I was diagnosed 11 months ago with PsA. I'm 29 and have been on Enbrel and Humira with little luck. My doctor is trying to get me on Remicade due to the aggressiveness of my PsA. I just have a question for anyone with PsA and who is dealing with the sweltering heat outside. I live in St. Louis and we have not had a day this week that hasn't been under 105 degrees with at least 107 heat index. I was just wondering if anyone else experiences more pain and joint swelling when the heat is worse? My week has been very difficult due to more hand swelling, hip pain, foot tendon pain and even my psoriasis has become worse and will bleed. I was just wondering if anyone else had anything like this happen and what you did to help.
I'm on Mobic and Prednisone. I've been on prednisone , different amounts, since last August. I think I permanently have the prednisone puff face. lol. Thanks for the advice. I'll have to look into it.
mltoups said:
Leah, are you using an anti inflammatories? If so, make sure they are not sodium based, that will only add to your swelling issues.
I was holding up rather well until the kids came, was out in the heat much more than usual, after the third morning, I woke up with a badly swollen left knee, foot and ankle, they are not usually my problem area, but there just the same. Could have been the heat, the stress of having 2 grandkids for a few days, could be a storm brewing...
Usually Saturday is my 'happy day', because my Enbrel shot is Friday evening. It's okay, I know I'll have the good with the bad, Enbrel has already impressed me! Having the kids is better than Enbrel, good for my heart, and having the kids is also better WITH Enbrel, it helps my movement, pain level and in turn does alot for my personality! LOL!!
I don't have psoriasis, but the grandkids all do, and theirs totally clears up in the summer, the 9 year old really suffers in the winter! I am always working on him! So sorry yours is flaring up!
It was 99 degrees here without the heat index today, so I do feel your pain there, but it sure beats the freezing cold, damp winters!
Don't know if I actually answered any of your questions, but nice talking with you!
Thanks for your response sk! I was on Enbrel but unfortunately it did not work for me. I'm on Humira until we get approval for Remicade. My husband and I are going to try and start a family next year but need to get my pain somewhat under control first. The winter is bad too, I only have it on my scalp but it's still a bother, but due to our mild winter this past year it was not too bad. I hope you continue to feel better and keep enjoying those grandkids!!! Thanks again!
I didn't like 'Id' for you, too pretty a gal for that, so let me know how you like this!
So sorry the Enbrel did not work for you, I hope the Remicade 'does the trick', I hope that you can regain some strength get rid of some pain and have some beautiful babies!! Oh, nothing like a baby!!
I guess extreme weather is just hard on us! I always had a limited comfort zone anyway!
Many have recommended Coconut oil for the Ps. I use it on the boys too, helps! The gals say it's good for the hair too! Some take it internally, make salad dressing, cook with... I haven't tried that yet. When I have those boys, it is all I can do to keep up with them, the laundry, and always prepare them good fresh food, by then...I'm down! It's the happiest tired in the world!!! LOL!!
There is also a certain shampoo they have tried and recommend, if I run across the name, will be sure to pass it along for you, Ni Ni! Yes, you do look like a Ni Ni!!
Hope you are having a good day, time to go scrub the face paint off the gs!
Lol. the 'ID' is actually a lower case LD for my first initial of my first and middle name Leah Diane. I'll answer to whatever though :) I use Talconex scalp on my scalp to help with the psoriasis but since it's a steroid I can only use it 3 weeks on 2 weeks off and since nothing is clearing it up otherwise it just comes right on back.
I tried the coconut oil but it actually made me really tired!
Thanks again and have a wonderful rest of your weekend!!
I have done, Enbrel, Humira, Rituxan, then double dose Enbrel for pustular psoriasis...I got put on Remicade 15 months ago, and it's helped the peelings.
I've seen that heat St.Louis is getting on the news!...We are just getting out of the heat wave in Chicago, tonight.
I do flare more with heat/humidity, than with winter/cold
Thanks so much! I've been reading on here that a lot of people have been helped by Remicade so I'm ready to see if this will work for me. When I was on Enbrel I was on one shot a week and it still didn't want to respond to treatment, Humira is just 2x a month but is not helping . I'm glad you are getting some relief though!!
St. Louis summers are pretty brutal and with having it be 100+ all week it's been rough. Setting heat records that haven't been broken since the 1930's! But we are finally getting some rain tonight. :) Quite happy about it too!
