I went to my rheumy on Thursday because I’m pretty miserable. My P has been pretty aggressive for about the last six months and it’s making me absolutely miserable . I have it the worst on the palm of my right hand and the soles of my feet so bad some times that it is really hard to put shoes on let alone walk.
She had me doing Enbrel 2x a week along with Lefludomide which I lost 25 pound but also lost a lot of hair :(. I was supposed to do this for twelve weeks to get the P under control. It really didn’t get too much better but my legs and elbows did clear up and the patch on my head is gone . Then I stopped after 12 weeks about three weeks ago and BAM! My hand is horrible, my feet are much worse and worst of all my PsA is rearing its ugly head and my hands are swollen and my left knee and hip are really taking to me.
( I’m sorry this is turning into a novel) so Thursday she told me she was concerned and wanted to add MXT which I’ve been trying to avoid. I’m waiting on the labs to say its okay if I take that. Meanwhile I’m taking Prednisone for the next eight weeks to try to stop this stuff and get better.
I guess I’m just telling all of this is because I’m getting scared . I’m only 48 and I still have kids at home. Since I was diagnosed two years ago I keep going in the wrong direction and fast! I don’t know how I can keep doing this if this stuff doesn’t work soon!
I am 48 with kids as well and have been on Mtx for about 9 months. It took awhile to see any improvement and I take it fridays so the side effects don't interfere with work. It is my back and feet which were first effected by PsA. I wish I could tell you that Mtx worked for me forever but it didn't. MY next step is to continue the Mtx and start Enbrel. I have an appt with my Rheumy in two weeks. I have been too scared to start Enbrel and you are too scared to start Mtx! My Rheumy said you stay on Mtx while on Enbrel..My fear is that damage to other joints is already happening so I don't have a choice. . Mtx is a disease modifying anti-rheumatic drug so it should help the progress of PsA. .Did I miss why you stopped the meds 12 weeks ago?
I didn’t stop, I did two shots a week of enbrel for 12 weeks to hopefully get control of the P mad then just went down to one shot a week. I’ll be doing both enbrel and Mtx together. I’m sorry, I’m really foggy this week:)
I'm sorry that all of this seems so scary. I think it does for most of us until we jump in and do it, and then it becomes part of life's routine. MTX has been the one drug so far that has really alleviated my symptoms, so I'm very glad that I'm taking it. Like Lucia, I found that it took a number of weeks for me to see a major improvement, but after some weeks of step-by-step improvement, I did hit the majors in terms of pain relief and disappearance of swelling. Enbrel taken with it has not helped me, so I am going to be starting Humira. I was anxious about starting Enbrel, too, but I had absolutely no problems or side effects from it.
When I get into the mood for reading medical journal articles, I read that a biologic like Enbrel or Humira or one of the others works better when a person also takes Enbrel and that MTX works better when you take a biologic, too. And the measurement of "better" is across a lot of scales. Do you report feeling better? Are there fewer inflammatory markers in your blood? Does your doctor count fewer inflamed, painful joints? Are you able to do more activities of daily living - as in last week it was hard to reach behind your head and zip up a zipper and this week it's a snap? So I think the measures of "better" are good, reality-based ones. I hope very much that the added meds help you both. I wish that I had just jumped in earlier and started taking them, instead of worrying about possible side effects. When I sat down and did the math, the actual NUMBER of people who had any kind of serious side effects was very low. If you read that 2% of people who take drug X grow horns, that sounds scary. But if you look at how many people were in the study and it was 2,000, then one person out of a thousand grew horns. So your risk of being that one person is not high.
Lucky Mama, I hope the prednisone helps a lot and helps soon. Take care.
Hi I completely understand the scared, I am still in denial, although since being on here this week, my denial is slipping away.
Managing your psa is much harder when you have children because of the busyness! I have 2 hectic little boys but I think they keep me going.
I was on MXT for about 5 years and last year I was taking it with Lefludomide and I didn't loose weight but I lost hair! I've stopped taking both now because of my appalling liver function which made me feel very ill for a few months.
I am now waiting for approval to go onto enbrel and also quite scared because of the side effects etc.
