I'm feeling like I'm ready to stop all the meds. I increased the sulfasalazine on Tuesday to 3 pills and have had worse nausea then ever! It's even worse then when I started the MTX and increased it.
I had to leave my sisters 50thBirthday dinner, even before dinner was served because I was so sick. Today sick again and currently having a flare in my left foot (ankle).
I called the pharmacist and asked his advice as it's Friday, both my Rheumy and Doctor are not available. He recommended cutting the dose back to two, take an extra folic acid and to call my Rheumy on Tuesday when her office is opened to notify her. I'm feeling like this too won't work and sick of being sick! My husband and son are gone away for the weekend so hopefully I can manage on my own!
Thanks for listening...feeling the need to vent! Totally frustrated, angry and feeling hopeless :-(
One more thing...I asked if I could take celebrex but I'm now wondering if T3's would be alright? I'm managing so far but who knows how brutal this flare is going to get.....
First, I am so sorry that you are struggling! I hate being sick at my stomach too.
Extra folic acid sounds like a good place to start. When I first started methotrexate, I mega dosed the folic acid for a month. I took 5mgs and then tapered down to the lowest effective dose. I believe that is what kept me from having any side effects. I’ve never had nausea or any other symptoms from it, and I think the folic acid is what saved me. For the nausea, my pharmacist recommends ginger candies. His shop is in the same building as a fertility center, so he stocks all sorts of sugar free ginger hard candies. They must work because he is constantly restocking! There is also a prescription drug called Zofran that is wonderful. It comes in several forms, but my favorite is a tablet that dissolves in your mouth. It works quickly and you don’t have to try to swallow it. There is are less pricey drugs, but this one carries the least side effects. Emetrol is an over the counter liquid for nausea. It works ok, but it comes in cherry or lemon. I’m not a fan of wither of those flavors, so it’s hard for me to get down when I’m already sick at my stomach.
If you already have a tender tummy, be careful with the Celebrex. It isn’t as hard on the stomach as some of the other NSAIDs, but I have met people who are sensitive to it. The same is true for the Tylenol 3. With either, make sure you eat a little something first, even if its just crackers or a banana.
I know this sounds awful and insensitive, but make sure that you keep moving a little each day. Nothing major, of course, but a little walking will help with that pain. Just make sure you take your drugs first!
I hope you start feeling better soon. Take care of yourself.
I’d be careful with anything that is hard on the stomach. Celebrex works well with taking the edge off, but for me it’s limited to hips and knees and takes a good week or two to work properly. I’m now on an acid reducer with the celebrex and seems to be ok.
Thanks GrumpyCat :-) It's the sulfasalazine causing the nausea, not the MTX. I had some nausea with the MTX but since increasing the sulf to 3 pills the nausea has been unbearable. I cut it back to 2 pills tonight and am trying to manage taking no pain pills however the pain is at about a 9 and I'm pretty sure I won't sleep tonight. I'm using crutches to get around now as I can't put weight on my foot. Hopefully tomorrow is a better day. My husband and son are out of town so I'm on my own this time. I have some ginger tea so will make a cup of that right now!
GrumpyCat said:
First, I am so sorry that you are struggling! I hate being sick at my stomach too.
Extra folic acid sounds like a good place to start. When I first started methotrexate, I mega dosed the folic acid for a month. I took 5mgs and then tapered down to the lowest effective dose. I believe that is what kept me from having any side effects. I've never had nausea or any other symptoms from it, and I think the folic acid is what saved me. For the nausea, my pharmacist recommends ginger candies. His shop is in the same building as a fertility center, so he stocks all sorts of sugar free ginger hard candies. They must work because he is constantly restocking! There is also a prescription drug called Zofran that is wonderful. It comes in several forms, but my favorite is a tablet that dissolves in your mouth. It works quickly and you don't have to try to swallow it. There is are less pricey drugs, but this one carries the least side effects. Emetrol is an over the counter liquid for nausea. It works ok, but it comes in cherry or lemon. I'm not a fan of wither of those flavors, so it's hard for me to get down when I'm already sick at my stomach.
If you already have a tender tummy, be careful with the Celebrex. It isn't as hard on the stomach as some of the other NSAIDs, but I have met people who are sensitive to it. The same is true for the Tylenol 3. With either, make sure you eat a little something first, even if its just crackers or a banana.
