I have been educated to the max. Thanks everyone! What really amazing me though is that a lot of people can work. Me on the other hand can not move, barely walk, right shoulder is impinged, both hands and wrists do not work and I am stiff all over. I feel like I have accomplished something if I can get out of bed! Will it ever get any better.
Methotrexate can indeed do the job alone, but remember we all metabolize chemicals differently therefore it may not be working for you. I was on it and after several days of being titrated up to six tablets I experienced marked relief of pain and inflammation. However, shortly thereafter very bad side effects occured and I had to stop the drug. My insurance, an HMO ,says that before you can receive any biologic meds you must first try the cheaper drugs like Methotrexate because biologics are extremely expensive. Maybe that’s what your doctor is doing. It sounds to me like you’re one of the ones Methotrexate doesn’t work for.
I’ m sorry your pain is so bad and like yourself I am forced to live with it until approved for the biologics. The combination if fibromyalgia and psoriatic arthritis is the most diffucult challenge in my life so far, but I must believe that there is some help out there .
Not at all. After taking Sulfasalazide and hydroxychoroquine ( having allergic reactions to them) My doc has me on ridaura. (oral gold) it takes a few months to kick in, however I am getting relief. The aches and fatigue are still there, but tolerable. I am able to do a bit more before I hit the wall.
I hope this helps!
lucia said:Thank you for your encouragement! Do you mind me asking what you are doing for your PsA now?
Diz254 said:I was on Metho for 6 months and all I did was vomit. I stopped taking it and told the doc that this stuff wasn't working for me. Several weeks ago I posted an article stating that studies show metho is not as effective for psa as once thought. Tell your doctor you want to explore other options. Keep positive and stay strong!!
Sue
Like the other people who have responded, I am on MTX and am feeling worse, but I thought it was just me or just in my head. Like many others I am playing the game of taking MTX for insurance purposes and then I can move onto HUMERA. My Rhuemy told me upfront that MTX was not usefully for PSA but to get HUMERA covered I had to be on MTX for 12 weeks before they would approve the good stuff. They also have me on Naproxen and Vicodine, which takes the edge off but I still have a lot of pain. The pain is so very wearing, and I must continue to work as I am a widow and must provide for my insurance. Thanks for all the great feed back. I am really new to all this..
I know HMO's have a directive for the doctors to follow. My doctor knew my condition did not be "entertained" with the insurance redtape, so he made a plan. So many weeks for each medicine until I would get to "the real stuff", the right ones for me.
Susan said:
Methotrexate can indeed do the job alone, but remember we all metabolize chemicals differently therefore it may not be working for you. I was on it and after several days of being titrated up to six tablets I experienced marked relief of pain and inflammation. However, shortly thereafter very bad side effects occured and I had to stop the drug. My insurance, an HMO ,says that before you can receive any biologic meds you must first try the cheaper drugs like Methotrexate because biologics are extremely expensive. Maybe that's what your doctor is doing. It sounds to me like you're one of the ones Methotrexate doesn't work for.
I' m sorry your pain is so bad and like yourself I am forced to live with it until approved for the biologics. The combination if fibromyalgia and psoriatic arthritis is the most diffucult challenge in my life so far, but I must believe that there is some help out there .
Thank you Gelita and Susan. I cannot tell you how much I appreciate you replies. Susan I could not have said it better myself. I keep waiting to get better so I can get back to the old me. It scares me that it might not happen. I think this site is invaluable because we can encourage each other when times are tough. I know we need to have hope. I hope for a good day for us all!
I am relatively new too Michelle. Thanks for your reply. I too have to work because we need two incomes. I feel like I am getting worse too. For example the tops of shoulder are now involved and that is new. It is no in your head. I hope your pain is tolerable today!
Michelle said:
Like the other people who have responded, I am on MTX and am feeling worse, but I thought it was just me or just in my head. Like many others I am playing the game of taking MTX for insurance purposes and then I can move onto HUMERA. My Rhuemy told me upfront that MTX was not usefully for PSA but to get HUMERA covered I had to be on MTX for 12 weeks before they would approve the good stuff. They also have me on Naproxen and Vicodine, which takes the edge off but I still have a lot of pain. The pain is so very wearing, and I must continue to work as I am a widow and must provide for my insurance. Thanks for all the great feed back. I am really new to all this..
Thanks for your help! So glad you are getting relief. I hope it continues. I would cross my fingers for you but that's not possible this morning. Bad joke but you got to find humor where you can. Have a great day!
Diz254 said:.
Not at all. After taking Sulfasalazide and hydroxychoroquine ( having allergic reactions to them) My doc has me on ridaura. (oral gold) it takes a few months to kick in, however I am getting relief. The aches and fatigue are still there, but tolerable. I am able to do a bit more before I hit the wall.
