I am 30 yr old, male, single, living in India. I just got diagnosed with PsA last Friday. Obviously, I have lot of questions, any answers will be helpful.
Little background: I had psoriris on my skull since 2010. Then in August 2011, I was hospitalised with fever and few weeks after that I started having pain in my neck and shoulders. I went to the doctor (ortho), and was told that I had spondylysis, and was recommended physiotherapy. But it didn't help and I developed pain in my left wrist, elbows(pointed bones), right thigh just above knee and both foot over nxt 4-5 months. In March, pain in left wrist and shoulders subsided to a large extent, but I developed slight pain in lower back.
Finally, I was referred to a Rheumatologist and was diagnosed with PsA. I am getting some blood tests done and meanwhile he has started me on medication including............
I know some questions to start with:
1. Do I have to be on medication for ever?
2. How often do flare ups occur? In general, when they do ocur how much time does it take them to subside?
3. Since I have been diagnosed and on medication, does PsA spread to other body parts with time or my doctor can control it from causing any further damage? Basically, I want to know, does the pain increases with time.
Sorry, forgot to include the medication, my doctor has given me: Rabeprazole, Methylcobalamine, Methylprednisolone, Methotrexate, Sulphasalazine and etoricoxib.
Also, I forgot to mention that I have swollen fingers on left foot.
2. How often do flare ups occur? In general, when they do ocur how much time does it take them to subside?
Some people go months others have had a flare had it gone away for years, the earlier and more aggressive the treatment is the better the results
3. Since I have been diagnosed and on medication, does PsA spread to other body parts with time or my doctor can control it from causing any further damage? Basically, I want to know, does the pain increases with time.
Roughly 60% (depending on the study) get no worse and have some improvement (keep in mind things aren't so great right now for you so even if you are in the 60%, things may be not so great until you "adapt" some - most of us do, but againeveryone is different
Thanks for your help.
Sorry I couldn't be more help The cool thing is you are in India (not Indiana, I assume) Some of the biggest advances in treatment have come from there and Korea. The other thing is of the 4 (or 5 depending on who you read) types of PsA only 10% - 20% get the really bad kinds, of those only a small percentage have significant problems. You mentioned spondylisis, that is concerning but is also a descriptive term for spinal pain. Hopefully its not spondylitis. That usually does progress.
Thanks for the reply. Sorry, I may have confused you a little. Actually, I do have neck pain but spondylisis diagnosis was incorrect (I had a CT scan done).
Also, you mention, I should "adapt" some. Can you please elaborate? Are you talking about making lifestyle changes?
And yes, I am from India. Can you please tell, what kind of advances are coming from India and which institutes, so that I can check them out?
Guahati medical College is one. Although primarily pharmaceutical research they have done extensive research in identifying specific pro-inflammatory cytokines. At present the Biologics are pretty much shot gun approaches shutting down anti-tnf's in general. The more specific the cytokines identified are the more effective will drugs will be. More exciting is the possibility of stem cells being able to actually atler those protiens OR the mechanism by which they are produced.
The SGPI in Luckow is considered Internationally to be one of the BEST places for post graduat Rheumatology study.
Adapt - yes some of it is life style changes, but more importantly learning what a new "normal" is for you. The fact is many of us who are "doing well" are not doing as well as some in crisis. The difference being we have learned where we are is indeed where we are and to use some slang "deal with it" we may always be in some level of pain but we move forward living as normal a life as we can as if we had no pain........ Its a "new normal"
Well first of all let me say welcome to this amazing place for support and friendship.
I had all of the same questions that you just asked and while everyones PsA is diffrent I will tell you what I was told by my rhumey
1.) I will probally always need to be on some type of medication.....I am currently hoping to start cutting back soon but that probally wont happen for a while but my rhumey said I will always probally need something
2.) flare ups are special for each person so far ive only had one major falre up which lasted for well over 6 months and gradually got worse untill the medicine finally kicked in however if i do to much during the day, stand to long or walk to much i have a mini flare up so i then have to rest for several hours but each person has diffrent symptoms and flare issues
3) I was diagnosed in october 2011 and I thought that my pain was at an all time high and since i started mtx that day i assumed that i would start seeing imporovements boy was i wrong it got so much worse my pain and swelling was mainly on my right side of my body but i did also have a few on the left.....December was the worst month by far and then in january my rhumey gave me cortisone and started me on humira in combination with the mtx and i started seeing improvements rather quickly however ive spoken with many people who have had no luck with this combination
I wish you the best and hope that this was somewhat helpful to you
Sorry to hear you've joined our club, but I'm glad you're here. One of the things that you will discover from reading about other peoples' experiences (besides the fact that you are not alone!) is that, while there are consistent PsA themes, all of us experience the disease, and respond to treatment, differently. That's quite unlike a lot diseases. I often wonder how my rheumatologist does what she does -- it's all such a guessing game, and most of what works, works very very slowly.
I see that you are in Delhi, which is warm for a lot of the year. Most of us who live in cold climates find our pain is worse during the winter. So that, at least, is one thing in your favour!
Thanks you everyone for the replies. They have helped me understand to an extent what to expect and as I understand more about myself, I hope I will be able to do better with time.
I will keep you posted about what works for me and what doesn't.