSAIDSs or Predi.
The nature of your disease is important too. The biologics are generally pretty effective EXCEPT periphirally (hands feet and such) often times id these areas are effected the dics keep the MTX going.
And heres one big one. Enbrel is still the more commonly used and is the most flexible for dosing schedule. the docs love it because fizer has by far the most flexible and inclusive assitance programs.Because its almost a pure synthetic it can be used for years by most (if its effective) we have posters here that have been with enbrel for 12 years or more.. There is one teeny tiny problem with enbrel I mentioned theat many of the bios sometimes have limitations with peripheral symptoms, Enbrel has one other, it isn't effective with Uveitis (several other biologics aren't eiuther) MTX is.
I chose NOT to take it (I'm a rather passionate homebrewer and scotch collector.) I learned Friday that was NOT a good idea. We will know in few months how permanent the damage is. One eye is 20/100 and not correctable the other is is 20/80 and able to be corrected 20/40. I don't use my tab anymore, so I will be absent a fair amount. (that ought to make Grumpy happy :-) )
Anyway a frank discussion with your doc forearmed with some info is the BEST way to make a discussion. Sure you DON"T HAVE to take anything you don't want to. You could skip it all paint yourself blue and go on a tofu diet too. My guess is though a few weeks/months into the regime, you will wonder what you were worried about........ This is the SECOND worst time of the disease (after the working up to finding out you have it) 90% of us Hang in there we know you will get there, even if you aren't so sure.