I know this sounds awful and insensitive, but make sure that you keep moving a little each day. Nothing major, of course, but a little walking will help with that pain. Just make sure you take your drugs first! :-)
I hope you start feeling better soon. Take care of yourself.
Thanks mataribot, I have been using celebrex for years with out any issues. Since I started MTX I decided I would try and cope with out the celebrex as my body is already having enough meds going in it. For me the Celebrex works after about an hour of taking it and I have only used it when needed. I managed my PSA for all of my 30's using only Celebrex when needed, however the disease has increased and I felt there was no option other then to try stronger meds. Unfortunately the current meds are not working :-(
mataribot said:
I'd be careful with anything that is hard on the stomach. Celebrex works well with taking the edge off, but for me it's limited to hips and knees and takes a good week or two to work properly. I'm now on an acid reducer with the celebrex and seems to be ok.
I take 2 sulphasalazines per day, 2 folic acid (1mg tablets) per day, 2 sulindacs per day, and a 20 mg mtx injection once a week for my PsA. And have had to adjust up and down over 11 yrs for nausea and pain that is always changing. Also take tramadol for pain. I would take only 1 sulphasalazine per day until you see your doctor, and if the nausea stays severe, stop it until you talk with your doctor. I think it should be gradual to get up to three a day. There’s really no need to stay this miserable. I eat saltines or Ginger Snaps and drink diet coke or pepsi to ease the nausea some. Hope you have some relief real soon.
I got where the nausea was coming from. Sometimes folic acid can help with both of the drugs…they have a lot if things in common. Including this: gradual increases are better, and for many the side effects fade with time. Nausea can be as crippling as pain. It stinks that you are struggling with it! See if your doc agrees with tapering up on the Sulfa, increasing the folic acid and giving you SOMETHING for nausea to take as needed. It may be that you truly won’t tolerate it, but it would be nice to give the drug a chance to work without making you feel awful. Slow and steady might be the key to that.
TaraLynn said:
Thanks GrumpyCat It’s the sulfasalazine causing the nausea, not the MTX. I had some nausea with the MTX but since increasing the sulf to 3 pills the nausea has been unbearable. I cut it back to 2 pills tonight and am trying to manage taking no pain pills however the pain is at about a 9 and I’m pretty sure I won’t sleep tonight. I’m using crutches to get around now as I can’t put weight on my foot. Hopefully tomorrow is a better day. My husband and son are out of town so I’m on my own this time. I have some ginger tea so will make a cup of that right now!
GrumpyCat said:
First, I am so sorry that you are struggling! I hate being sick at my stomach too.
Extra folic acid sounds like a good place to start. When I first started methotrexate, I mega dosed the folic acid for a month. I took 5mgs and then tapered down to the lowest effective dose. I believe that is what kept me from having any side effects. I’ve never had nausea or any other symptoms from it, and I think the folic acid is what saved me. For the nausea, my pharmacist recommends ginger candies. His shop is in the same building as a fertility center, so he stocks all sorts of sugar free ginger hard candies. They must work because he is constantly restocking! There is also a prescription drug called Zofran that is wonderful. It comes in several forms, but my favorite is a tablet that dissolves in your mouth. It works quickly and you don’t have to try to swallow it. There is are less pricey drugs, but this one carries the least side effects. Emetrol is an over the counter liquid for nausea. It works ok, but it comes in cherry or lemon. I’m not a fan of wither of those flavors, so it’s hard for me to get down when I’m already sick at my stomach.
If you already have a tender tummy, be careful with the Celebrex. It isn’t as hard on the stomach as some of the other NSAIDs, but I have met people who are sensitive to it. The same is true for the Tylenol 3. With either, make sure you eat a little something first, even if its just crackers or a banana.
I know this sounds awful and insensitive, but make sure that you keep moving a little each day. Nothing major, of course, but a little walking will help with that pain. Just make sure you take your drugs first!
I hope you start feeling better soon. Take care of yourself.
