[~Christina]

Quick question

Psoriatic arthritis and fibro here.

I am on Otezla for scalp psoriasis. Which it works wonderfully. But rheumatologist had me try Arara and now Sulfasalazine which hasn’t helped , been taking the sulfa for about 5 weeks. Maybe not enough time yet to notice any help?

The only thing left is Biologics , anyone try that class of medication? It really worries me.

If I try one I have to wean off the Tenex my doctor said biologics would also manage my scalp psoriasis,

I’m just a mess about everything in case anyone has seen my thread on bipolar forum.

I hope everyone is doing okay or at least being kind to yourselves.

[Wild Coyote]

Originally Posted by ~Christina

Quick question

Psoriatic arthritis and fibro here.

I am on Otezla for scalp psoriasis. Which it works wonderfully. But rheumatologist had me try Arara and now Sulfasalazine which hasn’t helped , been taking the sulfa for about 5 weeks. Maybe not enough time yet to notice any help?

The only thing left is Biologics , anyone try that class of medication? It really worries me.

If I try one I have to wean off the Tenex my doctor said biologics would also manage my scalp psoriasis,

I’m just a mess about everything in case anyone has seen my thread on bipolar forum.

I hope everyone is doing okay or at least being kind to yourselves.

I also have Psoriatic Arthritis. After Sulfasalazine, I was moved to methotrexate. My rheumy won't use Arava with me. I was very afraid of methotrexate (MTX) for years; yet, then talked with several people who had been using it 5-10 years or so, with no troubles. I chose to inject MTX because it has less effect upon the GI tract that way. I inject once a week. I take an anti-nausea drug 1 hour before injection.

Biologics are next for me if/when MTX fails. I am much more concerned about the biologics, as is my rheumy. She really does not want to have to put me on biologics.

That said, some people experience worsening depression with some of these meds and MTX is one of them, according to my rheumy.

Everyone is different. To be fair, I want to mention there's a member here who has had very bad effects from MTX (I think it was our own "cakeladie?")and my heart goes out.

According to my rheumy, drug plans/insurers can/do refuse to cover biologics if/when the insured has not tried all other options first. I am not sure just what that means for each case of PsA.

I am on my second trial of MTX (injection) -- it's not very expensive since I "draw up" the injection myself. The pre-filled syringes are outrageously expensive! MTX also clears up my skin.

Everyone is different, as you know. Maybe you have tried MTX and/or your rheumy does not choose to try you on it?

I think" the biologics currently approved for PsA are: Humira and Enbrel. I think there's another one recently approved and just a guess: Orencia.

My rheumy says she has PsA pts on Humira or Enbrel and they've done well.

It's all very anxiety-provoking. Like you need this! NOT!
Yet, you may find profound pain relief?

Please feel free to PM me anytime.


WC

[~Christina]

Originally Posted by Wild Coyote

I also have Psoriatic Arthritis. After Sulfasalazine, I was moved to methotrexate. My rheumy won't use Arava with me. I was very afraid of methotrexate (MTX) for years; yet, then talked with several people who had been using it 5-10 years or so, with no troubles. I chose to inject MTX because it has less effect upon the GI tract that way. I inject once a week. I take an anti-nausea drug 1 hour before injection.


Biologics are next for me if/when MTX fails. I am much more concerned about the biologics, as is my rheumy. She really does not want to have to put me on biologics.


That said, some people experience worsening depression with some of these meds and MTX is one of them, according to my rheumy.


Everyone is different. To be fair, I want to mention there's a member here who has had very bad effects from MTX (I think it was our own "cakeladie?")and my heart goes out.


According to my rheumy, drug plans/insurers can/do refuse to cover biologics if/when the insured has not tried all other options first. I am not sure just what that means for each case of PsA.


I am on my second trial of MTX (injection) -- it's not very expensive since I "draw up" the injection myself. The pre-filled syringes are outrageously expensive! MTX also clears up my skin.


Everyone is different, as you know. Maybe you have tried MTX and/or your rheumy does not choose to try you on it?


