I am newly diagnosed and looking to see what others experiences are. My Dr want s to put me on a medication called methodextrate. How do I know if this the right choice for me.....
My life has been greatly affected by pain. I hurt all the time. I seem to be in the most pain from the inflammation of my tendons. The heels of my feet hurt so much that I cant lay in bed with a blanket on them and when I wake up in the morning they hurt for about a half hour before I can walk properly. If I sit for more than 10 minutes at a time the hurt starts all over again. My hands hurt and want to curl up and my forearms ache constantly. I have damage to the lower back which was found by x-ray as well as a hip that I can't lay on. Does this sound familiar to anyone? I want to make sure that this is the correct diagnosis before I go on a medication that I have to have my blood monitored while on. I have been told many different things by many different medical professionals and am nervous to take this diagnosis as It! If this the journey that I am on then I want to make informed decisions....
Hi there, Journey! It's nice that you've joined us, but I'm so sorry you've had to. You ask whether your story sounds familiar. Of course it does. Everything you've said is familiar to a lot of us. Methotrexate is the first med most of us were put on -- seems to be the first line choice for these autoimmune things.
How do you know it's the right choice for you? You don't. Quite simple. If it doesn't work, they will probably try other DMARDs in succession until they find something that helps you. It can take a bit of time to find the right "key".
The search function on this site works pretty well: if you search methotrexate or mtx (or almost anything PsA-related), you will find questions and answers galore. And don't miss Ilika's dictionary of PsA terms in Blogs, it is priceless.
Take care and keepo in touch.
Seenie
Hello,
I am 51 years old and was diagnosed at 16 with PSA. I have been on every drug imaginable. I started on Methotrexate at age 24 and have been on it since that time. I have taken all of the biologic drugs and I have returned to Enbrel after 12 years. I have no permanent joint damage because of the proactive choices of my Rheumatologist. I have seen the same one since age 16 which I know is quite rare. I guess my point is that even though the drugs sound horrible I can honestly say I have no real damage from them. My blood is tested regularly and I have never had anything abnormal show up. I do have horrible flares and they are disabling but somehow my Rheumatologist works with me and I get through them. His treatment has allowed me to teach school for 30 years but I am now retired and this helps with my pain management immensely. Take good care of yourself and be patient as I have found nothing seems to work instantly!
Sounds very familiar. Glad you found this group. Most rheumies like to be proactive with treatment, and it sounds like you're on the right track. If you're not already on anti-inflammatories, you may want to talk about this, as it takes the DMARDs some time to kick in.
Also, what about physical therapy? Even just gentle stretching before you get up may be helpful. I've had problems with my ankles, and especially the achilles tendon, since last spring. If I don't stretch out before getting up, it's quite painful. Take the time to look through the message boards. . . You'll find some great information here.
It is all to familiar, sound a lot like me. Sorry to hear that you are join the ranks of those who like to try to help others understand. I am new to the group as well but the Methotrexate has been a big help for me. It does take several weeks before you will notice any change. Infact for me the worst part is getting use to the drug. But once you adjust, it is not bad. Each time you take it you may notice less and less reaction and more pain releif. Give it time. Everyone has a different experience with it as well. For me my stomach gets upset a few days after taking it. This is my second time starting it. I took my second dose last Thursday night. My first trail was for about 12 weeks but I had swelling in my legs that seem to be a concern. So I was stopped until I could have my heart examined. It was found to be okay so I just started it again. Infact I asked to go back on it. So good luck and welcome.
Thanks everyone. I can see that this site will become a great support to me and my journey to feel better!
I was put on MTX when I was first started this journey with my rhumy, she told me that its the first drug that they want to try. I found that it did little to help me and we are still trying to find that "magic" pill/shot etc that will work best. I still take MTX with a combination of other drugs. I know that the side effects of the drug can sounds scary but with a little luck you will experience little to none. While it sounds scary to have to have your blood monitored it really becomes no big deal to go and have them take your blood. Here's hoping you find the right path for you.
I have many similar symptoms. I inject methotrexate weekly with no side effects. They should prescribe folate to take along with it. Naproxen also gives me good pain relief. The BEST thing for the enthesitis in my heels and feet has been Voltaren gel. I have recently started humira which is helping me function better. Good luck to you on finding the best thing for you and welcome!
I lost my beautiful sister on Christmas Day from this disease a lot of years ago (she was 20 years older than me).......