I guess my point is that yes the meds are scary but until you have until you have your skin and arthritis under control you are going to keep heading in the wrong direction and hopefully the mxt will help and you will get some relief soon.
I've been on MTX for over a year now and other than fatigue after dosing and occasional nausea I've been fine. To be honest I would be more concerned to be on steroids as they can cause a lot of problems long term, short bursts are better, but to me they are big guns that should be handled very very carefully.
My P was best helped by UVB therapy and the topical cream dovobet together (after 30 years of various lotions and potions that didn't work) but we are also different what works for some doesn't for others.
I'm primarily on MTX for the joint problems but it does also help the few areas of P that returned last year
good luck with the MTX you will be closely monitored, more so than the steroid in my experience x
I just took my second dose of mtx today. I found that having honey cinnamon tea with a little ginger syrup helps with the nausea........ hot water, honey, cinnamon and ginger if you have it mix together and sip. That's it... As for the drug being scary, the way I look at it is this. I have been in so much pain with no answers for almost 15 years that I am relieved to finally have an answer that doesn't include your fat, and its in your head that I will do just about anything to get my life back. Get your blood checked and monitor yourself. You are the best judge of you and how things are working for you.........
I hate being on a steroid and am definitely concerned about it. But my dr really wants to get the P under control ASAP and MTX takes about eight weeks to kick in. Hopefully this will help me go onto remission,
Louise Hoy said:
I’ve been on MTX for over a year now and other than fatigue after dosing and occasional nausea I’ve been fine. To be honest I would be more concerned to be on steroids as they can cause a lot of problems long term, short bursts are better, but to me they are big guns that should be handled very very carefully.
My P was best helped by UVB therapy and the topical cream dovobet together (after 30 years of various lotions and potions that didn’t work) but we are also different what works for some doesn’t for others.
I’m primarily on MTX for the joint problems but it does also help the few areas of P that returned last year
good luck with the MTX you will be closely monitored, more so than the steroid in my experience x
I know how you feel. I just recently went through a tough time with it all. Between the meds and the pain and then the fear, it can be hard to keep it together. Mtx may work well for you...I've heard many say that it does.
Didn't for me. There's only one way to find out. I hope the Pretnisone helps give you some relief. I think most find out pretty quick for you so it can only get better.
Thanks Gardener for your reply. It 's very helpful. Gardener said:
I'm sorry that all of this seems so scary. I think it does for most of us until we jump in and do it, and then it becomes part of life's routine. MTX has been the one drug so far that has really alleviated my symptoms, so I'm very glad that I'm taking it. Like Lucia, I found that it took a number of weeks for me to see a major improvement, but after some weeks of step-by-step improvement, I did hit the majors in terms of pain relief and disappearance of swelling. Enbrel taken with it has not helped me, so I am going to be starting Humira. I was anxious about starting Enbrel, too, but I had absolutely no problems or side effects from it.
When I get into the mood for reading medical journal articles, I read that a biologic like Enbrel or Humira or one of the others works better when a person also takes Enbrel and that MTX works better when you take a biologic, too. And the measurement of "better" is across a lot of scales. Do you report feeling better? Are there fewer inflammatory markers in your blood? Does your doctor count fewer inflamed, painful joints? Are you able to do more activities of daily living - as in last week it was hard to reach behind your head and zip up a zipper and this week it's a snap? So I think the measures of "better" are good, reality-based ones. I hope very much that the added meds help you both. I wish that I had just jumped in earlier and started taking them, instead of worrying about possible side effects. When I sat down and did the math, the actual NUMBER of people who had any kind of serious side effects was very low. If you read that 2% of people who take drug X grow horns, that sounds scary. But if you look at how many people were in the study and it was 2,000, then one person out of a thousand grew horns. So your risk of being that one person is not high.
Lucky Mama, I hope the prednisone helps a lot and helps soon. Take care.