I think" the biologics currently approved for PsA are: Humira and Enbrel. I think there's another one recently approved and just a guess: Orencia.


My rheumy says she has PsA pts on Humira or Enbrel and they've done well.


It's all very anxiety-provoking. Like you need this! NOT!

Yet, you may find profound pain relief?


Please feel free to PM me anytime.




WC

Thanks !

I tried MTX starter dose and everything was fine , took full dose the following week and it sent my liver functions through the roof, my doctors were very worried and had me do daily blood work for a week.

I am scared of the biologics. Guess that will be a pretty long discussion with my Doctor. We might decide that just living with the PsA Pain along with fibro would be safer. Mix it all with my psych BP meds ? Who knows what the hell would/could happen.

Ugh !

[Wild Coyote]

Originally Posted by ~Christina

Thanks !

I tried MTX starter dose and everything was fine , took full dose the following week and it sent my liver functions through the roof, my doctors were very worried and had me do daily blood work for a week.

I am scared of the biologics. Guess that will be a pretty long discussion with my Doctor. We might decide that just living with the PsA Pain along with fibro would be safer. Mix it all with my psych BP meds ? Who knows what the hell would/could happen.

Ugh !

I am sorry about your experience with MTX.
Labs are critical.

I keep thinking about that, too. I'll bet "they" have no idea how the biologics mix with psych meds, and esp the newer biologics and the newer psych meds. It's a crap shoot!

I am afraid of biologics, too. Very much so.
That said, I'd try them under the guidance of my rheumy if MTX fails. Why? I am severely affected by PsA. I cannot walk w/o methotrexate or a med fighting the PsA process. I have put off both MTX and biologics for so long now, I am in the position of either using a med which helps or being in a wheelchair (not just in the future, but now). The pain is excruciating even at rest. So far, MTX helps and all labs are good. I went from a wheelchair to walking 2 miles at a time. The reason I am on a second trial is: I'd stopped it for 10 wks to see if it was adding to severe depression.

Much more is known about the older biologics. My rheumy states she has pts doing fine on Humira for 10 years. I dunno.

Uggh! Uggh! Uggh! Is right!
I am sorry you are having to suffer and having to make these types of choices.

WC

[La.Last.Lucy]

Originally Posted by Gus1234U

This is beautiful! Waking in the morning is often times difficult... I seem to always say that if I had a beautiful view that mindset would change, but not entirely sure. Been trying to find the things immediately around my apartment in the hood (not trying to be cool lol it seriously is) & I have been trying my best. Thanks for this great confirmation of what I've been learning in my books and applying it!

[cakeladie]

Christina I have seen your thread in the bipolar section and my heart is breaking for you. You my friend have not had a good year and I haven't for that matter.

I am glad you are not taking the mexotrexate. I was on it for years and my labs were ok it's when it started getting hard to breath that a CT scan was ordered and the real damage was discovered and I am not the only one this has happened to.

Jan once Belle starts feeling a little better she will forgive you. Sunny turns his head away from me when he's mad.

Well a lady took out a power pole a couple houses down from us. Very scary. Not sure how she did it all the damage was in the driver's side but she knocked the pole completely down hubby was outside when it happened it was around 9:15 am he ran in and told me to call 911 that a transformer had blown up. He thought that because sparks were flying on all of our lines. 1500 homes no power, no phone, no internet. They got most people power within a few hours except for a few of us because the pole had to be replaced. They blocked off our part of the street and they didn't even want people on the sidewalks in case the lines came down.

The lady and her 3 kids walked home. They were shaken up but ok.

So I am not sure how our food faired in the refrigerator and our stand up freezer. We did open up the refrigerator a couple of times Sunnys meds are in there and we each got a bottle of water.

I go to the rhemys today then the pharmacy then home. We are heading into a heat wave so I am glad I am going out today instead of tomorrow

Take care all

[January]

Christina, you are in my thoughts and in my heart.

Cake, I'm sorry you have had no power and that things are not good. You are in my thoughts and heart, too. You know you are.

WC, thank you for the tip on putting butter on Belle's medicine. It really helped last night.

