new to psoriatic arthritis | Arthritis Information

Hi.
This past week I was diagnosed with psoriatic arthritis at the age of 20. I never in a million years thought I would have arthritis let alone at a very young age. It is actually scaring me and I don't really know what to expect in the future. I have just started methotrexate therapy and so far it has made me extremely tired and lethargic. I am a nursing student and I am afraid that this will completely interfere with my life and my goals.

I was wondering if anyone who has psoriatic arthritis has any advice for me. Anything you can recommend to help with the pain? exercises? diets? will the methotrexate make me tired for the rest of my life? any other suggestions?

thanks a lot!

Mara
Hi Mara, I'm so sorry that you've been diagnosed with PA and I certainly hope that MXT kicks in. It can take up to 3 months for MXT to work, so don't give up. If it doesn't then your RD will add one of the biologics to the mix.

The tiredness and lethargy will get better but it takes time. Take your MXT in the late evening and you'll sleep through the worst of the side effects. Make sure that you pace yourself the day after MXT and then you should be good for the rest of the week. PA will make you tired and sometimes will affect your sleep.

You need to discuss pain medication with your RD and he/she should also be giving you literature about PA and informing you of what to expect. Please google PA and read as much as you can about this immune disease. Education about the disease is the first step in getting better.

All you can do is see how you do with your nursing school. The disease may not affect your studying. Take it one day at a time, pace yourself, and stay focused on school and not PA. That's probably the hardest thing for you to do, especially with pain.

I'm on Humira and MXT and am in clinical remission for the first time in 10 years. I wasn't as compliant with meds as you are and was in denial for 5 years, so remission for me was a far away fairytale, but I've finally achieved it. Hopefully for a long time.

Because PA was diagnosed early in the process, then remission may be easier for you to achieve.

If you have any questions or just want to talk, PM me. Take care. Lindy

lindy,

that was the best advice i have gotten so far! thank you so much! i have been so engrossed in my diagnosis since it just happened a week and a half ago. I have thought about nothing else and it is hard to study for midterms and stay focused in class. I think i just need to let it sink in for a bit and see how my life goes and then i think i will calm down. I am going on a vacation this coming week so hopefully that will help as well.

The MTX made me so tired that I slept for 14 hrs on the friday night that i took it. My boyfriend was with me and he said that I was acting weird and saying weird things. I actually felt more drunk than anything else. did that ever happen to you?

It is nice to know that remission is in my future! Congratulations to you for that! I am not sure how remission works but can it last a long time? does it happen to most people?

Thanks again for the support!

Mara Mara, remission doesn't happen to everyone and there are many different reasons. It depends on the length of time it took for diagnosis. How long you've had active disease and the amount of damage acquired. The severity of the disease and how you respond to medications. You've just been diagnosed and I think that the chance for clinical remission is much higher for you. It's been 10 years for me with complications and damage. You may find that you only need MXT.

The side effects with MXT will get better, If you don't do injectible MXT, ask your RD about prescribing inj. For most of us the side effects are lessened with inj. MXT. By the way I was a surgical nurse for many years. I refuse to let the disease win. Lindy

Is injectable MTX better? What are the benefits? I mean i have given injections to patients in the hospital but I dont think I can do it on myself.

It's nice to know that you were able to continue your nursing career even with arthritis. That is one of my biggest fears!

Thank you again for all of your help. Things are a bit overwhelming right now and it is so nice to hear from someone who has been there.
Actually I had left nursing and was working as an advocate for the state in the geriatic area and also ran a business. I had to retire early due to RA/PA/OA. I have a triple threat and mucho damage and complications. I don't expect your journey to be like mine. It's been diagnosed early in the disease process and you're not in denial.

Injec. MXT is absorbed better than oral. By injecting you get more bang for the buck. I just inject MXT in one leg and Humira in the other. Lindy

Well considering your only on the Methetrexate therapy its not so bad, I had to start with that as well as Remicade infusions, so the treatment would suggest your possibly in the beginning stages of it, or their seeing what your body can handle. All I can say is definitely be patient with it! Patience is the hardest part of the treatments, they do work but it definitely takes time and when your able to do normal things again, you'll smile and life will return to somewhat normalcy for you :), I wish I'd found it when I started looking at 22, so its a very good thing you caught it early. Hopefully it'll be easier to control, welcome to the group and good luck buddy! Even some of us young ones end up with these things, if anything it becomes an eye opening experience for some of us, and I know I appreciate alot more than I did before I learned about this disease. Hi Mara,

I haven't been on this board for ages but I passed by and I saw your post and I thought sharing my story might help...

