Happy New Year! And how are you?

If you haven’t posted for a bit, your fellow PsA peeps would love to know how you’re doing these days. If you’re feeling well, and your PsA is under control, don’t be shy! Hearing a happy story might be just what somebody needs to see the light at the end of the PsA tunnel today. Do tell!

On the other hand, if things aren’t so good for you these days, say so! Sometimes venting with folks who “get it” can make you feel just a wee bit better.

Maybe you haven’t looked around here for a bit. In that case, you may notice a reorganization, mostly of the DISCUSSION area. One addition in the past year has been The Newbies’ Guide: it’s more of a reference section, rather than a discussion area. Check it out!

And don’t forget that comments and suggestions are always welcome.

I'm here, but not posting a ton because of hand pain.

I was doing incredibly well for a long while - Remicade was fabulous!!! I was hiking and kayaking and put away all mobility devices and such.

This Summer I developed neurological issues and was taken off Remicade this Autumn, as neuro issues were getting worse and my PsA / AS weren't responding as well to the Remi. I have to remain off of PsA treatment until the neurologist figures out what's going on. I was supposed to have my third MRI this morning (already had c-spine and brain done, along with two rounds of EMG testing), but had to reschedule due to a blinding migraine and icy roads. I'm back to shuffling around, using crutches or a wheelchair when I go out. My left side is weak, SI joints are incredibly painful and my neck, shoulders, arms and hands are getting worse by the day.

I'm doing my best to have a sense of humor about it all, as there's nothing much I can do until I get all the tests done and see what the neuro has to say in February. Stay on your PsA meds, kids!

Happy New Year to all my PsA friends as well. I continue to be comfortable and feeling good on Enbrel, although my damaged feet hurt like you-know-what when I walk. Over time I am now getting some compound improvements, kind of like compound interest at the bank. In the late summer I was finally feeling well enough to start hydrotherapy under the direction of a physiotherapist. Six months in, I am fitter and stronger to the point that I rarely use my cane, and I’m starting to need to take some of my clothes in. The pool workout three times a week sends me home tired, but overall I feel better than I have in a very long time. I hope that I will be able to carry on with this regime!
My ongoing fear is for the day that my Enbrel stops working for me. But I’ll jump off that bridge when I come to it.
How is everyone else doing?

Waiting for spring and warmer weather. This winter has been hard on me. I think it's hitting all of me. But, March is in only about 6 weeks and things with improve

Hi, haven’t been posting for a bit. Due to the fact between pain and fatigue I can not seem to do more than exist. Make it through work day come home collapse.
Was dx with Remitting Relapsing MS and am to start Copaxone inj as soon as the insurance companies get over the fact I have another autoimmune disease (really just waiting for approval but I am sure someone there might be thinking that). First thing MS Neurologist did was tell me to reduce work hours right now. She is letting me try just one day off in the middle of the week. I am not hopefull that she will let me stay at that. I love my job- not as much as ICU but this job was my dream job when I could not do shift work anymore- I do not want to lose it too. Ugh darn immune system - why can it not just behave.
Christmas was great for my kids, I survived. The fact they had fun was a great uplifting motivator for me. The minus 40 weather could kindly take a flying leap. I am sure that is not helping me but if I can make it to Mid March-April it will get better then.

Hope all of you are doing the best you can and that this new year will bring you some joy.

Kirsten, it’s so nice to hear from you, even if the news about your disease isn’t the greatest. What is the greatest is that you are soldiering on at work, and enjoying those beautiful children of yours.
Look forward to the long long days of the summer and stay strong!