Thank you Leah, guess I should have known that, just play along, I'm old, surely half blind, half nuts! LOL!!! You have a very pretty name! So nice talking with you!
ldcherni said:
Lol. the 'ID' is actually a lower case LD for my first initial of my first and middle name Leah Diane. I'll answer to whatever though :) I use Talconex scalp on my scalp to help with the psoriasis but since it's a steroid I can only use it 3 weeks on 2 weeks off and since nothing is clearing it up otherwise it just comes right on back.
I tried the coconut oil but it actually made me really tired!
Thanks again and have a wonderful rest of your weekend!!
It dropped 20 degrees in the midwest..Yea!...Yesterday it was 99 by 11AM, and humid...blah..OMG our electricity bil from a/c is going to be so much$$$$
can't imagine loosing power like so many did....So far maybe 10 heat deaths, one lady didn't have a/c, elderly , they found her dead with a temp of 109
was hard on the doggies too
and we got a drought going, hubby just found 2 fireworks ( illegal in my state)..but who stops them?...right under the kitchen window...thankfully no fires!
I know! It was supposed to be a bit cooler here today but no such luck. We did have some sever thunderstorms but we didn’t get nearly enough rain as we need. I think we have only seen 2 heat related deaths so far, which is really good for us since we usually have quite a few more. And yeah, I can’t wait to see our electricity bill! Plus our ‘summer rates’ went into effect so they are going to be higher either way.
I couldn’t deal without power. I’d have to go somewhere else. I felt awful for all those people who were without.
I don’t let my dog out too often other than to go potty, it’s too hot for him (he’s small and furry) and the asphalt and concrete gets SO hot!
We’ve had fireworks bans out near us, we still hear a few going off but most people are smart enough not to play with them. We haven’t been to bad on fires. We had one near our house but it was closer to the highway than us, someone threw a cigarette out their window and lit the side of the highway on fire! Mark Twain forest is still dealing with their fires too. My husbands family lives in Northern Wyoming and they have smoke everywhere due to the fires in the surrounding areas.
Cooking is SO hard. I don’t want to turn on my oven and heat up my house!!
Hey! Well I am also near St. Louis, and the heat as been a killer these last few weeks, I am trying to stay in as much as possible, I have noticed a huge flare up in my scalp since the heat began, and my body is very sore again. I am on Humira and Methotrexate and they help but in no where near where I want to be and this weather is not helping me either!
My scalp and joints are just like yours. I'm on Humira, prednisone and Mobic. I'm waiting on insurance approval of Remicade . I've been hearing good things about it and it's looking like my only next option anyway. :) Hope you stay cool!
Hi..I did Humira, along with NSAID Relafen, and Mtx for 5 yrs, 2003-2008, after enbrel ( i was up to the wkly injections, and it konked out)..Went to Rituxan for a year, didn't work...and i am sero-negative, but sed rate went up
....Now that i think of it, i always had a scaly patch on one knee, and elbow..The rheummies should have seen that........The pustular psoriasis did begin in summer!........and i've tried every steroid cream, latest one is halobetasol, for palms/feet......and they do think the skin.........Enbrel helped the joints, but not the peelings...so yea Remicade has helped it..i would say 80% better, and
totally better on the soles of feet.
I started out slowly 300mg, and almost at maximum of 900 mg on infusion now, every 6 weeks
PS: tried Olux-E....didnt help co/pay was about $80..these expensive ointments cost $200..Halabetasol is cheap
Good luck with Remicade. I tried it and ended up with severe heart palpitations...to the tune of $4000 in cardiologist bills! I know I am the one in a million wierdo, so hopefully it will help you! I am on the enbrel, it helps some, but none of it has gotten rid of my patch ps.
I truly wish you the best of luck with it all. I know that children have made my life amazing. I hope that you are blessed as well!
Stay cool and good luck!
Michele
Oh! P.S. be careful with the prednisone....long term use can cause cataracts. :-(
I'm glad the remicade has helped you. My Rheum seems to think it's going to be a good one for me. I'm trying to lose weight but my body NEEDS exercise to shed the pounds but if I can't get off the couch due to pain how am I going to get up and go walk around the block? Granted it's not the greatest weather to do it either ;) I'm glad you're getting some relief even if it's not 100%. In regards to my heart I know that they have tested it in the past few years, they thought I had a PE (luckily not), and my heart is in good shape. I don't tend to get too many side effects so I hope that stays the case,....we have enough to deal with! ;). I'm on Talconex for my scalp and I was fortunate enough to get a co pay assistance card from my dermatologist or it would cost me $729 a bottle. :/ I'm glad the Enbrel is helping you though!! Anything that helps right?
It is so hard to lose or even maintain weight on Prednisone or just about any other steroid, including the injections. Hopefully the biologic will be so effective, you can stop the steroids.