So....Have been on Humira for 6 wks now and WOW what a difference! I was put on it primarily for the Psoriasis...it was beyond out of control! My Psoriasis is clearing amazingly well and the PSA has been so much better I've been pushing myself to do "normal" things. Well...that's where I'm running into trouble.....I put together several info packets at work a week ago Fri and by the end of the day I was in tears and on Sat my hands were so swollen! Ridiculous! And the fatigue I battled all week!
So here are the questions:
1. Is Humira going to help with the Fatigue? Am I being impatient?
2. How do you make the Rheumy understand the Enthesitis is the issue not the bones?
I'm not sure I understand your second question. Normally when you have a rheumy concerned with the "bones" we throw a party. Entesitis is inflamation in the entheses which is "hole in the bone" that tendons attach The bone marrow edema we suffer although not unique to PsA is a huge component of our pain. Thats the deep pain we get. Neither issue shows up on most studies (occasionaly with STIR sequences on an MRI) and almost never in blood work. I tried explaining it to my orthopod who was responsible for my care through my shoulder surgery. He finally got it when he sawed the tip of my bone off and rhe pressure relieved squirting blood everywhere.
The bone I suspect you are talking about is your joints.though. The enthesitis will get better. FWIW however a frequent injury in athletes is a "hammy" a big component is enthesitis. It takes months to recover. You are not being impatient you just need to write out your goals and compare with your doc. Have a frank conversation about the differences./p>
Thanks tntlamb for educating me! I think I also did not explain it well. I have been told I also have Osteoarthritis....in my knees and hands. I do NOT believe my hand pain is Osteo.....it is very different from the pain I have in my knees - I know it is the Enthsisits and I don't know how to make my Rheumy understand that. Suggestions? :)
tntlamb said:
I'm not sure I understand your second question. Normally when you have a rheumy concerned with the "bones" we throw a party. Entesitis is inflamation in the entheses which is "hole in the bone" that tendons attach The bone marrow edema we suffer although not unique to PsA is a huge component of our pain. Thats the deep pain we get. Neither issue shows up on most studies (occasionaly with STIR sequences on an MRI) and almost never in blood work. I tried explaining it to my orthopod who was responsible for my care through my shoulder surgery. He finally got it when he sawed the tip of my bone off and rhe pressure relieved squirting blood everywhere.
The bone I suspect you are talking about is your joints.though. The enthesitis will get better. FWIW however a frequent injury in athletes is a "hammy" a big component is enthesitis. It takes months to recover. You are not being impatient you just need to write out your goals and compare with your doc. Have a frank conversation about the differences./p>
Your treatment will take care of your enthesitis in time. It will take the daily NSAID as well as maybe MTX to do it. The problem will be the OA when PsA progresses to the point it causes permanent damage such as OA everything becomes more complicared. OA pain is very difficult to control. Like I say discuss it with your doc. You may not have to convince him of anything. Pretty much thevtreatment is the same. except the OA. Biologicals and DMARDs don't have much effect.
As your disease is better controlled, so too should the fatigue reduce. It's great to hear you are having such good results with Humira - my experience is that it keeps improving for at least the first three months, and probably up to six months. I still need to pace, but as long as I do that can do almost as much as before PsA!
I only made it through three injections of Humira before having to stop it due to side effects. In that time, though, it really started to lift the fatigue, although I hadn't gotten any relief joint-wise. Proves again that we are all so different- the first to go for me is the last for you, etc.
Be careful, too, that as the PSA pain lightens up you don't go crazy and over do it. It's really easy to do, and the "new normal" is a moving target. Halfway through the day you realize you've done twice what you could have managed a few days before, and aren't even fantasizing about lying down on the floor for a bit!
It was actually my Derm that put me on Humira....my Psoriasis was out of control and my Rheumy wanted to put me on MTX first b/c of insurance...but he also feels my PSA is "mild"....I disagree. Is it possible that the PSA caused the OA?
sybil said:
What I'm hoping is that your rheumy sees your osteoarthritis as caused by the PsA. A problem I had in the past was when a rheumy decided to attribute OA damage (which only affects joints that my PsA has gone to town on) to 'wear and tear' and then to minimise the impact of my PsA and refuse to treat it aggressively.
I'm wondering whether it was your dermatologist or rheumy who put you on Humira? Because if it was your rheumy or at least if he/she feels that Humira is the best thing for your PsA as well as your Psoriasis, then it sounds as if you are in safe hands.
While you're waiting for Humira to work you might have to go easy on the joints that swell and hurt. And joints that do have OA as well require a lot of thought, especially in terms of getting the balance right between strengthening them on the one hand and rest on the other.