Hi everyone. I am happy to have found this place. I am hoping to gain some knowledge and help/support. I just started Methotrexate on Friday , October 12th 2012. I started at 15mg IM. I also have a prescription for Enbrel that I am trying to get filled. I should know by tomorrow if I am eligible for help for it. I am a college student and the student health center has been very helpful in offering me differernt means of getting the prescriptions I need. I am tapering the prednisone and started the taper ( for the second time in a month) going from 60mgs to 30mgs then to 10 mgs indefinatly. I am very emotional lately. I have had a diagnosis of psoriasis since I was 16 and it was suggested to my mom at the time that I would most likely get PsA duue to my nails being pitted. I had gone to the ER because I had Bronchitis and Pnuemonia and was feeling pretty sick even after 4 antibiotics. The ER doctor told me to stop the 60mgs prednisone as my chest Xray looked clear and he figured it was just Bronchitis and a slight UTI. So I stopped the pred abrubtly ( against my better jusdgement) After 3 days I had a major falre of od psoriasis that was the worst I had ever had. I ended up getting a shot of steroid in the Dr's office. He also stated I needed to be put on triamcinolone .01% and use it 3 times a day. I also have asthma and take Albuterol tablets and advair as well as carry my rescue inhaler. I have tried 3 times now to taper the pred and have had no luck because I end up with a major flare up and it has become so painful they put me on Tramadol for pain, which isn't helping much. My Back hurts and the Dr never did any blood work before starting me on Methotrexate. I know that 2 weeks before my white cell count was high. My C-reactive protein was also high at 35. I do worry about what side effects I should expect from the methotrexate as well as the enbrel. Also I am told I will have to stay on 10-2- mgs prednisone and I worry about that along with the inhaled and cream steroids I take. This Diagnosis is scaring me and I worry that I am only 33 years old and wonder if I am hurting this much what I can expect in the years to come. I do know that I tried methotrexate a few years ago , but I was younger and it had upset my stomach so much as I was taking 6 pills at once. Thankfully the methotrexate injection did not cause upset stomach, but I have been sleeping a lot. Please let me know what you all think and I am looking for a new dr as this one is doing his residency and has no ideas what psoriasis or psoriatic arthritis is, he had to call in another dr and being a college student I don't have a lot of money to spend on drs and medications. My Enbrel I was told would cost me $2400!! I am scared and I also worry about losing my hair since I did that when I was on Methotrexate before but not much. I do not know how to explain to others that I am on a chemo drug for something other than cancer. I also have trouble finding the words to explain to my friends what is wrong with me. I feel so old, also my back is killing me and the pain meds I have ( Tramadol) doesn't even touch it. I don't know if it is safe or not to take advil or other Nsaids as It says they can interact with methotrexate. Since I am new any and all information is and will be greatly appreciated and accepted. I cannot afford a rhuemy at this time and have to stick with a PCP. I wish people could understand how much pain I am in and how much energy it takes for me to do simple things right now. I have been so tired. Also do the methotrexate shots have more side effects the longer you take it? Is 15mgs a good starting does and for the Enbrel, I will be doing 50mgs once a week. Can both shots be taken on the same day or should I space them out? I take Methotrexate every Friday since I was not sure how I would feel after and I am glad I did since I slept almost 12 hours straight, but had only slept 7 hours in a 4 day span because of being in pain. Sorry this got so long. I am just scared and hoping that I found a great place to help me over come some of my fears and look forward to things again. Thanks Starshined : )
Welcome, welcome. This is a great place for support, compassion, and most important, knowledge and info. I can speak for most of regarding that at some point in our lives, we didn't have much money for medicine and dr.s. I am glad that your college helps you. In regard to your question about taking enbrel and mtx the same day: i posted the same question a week ago and was told yes. Still, I space them with a day off in the middle. Keep coming here, and most importantly, read past posts. There are gems to be found.
Hi there, I know you are a bit apprehensive about the meds....but you should fear the disease more. I'm on methotrexate 17 yrs. No side affects from the biologics like Enbrel, they really help with the fatique too...
With Enbrel you may end up paying only $10...they have an assist program, to help with your co/pay
feel better!
Thank you both. I am so tired all the time and really hoping that these meds help. I do fear this disease as I stated above. I worry what my quiality of life will be like in a few years. I take my second shot of methotrexate this Friday. The other shot made it so I could finally sleep ( for 12 hours straight!) Seems that the medications are fairly powerful. Does anyone have any alternitive ideas for pain managment that doesn't involve more meds? I am already on 6 meds ( 3 for PsA and 3 for asthma) My pain tolerance seems to be horrible right now. I feel like I am 90 years old! The back pain and leg pain is worse at night and my fingers are numb and stiff in the am. Just hope I can get this disease well managed... and soon! Thanks again and I am very happy to have found this group!
Tapering prednisone was really hard on me. Crazy mood swIngs (on top of the normal ones from all this). I hope you’re going slowly. I could only drop by 5mg at a time.