I was on mtx for more than half a yr, and it worked for pretty fast for me, after just a couple months of taking it. Im switching to enbrel as per the advice pf my rheumie because he says it is a better drug to control the disease, to prevent damage and disability. My experience on mtx was smooth. My blood work over 6 mths always came back well. No issues there. I had no side effects on mtx. My dosage was 15mg per week. It worked for me too for the most part. to my satisfaction anyways lol. But remember everyone has different reactions, side effects and success rates with certain drugs, not everyone is the same. As I mentioned I'm switching to just enbrel and leaving mtx behind. I dont need to use both. I just hope enbrel will work for me , as well as mtx or better. Im happy that i dont have to be on mtx and enbrel.
Well, I have been on MTX for almost 2 years, and I still feel quite crappy, but was told I would feel even worse without it. My psoriasis is still problematic and I still have alot of pain and stiffness. I just take it one day at a time.
I've been avoiding MXT for two years now. This past fall my knees started hurting, they still do, it's ahrd to move around without pain. My Rhumy had me do X-rays, as my toes are all swollen and slightly curved and my right pinky finger is all swollen and sore.
Anyway the X-ray showed no sign in my knees of arthritis, I've been icing them and going for massages, but nothing is relieving the pain, so i'm thinking it is PsA in my knees. The right knee is swollen, it did go down, but has come back, I think do to going to a massage person who may have aggrivated it. My left arch in my foot is painful as well. It is hard to sit for long periods.
I've been prescribed MXT and was suppose to start taking it, but I am afraid of the side effects. My wife's friend's mother was on Biologics and now has developed leukaemia in the blood, she is searching for a bone marrow donor. So hearing that scares me.
I've started ayurvedic supplements, there is a whole chapter in this book about Rhuemitoid Arthritis, which I'm trying to follow, as it is similar to PsA.
has anyone tried an alternative to MXT, My fear is starting it and it doesn't help but I've messed up my insides.
Leukemia is not a known SE of the Biologics. There are a number of alternatives to MTX. None (including MTX) are as harmful as the "alternatives" to the DMARDs and Biologics including (especially) the "supplements claiming to treat or cure. The don't if they did we wouldn't have to buy a self published book to learn about them. They would be in the front row at Wal-mart (who NEVER misses a profit opportunity)
Instaflex is a combination a bunch of stuff:
Glucosamine Sulfate 1,500 mg
Methylsulfonlylmethane (MSM) 500 mg
White Willow Bark Extract 250 mg (Standardized to 15% salicin)
Ginger Root Concentrate 4:1 250 mg
Boswellia Serrata Extract 125 mg (Standardized to 65% boswellic acid)
Turmeric Root Extract 50 mg (Standardized to 95% curcumin)
please clarify. You mentioned that your xray didnt show signs of arthritis in your knees. And you are thinking it's PsA but PsA is arthritis? Or am I missing something? Please let me know. Im still learning about PsA, My dr has recently decided to diagnose me with it after almost 1 yr thinking it was RA. So Im new to the condition and what's it about. I also dont think any of these drugs are good in the long term. It's a risk. I was so scared of starting Enbrel for this reason but I am more relaxed about it now. It was the same when I used to take mtx. Had to face it. I admitted to myself I have a disease and I need to control it or I can suffer frm it in the present, suffer worse in the yrs to come and get damage and become disabled in the future... I am 34 and I guess I am willing to take the risks now. Everyone reacts to these medications differently too remember. They are all strong medications with SE but if you need them what do you do!!! Not everyone improves on holistic treatment,diet, & exercise alone.Or through prayer lol. When my dr told me I should switch to enbrel I was serious about finding out alternative treatments....just so i could avoid it..but after i did my own research they are all bad. Sorry to say. On mtx I got no SE; serious or minor...but perhaps if i was on it longer and in the long term maybe I could have developed a serious SE linked to it..I dont know..it's hard to say... not everyone does. It's a risk.
tb said:
I've been avoiding MXT for two years now. This past fall my knees started hurting, they still do, it's ahrd to move around without pain. My Rhumy had me do X-rays, as my toes are all swollen and slightly curved and my right pinky finger is all swollen and sore.
