This is my first time posting. I have recently been diagnosed after years of arguing with doctors. I keep trying to keep my spirits up but the medication isn't doing anything and the pain is getting worse. Today is a bad day. Besides the disease progressing I can't drink on the medication, it's also messing up my mind. Great idea my body falling apart so give me something so my mind will match and then tell me not to drink.
Nothing sounds fair to me.
I can't really talk to my freinds or family to much because I don't want to sound like a whiner. I am embarrassed to have people who have not sean me lately see me walking with a cane, and moving like an old lady.
I am looking to find out if anyone else didn't have very good results with methotrexate.
Sorry, WS, that things are bad for you right now. Been there! Got that t-shirt! But looking on the bright side, you now know the name of the enemy, which means you can learn how best to deal with it. That, at least, is better than when the days when you were arguing with doctors.
Methotrexate will take several months to “kick in”, so you are just going to have to be a patient patient to see what happens. Have you had a look at the “Aggressive Treatment” article that is in Featured Discussions? I believe there is some interesting information in there about what mtx can do.
You’re right. It’s not fair. I sometimes think “WHY ME?”. And then I come to my senses and realize that the real question is “Why NOT me?”
Welcome to support WS.
I have recently been diagnosed as well and understand your feelings of a declining mind and body yet not wanting to burden your friends with your emotions and your reality.
It does not seem fair to go from the person you were to this new person who is so different from what you want to be. I find friends and family do not completely understand what is happening with your mind and body and how could they, they not living the pain and fear. I believe the best way to help family and friends is through education and expression of needs.
I recently married (May) this year with no idea what was happening. I feel guilt and empathy for my new husband and my 12 year old daughter. As I learn more about PA I slowly let them in on what is happening to me. When I find a blog which I think will help my husband understand, I let him read it. I fell using this technique takes away from it coming only from me and this is real.
Not drinking! I understand. Although I do not feel like drinking much which could be all of the medications, I do when I feel up to it try to enjoy a small pour of wine. I also, something I would have never done before, cut my red wine with ginger ale and a splash of orange juice adding some fruit to the glass. I am a red wine fan and have been collecting it for years so the thought of giving it up completely is difficult.
I have not tried methotrexate yet but was put on sulfasalazine which 7 weeks in has not helped at all. Being a nurse who is not currently working, I like to start with the big guns and its hard for me to sit back and wait for something to work. However, if you start with the newest, best know medication and it does not work for you, were do you do from there? Commercial insurers have a way of dictating to the doctors also to start with less expensive medication before moving on to the new drugs possibly at the cost of our health and quality of life.
I am trying to be patient and I encourage you to try as well. It's difficult to stay positive when we hurt and have brain fog but staying positive, meditating knowing you will feel better is the only alternative.
I want to thank you all for your words of encouragement. I really don't feel alone with this anymore. I try to explain things to my family. They don't get it. They think it will go away. It is wonderful to talk to people who know this is a long road and sometimes bumpy. I am looking forward to the day it stops moving forward and I get good days. My job is a very detail oriented job. I do the school bus routing for 13,000 students. Things change daily and it is impotant for the safety of children from pre school to high school. I really can't do my job very well right now. That was the place where most of my pride came from. Thankfully I have another person doing the same job as I do and she is picking up the slack. So don't worry all children are safe.
Last Friday driving home from work it was raining and dark I missed my street and went into someones front yard. I did no damage to the yard or my car just to my self, I thought "oh no don't take driving from me too."
Well on the good side, every year I bake for weeks and ship wonderful packages of homemade cookies, candies, jams, wine, and breads to my family. I know I can't do that this year so I asked a few freinds to come to my house this Saturday to help. They are excited about being able to do something to help me and eat cookies too!
It will take a while but I will learn to let others help me and not be a stuborn defeated person. I guess that will be the biggest adjustment. I have always taken care of myself and always did it without help. Took pride in that too. I guess I will find pride in the people who suround me in love and not in what I can do.
Sounds easy. But as you all probably know it isn't.
I started out trying to tell you how thankful I am to have found you. Thats what I really want you to know.
Thanks
Morning Walking slow .... are you still having a bad hand day? I am interested to hear that this is something that really does override all other pain for people. I cry when my hands hurt because they feel like they are on fire from the wrists down and to even look at them makes me cringe with fear of a touch. I wear gloves as much as possible to keep warm on these sub-zero days... even in the house. I eat what ever I can shove in because handling utensils is out of the question. I find I keep them crossed over my stomach a lot on these cold days.... don't bump me please!!!
Those driving incidents are terrifying, I only drive the 1/2 mile to my daughters house now and I missed my own turn to my private road in the broad daylight on a clear day. I simply did not recognize it. I no longer drive in the city I stick to my little tiny one main street town on very rare occasions due to this. I am several weeks out on my steroid injection now and those incidents are getting worse, I can always tell when the meds where off. I go whacky in the cognitive functioning dept.
Trying to explain to your family is like trying to hold the water in the dike with your thumb. you work and you work but nothing really changes. There is a great blog and I can't remember who posted it(so sorry) but it's called" How PsA Makes Me Feel". Check the blog line for it... post it to those you think it might be appropriate for. It really explains how we all feel every single day. Hugs to you...XXXXX
I do not worry about the children as you have that covered. You did an great thing just realizing that there was an issue that needed to be addressed immediately.KUDDOS!!!! As a former Childcare provider I know all about that pride issue. It hurt so horribly when I had to retire last year and close my facility. I mourned the loss of my little guys in my daily life. It was like losing my own children. In the end I knew I had no choice...
The good thing is when you are a part of the school system you can always volunteer when you can if you can no longer work. You still get all of the love and support!!!! You'll do just fine. In the meantime you can always ask to transfer to an in-house office job and be on of those ladies that all of the children know by name. :)
Sounds like I was for a few yeas… I have now been put on the biological drug hokum something which I inject monthly as well as methotrexate. I am like a new person no flare ups at all since and 90% better! Just keep going back to the doctors and complaining its the only way they will do anything that costs this much money!
Good luck x
Sorry glouum… Something
Not only that…totally understand how you feel! I was diagnosed after having 2 kids, working full time as a teacher and just thinking I was knack erred from this. Now realised after 4 years of dealing with ths that I have probably had this since I was at university around 22 years old… It explains a lot of unnecessary pain which I just thought was too much drinking and clubbing at the time!!
Anyway, I now run on a regular basis which bloody kills but makes me feel great after: I started last year with my hubby and I have now completed 5 10k races, normally near the back I might add but who cares I do it to keep as healthy as I can with this bloody thing…
Again good luck x
One more thing the bad hand days are the worst… Every move kills and really hard to mark school work with that o e, fingers crossed but since taking the injection I have not had one major flare up and my hands have nearly returned to or al size instead of sausage fingers x
You are all giving me hope! Thank You. And I will keep contacting my doctor and working toward the correct medicines and dosages. I will ask him about Hokum. Is that the correct name?
Jane I can't find anything on the biologic Hokum. Is that the correct name?
Golumumab? aka Simponi
That’s the one, sorry it was late when I sent this! It is the biological treatment which you take every month by the company simponi
I’m glad it’s helping you…
I thought I would have to stop work with the fatigue and pain from just doing my job, but honestly, I feel like a new person
Xxxx
Good luck