I got where the nausea was coming from. Sometimes folic acid can help with both of the drugs…they have a lot if things in common. Including this: gradual increases are better, and for many the side effects fade with time. Nausea can be as crippling as pain. It stinks that you are struggling with it! See if your doc agrees with tapering up on the Sulfa, increasing the folic acid and giving you SOMETHING for nausea to take as needed. It may be that you truly won’t tolerate it, but it would be nice to give the drug a chance to work without making you feel awful. Slow and steady might be the key to that.
TaraLynn said:
Thanks GrumpyCat It’s the sulfasalazine causing the nausea, not the MTX. I had some nausea with the MTX but since increasing the sulf to 3 pills the nausea has been unbearable. I cut it back to 2 pills tonight and am trying to manage taking no pain pills however the pain is at about a 9 and I’m pretty sure I won’t sleep tonight. I’m using crutches to get around now as I can’t put weight on my foot. Hopefully tomorrow is a better day. My husband and son are out of town so I’m on my own this time. I have some ginger tea so will make a cup of that right now!
GrumpyCat said:
First, I am so sorry that you are struggling! I hate being sick at my stomach too.
Extra folic acid sounds like a good place to start. When I first started methotrexate, I mega dosed the folic acid for a month. I took 5mgs and then tapered down to the lowest effective dose. I believe that is what kept me from having any side effects. I’ve never had nausea or any other symptoms from it, and I think the folic acid is what saved me. For the nausea, my pharmacist recommends ginger candies. His shop is in the same building as a fertility center, so he stocks all sorts of sugar free ginger hard candies. They must work because he is constantly restocking! There is also a prescription drug called Zofran that is wonderful. It comes in several forms, but my favorite is a tablet that dissolves in your mouth. It works quickly and you don’t have to try to swallow it. There is are less pricey drugs, but this one carries the least side effects. Emetrol is an over the counter liquid for nausea. It works ok, but it comes in cherry or lemon. I’m not a fan of wither of those flavors, so it’s hard for me to get down when I’m already sick at my stomach.
If you already have a tender tummy, be careful with the Celebrex. It isn’t as hard on the stomach as some of the other NSAIDs, but I have met people who are sensitive to it. The same is true for the Tylenol 3. With either, make sure you eat a little something first, even if its just crackers or a banana.
I know this sounds awful and insensitive, but make sure that you keep moving a little each day. Nothing major, of course, but a little walking will help with that pain. Just make sure you take your drugs first!
I hope you start feeling better soon. Take care of yourself.
I had terrible nausea with sulfasalazine that came on all of a sudden. I had been on four pills a day for a while and I started to feel worse and worse. My rheumy took me off it. He had added it as a supplement to Enbrel because I had a bad reaction to MTX (first the pills made me nauseated me then the shots debilitated me the day after). We decided that such a high dose meant Enbrel wasn’t working for me any longer.
That said, I learned to love phenergan for nausea. I tried zofran with this latest round of nauseau (as it is non-drowsy) and it caused intense hyperactivity and anxiety. Believe me, wiggling and jiggling all night was no fun at all. I can endorse ginger cookies and candies, and I have found that glutino strawberry bars (think gluten free nutri-grain bars) have just the consistency to seal off my stomach and prevent me from throwing up while I try other things to sleep off the nausea.
Good luck making it through the weekend until you can contact your rheumatologist. You have my sympathy!
Thanks Pain! I have cut back to two a day, she wanted me to increase to 4 daily. I may try 2 again tonight. I'm also going to increase the folic acid today as the pharmacist said I could and it's comforting to know that you are taking 2mg also. I am drinking a ton of ginger tea today and it really is helping with the nausea! I took a Tylenol 3 last night before bed and did alright. My ankle is still swollen and the base of my big toe is also now swelling along with the daily pain of hands and hips. I'm just chilling on the couch for the day and trying to stay off my feet as much as possible. Thanks again :-)
Pain said:
I take 2 sulphasalazines per day, 2 folic acid (1mg tablets) per day, 2 sulindacs per day, and a 20 mg mtx injection once a week for my PsA. And have had to adjust up and down over 11 yrs for nausea and pain that is always changing. Also take tramadol for pain. I would take only 1 sulphasalazine per day until you see your doctor, and if the nausea stays severe, stop it until you talk with your doctor. I think it should be gradual to get up to three a day. There's really no need to stay this miserable. I eat saltines or Ginger Snaps and drink diet coke or pepsi to ease the nausea some. Hope you have some relief real soon.
