Hi everbody. I am new to the site.I am grateful and relieve to find such a supportive site and full of valuable information. I have been diagnosed with psoriatic arthiritis more than 2 years ago. My medical team prescribed me methotrexate and prednisolone (as well as neccessary supplements) and gradually increased the dose.
I have responded very well to these medications with minimal side effects like occasional nausea, feeling depressed and gaining about 20 kgs. I cannot really call 20 kgs as minimal but a small trade off for being able to function 100% and pain free.
I am currently on 20 mg of methotrexateI, down from what used to be my maximum dose of 25 mg as advised by my rheumatologist. The aim is to completely stop it in the future with no flare ups hopefully.I have also stopped taking prednisolone for about 5 months now and have gradually lossing weight in the process.
There is light at the end of the tunnel. Great support and education that this site provide helps a lot of sufferers with their journey. Thank you.
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dimple75
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Welcome, I have found this site very supportive in the last year or so, and as you have not long been diagnosed with psoriatic RA, I am sure you will find plenty of friends to help. I hope you will achieve remission before too long, and glad to hear you've managed to stop prednisolone, a great but destructive drug. Take lots of care and look forward to hearing from you again.
Good morning Jenyy. Thank you for your response. Yes, 'remission' is my driving force. I guess its not only the itching, bloating or debilitating pain the sufferers experience. It is also the struggle of maintaing positive attitude as well. There is that psychological aspect that people fail to recognise that is sometimes I think, more debilitating to some. Enjoy your day.
Good morning. I can certainly feel the rest of 20 kgs down my hips haha. Sometimes it feels useless exercising.When steroids stopped though, amazingly the classic moonface went away.I have become fascinated with my condition and acceptance suppose gave me that inner peace.xx
Liz, I have been impressed with your outlook and acceptance of the PsA. I have had PsA for over 40 years, and RA the last 12. I teach a support group for Arthritis and Fibromyalgia, and the first thing we stress is Acceptance. A person cannot seek or accomplish wellness until they first accept they have an illness to deal with. Then we investigate what can be done, and go on from there. I have had to add other drugs to the MTX over the years, am now also taking Leflunomide and Simponi, one of the newer biologic drugs. I am probably as good as I can get at this point, and I do pretty much all that I want. I live alone, have for the last 22 years, though have recently met the most charming and thoughtful, indulgent French gentleman, who has been living in the states for the last 20some years after his wife died, and has one 25 yr old son. I am actively involved with 3 organizastions, do all my own housework and gardening. So, I wish you all the luck as you venture through the years. Never give up, even on days when it seems so hopeless. I know these drugs are keeping me out of a retirement home or nursing home, so I just take them and get on with the day. Don't be afraid of pain meds. They are meant to allow you to be active. All the best, Loret (in Ohio, USA)
Hello Loret.Glad to hear from you.Thank you for such encouragement and all the best with your newly found prince charming. Good for you for being so strong, positive and being involve not just with one but 3 organizations. You are a role model.I am impressed of how you find all that time let alonen deal with your condition.
When it comes to drugs, I hate taking them and what I had to take were far less than what you and other people are taking. I am glad that I am down to just MTX, folate, calcium supplements and conttraceptive pills.I used to take prednisolone and naproxen. My pain was debilitating I ended up in ED.My fingers just locked up one morning, nearly dropped the kettle and nearly burn myself one morning and wasn't able to walk with terrible plantar fasciatis.
It was an eye opener for me Loret, had trouble combing my own har and look after my children it really scared me. Just very simple tasks we take for granted became a delimma.I used to work more hours, 2 jobs to make ends meet, dealing with separation and what life throws at us really. Doctors can't find what caused it and no cure just manage it.I was told not to get stressed so I have a new mantra now Loret, to get rid of anything and anyone that gives me stress. I jokingly told my new partner that he's the only left so far haha.
I have also stopped using steorid cream for both lower legs but the scarring remains. I still use special shampoo/contioner and medicated lotions for my hair.I am lucky as it only affected my lower legs and hair. I met people here that are covered with it.It gets a bit tirng at times having to get up extra early just to lather myself up with such concoctionso n top of working full time,be a mum and a partner but its all worth it.
Like you I try to keep busy, not a member of any organizations though but would love to travel and do voluntary work in the future. I figure that if I keep busy i won't have that time to feel sorry for myself haha. I still get down at times but I try to count my blessing really thinking my condition could be a lot worse. I am functioning 100%, have 2 beautiful kids, great job and supportive partner, so I am not in the position to winge.
I am very glad that we now have permament Rheumatologist here in Darwin (northern part of australia) instead of someone visitng once a month. I hope he stays for good. Our services has also improved here as we have now a UVB phototherapy here in our hospital. I just hope the waiting period to see the Dermatologist will improve though as we only have one. we have more crocodiles here than specialists I must say.
I think I have said enough for now. Sorry I can get chatty. Thank you for your response again. Take care.
Liza, You do have a full plate, and remind me so much of myself in that very position. I had a husband who could not accept that I could no longer be superwoman, as I had been for 29 years. It is impossible to convince some people that, even with 8 spine surgeries I still ahve the disease and it drains my strength and energy. I worked full time for 17 yrs, while my 4 boys were all in school, and then college, one on to Medical school, others working and married and I kbew there was nothing there between us anymore. I was being left alone while he volunteered to help some farming buddies mow hay, combine the corn and soy beans etc. But that part is over, we remained congenial for the family gatherings for grandchildrens birthdays, Christmas and so on, went to grandkids sports event. He passed away last October from complications of uncontrolled diabetes.