Anyway the X-ray showed no sign in my knees of arthritis, I've been icing them and going for massages, but nothing is relieving the pain, so i'm thinking it is PsA in my knees. The right knee is swollen, it did go down, but has come back, I think do to going to a massage person who may have aggrivated it. My left arch in my foot is painful as well. It is hard to sit for long periods.
I've been prescribed MXT and was suppose to start taking it, but I am afraid of the side effects. My wife's friend's mother was on Biologics and now has developed leukaemia in the blood, she is searching for a bone marrow donor. So hearing that scares me.
I've started ayurvedic supplements, there is a whole chapter in this book about Rhuemitoid Arthritis, which I'm trying to follow, as it is similar to PsA.
has anyone tried an alternative to MXT, My fear is starting it and it doesn't help but I've messed up my insides.
I have PsA in my toes and fingers, slowly been affecting each digit over the last few years. In late October my knees seized up. My left knee has been swollen and I can't fully bend it, it is painful all the time. My X-rays didn't show arthritis in my knees, but the pain is constant. I've had massage therapy for the knees, but they are still the same, so, I'm thinking it might be early stages of PsA in my knee. I also have a constant pain in the arch of my foot. Does any of this sound familiar to anyone that if is PsA?
beecreek said:
please clarify. You mentioned that your xray didnt show signs of arthritis in your knees. And you are thinking it's PsA but PsA is arthritis? Or am I missing something? Please let me know. Im still learning about PsA, My dr has recently decided to diagnose me with it after almost 1 yr thinking it was RA. So Im new to the condition and what's it about. I also dont think any of these drugs are good in the long term. It's a risk. I was so scared of starting Enbrel for this reason but I am more relaxed about it now. It was the same when I used to take mtx. Had to face it. I admitted to myself I have a disease and I need to control it or I can suffer frm it in the present, suffer worse in the yrs to come and get damage and become disabled in the future... I am 34 and I guess I am willing to take the risks now. Everyone reacts to these medications differently too remember. They are all strong medications with SE but if you need them what do you do!!! Not everyone improves on holistic treatment,diet, & exercise alone.Or through prayer lol. When my dr told me I should switch to enbrel I was serious about finding out alternative treatments....just so i could avoid it..but after i did my own research they are all bad. Sorry to say. On mtx I got no SE; serious or minor...but perhaps if i was on it longer and in the long term maybe I could have developed a serious SE linked to it..I dont know..it's hard to say... not everyone does. It's a risk.
tb said:
I've been avoiding MXT for two years now. This past fall my knees started hurting, they still do, it's ahrd to move around without pain. My Rhumy had me do X-rays, as my toes are all swollen and slightly curved and my right pinky finger is all swollen and sore.
Anyway the X-ray showed no sign in my knees of arthritis, I've been icing them and going for massages, but nothing is relieving the pain, so i'm thinking it is PsA in my knees. The right knee is swollen, it did go down, but has come back, I think do to going to a massage person who may have aggrivated it. My left arch in my foot is painful as well. It is hard to sit for long periods.
I've been prescribed MXT and was suppose to start taking it, but I am afraid of the side effects. My wife's friend's mother was on Biologics and now has developed leukaemia in the blood, she is searching for a bone marrow donor. So hearing that scares me.
I've started ayurvedic supplements, there is a whole chapter in this book about Rhuemitoid Arthritis, which I'm trying to follow, as it is similar to PsA.
has anyone tried an alternative to MXT, My fear is starting it and it doesn't help but I've messed up my insides.
I think it was Humira that she was taking. tntlamb what are you on? Mtx? have you had any improvement and have you had any side effects? Thanks for any input .
tntlamb said:
Leukemia is not a known SE of the Biologics. There are a number of alternatives to MTX. None (including MTX) are as harmful as the "alternatives" to the DMARDs and Biologics including (especially) the "supplements claiming to treat or cure. The don't if they did we wouldn't have to buy a self published book to learn about them. They would be in the front row at Wal-mart (who NEVER misses a profit opportunity)
Instaflex is a combination a bunch of stuff:
Glucosamine Sulfate 1,500 mg
Methylsulfonlylmethane (MSM) 500 mg
White Willow Bark Extract 250 mg (Standardized to 15% salicin)
Ginger Root Concentrate 4:1 250 mg
Boswellia Serrata Extract 125 mg (Standardized to 65% boswellic acid)
Turmeric Root Extract 50 mg (Standardized to 95% curcumin)
Have u rec'd an MRI for your knee? Can you? They are more accurate, detailed for people in the early stages. I am in early stages of PsA and was diagnosed through an MRI. I think xrays show more for ppl who are more advanced and have damage perhaps. that's what Ive heard.
