OK, peeps. I know I have whined before, but I really am discouraged.
I just had my 4th orencia infusion 2 weeks ago and I really feel like I am worse ! I know it is slow acting and I might need to give it another couple of months, but my symptoms are a lot worse this last month. I just came off a prednisone taper which ended three weeks ago, because I had a nasty "flare" but as soon as I went back down to 5mg of pred I have been miserable. I can walk, but it is very difficult and painful.
What can I try now? I don't know what options are out there for me at this point. I have flunked Remicade ( infusion reaction). I am only on 7.5 MTX a week. Doc took me off Plaquenil because it didn't do much for me but I have never taken it WITH MTX. I think I read on Medscape that taking them together can help with RA, but it didn't mention PsA.
My pain is an 8 or 9 and is from my back and hips all the way down to my toes. My knees are swollen and my cankles have cankles,
Should I call my doc ? I don't know what he will say, and I really want to avoid prenisone again. I am scheduled for my next infusion on Sept 4th.
On a happy note, I have a new part time job as a PRN arts counselor at an arts center for developmentally disabled adults. I really love it, but I was really happy I was off today, as I don't know how I would have done it. I also have a new art studio in a brand new Gallery in town. My rent is manageable and I did sell enough of my work last month to make next moth's rent, It is a happy place and being there has done a lot for my attitude. It gets me out of the house, which is good. I tend to isolate myself when I feel crummy.
Thank you for listening. I don't know what I would do without this community. Welcome to all our new moderators !!!
Oh MimiB I am sorry you are feeling badly. By all means call your physician. Tell him you would like to avoid prendisone, I am sure he will respect it. I bet he will increase the mtx or add something to it. Are you injecting it? I was able to go to a higher dose by injecting it.
I am so glad to hear about your new job! It sounds perfect for you! I am also glad to hear your finances are looking up.
What are you using for pain. NSAID and Tylenol? wraps and splints? I soak in a hot tub with 2 cups of epsom salts in it a couple of times a day when it is bad. I also alternate heat and ice. Any of this help?
Try a sports cream or Ben Gay or Salonpas after your bath if you have them. I also alternate my heating bad and ice packs too. While eating ice cream or sipping smoothies of course!
I hope you feel better soon Mimi. You are in my thoughts and prayers as always.
Mimi, I hate that you are feeling so crummy. I second Michael; you should call the doc.
Gentle splinting can really help, both with swelling and pain. Try some nice ice packs on the ankles and knees, and get your legs elevated. I have these ice packs that are filled with gel called, “Ace, Large Reusable Compress” it has “exclusive soft touch fabric”. These had turned out to be the best for the knee and ankle swelling I get each month.
Going up on the MTX is an option. It might also be that you need a longer taper on the steroids. You could be one of the special people (like me) who has become sensitive to steroid withdrawal.
For pain, you could try SalonPas patches, or talk to your doc about a topical compound with no NSAIDs in it. I can’t tell you how much the topicals help me. I also do warm baths, but I add eucalyptus oils or lavender or both. Get the candles out, fill the tub with bubbles, and essential oils, and add either Epsom or Sea salt; climb in and relax. It may only be temporary relief, but it feels so good.
I hope you get some good help from you doc. Make sure that you don’t hurl anything at the TV when Phil is doing his commercial. Flat screens just don’t hold up that well.
I am sending you good thoughts. Remember that you are never alone and we do know how much it hurts. (((HUGS)))
Hot showers for me, and ice on the specific joints. I have a substandard tub for soaking in. I’m working on convincing my husband that a bigger tub or a hot tub would be therapeutic. Probably not going to work. And I use topicals. Thanks for turning me on to SalonPas, Michael.
Congrats on the job, and I’m so impressed that you are selling enough to make rent on a store front.
I'm so sorry you're having such a rough time. I'm contemplating switching biologics and found this chart that compares the options. I'm going to use it discuss with my doc on my next visit.
Yes I would love to hurl something at those Phil Mickelson commercials :-)
GrumpyCat said:
Mimi, I hate that you are feeling so crummy. I second Michael; you should call the doc.
Gentle splinting can really help, both with swelling and pain. Try some nice ice packs on the ankles and knees, and get your legs elevated. I have these ice packs that are filled with gel called, "Ace, Large Reusable Compress" it has "exclusive soft touch fabric". These had turned out to be the best for the knee and ankle swelling I get each month.
Going up on the MTX is an option. It might also be that you need a longer taper on the steroids. You could be one of the special people (like me) who has become sensitive to steroid withdrawal.
