I have had psoriasis since I was 15 and I am now 56. I have over the past 2 yrs been having problems with unbearable pain. Its in my knees, hands, my back (upper and lower), my neck, my ankles and bottoms of my feet. I just sit curled up and hate to move. My GP looked at me when I described it like I was a nut case. I told him my back was so bad because he just didnt understand that I had so many areas of pain, (like I was just there for drugs) thats what it made me feel like. :( I wanted answers and relief. He sent me to a orthopedic dr who said I had so much arthritis in my spine and my joints, a month or so later it hit my shoulder and he gave me a cortizone shot, OMG the pain in that was more than I could stand, he said was due to all the arthritis in my shoulder and that I need an MRI he thinks along with everthing else that I have a torn rotator cuff, (OUCH). Well, I went back to my GP with my feet killing me along with the other pain, and I told him I needed to see a dr who could find out what was going on! PERIOD! So he sent me to the Rheumi Dr. Thank God! The Rehumi said I have Psoriatic Arthritis, and put me immediately after blood tests on MTX , along with Folic Acid pill daily. I started out on 6 pill1xweek, that was on June 5th. Its now the 26th of July and 2 weeks ago they put me on 7 pills 1x week. I am so fatigued, but I was this way prior to the MTX. I only 3yrs ago was walking 10 miles a day faithfully and now I am lucky to walk around the grocery store. Well, the MTX makes me a little naseus, not bad, but I seem to have no energy at all the first couple days after I take it. (THANK GOD for my hubby) First week I took 7 pills (I take them at night) I didnt sleep at all. Then WHAM 2 days I was done for. I would Love to know when this will start working, and can I expect pain relief when it does. I told the Rheumi 2 weeks ago that Naproxin, Tramaidol, and Relafen dont even touch the pain, so they temporaily put me on Hydrocodone 7.5 3 times a day. I dont take it at all unless I have to get up and do things or go away so I can make it there and back without suffering. The next thing they want to do is put me on Enbrel or Humira. THOUGHTS ON THAT PLEASE ANYONE? So I have a few things I would like your help in figuring out. I am afraid of the biologics, but I have got to have some type of quality of life. Experiences from you all would be helpful.
The DMARDs and the biologics will slow down or halt progression. But it sounds like you have a lot of damage. In addition to the medications, you may also want to ask about physical therapy in order to help strengthen around your joints and relieve some of your pain.
Hi, Candi. Welcome to the PsA board. I’m glad you’ve joined, but isn’t it awful that you’ve had to! So many of us have had the same doubts and fears as you are experiencing. The search feature (upper right) is very useful for finding older threads related to your questions. You’ll find that really useful.
You’d love to know when the MTX will start working. Yes, well, we’ve all wondered the same thing. Unfortunately, most treatments for PsA work very slowly if they work at all. Three month’s wait is not unusual, and symptoms don’t improve simultaneously. I recently went on a biologic, and I saw great improvements in some of symptoms relatively quickly. The pain in my feet is still bad three months later. The rheumie said it could take up to six months for my feet to get better. So I guess we just need to be patient patients.
You identified a crucial factor in my decision making too: the need for quality of life vs risks of treatment. It’s all a trade-off, isn’t it?
Good luck with this! Let us know how you’re doing.
Thank you for your feed back!! It is so wonderful to see and hear from people who are suffering the same as myself. Its so hard to talk to people who dont experience this, they dont understand, why we look so normal (other than the plague) and they relate it to a skin disorder, not an internal problem. They think we should be up and moving around and enjoying life. They think we are lazy and just complainers. OH HOW UNTRUE, I was a very inerjetic person, on the go all the time, no slowing me down, well, Except for this and now I can barely stand to move. How do you explain it to people who have no clue what we are feeling inside?
Have you heard of the spoon theory? Check it out at http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/
I've been on MTX for three years I went from tablets to injections and the two days after or the MTX Hangover as my nurse calls it never goes . I don't think it doeas anything to help me.
As for humira it took me about two years to qualify due to the costs I think but WOW wonder drug. From day 1 I could feel a difference in my neck back and spine ( which was causing the most pain ).
I also swear by Willow Spring Water ( you would need to read up on it ) . As you can see by my blogg I have had to stop all treatment to donate a kidney to my husband but if i have to go back on treatment Im only taking the humira for sure,
hope this helps a little .
It sounds like we are in the same boat. I went through feeling like the GP thought I was just a drug seeker. Unless you have this, it's hard to describe the pain you feel. I also used to be very active and because of the constant pain and flares, all I want to do is nothing. I make myself stay as active as I can bear. I feel like I have zero quality of life which is depressing because I am only 40 and have a 10 yr old to take care of. The MTX hasn't worked well for me. Recently started taking Cymbalta but the nightmares from it are worse than the pain. Afraid to try biologics as well. Wondering if there really is anything out there that helps.
OK, I’m going to be blunt. I get the fear of biologics. I really do – been there. But can you afford –
- The deterioration of your quality of life because of pain?
- The risk of permanent and possibly crippling damage from this disease?
- To sacrifice quality of life for your nearest and dearest?
If you are getting adequate pain relief and disease modification from a DMARD, then that’s what to use. But if not, you really need to carefully consider a biologic.
Unfortunately I made all three of those sacrifices before getting onto a biologic.
i said i was fearful, but still going on them. i also have a heart condition. worry but cant stsnd this pain. have to get relief somehow, and if thats the way then thats it.
Good for you. Aggressive treatment, as early as possible, is the best defence. Take care of yourself, Candi!
thank you! i just hope they get me on something soon. besides the mtx and folic acid. need pain relief outside of a pain pill.
I hope so too. When do you see your rheumy?