Thanks Grumpycat :-) I found some ginger tea and have been drinking it like water! It's totally helping with the nausea so I will try and take two pills again tonight. The increased nausea may also be because of the flare? I have had some nausea with flares in the past however the daily pain has increased and I have more bad days then good. I'm in total slow mode today....just relaxing the day away. The boys are out of town so it's quite today :-)
GrumpyCat said:
I got where the nausea was coming from. :-) Sometimes folic acid can help with both of the drugs...they have a lot if things in common. Including this: gradual increases are better, and for many the side effects fade with time. Nausea can be as crippling as pain. It stinks that you are struggling with it! See if your doc agrees with tapering up on the Sulfa, increasing the folic acid and giving you SOMETHING for nausea to take as needed. It may be that you truly won't tolerate it, but it would be nice to give the drug a chance to work without making you feel awful. Slow and steady might be the key to that.
TaraLynn said:
Thanks GrumpyCat :-) It's the sulfasalazine causing the nausea, not the MTX. I had some nausea with the MTX but since increasing the sulf to 3 pills the nausea has been unbearable. I cut it back to 2 pills tonight and am trying to manage taking no pain pills however the pain is at about a 9 and I'm pretty sure I won't sleep tonight. I'm using crutches to get around now as I can't put weight on my foot. Hopefully tomorrow is a better day. My husband and son are out of town so I'm on my own this time. I have some ginger tea so will make a cup of that right now!
GrumpyCat said:
First, I am so sorry that you are struggling! I hate being sick at my stomach too.
Extra folic acid sounds like a good place to start. When I first started methotrexate, I mega dosed the folic acid for a month. I took 5mgs and then tapered down to the lowest effective dose. I believe that is what kept me from having any side effects. I've never had nausea or any other symptoms from it, and I think the folic acid is what saved me. For the nausea, my pharmacist recommends ginger candies. His shop is in the same building as a fertility center, so he stocks all sorts of sugar free ginger hard candies. They must work because he is constantly restocking! There is also a prescription drug called Zofran that is wonderful. It comes in several forms, but my favorite is a tablet that dissolves in your mouth. It works quickly and you don't have to try to swallow it. There is are less pricey drugs, but this one carries the least side effects. Emetrol is an over the counter liquid for nausea. It works ok, but it comes in cherry or lemon. I'm not a fan of wither of those flavors, so it's hard for me to get down when I'm already sick at my stomach.
If you already have a tender tummy, be careful with the Celebrex. It isn't as hard on the stomach as some of the other NSAIDs, but I have met people who are sensitive to it. The same is true for the Tylenol 3. With either, make sure you eat a little something first, even if its just crackers or a banana.
I know this sounds awful and insensitive, but make sure that you keep moving a little each day. Nothing major, of course, but a little walking will help with that pain. Just make sure you take your drugs first! :-)
I hope you start feeling better soon. Take care of yourself.
Thanks you janeatiu! The ginger tea is really helping! I'm sorry to here that you had bad side effects with the MTX and Enbrel! I am wanting to try Enbrel next and hope that I do alright with it. I had a little nausea with the MTX when I started but it was nothing compared to the nausea I have had the last few days. I'm spending today relaxing and so far the pain has been fairly manageable. Thanks again :-)
janeatiu said:
Hi TaraLynn, I had terrible nausea with sulfasalazine that came on all of a sudden. I had been on four pills a day for a while and I started to feel worse and worse. My rheumy took me off it. He had added it as a supplement to Enbrel because I had a bad reaction to MTX (first the pills made me nauseated me then the shots debilitated me the day after). We decided that such a high dose meant Enbrel wasn't working for me any longer.
That said, I learned to love phenergan for nausea. I tried zofran with this latest round of nauseau (as it is non-drowsy) and it caused intense hyperactivity and anxiety. Believe me, wiggling and jiggling all night was no fun at all. I can endorse ginger cookies and candies, and I have found that glutino strawberry bars (think gluten free nutri-grain bars) have just the consistency to seal off my stomach and prevent me from throwing up while I try other things to sleep off the nausea.