For pain, you could try SalonPas patches, or talk to your doc about a topical compound with no NSAIDs in it. I can't tell you how much the topicals help me. I also do warm baths, but I add eucalyptus oils or lavender or both. Get the candles out, fill the tub with bubbles, and essential oils, and add either Epsom or Sea salt; climb in and relax. It may only be temporary relief, but it feels so good.
I hope you get some good help from you doc. Make sure that you don't hurl anything at the TV when Phil is doing his commercial. Flat screens just don't hold up that well.
I am sending you good thoughts. Remember that you are never alone and we do know how much it hurts. (((HUGS)))
I am very sorry you are having such an issue. I understand first hand and omg, i.pray for a time when we can all get some relief from this horrible disease. This is the worst pain i have ever experienced my self. I hope you get thru this on s better note. I.will be thinking about you, and praying you get relief soon.
Hugs and lots of love to you, Mimi!!! What a frustrating place to be in. I hope you find some relief soon. I'd definitely call the doctor to discuss it - can the doctor change your dosage or frequency of your infusions to help give you more continuity in your disease management?
So happy to hear you're enjoying your new pursuits! Do you have a website for your artwork?
You may want to hurl at Phil, but keep in mind he has flares too. He had to withdraw from numerous tournaments last year because of a big one. He finally wins a big one and he can't even hold on to the trophy and drops it conking his daughter in the head. His wife picks it and holds it for him. TRUE STORY.
But Mimi, I cant believe how far you have come. A year ago you were selling jewelry on the internet wondering what
to do, thinking of disability or any other option. NOW look at you professional artist, a studio, part time teaching job.WOW! Like the others call the doc, but think how far you have come. Ask about injections or flector type patches for the pain areas. The pain you are describing is pretty classic. The flare at 5mg of predi is also pretty classic. Your adrenals likley haven't gone back to work. They will (it may take a few weeks). In the meantime PLEASE Start another "looking good thread" a lot of people got a lot out of the last one... Assuming you haven't gone all artsy an adapted a layered paisley look.:-).
I hear you on the splinting and braces. They make me feel worse (except for my IMAK compression gloves). What I've found works for me is K-T Tape http://www.kttape.com/ The tape is cloth-like, but VERY stretchy.
It is used by athletes, who need support, but still need full flexibility. There are videos on the site of how to apply for all different body parts. I use the "Pro" tape, it holds for 2 whole days. I was able to purchase mine at a large sporting goods store. I think it is 50 strips for $20. I also like that it doesn't inhibit clothes in any way, as it is SUPER thin, and doesn't make weird crunching or squeaking noises like a knee or elbow brace can :)
I am in a flare as well and truly feel your pain. I also sometimes have to remind myself Phil must have bad days as well. I really hate the ‘take one Aleve and get relief for 12 hrs’. But on a great note you have a studio and are selling your art as well as your art councillor job!!! That is awesome. I would love to see some of your art.
Call your doc and try to stay strong. Know you are not alone. And feel free to vent as needed.
I started again Smitty, its just an excuse to drink a few beers with buddies. I think we "forgot" to tee off last week. BTW if ever wonder where his enbrel endorsement money goes here's a pretty good site/program for PsA information. He is also funding some of the research (although education and breast cancer are still his primary "things")
Talk to your doctor about this combination as it requires a close eye and frequent blood tests. You can certainly go up on that methotrexate dose.
I wear the wrist splints when I sleep and it helps. I don't wear them during the day if I can help it, during the day they see to make things worse. But at night it keeps my wrists and hands from ending up in a position that causes more pain in the morning.
Then there is music. I put some mellow enjoyable music on, put my ear buds in, lay down and concentrate on the music. It is a sooothing thing to do. When we are in pain self soothing is as important as pain control, lessening the stress helps the body relax and lessens your pain level.
I love your art work. During my midlife crisis I opened a bead shop and taught classes. I have so many beads but my hands do not cooperate. I am so pleased to see your art, it is truly beautiful. Art is also a meditative process that helps with pain.
Since I am no longer working I wear tie-dye almost everyday. My nickname around town is "tie-dye Debbie".
thanks for the link. Interesting reading for sure. As for the golfing..male friend of mine also has PsA..says golf carts and beers and good friends make him feel almost normal again :-)
tntlamb said:
I started again Smitty, its just an excuse to drink a few beers with buddies. I think we "forgot" to tee off last week. BTW if ever wonder where his enbrel endorsement money goes here's a pretty good site/program for PsA information. He is also funding some of the research (although education and breast cancer are still his primary "things")