Hi, Mod Squad! I love how you are all always so cheery! Just a quick check in... don't post much but read often :-) Great from April to October, October to December not so good, bump in MTX and doing much better. Winter is always the worst! The doctor is talking about adding Enbrel... I thought he would want to take me off of MTX and then start it but sounds like he wants both, but I am holding off for now. Want to see how I continue to do with the bump in MTX. When I expressed my concern about starting things too soon and then becoming immune to them and running out of options, he told me he had lots of options, LOL! We'll revisit that in three months. In the meantime, I'm awaiting the warmer weather (sheesh... you'd think I lived somewhere cold.. So California is not exactly the North Pole, although it was in the 40's this morning, LOL) Happy New Year to you and to all!!! I learn so much here!

Sandy

Thanks, sybil!

I love reading everyone's updates. Winter seems hard for many, but I'm so glad we have each other!

Kirsten - my rheumy was suspecting MS, still working with a neuro on obtaining a diagnosis, as some things don't fit with MS. For some reason insurance ok'd brain, c-spine, and thoracic MRIs but as of yet won't approve lumbar, even though I have known damage (via x-ray). Dealing with insurance can be frustrating.

Seenie - here's to hoping Enbrel works for you for a looooong time!!!

Hi everyone,I have not posted for a while,last year was incredibly tough. I had my first shoulder surgery way back in Feb. Well after going to PT twice a week for months they realised something was wrong. I had my 2nd shoulder surgery ten days before Christmas. Whilst the rotator cuff was doing good,the rest of my shoulder wasn’t. It seems that one of the sutures was eroding some bone. The spur had already grown back & the whole joint was full of scar tissue. They did full manipulation whilst I was knocked out.
So here I am still going to PT twice a week nearly a year later. Meanwhile I seem to be doing ok on Orencia,I have just swapped from infusion to self injecting & I’m doing ok. The new pain med Nucynta also seems to give me a lot more pain free days.
In between all of these I was diagnosed with GERD & Gastritis. I’m am into my second week of having a bad flare of the gastritis. The nausea is awful even with zofran.
I guess last year took its toll on my body, my weight has dropped from 172lbs to 145lbs.
I am hoping for a better 2015 & wish you all well :slight_smile:

Great to hear from you, Lindseylou! Sorry things haven't been going well. This year HAS TO BE better for both of us, even if it's not starting out that way!

Let's see, when last we left, I was diagnosed with simple endometrial hyperplasia. The original dose of Prometrium didn’t work to the point where I ended up in the ER on October 29, with low blood pressure, tachycardia and down two units of blood. I got transported to Markey Cancer Center to see my gyn-oncologist very early the morning of October 29. When I saw him later that day, the doc increased my dosage but also said to think seriously about having a hysterectomy.

After I saw my rheumy on November 17, I went back to the oncologist on December 1 to discuss options. All the way over, my prayer was You know I’m tired of this. You know how I feel. I’m putting this in Your hands. You show me the way. You tell me when I should do this. I couldn’t say the words hysterectomy, so the doc said to do some more thinking and call.

We had just barely turned onto Limestone when my husband said I would have loved to have had children with you, but the most important thing is for me to have you around. I said I feel the same way. Oddly enough, my bionic left shoulder was hurting that day and I got to thinking about my shoulder replacement surgery in 2013. While successful in doing away with 24/7 pain, it was not as successful as it could have been in part because I have cervical spine involvement and in part because the damage had gone on too long before the surgery. But shoulder replacement surgery typically doesn’t kill. The gold standard tests say I don't have cancer.

When we got home that Monday night, I realized that after 103 days (August 20, when I had my endometrial biopsy to December 1), I hadn’t bled at all that day. The increased dosage of Prometrium had begun to work and has continued to do so. I had scheduled a pre-op appointment Christmas week, but when I called and said the meds had kicked in, the doc told me to come back in March unless I got in trouble before then.

God has a wicked sense of humor. I thought the answer to my prayer is you need the surgery; I’m giving you a time of grace to enjoy each other because there’s another dry spell coming after surgery. Now I’m enjoying the benefits of Progesterone and enjoying life!