There was a time when the only treatment was predi, pain meds and NSAIDS. They cooked her liver. (the self medication didn't help either) In any even none of the "drugs" we have available now were available for her until it was too late. (she struggled a long time even after the first DMRADS became widley used, he death certificate listed malnutrition as cause of death. (It was the Predi that prolly caused her the most problems) My baby sister (shes 12 years older than me) and I did have the new meds. We have our "days" (or weeks) but we are still pretty functional and have a lot of time left. This is a walk and a Iong one. Thats something pretty new - walk.
I get a wee bit testy when people climb on the pity pot complaining about the side effects or even "shots hurting" when the clearly don't understand how fortunate they are to only throwing up a few times as they get used to new drug, or lose some hair, or have an injection site "sting" Understand thosse occasional barbvs are really in the form of a joke. Some may not get it.
We have a horrible disease and I understand it take a while to learn what it is and how to treat it and I can help all anyone wants. I know we need to vent to others from time to time. Better here than with loved ones who can never understand (no matter how hard they try) But understand to We could have so much worse diseases or have had this one even 10 years ago..... Something NEW is happening all the time.
Hello 
I started methotrexate in July '11 at 7.5mg and now am on 25mg but the side effects for me have been minimal…extreme tiredness the 2 days after dosing. The effects don’t seem to get worse the higher the dose, as its increased gradually. I’ve found its a really good excuse to lay on the sofa the 2 afternoons post dose after getting done what needs doing in the morning lol 
My bloods are done every month at the moment as I’ve had the increase to the max dose. My results are good and I know I’m watched over, if there’s a problem it will be picked up.
You’re right to want to make informed choices, this place will help and often throw up questions you didn’t consider asking your care team or researching until they’re raised here.
All too familiar. Mtx has been around for a very long time.
I'm sorry about that. I'm constantly amazed at the changes in treatment that have happened over the years in all areas. My mom is a type 1 diabetic, and has been for almost 40 years. Yet her vision is perfect, and she has nearly no complications at all. Comparing that to the early deaths, amputations, etc that used to be so common and no longer are, it's quite impressive.
Same thing with PsA. It's still not fun and for some can be crippling, but when we compare it to how things used to be, it is a stunning change. The treatment options are far greater now. Thanks for the reminder.
tntlamb said:
I lost my beautiful sister on Christmas Day from this disease a lot of years ago (she was 20 years older than me).......
There was a time when the only treatment was predi, pain meds and NSAIDS. They cooked her liver. (the self medication didn't help either) In any even none of the "drugs" we have available now were available for her until it was too late. (she struggled a long time even after the first DMRADS became widley used, he death certificate listed malnutrition as cause of death. (It was the Predi that prolly caused her the most problems) My baby sister (shes 12 years older than me) and I did have the new meds. We have our "days" (or weeks) but we are still pretty functional and have a lot of time left. This is a walk and a Iong one. Thats something pretty new - walk.
I get a wee bit testy when people climb on the pity pot complaining about the side effects or even "shots hurting" when the clearly don't understand how fortunate they are to only throwing up a few times as they get used to new drug, or lose some hair, or have an injection site "sting" Understand thosse occasional barbvs are really in the form of a joke. Some may not get it.
We have a horrible disease and I understand it take a while to learn what it is and how to treat it and I can help all anyone wants. I know we need to vent to others from time to time. Better here than with loved ones who can never understand (no matter how hard they try) But understand to We could have so much worse diseases or have had this one even 10 years ago..... Something NEW is happening all the time.
Just to point out, psoriatic arthritis can be completely seronegative, meaning no irregularities in the bloodwork. Methotrexate is a common first line medication, although there is some debate as to it's effectiveness with PsA. The tendon inflammation seems quite common with PsA.
I'll also point out that there are many people with multiple diagnoses. So while you may be getting different messages, rather than only one being correct, there may be multiple correct diagnoses. I wish you luck with this.
Even if your doctor does start you on MTX, it takes some time to start working. You may want to talk with your doctor about what to do in the meantime.