Good luck making it through the weekend until you can contact your rheumatologist. You have my sympathy!
I am new to this site but a pro when it comes to this nasty disease. I feel terrible for you having suffered myself for over 30 years. Strangely I am having one of the worse flare ups I have ever had so I feel your pain. I take a lot of pain meds and do nothing. and convince myself it will pass soon. Hang in there! I am getting my Remicade Infusion tomorrow so I am focusing on how good I will feel after. Vent any time, believe me I have done my share as well!
Hi Erinsmum and Welcome to the site :-) Thank you for your kind words, today is a somewhat better day! Always telling myself this too will pass...helps to get through the bad days. I'm finding the pain levels hard some days but they tend to go down fast, however the swelling is lasting longer then it use to. Hope you're feeling better today after your infusion!
Erinsmum said:
I am new to this site but a pro when it comes to this nasty disease. I feel terrible for you having suffered myself for over 30 years. Strangely I am having one of the worse flare ups I have ever had so I feel your pain. I take a lot of pain meds and do nothing. and convince myself it will pass soon. Hang in there! I am getting my Remicade Infusion tomorrow so I am focusing on how good I will feel after. Vent any time, believe me I have done my share as well!
Thanks Louise Hoy :-) today is a better day. I didn't increase the Sulfa last night but probably will try it again tonight. Thanks for your kind words and hugs <3
Louise Hoy said:
Hi there, I'm sorry you are feeling so nauseous......I do sympathize, been there and its no fun at all. Hope you get some relief soon, big hug x
I’m glad you are doing a little better today. But the inflamation–ugh–. Can you tolerate nsaids? My rheumy still insists that I take mine (sulindac) twice a day every day during inflamation flares, along with sulphasa, folic acid. So far my bloodwork has been ok. I always take with food. I know how very, very painful inflamation is, so I hope your combination starts working soon.
Pain, I can tolerate naiads and have Celebrex here. I wasn't sure if I could continue using them, last discussion with my doctor was prior to adding sulfa and it was decided that I only use them if it's really needed because we wanted to see how the treatment worked.
The crazy part is...I can have a ton of inflammation and have blood work that show's no inflammation. I've been this way for years and have only showed a slight increase a few times. The only blood work that shows anything has been my iron, it's been low for years and the Rheumy told me that was part of the disease. I had a slightly elevated R Factor a few months back, they did another test and again that showed negative.
Pain said:
I'm glad you are doing a little better today. But the inflamation--ugh--. Can you tolerate nsaids? My rheumy still insists that I take mine (sulindac) twice a day every day during inflamation flares, along with sulphasa, folic acid. So far my bloodwork has been ok. I always take with food. I know how very, very painful inflamation is, so I hope your combination starts working soon.
Yes, TaraLynn, it’s crazy how blood work can appear. For the longest time, I had only a very slightly elevated CRP. Doc said that it was because my frame is so generously upholstered. I obsessed about my so-called “OA” being inflammatory (i.e. PsA) and she told me that I needed to worry less, because my inflammation markers were not out of line. Then my hips went horribly and rapidly wrong. When I had THR surgery, I lost almost 2 L of blood because the inflammation in my pelvis was so extreme that they had to work very fast to stop the bleeding. The blood test after surgery was the first one showing any significant inflammation. Go figure.
I don’t think blood work tells the whole story of the state of our PsA.
Sometimes folic acid can help with both of the drugs…they have a lot if things in common. Including this: gradual increases are better, and for many the side effects fade with time. Nausea can be as crippling as pain. It stinks that you are struggling with it! See if your doc agrees with tapering up on the Sulfa, increasing the folic acid and giving you SOMETHING for nausea to take as needed. It may be that you truly won’t tolerate it, but it would be nice to give the drug a chance to work without making you feel awful. Slow and steady might be the key to that.
I obsessed about my so-called “OA” being inflammatory (i.e. PsA) and she told me that I needed to worry less, because my inflammation markers were not out of line. Then my hips went horribly and rapidly wrong. When I had THR surgery, I lost almost 2 L of blood because the inflammation in my pelvis was so extreme that they had to work very fast to stop the bleeding. The blood test after surgery was the first one showing any significant inflammation. Go figure.