Of course at Christmas, once my body (and brain) realized I was going to be off and had time to breathe after the last four months, I went into a flare. I caught it early and started Pred but I didn’t feel so hot from Christmas Eve until New Year’s Day. My husband's sister and her husband were here from 12/26 until Monday, the 29th, so they got the full monty of what it’s like with me in a flare.

I also realized there is a reason why I’ve been watching my sugar intake. I made some fudge (the same way I do every year) 12/23. Eating the fudge also set off the flare. Once I realized it might be doing it, I told Paul to throw it away. The next day (literally), I could tell the difference.

Then Monday morning, January 5, as I was getting out of the shower, Paul made me an offer I had no intention of refusing. Tell that to my right foot, which missed the 2 inch ledge in the front of the shower. I fell out of the damn thing!

I got up but I’m happy no one was in the house when we were coaching me through it. The cats decided their after breakfast naps were more important than coming to see about Mom (let me spend what they consider too long in the bathroom any other time and I have a dang parade).

I’m walking around like something that rusted in the rain (still but it's better). I didn’t fall on my bionic left arm, but I hit it on the bathtub. And I have a pain in my neck. Ortho says I have a slight rotator cuff tear in righty arm, so I'm back in physical therapy with an MRI in the wings.

Even with all that, I've found the combination of drugs which keeps me in decent condition: 1) inject Humira every ten days; 2) 200 mg Progesterone twice a day; 3) a lower dosage of thyroid replacement; 4) good multi-vitamin; 5) fish oil; 6) 2500 mg D3; 7) cinnamon/chromium; 8) exercise (started slooooowly and kept it up, six days a week.

Y'all take care.

Wow! What an ordeal! It sounds like you are where you need to be in treatment at the moment and have had a lot of people on your side through it all. Don't you love when you think one thing is answer to prayer and God laughs and decides something different? :)

Grumpy Cat is still quite Grumpy. I, too, went though Remicade failure which entailed 8 weeks with no meds and a fight to the death with the insurance company, the specialty pharmacy, my pharmacy, and my rheumtologists office to get the medication filled. FINALLY was able to start Enbrel after 4 weeks of fighting. I have had my second dose of Ebrel and I'm not holding my breath. It's been pretty danged misearble. I find that I aam in need of a new rheumatologist. i'm no longer at a place that I can talk to him anything. Keep getting that vibe that he isn't sure what to do with me and balk a bit from the idea of visiting other docs. I loathe interviewing doctors.

I did stumble upon a new pain management doc who seems to be worthhis weight in gold. Small practie with very little focus on the new trade of rotating door of patients in for injection procedures for which they can charge an arm and a leg. Seems he left his old practice for frustration of this growing trend.

I am no longer working. I neither have the energy to fight the pain for a 60 hour week, nor like the repercussions of working like a dog for oters and then having nothing left ovr to give them. I just want to be a good mom and wife, bathe once a day and try to cook dinner with the help of ny wonderfully patient husband.

On the very bight side, my husband is taking me to our honeymoom cabin in February for a whole seven nights. I look forward to this a great deal!

Hugs, Grumpy! It sounds like the bright side isn't just the vacation, but that you're doing things for you to improve your quality of life and focus on what's most important to you. I wish you well on your quest for a new rheumy and really hope Enbrel works for you.

Wow, sixcatlawyer, you have had your share of pain and disappointment! I don't know when you started Humira, but hopefully it and the other meds you're on will make life better for you.

I am all in agreement about sweets--fudge is a big problem. I made a batch of fantasy fudge for Christmas and it took 3 cups of sugar--my feet were burning right around Christmas time. I'm sure the fudge and all the other goodies were at fault! I've always thought ice cream was a big culprit for me, too.

Well, I hope 2015 is a better year for you.....sounds like you have a good partner who will support you through the ups and downs of life!
sixcatlawyer said:

Let's see, when last we left, I was diagnosed with simple endometrial hyperplasia. The original dose of Prometrium didn’t work to the point where I ended up in the ER on October 29, with low blood pressure, tachycardia and down two units of blood. I got transported to Markey Cancer Center to see my gyn-oncologist very early the morning of October 29. When I saw him later that day, the doc increased my dosage but also said to think seriously about having a hysterectomy.