Belle is a little better today. She's not eating or drinking though. She is moving around a little bit.

I'm having trouble getting up from my chair, walking, etc. Sometimes I think I should get Mom's cane out and use it,
but the apartment is tiny and my friend still hasn't helped me put the bedroom back together, so I'm afraid the cane would catch on something and make me fall.

A cold front has moved in and it's going to be quite cool for the foreseeable future. My fall and winter clothes are stacked in totes on the bed and I can't get to them. There are boxes and totes stacked beside the bed and I can't lift them. I keep mentioning my situation to my friend, but she hasn't taken the time to come help me. I don't have anyone else who will help me, even if I paid him/her. I have one sweatshirt and a flannel shirt that I can reach. That's it. No sweaters, no jacket, nothing....

[Wild Coyote]

A warm hello to all!

Jan, I am happy to hear Belle is improving.
I am sorry you are having difficulties walking. I hope your friend will help you soon. You need your warm clothing!

Cake, I hope your refrigerated/frozen goods are fine despite the power outage. Also hoping your meeting with your rheumy is helpful.
It's very important you share your story about methotrexate. People deserve to know as much as possible before they make a medication choice.

It's a cooler day here. Lots of wind, too. I love the cool air; yet, have to keep my body warm to minimize pain, spasms, stiffness, aching. Pulled out my heavier jacket and my wool socks. I so enjoy my wool socks!

Spondi and Child, haven't heard from you in a little while. How are you?
Kiya, Gus, ~Christina, Lucy and Mama - Thinking of you, too.
I hope I have included all; if not, please forgive me.

Peace, Comfort and Joy to all.

WC

[Gus1234U]

i have 3 days of scheduled activities this week, so you might see me missing

[January]

I will miss you terribly, Gus. I love you and I love your pictures.

Belle was still really sick this morning. The vet called and said if she wasn't better by this evening I had to bring her to the vet hospital to be checked. Then, about noon she perked up and while she's not well, she drank some water and actually ate some food!
We are so blessed!

[La.Last.Lucy]

Hi everyone.... I know I’m still an outsider so this topic or issue may seem a bit bold or inappropriate for me to bring to the table- but it has been a topic discussing with a therapist never resolves or I come to an understanding of how it has effects is effecting and will continue to effect me. With Fibro CFS MS chronic pain just any consistent physical ailment there is one (of many parts) part of my emotional physical and mental realm that I have yet to grow and understand. Intimacy... not just the physical act.... but that being a huge component of it obviously. Regardless of age gender identify sexual orientation or single or in a relationship etc.... I feel well sad but also confused and always worried. Wether one is in a wheelchair or quite able bodied the physical limitations and stress and time Dr appointments ER etc that encompasses my life, effects intimacy. I do have nightmares that my significant other will leave me not just because of how stressful my ailments are but the rarity of the physical intimacy. Even trying to lay on the couch, my neck hurts so I have to continuously adjust which is frustrating just to want to be near while watching a movie. How do they feel when after well an activity that I immediately grab ice packs or my tens unit. I know my uh “sexuality” does not define me as a person nor makes me less then others but there is still a pang in my chest that radiates and brings a heaviness to my chest. I am more mature in my years now mentally and in understanding that emotional/physical competent regarding self worth and self esteem and while in a relationship. But I would just like to know that I am not the only one who has had to ruminate or even have to think of this issue. Therapists will have advice and listen of course. But unless you have lived it or are still living in the position of being effected by a physical limitation..... I discount the advice.... just want to know I’m not the only one that maybe even only once, who has had to think about it.... validation yes that’s the “term” lol
Thanks and apologies at the same time

[Gus1234U]

i dream of a world where i am not invalid, impoverished, in solitude, in pain; and i find that world is inside ~

[Kiya]

(((( Gus )))))

[Kiya]

Checking in- really bad cold/or mild flu- little sleep but am taking mom to her bone mart biopsy today. I can’t go in with her, sick as I am. I’ll have to wait in the car. Good thing I have blankets in there.
I can’t decide with will hurt less: lying in bed or an epsom salt bath...