I hope this helps!
lucia said:Thank you for your encouragement! Do you mind me asking what you are doing for your PsA now?
Diz254 said:I was on Metho for 6 months and all I did was vomit. I stopped taking it and told the doc that this stuff wasn't working for me. Several weeks ago I posted an article stating that studies show metho is not as effective for psa as once thought. Tell your doctor you want to explore other options. Keep positive and stay strong!!
Sue
Thanks Sharon!
Sharon99 said:
There is a really good presentation on all the meds in the members section of the spondilitis.org site too- they show really good data and comparisons- I am an engineer - so I liked to review all of the raw data to see if it substantiated what the docs where saying.
Hi,
I started on MTX in July 2011 and it took until December, and an increase to 17.5 mg, to start getting any relief from my symptoms and pain ...........I suspect my body is now getting too used to the MTX as I'm beginning to notice more pain and difficulty in movement. I have also been taking a low dose of Meloxicam as an anti inflammatory throughout. Unfortunately my next rheumatology app. is not until November and the Rheumatology nurses are unwilling to book me another appointment as they say my bloodwork is fine, but as I've never shown increased blood figures even when I was unable to dress myself at my lowest point, I'm not reassured. Here in the UK useage of drugs and their escalation is dependant on the NICE (National Institute of Clinical Excellence) guidlines which indicate that 2 DMARDs such as MTX need to be ineffective before starting a Biologic, so I possibly have a long way to go yet!
The advice I was first given was that MTX could take up to 6 months, with increase doses to work, so maybe it will work eventually for you, but when your suffering so much 6 months seems a very very long time!
I very rarely take pain meds (Tramadol plus co-codamol) as they dont seem to work and just make me dozy and give me a "I dont give a s**t" attitude, I emailed my boss once under the influence of the drugs lol!! something I won't be repeating!
Good luck and I hope you get some relief soon x
Louise I know what you mean about the bloodwork. my doctors say it isn't that important in determining severity of the disease. i do take pain meds but until it kicks in i want to scream. six months is a lifetime i agree. I am typing with one finger so excuse any typos!
Louise Hoy said:
Hi,
I started on MTX in July 2011 and it took until December, and an increase to 17.5 mg, to start getting any relief from my symptoms and pain ...........I suspect my body is now getting too used to the MTX as I'm beginning to notice more pain and difficulty in movement. I have also been taking a low dose of Meloxicam as an anti inflammatory throughout. Unfortunately my next rheumatology app. is not until November and the Rheumatology nurses are unwilling to book me another appointment as they say my bloodwork is fine, but as I've never shown increased blood figures even when I was unable to dress myself at my lowest point, I'm not reassured. Here in the UK useage of drugs and their escalation is dependant on the NICE (National Institute of Clinical Excellence) guidlines which indicate that 2 DMARDs such as MTX need to be ineffective before starting a Biologic, so I possibly have a long way to go yet!
The advice I was first given was that MTX could take up to 6 months, with increase doses to work, so maybe it will work eventually for you, but when your suffering so much 6 months seems a very very long time!
I very rarely take pain meds (Tramadol plus co-codamol) as they dont seem to work and just make me dozy and give me a "I dont give a s**t" attitude, I emailed my boss once under the influence of the drugs lol!! something I won't be repeating!
Good luck and I hope you get some relief soon x
My doctor keeps me ina low dose (5 mg) of steroids (prednisone) all the time, on top of all the other meds.
Louise Hoy said:
Hi,
I started on MTX in July 2011 and it took until December, and an increase to 17.5 mg, to start getting any relief from my symptoms and pain ...........I suspect my body is now getting too used to the MTX as I'm beginning to notice more pain and difficulty in movement. I have also been taking a low dose of Meloxicam as an anti inflammatory throughout. Unfortunately my next rheumatology app. is not until November and the Rheumatology nurses are unwilling to book me another appointment as they say my bloodwork is fine, but as I've never shown increased blood figures even when I was unable to dress myself at my lowest point, I'm not reassured. Here in the UK useage of drugs and their escalation is dependant on the NICE (National Institute of Clinical Excellence) guidlines which indicate that 2 DMARDs such as MTX need to be ineffective before starting a Biologic, so I possibly have a long way to go yet!
The advice I was first given was that MTX could take up to 6 months, with increase doses to work, so maybe it will work eventually for you, but when your suffering so much 6 months seems a very very long time!
I very rarely take pain meds (Tramadol plus co-codamol) as they dont seem to work and just make me dozy and give me a "I dont give a s**t" attitude, I emailed my boss once under the influence of the drugs lol!! something I won't be repeating!
