[Kiya]

Sick at home today. Crudy sore throat. Was going to have my phone looked at. It’s blustery out here in the Pacific Northwest and rainy- a good day to stay in my robe with tea and my book.
(((( all ))))

[La.Last.Lucy]

Thank you everyone! Wow I have been looking for “support groups” or online chat anything for my well many issues.... this is amazing!!! I can’t believe that everyone participates knowing the fact well with fibro chronic pain & psych being consistent or even feeling up to writing a paragraph.
Jaynedough- love the lurking! I use that word all that time .... not like creeper status as it is usually associated with but just observing lol

[spondiferous]

Kiya - I am also in the pacific northwest, and you're right, the wind is acting up bigtime. Tons of rain too. I enjoy it. If I had more energy I'd be out there doing something. I really wanted to try to go for dinner with my wife but I'm just so tired. Tired of being tired/alone.

Lucy - this is the most active support group I've ever been in for anything. I love it here. So supportive.

[Kiya]

I've enjoyed watching the leaves blow around and hear the gusts. When the rain gets heavy I like the sound. Comforting to be curled up and warm, watching the storm. Lots of tea and soup for me today. Glad we kept power.

Originally Posted by spondiferous

Kiya - I am also in the pacific northwest, and you're right, the wind is acting up bigtime. Tons of rain too. I enjoy it. If I had more energy I'd be out there doing something. I really wanted to try to go for dinner with my wife but I'm just so tired. Tired of being tired/alone.

Lucy - this is the most active support group I've ever been in for anything. I love it here. So supportive.

[January]

I had to force Belle to swallow her pain med again this evening. She's not "speaking" to me. She's on a soft pillow with her back firmly turned toward me. Maybe she'll make up with me soon. She still hasn't eaten regular food. I gave her extra treats just in case she wants them.

Forgive me for not writing to each of you. I'm tired and need to try to get some rest. I love you.

[La.Last.Lucy]

Originally Posted by Kiya

I've enjoyed watching the leaves blow around and hear the gusts. When the rain gets heavy I like the sound. Comforting to be curled up and warm, watching the storm. Lots of tea and soup for me today. Glad we kept power.

Sounds wonderful... I have been thru trial and error , finding teas or well leaves and herbs that help with mood pain or specific body or mind needs. I like in Southern California and our winters aren’t harsh but I do love them! However at the same time I am more prone to stay in bed the sun seems to effect my energy levels. Do take vitamin D for this but there is just something about mother nature’s rhythm that by body mind and soul tends to align with. Has anyone every experienced this and aside from a vitamin D supplement tried things like natural lighting simulating the sun (like a bulb of some sort)
Sleep well

[Gus1234U]

welcome Lucy and Jayne~!
i seem to have missed another day... O.O
Habitat is coming Thursday to fix my water heater, and then i should be set for winter~ (i love winter, and cloudy days.)

[spondiferous]

'morning, everyone.

Wishing you all a peaceful day. I'm so exhausted.

[Gus1234U]

[Wild Coyote]

Originally Posted by La.Last.Lucy

Sounds wonderful... I have been thru trial and error , finding teas or well leaves and herbs that help with mood pain or specific body or mind needs. I like in Southern California and our winters aren’t harsh but I do love them! However at the same time I am more prone to stay in bed the sun seems to effect my energy levels. Do take vitamin D for this but there is just something about mother nature’s rhythm that by body mind and soul tends to align with. Has anyone every experienced this and aside from a vitamin D supplement tried things like natural lighting simulating the sun (like a bulb of some sort)
Sleep well

Yes, I use "broad spectrum lighting," esp in the winter. My DH built a large unit on a stand, which is also on a timer/dimmer, slowly getting brighter. We had built this according to specs given to us by my pdoc. The specs are readily available, I am sure.

I've seen some very nice pre-built models, table-top sized and otherwise. I'd bought my mom a table-top sized one because she sits at the table for a couple of hours in the morning. She is very sensitive to the level of sun/daylight, every day.

I highly recommend this approach to getting enough light exposure.

I also keep my Vit D levels up with supplementation.


WC

[Wild Coyote]

Originally Posted by January

I had to force Belle to swallow her pain med again this evening. She's not "speaking" to me. She's on a soft pillow with her back firmly turned toward me. Maybe she'll make up with me soon. She still hasn't eaten regular food. I gave her extra treats just in case she wants them.

Forgive me for not writing to each of you. I'm tired and need to try to get some rest. I love you.

(((((( Jan and Belle ))))))

Sending positive vibes.

WC

[Wild Coyote]

Originally Posted by Kiya

Sick at home today. Crudy sore throat. Was going to have my phone looked at. It’s blustery out here in the Pacific Northwest and rainy- a good day to stay in my robe with tea and my book.
(((( all ))))

Hoping you recover quickly!
Sounds comfy.


WC

[Wild Coyote]

Originally Posted by spondiferous

Kiya - I am also in the pacific northwest, and you're right, the wind is acting up bigtime. Tons of rain too. I enjoy it. If I had more energy I'd be out there doing something. I really wanted to try to go for dinner with my wife but I'm just so tired. Tired of being tired/alone.

Lucy - this is the most active support group I've ever been in for anything. I love it here. So supportive.

(((((( spondiferous ))))))

I hope you feel some energy, and not so "alone" asap!
Sending positive mojo!

WC

[Wild Coyote]

It's quite a challenge to try to respond to each individual, as group participation is up!

I don't mean to leave anyone out; yet, am also limited in what I can do.

Gus, thanks for the pics! They are lovely!

Love to All!

WC

[Gus1234U]

[~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!