I began having symptoms several years ago but they were dismissed as various things time after time until finally three years ago I was diagnosed with PA. At the time I was about to start training as a Probation Officer - a major career move that meant I had to study for a degree at the same time as working and doing 'on the job' training, all in two years! A bit like nursing training maybe? I struggled through taking various meds and eventually settled with humira and methotrexate with folic acid (which is very important with the MTX) and some anti-inflammatories and painkillers as I need them. Those 2 years were hard, not only because of the intensity of the course and the physical limitations of the PA but also because I was grieving for the physically active, practical and capable person I once was. It took alot of soul searching for me to work out a way to live with my new state and every so often I get a little reminder but on the whole I am doing OK. You can live with PA, you just have to do some things differently, every one is different and everyone has a different experience if the disease, you just need to find your own way of coping...

Try to find out as much as possible about the disease but make sure you use trusted resources - the Johns Hopkins website is a good one. A few tips fo coping with MTX - make sure you take the folic acid, it helps with nausea and other side effects, take it in the evening before bed as you'll sleep off most of the nausea, here in the UK you start on a tiny dose and increase it every week to the dose they want you on to allow you to get used to it slowly - check out with your Dr if you can try this if it's too much for you... Drink lots of water and eat as healthy a diet as you can to try to keep yourself as generally healthy as possible.

I hope you're feeling better!

Be careful, Mara, with MXT: since you're so young, a pregnancy with MXT in your system would be very unadviseable!

I have had PsA for 5 years now, and have burned through most of the meds. I am now only treating the pain, and am hoping for something down the pike that is not so toxic to the system.

Hang in there! PsA is becoming more "popular" to drug companies, so more research and more money is going that way. Here's hoping!

dear wav2me16

Hello - welcome ,I am glad found you here ,I wrote my psoriatic arthritis story and sent to message boards in title (seven head Dragon) that 54 members in this site have seen it .I have claimed that I prepared herb drug for my Problem (arthritis) detaile' please contact with me

Mara,

Hope this is a little inspiration, this girl inspired me.

I was at my RH infusion center for my Remicade infusion and in the chair next to me was a very beautiful 21 year old girl. We started talking and she like myself has PA, she was diagnosed at 16. At first i felt very sorry for her, bsing so young and having so much infront of her and now having to deal with this. However as we talked she told me how she was enrolled in UNC, was studying Biology and some neutrition subject that pertained to diesease control. She chose her path to try and help others in similar situation as herself. her main gripe was the fatigue and that unlike some of her fellow students she wasn't out partying all night, but them with a smile admitted that she probably wouldn't have been out aprtying anyway. The one thing that really stood out to me was that unlike myself that was looking at this as a life sentence, she was very upbeat about her future, never fearing that she would not be able to acheive what she st out to because of PA.

I have not been scheduled at the same time as her since that one time last Christmas, but whenever i have a down day i think of how this is just a little hiccup and to get on with what I want to do not what PA wants me to do.

MTX is hard at first but gets better, we are all afraid when we first start on it. in the months to come your doc will try other drugs and in time you will find the right combination to not get rid of but better control the effects of the disease. The best advice i can give is to reitterate what has already been said pace yourself, rest when you need to, I dont stop doing thing, i just plan ahead and get some extra rest the day before and the day after to compensate for the day i climb the mountian.

Hi!

My brother used to suffer a lot with the same problem psoriatic arthritis. That was a painful moment in our life. Along with doctors prescribed medicines and some exercises, we also gave him Curcumin Extract Capsules. It worked for him nicely. Now after 6-7 months (approx) he seems to be more healthy and feeling better.wav2me, i am a nurse, and started having problems when i was in nursing school. At the time thought it was fibromyalgia. Diag. 2 years ago with PA. I was afraid of starting mtx.so i put it of for 6 months, i wish i hadnt because it takes a while to feel better,and become fully effective. You cant see this disease doing damage,but it is.the medication hopfully will slow it down. I am a psychiatric nurse,so i dont have to worry about infections from other pt's and i am not on my feet as much as being on the medical floor. I wish you luck, there is alot of support on this board!

kelly

I've just noticed that the trolls are posting regarding their alternative treatments. Please do not take any of these preparations along with your medications. I use some alternative treatments but they're prescribed and monitored by my naturpathic physician and my RD. I certainly would never take or order anything from someone on one of the forums or from the internet. Just some advice. Lindy[QUOTE=LinB]I've just noticed that the trolls are posting regarding their alternative treatments. Please do not take any of these preparations along with your medications. I use some alternative treatments but they're prescribed and monitored by my naturpathic physician and my RD. I certainly would never take or order anything from someone on one of the forums or from the internet. Just some advice. Lindy[/QUOTE]

I'm not fully agree with you. There is no harm in using alternative medicines especially if they're herbal products. The products like Curcumin extract etc does not have any side effect so one can use them along with other other medicines. But still if you have any doubt you can talk to your doctor.

Herbal products can affect the meds you are taking it is very foolish to take herbal supplements without consulting your dr FIRST!!!!

I use herbal supplements for my allergies, liver health, and a skin disorder. Like I said earlier, my doctors work together on a treatment plan. Lindy