tb said:
I have PsA in my toes and fingers, slowly been affecting each digit over the last few years. In late October my knees seized up. My left knee has been swollen and I can't fully bend it, it is painful all the time. My X-rays didn't show arthritis in my knees, but the pain is constant. I've had massage therapy for the knees, but they are still the same, so, I'm thinking it might be early stages of PsA in my knee. I also have a constant pain in the arch of my foot. Does any of this sound familiar to anyone that if is PsA?
beecreek said:
please clarify. You mentioned that your xray didnt show signs of arthritis in your knees. And you are thinking it's PsA but PsA is arthritis? Or am I missing something? Please let me know. Im still learning about PsA, My dr has recently decided to diagnose me with it after almost 1 yr thinking it was RA. So Im new to the condition and what's it about. I also dont think any of these drugs are good in the long term. It's a risk. I was so scared of starting Enbrel for this reason but I am more relaxed about it now. It was the same when I used to take mtx. Had to face it. I admitted to myself I have a disease and I need to control it or I can suffer frm it in the present, suffer worse in the yrs to come and get damage and become disabled in the future... I am 34 and I guess I am willing to take the risks now. Everyone reacts to these medications differently too remember. They are all strong medications with SE but if you need them what do you do!!! Not everyone improves on holistic treatment,diet, & exercise alone.Or through prayer lol. When my dr told me I should switch to enbrel I was serious about finding out alternative treatments....just so i could avoid it..but after i did my own research they are all bad. Sorry to say. On mtx I got no SE; serious or minor...but perhaps if i was on it longer and in the long term maybe I could have developed a serious SE linked to it..I dont know..it's hard to say... not everyone does. It's a risk.
tb said:
I've been avoiding MXT for two years now. This past fall my knees started hurting, they still do, it's ahrd to move around without pain. My Rhumy had me do X-rays, as my toes are all swollen and slightly curved and my right pinky finger is all swollen and sore.
Anyway the X-ray showed no sign in my knees of arthritis, I've been icing them and going for massages, but nothing is relieving the pain, so i'm thinking it is PsA in my knees. The right knee is swollen, it did go down, but has come back, I think do to going to a massage person who may have aggrivated it. My left arch in my foot is painful as well. It is hard to sit for long periods.
I've been prescribed MXT and was suppose to start taking it, but I am afraid of the side effects. My wife's friend's mother was on Biologics and now has developed leukaemia in the blood, she is searching for a bone marrow donor. So hearing that scares me.
I've started ayurvedic supplements, there is a whole chapter in this book about Rhuemitoid Arthritis, which I'm trying to follow, as it is similar to PsA.
has anyone tried an alternative to MXT, My fear is starting it and it doesn't help but I've messed up my insides.
So you started the Enbrel before the MXT? My doctor said that the insurance companies (I have Blue Cross/Blue Shield) like for them to try MXT first before moving on to the Biologics such as Humira and Enbrel. I've read a LOT of great things about the Enbrel. My doctor doesn't feel I'll be on the MXT long and wants to move me to one of the others as soon as possible. Nonetheless, I sincerely hope the MXT works well for you. It's all about each of us finding what works for us, no matter the medicine or combination of medicines!! Here's to less pain and inflammation!! Best wishes!
but also lost a lot of hair :(. I was supposed to do this for twelve weeks to get the P under control. It really didn’t get too much better but my legs and elbows did clear up and the patch on my head is gone . Then I stopped after 12 weeks about three weeks ago and BAM! My hand is horrible, my feet are much worse and worst of all my PsA is rearing its ugly head and my hands are swollen and my left knee and hip are really taking to me.