I’ve been on MTX for over a year now. I felt sick to begin with but Rheumy upped the Folic Acid to 6 times a week and changed me to sub-cut injections. It’s worth persevering with any side effects you may get to begin with as they often reduce/subside. I take an anti-emetic prior to injection and take injection in the evening so I sleep through and find I’m pretty ok next day. I have found it made such a difference with my symptoms. Definitely worth it for me. We’re all different. You can only know by trying. It’s great for some and not so great for others. I’d be very worried about joint damage if I wasn’t taking a DMARD. I’ve had 6 hand surgeries prior to diagnosis and would like to avoid any further surgery…although there’s no guarantee, taking a DMARD definitely reduces the risk. My hands used to curl up but now they’re straight. My heels were also more stiff and painful before MTX. Good luck, I hope it works well for you
What Lamb said really resonates with me. He lost a beloved sister to PsA many years ago, and I lost a mother-in-law whom I adored. My m-i-l had rheumatoid, and in those days all that was available was prednisone, naproxen and opiods. She took them all, and still had to have almost every joint in her body – hands, feet, knees, shoulders, elbows, hips – aspirated and debrided. Their whole retirement revolved around pain management, terrible medications with horrific side effects (palliative but ineffective wrt disease modification) , and excruciatingly painful surgery after surgery. My father-in-law was completely devoted to her care, and they had no life for their last 20 years. She finally died of internal hemhorraging from the drugs. F-i-l never really recovered from the crushing burden of her care, and he died a few years later.
After having seen the devastation of RA, I used to say that I didn’t care what disease I got, as long as it wasn’t Rheumatoid Arthritis. I guess I got my wish. Right? And that family experience has made me want aggressive treatment, which I haven’t to date received, but hope to soon.
As Lamb says, we now have therapies that are effective, and as Jot1 says, “Fear the disease, not the drugs.”. I’ll second that!
tntlamb said:
I lost my beautiful sister on Christmas Day from this disease a lot of years ago (she was 20 years older than me)…
There was a time when the only treatment was predi, pain meds and NSAIDS. They cooked her liver. (the self medication didn’t help either) In any even none of the “drugs” we have available now were available for her until it was too late. (she struggled a long time even after the first DMRADS became widley used, he death certificate listed malnutrition as cause of death. (It was the Predi that prolly caused her the most problems) My baby sister (shes 12 years older than me) and I did have the new meds. We have our “days” (or weeks) but we are still pretty functional and have a lot of time left. This is a walk and a Iong one. Thats something pretty new - walk.
I get a wee bit testy when people climb on the pity pot complaining about the side effects or even “shots hurting” when the clearly don’t understand how fortunate they are to only throwing up a few times as they get used to new drug, or lose some hair, or have an injection site “sting” Understand thosse occasional barbvs are really in the form of a joke. Some may not get it.
We have a horrible disease and I understand it take a while to learn what it is and how to treat it and I can help all anyone wants. I know we need to vent to others from time to time. Better here than with loved ones who can never understand (no matter how hard they try) But understand to We could have so much worse diseases or have had this one even 10 years ago… Something NEW is happening all the time.
Call me selfish, but I want everything in my body to be working perfectly. I don't want any pain. I don't want to have to take any meds and I don't want to get old. I'm not happy I have PA or P or that I've ground my teeth partly down to the dentine, or that my hair is grey or that I now have a stomach that sticks out. Still, I feel damn lucky that my PA is controlled through Enbrel and it doesn't bother me that the shots sting a bit sometimes.
I had an aunt with RA and it destroyed her. She was in a wheelchair and her hands were completely ruined. If I ever get to be in her condition, I will be looking for meds with the worst side effects. Cyanide comes to mind. Don't sweat the small stuff. The biggest problem with MTX is that it's not very effective for PA. Go on it because that's the only way you will get to the biologics, but your journey is unlikely to end with MTX.
hi journey MtX works for me. It can take up to 12 weeks to start working. It is a dmard that they start you out with. SE can be brutal but hang in there as this med can greatly reduce your symptoms. Get on some pain meds to help for now until MTX starts working for you. Good luck to you things will improve .
Journey,
Through my travels of this it's pretty clear that certain meds work better for certain people. I think it all comes down to what works best for you. With me MTX seems to help, along with the other meds as a cocktail of treatment. Just a few weeks ago I did not take my weekly dose (I skipped a week) and I sure could tell the difference. You may hear a lot of positives and negatives but as far as I see it, what works for me is what I am concerned about. At the end of the day if mtx works I personally feel that the positives definately outweigh the negatives. I'm just thankful this stuff is working for me, at least for now :) Good luck to you on your journey.
Hi journey,
I feel your pain especially around the Holidays seeing family is great but not feeling like or being able to participate in activities is tough. I have been on MTX in the past. Then switched to Arava plus Enbrel for fours years which seemed to help but caused a lot of hair loss. Now on Hurmira and MTX again but having side effects blisters in my palms and Psorasis flare on Legs, hands, elbows and knees. I don’t have an answer I wish I did but do wish you the very best and a very Merry Christmas.
Brett