[Gus1234U]

this is how i see each of you~! beautiful spirits, beloved friends~

[January]

Gus, what a wonderful, wonderful picture and your thoughts on it have really touched my heart. I hope you know your spirit looks the same way.

[cakeladie]

Not going to be a good day that's for sure.

I have a kidney infections, I am throwing up. Sammy the dog has not eaten since Saturday I am trying to get her into the vet and it's going to be 90 degrees today just what someone with lupus needed.

Then I find out that the car that hit the electric pole next door was driven by kids. They took their moms car out for a joy ride at 9:20 am. Wtf really those parents should be ashamed of themselves and should be held responsible for ALL cost. Right now I know the electric company will go after them but the homes that had their lines pulled out the home owner now has to take time off from work and have cable and the phone company come out to run new lines and THEY HAVE TO PAY FOR IT. How on earth is that fair? My children are far from angels lord I can write a book about my daughter but I would know if they took the car even if they took it at night ant it wasn't night time. If you ask me and no one is and I am taking my frustration out on you guys but those girls and unfortually they were girls should have had their butts in church good god almighty

People here have been talking non stop about the wild fires (I live in the San Francisco Bay Area) and people are saying how could people not have seen the fire when it started. Let me tell you how. When the girls hit the electric poles at least 20 houses had sparks flying from their electrical lines my house included. Add to dry weather, wind and it being night time that's how all those people lost their homes. I am thankful that the accident happened in the morning and I am doubly thankful that my hubby was home. He checked our roof just to make sure and our elderly neighbors roof.

Ok I am done I am going to throw up again. Sorry for being a Debbie downer but I have had a rough year and it seems like it's going to continue till the end.

[La.Last.Lucy]

Attachment 8108


This beautiful art is for you.... although she is clearly in agonizing pain... there is still life ... beauty and growth coming forth!

[Kiya]

((( Cake xox ))))

[Kiya]

((( Gus ))) that’s how we see you, too

[lizardlady]

Holy crow!!! I haven't been here for a few days (for the same ol' same ol' reason) and come back to FOUR pages of new posts! Sounds like many of you have some serious shyte going on.

Jan, someone else already made the suggestion I was going to make for getting food into Belle. Liquify it and use a syringe to feed it to her. It sounds like she is eating now though. Maybe you could still liquify the food and let her lap it up?

Cake, I worry about you and everyone else in California. Scary stuff!

I don't have time to respond to everyone, or the energy to do it. Hugs to all who need/want them.

[spondiferous]

hey all. sorry to hear of the various things going on. i'm at a pretty low place with the fatigue right now. i suspect i have CFS along with fibro. anyway i've read all the updates but i can't focus enough to respond individually to everyone. just know that i have been thinking of all of you. i've been feeling kind of crappy because i feel like every time i open my mouth the same story comes out of it and i know it's important to talk about stuff, and that's why i love this forum (because as much as it hurts me to know that all of you are struggling too, at least we can understand, empathize with, and support each other) but i'm the only person in my life in the outside world who has anything close to what i have and it's taking me to some dark places lately. anyway. hugs for all who want/need them.

[Gus1234U]

exhausted, and tomorrow isn't even here yet....
got a lot done, tho. naming Friday - NAPday~

[Wild Coyote]

Had a fun day yesterday. Spent time out with DH and friends.
Am paying a price today; I feel very stressed today, more pain, fatigue, etc.
I am glad I went out yesterday.

I have read through. I am touched by each post.

Cake, I hope you get a break soon!
Lucy, I also live with some of the same concerns.
Gus, SWEET!
Spondi, I hear you. Truly.
Jan, So glad to hear Belle is doing better.
Liz,
Kiya, I hope you feel better soon.
~Christina,

Love all around.

WC

[spondiferous]

Just a quick check-in before I go down for the night. Today was actually a good day. I made it out of the house on my own! I have literally one friend (who is close enough to hang out with) and I went out to meet him for breakfast, and then he came back here and we played some games and then he stayed and had dinner with us. Now I'm exhausted but it was totally worth it. wishing all of you the best.