Good luck and I hope you get some relief soon x
I know. I also want to scream of pain today. Some days...only God's Grace helps me hold on.
lucia said:
Louise I know what you mean about the bloodwork. my doctors say it isn't that important in determining severity of the disease. i do take pain meds but until it kicks in i want to scream. six months is a lifetime i agree. I am typing with one finger so excuse any typos!
Louise Hoy said:Hi,
I started on MTX in July 2011 and it took until December, and an increase to 17.5 mg, to start getting any relief from my symptoms and pain ...........I suspect my body is now getting too used to the MTX as I'm beginning to notice more pain and difficulty in movement. I have also been taking a low dose of Meloxicam as an anti inflammatory throughout. Unfortunately my next rheumatology app. is not until November and the Rheumatology nurses are unwilling to book me another appointment as they say my bloodwork is fine, but as I've never shown increased blood figures even when I was unable to dress myself at my lowest point, I'm not reassured. Here in the UK useage of drugs and their escalation is dependant on the NICE (National Institute of Clinical Excellence) guidlines which indicate that 2 DMARDs such as MTX need to be ineffective before starting a Biologic, so I possibly have a long way to go yet!
The advice I was first given was that MTX could take up to 6 months, with increase doses to work, so maybe it will work eventually for you, but when your suffering so much 6 months seems a very very long time!
I very rarely take pain meds (Tramadol plus co-codamol) as they dont seem to work and just make me dozy and give me a "I dont give a s**t" attitude, I emailed my boss once under the influence of the drugs lol!! something I won't be repeating!
Good luck and I hope you get some relief soon x
I would say not usually...I am just entering my 4th month on Methotrexate and am getting worse, not better. I just saw the Rheumatologist at the end of July and she says I need to try the MTX for 3 more months before moving on to the Biologics. This is all a political/insurance issues with regard to which insurance company pays for what (Alberta Health Care or Private Insurance). She needs to be able to justify the "tried 2 DMARDS and failed" protocol to the insurance companies here I guess is the way it works. In the meantime, I get to suffer. I just realized, that it has been over one year since I originally asked my family doctor for a referral to the Rheumatologist (July 2010), and I still am getting no relief....that is a sad state of affairs (although a big YAY for publicly funded healthcare...you might have to wait 6 months for a specialist, but you don't have to pay for anything!!!! Sorry, just having a bit of a bad day I think!!!
Dani
This is a glood place to vent our frustrations. We understand.
Finally went to Rhumatologist, waited 7 1/2months, and he is increasing my mtx and starting the paperwork for Embrel. He said MTX does not work for PsA alone but most insurances want you to try it for a minimum of three months. He said he believes once we find the right med combinations I should start to feel relief. However, it can take three months for everything to kick in. He keeps his patients on both meds with predisone to help with flares. At least I have hope now for I was only searching.
The problem is that in the search for the right med and/or combination of them, there are three months in between of the wrong meds until you find the right one. So, it can take a while unless you get lucky and find one soon. Have faith; good things can happen to us, too. Just don't get past those 3 months to see the doc. The sooner you move on to "greener pastures" the better you'll feel.
Doesn't it seem like its cruel in a way that there are all these testaments to the fact that mtx does not work alone and we are told to wait it out. Meanwhile some if not many of us are getting worse. Our pain, lack of mobility and most likely the destruction of our joints is getting worse. It is frustrating. I am grateful for the support I get from this site. And don't apologize. No one understands what you are going through better than us. I hope for remission for you and for the rest of us. Good luck!
dani7865 said:
I would say not usually...I am just entering my 4th month on Methotrexate and am getting worse, not better. I just saw the Rheumatologist at the end of July and she says I need to try the MTX for 3 more months before moving on to the Biologics. This is all a political/insurance issues with regard to which insurance company pays for what (Alberta Health Care or Private Insurance). She needs to be able to justify the "tried 2 DMARDS and failed" protocol to the insurance companies here I guess is the way it works. In the meantime, I get to suffer. I just realized, that it has been over one year since I originally asked my family doctor for a referral to the Rheumatologist (July 2010), and I still am getting no relief....that is a sad state of affairs (although a big YAY for publicly funded healthcare...you might have to wait 6 months for a specialist, but you don't have to pay for anything!!!! Sorry, just having a bit of a bad day I think!!!
Dani
Can I say I am jealous? And please don't tell me they said you have to wait three months again?
Rebel mom said:
Finally went to Rhumatologist, waited 7 1/2months, and he is increasing my mtx and starting the paperwork for Embrel. He said MTX does not work for PsA alone but most insurances want you to try it for a minimum of three months. He said he believes once we find the right med combinations I should start to feel relief. However, it can take three months for everything to kick in. He keeps his patients on both meds with predisone to help with flares. At least I have hope now for I was only searching.
Well said. We need a like button when we like or agree with a reply. My hands don't like all this typing!
Gelita said:
This is a glood place to vent our frustrations. We understand.