After I saw my rheumy on November 17, I went back to the oncologist on December 1 to discuss options. All the way over, my prayer was You know I’m tired of this. You know how I feel. I’m putting this in Your hands. You show me the way. You tell me when I should do this. I couldn’t say the words hysterectomy, so the doc said to do some more thinking and call.

We had just barely turned onto Limestone when my husband said I would have loved to have had children with you, but the most important thing is for me to have you around. I said I feel the same way. Oddly enough, my bionic left shoulder was hurting that day and I got to thinking about my shoulder replacement surgery in 2013. While successful in doing away with 24/7 pain, it was not as successful as it could have been in part because I have cervical spine involvement and in part because the damage had gone on too long before the surgery. But shoulder replacement surgery typically doesn’t kill. The gold standard tests say I don't have cancer.

When we got home that Monday night, I realized that after 103 days (August 20, when I had my endometrial biopsy to December 1), I hadn’t bled at all that day. The increased dosage of Prometrium had begun to work and has continued to do so. I had scheduled a pre-op appointment Christmas week, but when I called and said the meds had kicked in, the doc told me to come back in March unless I got in trouble before then.

God has a wicked sense of humor. I thought the answer to my prayer is you need the surgery; I’m giving you a time of grace to enjoy each other because there’s another dry spell coming after surgery. Now I’m enjoying the benefits of Progesterone and enjoying life!

Of course at Christmas, once my body (and brain) realized I was going to be off and had time to breathe after the last four months, I went into a flare. I caught it early and started Pred but I didn’t feel so hot from Christmas Eve until New Year’s Day. My husband's sister and her husband were here from 12/26 until Monday, the 29th, so they got the full monty of what it’s like with me in a flare.

I also realized there is a reason why I’ve been watching my sugar intake. I made some fudge (the same way I do every year) 12/23. Eating the fudge also set off the flare. Once I realized it might be doing it, I told Paul to throw it away. The next day (literally), I could tell the difference.

Then Monday morning, January 5, as I was getting out of the shower, Paul made me an offer I had no intention of refusing. Tell that to my right foot, which missed the 2 inch ledge in the front of the shower. I fell out of the damn thing!

I got up but I’m happy no one was in the house when we were coaching me through it. The cats decided their after breakfast naps were more important than coming to see about Mom (let me spend what they consider too long in the bathroom any other time and I have a dang parade).

I’m walking around like something that rusted in the rain (still but it's better). I didn’t fall on my bionic left arm, but I hit it on the bathtub. And I have a pain in my neck. Ortho says I have a slight rotator cuff tear in righty arm, so I'm back in physical therapy with an MRI in the wings.

Even with all that, I've found the combination of drugs which keeps me in decent condition: 1) inject Humira every ten days; 2) 200 mg Progesterone twice a day; 3) a lower dosage of thyroid replacement; 4) good multi-vitamin; 5) fish oil; 6) 2500 mg D3; 7) cinnamon/chromium; 8) exercise (started slooooowly and kept it up, six days a week.

Y'all take care.

Sorry to hear how things went down with the Remicade, GrumpyCat! Such a disappointment, so I'm sure it's hard to feel confident anything else will work. But hopefully Enbrel will surprise you!

I hope your upcoming getaway gives you a chance to relax (how can we relax when in pain, right?). At least you'll have 7 days of no housework, etc. Idk if there's a hot tub at this place, but I can see where one might be very beneficial.

Take care and good luck with Enbrel!