Hi there 
and a warm welcome…
Firstly, Do go over past posts as they are helpful and offer great words of wisdom and encouagement, especially when you are feeling crap. I am on two biologics and i have a days break in between, however there is no reason you can’t take noth the same day. It may seem a lot of meds now, but remembering that biologics can place you in remission, so hang in there. I prefer to be taking meds than putting up with the psa crippling me.
I just wanted to offer some words of encouragement. I am 32 years old and was diagnosed almost 2 years ago with PsA and psoriasis while in high school. Your symptoms sound si much like mine. I know what it feels like to feel like you’re 99 years old.
I took oral methotrexate years ago for my skin and it made me really nauseas, so I was super resistant to the injections when my rheumy suggested them. My husband and I were also hoping to have a baby, ehich was a big factor. I was on enbrel and then humira for many years, which worked really well as I had no symptoms of either disease, but when I stopped, I had a long, severe flare. Prednisone, ibuprofen, and tramadol weren’t touching my symptoms. I was so fatigued that it was a struggle to make it through the day or complete basic activities. I became really depressed and the side effects from the steroid were ridiculous (mood swings, weight gain, excess facial hair growth, hair thinning on my head). I am on Remicaide now and it is such a blessing. I go without symptoms for four to six weeks at a time. I only take other meds as I get close to my next infusion.
I would say start the biologic treatment ASAP! If enbrel isn’t effective there are other options, but my understanding is that the methotrexate + the biologic is supposed to be highly effective. I was just too stubborn to try it. The enbrel and methotrexate may take a little time to work, but hopefully you won’t need the other stuff once it does. My guess is that once you stop the evil prednisone you might be less emotional and more able to think clearly and positively. Good luck.
Hang in there, starshined...
Welcome. First of all, relax. My first reaction was panic when I was told the diagnosis. I soon learned that we are living in the best of times when there are different drugs, and more info on the subject, so we're ok. You are studying, and many colleges have schools of medicine where drs. do research and are fairly good. Many even teach there. Find out if there is this clinic. They usually have Rheumys there.
Re: telling others, tell them you have arthritis until you know more about PsA. This site can answer many of your questions, http://www.psoriasis.org/psoriatic-arthritis
About the pain, we know. We are there. We live it. This site is wonderful, because you have just found people like you who understand. Never hesitate to call on to us, even to scream if it hurts. Just talking about it helps me. Praying for you.
Welcome! I know this is really hard. I just turned 30 and was recently diagonsed with PsA too. Im on the injectible mtx and I will be starting my Humira next week. Im confident this will be a good mix of meds so I can start feeling better again. But while I wait for meds to kick in a very close friend of mine did a lil research on PsA and diet and the findings were really beneficial for me. I actually posted a discussion about going on a Gluten Free diet and the feedback was very positive. I knw that GF didnt work for a few members but it does work on alot of us. I was a crippled 30 yr old and when I started going GF I started feeling better and I was able to get up from bed in the mornings without help from my husband and stiff free! Please read the discussion "Glutten Free?" It might help you too! Sometimes when the pain is so bad you tend to try anything for any type of relief. As for side effects of the meds i too am afraid. My hair means alot to me...its down to my lower back and just the thought of cutting it bc its just getting to thin really sux! But you got to do what you got to do. The way I see this (when im optimistic about my condition) is that if the meds are going to kill me sooner but help me with a better quality of life then Im going to take the meds. I rather have a short but good & wonderful quality life with the people that I love vs a long lonely life in pain and suffering. Hang in there girl! We can do this! :)
Thank you RB. I am going slow with the taper. I did well this week with the 30mgs and am supposed to go to 20mgs next week. I may just do 25mgs and taper a little more slowly.
RB said:
Tapering prednisone was really hard on me. Crazy mood swIngs (on top of the normal ones from all this). I hope you're going slowly. I could only drop by 5mg at a time.
Thanks Rustydog. It is hard when I have been in remission for several years and all the sudden it starts back up. I feel it all started again because of the prednisone the dr took me straight off of 60mgs. 3 days later I had a huge flare up and never really thought much about it. Seems that if and when this goes back into remission I will be very happy. You are right it seems like a lot of meds. I just hope they start to work as my back is killing me!
rustydog1973 said:
Hi there :) and a warm welcome..
Firstly, Do go over past posts as they are helpful and offer great words of wisdom and encouagement, especially when you are feeling crap. I am on two biologics and i have a days break in between, however there is no reason you can't take noth the same day. It may seem a lot of meds now, but remembering that biologics can place you in remission, so hang in there. I prefer to be taking meds than putting up with the psa crippling me.
Thank you MMG. I appreciate all of this. It is horrible to see this as positive right now. I am a bot upset as I tried to tell a very dear friend and he got upset and hung up saying that they wouldn't put me on a chemo drug if I didn't have cancer. I tried to explain and got hung up on.. I deal with so many issues as being a college student and being sick is hard enough then add ontop of it friends who don't understand. I wish there were an easy way to explain to people. I have a lot of people here on campus that do understand because they have seen the changes and see how tired I am. I am glad for the support and I wish people would just be able to understand more.