Back to the PsA... I would suggest you ask your Rheumatologist about taking one of the Biologics, like Humira, Enbrel, Remicaid, and so on. Because.. As long as you have Psoriatic lesions, that also means your bones and small joints of hands, feet and spine, are still being affected, and can eventually lead to more damage. My Internist always told me, getting the lesions undercontrol is the deciding factor in dealing with the arthritis. Prevention is far better than dealing with damaged bones that cannot be reversed. So many times over the years, I have said I wished I had had these drugs 20 some years ago, before the damage to my spine, and feet and hands. I would not want to see you or anyone else go through that, since the drugs have been developed and proven very successful.
I know you feel 100% now, but if you still have lesions, the disease is not under control. I don't mean to scare you, but it is what it is. Maybe soon you can talk to your Rheumatologist and tell him what I and others have said here, encouraging use of Biologics to prevent damage. That is the most common practice here in the US, and I know the Rheumys know that.
Gosh good luck, glad you do have an understanding partner, and your lovely children to enjoy. They grow up and away so fast! LOL, like you, I can also write on and on All the best, do stay in touch here. Loret xx
Thank you Loret, you have have answered my thoughts (see below your comment). Although the medication has made the debilitating pain go to manageable level, I am still showing signs of the skin condition albeit not the amount I had before. Hopefully the longer I am on the medication it will abate completely. This latest meds have been for about 16 months now had yours all gone with you by then or am I expecting too much? Have had to stop either one or the other at odd times during these months through chest infection and blood test results not liking the meds, so that may have a factor to play.
Hi Loret. Husband, yeah I had one of those and I gave him the flicked.After sessions of counselling, now I know that I cannot continue to support everybody and forget about myself. A husband who rarely worked in about nearly 13 yrs of marriage and my family back home (philippines) who thinks I am digging goldmines here haha.So as I said, I have a new mantra now. I am still legally married and soon to be divorced yeheyyy lol can;t wait to change my name.
Kidding aside, I thought about what you said. Though I don't have active lesions anymore I am thinking long term and thank you for your advice. I will bring that up with my Rheumy next time.
Every now and then I feel achy but nothing major.Only because i am still carrying too much weight post steroids but I try to stay active. My day starts at 5 am as I do my cross trainer session for 30 minutes, extra time for all my lotions and potions and just to warm up.I do my exercise in the morning to get it out of the way. I also walk 10 kms (about 2 hrs) during week ends especially if Charlotte stays with her dad every second week ends and half of school holidays.None of these were possible 6 months ago. I persevered and refused to give up, I rest sometimes but refused to give up.
My hair is a very good indication though and I find it fascinating. If I am overwhelmed or had a stressful day, it itch a little then when its really really stressful, the itch is follwed by white flakes appearing with in 24 hours, bizarre. I rarely have that now as I have learnt to recognise situations and just don't put myself into difficult situation if I can help it. I was told the number 1 is ME. I am no good to anyone if I don;t look after myself.
I am in a happy place at the moment Loret and I am glad to have joined this site and got to know you. My little Charlotte is 8 and my son Earl is 18 not living with me anymore. He joined the Australian Defense Force, my baby boy not baby anymore.
I have to go now my footy team will be playing soon. Yes, I love my AFL, some find that very amusing.A filipina who loves footy. I don't drink and smoke but I love footy and love to cook. Take care.Lizaxxx
OK, you got me...what is footy? Is that like Soccer? I also love to cook, especially for someone. Living alone, I don't cook for myself as I used to for my family of 5 men!
Hi Loret..yes its lke soccer really.Good to know you love to cook as well, especially for someone. In about 2 weeks here in darwin, dry season markets starts and very popular usually attracts tourist. Its a time of the year that it is pleasant to come and visit as the rest of the year is the 'troppo season' they call it. Its when everyone go nuts because of heat/humidity hehe.So during dry we like to visit the markets during the week ends so less cooking.xx
Interesting...I have not ever heard of the dry season and markets. Ove shopping at variety markets and finding new things to try Maybe someday we'll get to your end of the world! Stay well, Loret xx
I have PsA as well, I was fully diagnosed in 2010, although symptoms started in 2009. Reading between the lines of your reply above, you also have the Psoriasis on the skin, again I have that and have done since I was born.
Did your skin improved with taking on MTX, as mine did, I am now taking Leflunomide and injecting Etnercept (Enbrell), the skin complaint has returned with small patches on the elbow, pustular on the palms of hands and pitting and lifting of nails on both fingers and toes. Happily it has all gone in the head which I am so pleased about, as my hair is quite thin now through all the steriods that I have used on my scalp and my skin is thin again through the steriod creams that I was given back in the 60/70's. I eventually refused treatment for the skin complaint as I was fed up of smelling unladylike, being constantly greasy and decided to accept that my body would not change.
Having said all that I am still not fully accepting of PsA, and yet I should not be surprised that I got it as it was the last of all the types of Psoriasis that I had not got. Now I can say that I have had the lot! Some days I am accepting other days not. I would love to continue to speak with you and your acceptance of this disease, if you could pm me.
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All the best, do stay in touch here. Loret xx
Steroids 
No more meds, really!?!?!
If Meds have treated you bad, plz comment...
Tapering off Prednisolone 5 mg
Goodbye Simponi, going to try baricitinib