GrumpyCat said:

Grumpy Cat is still quite Grumpy. I, too, went though Remicade failure which entailed 8 weeks with no meds and a fight to the death with the insurance company, the specialty pharmacy, my pharmacy, and my rheumtologists office to get the medication filled. FINALLY was able to start Enbrel after 4 weeks of fighting. I have had my second dose of Ebrel and I'm not holding my breath. It's been pretty danged misearble. I find that I aam in need of a new rheumatologist. i'm no longer at a place that I can talk to him anything. Keep getting that vibe that he isn't sure what to do with me and balk a bit from the idea of visiting other docs. I loathe interviewing doctors.

I did stumble upon a new pain management doc who seems to be worthhis weight in gold. Small practie with very little focus on the new trade of rotating door of patients in for injection procedures for which they can charge an arm and a leg. Seems he left his old practice for frustration of this growing trend.

I am no longer working. I neither have the energy to fight the pain for a 60 hour week, nor like the repercussions of working like a dog for oters and then having nothing left ovr to give them. I just want to be a good mom and wife, bathe once a day and try to cook dinner with the help of ny wonderfully patient husband.

On the very bight side, my husband is taking me to our honeymoom cabin in February for a whole seven nights. I look forward to this a great deal!

I have to say 2014 was a good year because of Enbrel. I had almost 2 months of feeling really great from July 3 when I did my first injection until August 21 when my back suddenly went out. So, its been on again off again back pain, which had started as right side sciatica from a protruding disc to now left side sciatica from (my physical therapist thinks) my SI joint. Then two bad colds to top it off. But, I still say if it weren't for Enbrel keeping all of my PsA and most of my psoriasis at bay I'd be a real basket case right now.

I'm staying positive. It seems like when you hit rock bottom, the only thing left to do is die or somehow start climbing out. I've been so lucky to have come back to a comfortable normal as far as my PsA and psoriasis go, it almost makes me feel guilty. I bounced back from my first bout of sciatica, which gives me hopes that will happen again with the second bout. I fought off two viral infections without antibiotics. Every "accomplishment" like this gives me more confidence life can be pain free for the most part. The terror of Enbrel stopping to do its miraculous work is always in the back of my mind, so I just need to stay focused on the here and now and enjoy what is good in and around me! Happy 2015 everybody!

How's the Nucynta working for you ? I'm starting the 50 mg ER next week. I hope you are doing better !



Lindseylou said:

Hi everyone,I have not posted for a while,last year was incredibly tough. I had my first shoulder surgery way back in Feb. Well after going to PT twice a week for months they realised something was wrong. I had my 2nd shoulder surgery ten days before Christmas. Whilst the rotator cuff was doing good,the rest of my shoulder wasn't. It seems that one of the sutures was eroding some bone. The spur had already grown back & the whole joint was full of scar tissue. They did full manipulation whilst I was knocked out.
So here I am still going to PT twice a week nearly a year later. Meanwhile I seem to be doing ok on Orencia,I have just swapped from infusion to self injecting & I'm doing ok. The new pain med Nucynta also seems to give me a lot more pain free days.
In between all of these I was diagnosed with GERD & Gastritis. I'm am into my second week of having a bad flare of the gastritis. The nausea is awful even with zofran.
I guess last year took its toll on my body, my weight has dropped from 172lbs to 145lbs.
I am hoping for a better 2015 & wish you all well :)

Hi Mimi, I’m doing ok. I still get painful shoulder days but it’s getting better. I haven’t been to PT for a few weeks but I intend to make another appointment. I’m doing ok on the Nycynta although my shoulder DR wants me off them soon for my shoulder. When I mentioned switching from tramadol to Nucynta at my Rheumi DR she didn’t want to change me. So I shall re visit this with her in June. I’ve switched from Orencia to Actemra & I’m doing ok. Plodding along…

I am glad to hear it is helping you somewhat. I got a script for it yesterday, but my pharmacist had to order it. I need it mostly for sleeping because pain keeps me up all night. However, yesterday I got 12 trigger point injections down the lateral sides of my hips and legs ( 6 on each one ). I feel great this morning, although getting those injections about did me in !

Have you tried trigger point injections for your shoulder pain?