MMG said:
I just wanted to offer some words of encouragement. I am 32 years old and was diagnosed almost 2 years ago with PsA and psoriasis while in high school. Your symptoms sound si much like mine. I know what it feels like to feel like you're 99 years old.
I took oral methotrexate years ago for my skin and it made me really nauseas, so I was super resistant to the injections when my rheumy suggested them. My husband and I were also hoping to have a baby, ehich was a big factor. I was on enbrel and then humira for many years, which worked really well as I had no symptoms of either disease, but when I stopped, I had a long, severe flare. Prednisone, ibuprofen, and tramadol weren't touching my symptoms. I was so fatigued that it was a struggle to make it through the day or complete basic activities. I became really depressed and the side effects from the steroid were ridiculous (mood swings, weight gain, excess facial hair growth, hair thinning on my head). I am on Remicaide now and it is such a blessing. I go without symptoms for four to six weeks at a time. I only take other meds as I get close to my next infusion.
I would say start the biologic treatment ASAP! If enbrel isn't effective there are other options, but my understanding is that the methotrexate + the biologic is supposed to be highly effective. I was just too stubborn to try it. The enbrel and methotrexate may take a little time to work, but hopefully you won't need the other stuff once it does. My guess is that once you stop the evil prednisone you might be less emotional and more able to think clearly and positively. Good luck.
Thank you Ineedcoffee I am trying :)
ineedcoffee said:
Hang in there, starshined...
Gelita thank you for your response. I am trying hard to come to terms with this disease. I did try to tell one of my closest friends last night and I got hung up on... I cannot deal with much more stress and I am trying hard to just take it day by day.. sometimes even that is too hard on me.
Gelita said:
Welcome. First of all, relax. My first reaction was panic when I was told the diagnosis. I soon learned that we are living in the best of times when there are different drugs, and more info on the subject, so we're ok. You are studying, and many colleges have schools of medicine where drs. do research and are fairly good. Many even teach there. Find out if there is this clinic. They usually have Rheumys there.
Re: telling others, tell them you have arthritis until you know more about PsA. This site can answer many of your questions, http://www.psoriasis.org/psoriatic-arthritis
About the pain, we know. We are there. We live it. This site is wonderful, because you have just found people like you who understand. Never hesitate to call on to us, even to scream if it hurts. Just talking about it helps me. Praying for you.
I also want to welcome you and offer some encouragement and empathy!! I was diagnosed at 33 and it does suck at times wondering how I will feel when I am 50 or 60; however, I feel so much better than when I was first diagnosed.....I so feel for you that you have to worry about healthcare costs - even like the cost of seeing a specialist. I am lucky I live in Canada (although we do have to may for our meds). Anyways, please know there ARE people who understand how much pain you are in and it is REAL pain - but it can get better! Be a "squeaky wheel" and get what you need!
I have never tried Prednisone or Methotrexate but I would encourage you to check out the discussion "Gluten Free??". Diet has helped me tremendously - with pain and psoraisis on my scalp too! :)
Where have I heard that before? Wait a minute! That's me you're quoting! Yes, we can. That's what separates us from the rest. We're strong and we are tough. We can even flare!
starshined said:
Gelita thank you for your response. I am trying hard to come to terms with this disease. I did try to tell one of my closest friends last night and I got hung up on... I cannot deal with much more stress and I am trying hard to just take it day by day.. sometimes even that is too hard on me.
Gelita said:Welcome. First of all, relax. My first reaction was panic when I was told the diagnosis. I soon learned that we are living in the best of times when there are different drugs, and more info on the subject, so we're ok. You are studying, and many colleges have schools of medicine where drs. do research and are fairly good. Many even teach there. Find out if there is this clinic. They usually have Rheumys there.
Re: telling others, tell them you have arthritis until you know more about PsA. This site can answer many of your questions, http://www.psoriasis.org/psoriatic-arthritis
About the pain, we know. We are there. We live it. This site is wonderful, because you have just found people like you who understand. Never hesitate to call on to us, even to scream if it hurts. Just talking about it helps me. Praying for you.
Gelita, I am feeling less and less alone in all this! I appreciate all the responses and I am not as scared as I was. My only hope is to get the pain under control for once and for all... I think we all have that common goal :)
Hello there any welcome, yes this is the place to visit and share your pain, experiences, joys and panic…its just so good not to feel alone, before finding this place I had never known anyone with PsA. Good luck and I hope you find something to control your pain…we’re all here for each other and that gives us all strength x
Welcome, starshined! Some of the most difficult parts of living with Psoriatic Arthritis is coming to terms with how unpredictable it is, dealing with a flare after we'd been doing well, and helping friends and family understand what we're going through. Autoimmune arthritis itself is difficult for people to understand, and it's even more difficult for people to understand the treatment (chemo, steroids, biologics, oh my!). It's also difficult for people who love us to come to terms with the severity of PsA and what it means to our lives. It's not just scary for us, it's scary for them.