I have had moderate to severe psoriasis for twenty four years. A skin disease that is difficult to live with socially, emotionally and physically.
I made a trip to yet another dermatologist to see if my symptoms could be relieved with anything other than daivonex or daivobet ointments which I have used faithfully EVERY day for twenty four years with very little (mostly no) relief.
Six weeks ago I had a weakness and pain in one ankle. When it spread to both ankles and both knees I knew something was up. It was. The dermatologist advised that I have psoriatic arthritis. This is my second week on Methotrexate.
So to add to my disfiguring skin disease - I now find that it difficult to walk (sort of a hobble) , kneel - ouch!!, and I am exhausted whenever I attempt to do anything too physical. - like mow lawns, weedwack paddocks, clear brush, spray gorse, chase my four pet sheep around the paddock.
I have read many of your blogs about fatigue. Oh, yes, I have that too. And crying spells, and what makes it all so much worse - I cannot even have a glass of wine on my new medication, I am even trying gluten free (note the word trying) ..
Oh dear, I am moaning... I am trying so hard not to moan. I hear that the first few months of PsA are difficult.... waiting for the meds to kick in.... so I am hopeful.
I look forward to reading your blogs and posts.. and any advise is most welcome...
I know that you'e thinking that this is more to deal with, but when you get things under control, your skin will also clear up a lot.
American doctors are pretty strict about not drinking at all, but outside of the US, patients are told to keep it to a low amount, one or two drinks a week. Some people truly can not drink at all, but most people can have the occasional drink and not cause any harm. I did gluten free for a number of months, but it only makes a difference if you have a gluten sensitivity. Clearly I did not.
This is the gap for you, and a new diagnosis is hard to deal with. You've come to the right place for lots of support.
KW, if you can’t moan here, where CAN you moan? But I agree with Sybil: you are just telling it like it is. We know that, because so many of us have experienced just what you describe.
Living in Mangonui and not being able to have a glass of wine is truly a tragedy. As a wine lover who has been to Mangonui, you have my heartfelt sympathy. However, with time and experience you will find a compromise that works for you.
Don’t worry about sharing your moans, rants and frustrations here! When we get fed up with your whining and we think you are wallowing rather than working to help yourself, we will let you know – trust me, we’ve been there and done that!
Meanwhile, make yourself at home here and be sure to ask if there’s anything that we can help you with.
Oh, thank you, Seenie, Stoney and Sybil for your comments. I am so pleased to have found this site and be able to communicate with others with the same disease.
Wow.. Seenie you have been to Mangonui in New Zealand.. I see you are from Canada. I have loved my time spent on both the Vancouver and Toronto coasts.. beautiful country. I also live in Ventura, California - I do my writing in New Zealand - hidden away in secluded bliss overlooking Doubtless Bay. Wonderful! You cannot find better white wine than New Zealand Savs.. eh?
Yes, my Doctor said that I can have a "little" wine.. emphasis on "little" which I took to be about 1/4 of a glass and very rarely.. which seems sort of like taking a bite of chocolate - (I am a full block of chocolate - kind a girl)... Deprivation is not a word I understand... hee hee I will wait to see how my weekly blood tests go before I dare to take a sip.
So, thanks for your generous and understanding comments. I will try to pace my physical activities.. and promise to visit this site when I am having a "good day" and not just having"sorry-me" days.
It is good news to hear that my skin will clear up substantially... now that would be a gift from heaven...
I am hoping that I am not sensitive to Gluten ... I'll give it another couple of weeks -
What is sad - is to know how many of us are dealing with this disease. I wish you all a wonderful, happy day.
Hi Kiwi Writer. First off, I'll say I'm not a great writer, so please don't judge me for that.
I just wanted to tell you, because what you said about psoriasis was so familiar to me, you may not be putting up with psoriasis much longer. That is, well, I'm not sure if methotrexate helps (because I never took it) but I had psoriasis for nearly 40 years and now that I started Enbrel it's almost completely gone! I've been in long pants and long-sleeved shirts for most of my life and now my skin looks normal and my body feels normal because Enbrel took away most of the pain, too.
Just wanted to tell you you're on the right track to becoming healthier--and it's good that you got treatment as soon as you started having PsA symptoms.
What great news!! I would LOVE my ugly psoriasis to be GONE.... Wow... you had it for nearly 40 years... I do so feel for you. Now retired and writing for fun.. I live in complete isolation so can bare my arms and legs.. but when I have to go into public it is long sleeves and long pants...
I would love to take Enbrel.. but New Zealand has a free health care system (so wonderful) only problem is for the expensive drugs like Enbrel..patients have to go through all the other options first...
You must be loving your new skin... It has taken a long time for the drug companies to address psoriasis sufferers - finally we now have options.