Health issues (just venting here)

[minkydog]

As compared to everything else going on in my life, this is probably small potatoes. But here it is:
In the course of only one week I have found out that my psoriatic arthritis is out of control and suddenly my thyroid is under-active. I knew my energy was flagging and I felt sort of depressed, but I thought it was due to DHs illness and, of course, winter. I have extremely dry skin, my hair is thinning, my joints are stiff and achy, I'm very sensitive to cold now, and I've gained about 20-lbs since October, all of which I attributed to being a fat lazy slob and, of course, winter. The last time I had lab work done was in June and the thyroid has always been normal. Now my TSH is 9.6! Going for more testing soon.

Then I saw my rheumatologist. I needed another cortisone shot to my left knee--I need a knee replacement but I cannot do it this year; we're just trying to keep things patched up until I can take the time off. While I was waiting, I started doodling on a piece of paper, drawing pictures of all the places that I hurt. My doctor took a look at it and did his exam. He especially took notice of my hands, which are increasingly deformed by Psoriatic Arthritis. So we did a bunch of x-rays and Wow! What mess! My pelvis was lit up with inflammation, there are bone spurs on several vertebra, every finger has at least one deformity, two of my finger joints are so eroded they are almost dislocated, and of course, my knee is bone on bone. Yikes! No wonder I've been hurting so much. So all of a sudden, he wants me on Remicade infusions. I can't take ibuprofen and the like due to a previous anaphylactic reaction, so he has put me on Prednisone for the next 4 weeks, while wait to see if Cigna is going to pay for the Remicade. Good times.

Of course, the Prednisone makes me want to eat everything in sight and it keeps me awake at night. I can't take anything for pain but Tylenol, so I've been flipping over and over all night long. Last night I finally gave in and took one of DHs Flexaril (muscle relaxant). Best night sleep in a week.

I think it's going to be a long month.

 

[minniecarousel]

Yuck! That's a lot to take in. With all that going on, should you go on disability? No wonder you feel so bad. It must be difficult to work.

I hope you can get some relief soon.

 

[VictoriaT]

I can empathize with all your issues! DH has had psoriatic arthritis since his college days, and has been on multiple medications. Have you ever tried Enbrel? That has been his lifesaver!

Thyroids are funny, my TSH levels are up and down all the time.

I wish you strength and peace for these next four weeks!

 

[minkydog]

Yuck! That's a lot to take in. With all that going on, should you go on disability? No wonder you feel so bad. It must be difficult to work.

I hope you can get some relief soon.

Well, thankfully I am not so disabled that I can't work. And I have the greatest boss in the world. I do training on various healthcare topics for our company and make home visits to our foster care and developmentally disabled clients, so I set my own schedule and I do a lot of work from home. If I'm having a rough night, usually I can just sleep in a little and still get all my work done.

I have mixed feelings about going on Remicade. The infusion takes a couple hours and you have to do it every 2 weeks until the 8th week, then every 8 weeks thereafter. I mean, who wants to do that? I guess I'll catch up on some reading.

 

[Sailorwife]

Coming out from lurkdom to tell you how sorry I am. I have had R.A. For about 10 years. ( I just turned 45). I have been on Remicade infusions for about 5 years. This treatment has been a lifesaver. I was on Enbrel for about 4 years before Remicade but they stopped helping. I have no side effects & it is so nice to just go in every 8 weeks or so instead of taking a shot every week. My daughter has Psoriatic Arthritis but so far is fine with a low dose of anti-inflammatories. I hope you get some relief. It is very hard to explain how everything hurts sometimes.

 

[minkydog]

I can empathize with all your issues! DH has had psoriatic arthritis since his college days, and has been on multiple medications. Have you ever tried Enbrel? That has been his lifesaver!

Thyroids are funny, my TSH levels are up and down all the time.

I wish you strength and peace for these next four weeks!

Yes, I started off with Plaquinil, which caused some retinal changes so it had to be discontinued. I took Enbrel for about a year. It worked well for about 6 months, then less well for about 3 months, and then stopped working altogether. Since then I've been off those meds and for the most part the PsA has been quiet. I've been hurting for a few months, especially in my lower back but with everything else going on in my life I just never brought it up with the doctor. Looking back on it, I can see that I've been in a flare probably since November, which is when DH was hospitalized for pneumonia. I've been preoccupied with helping him recover and neglecting my own health, I think.

 

[minkydog]

Coming out from lurkdom to tell you how sorry I am. I have had R.A. For about 10 years. ( I just turned 45). I have been on Remicade infusions for about 5 years. This treatment has been a lifesaver. I was on Enbrel for about 4 years before Remicade but they stopped helping. I have no side effects & it is so nice to just go in every 8 weeks or so instead of taking a shot every week. My daughter has Psoriatic Arthritis but so far is fine with a low dose of anti-inflammatories. I hope you get some relief. It is very hard to explain how everything hurts sometimes.

Thanks. I know you understand. There is a lot of inflammatory arthritis in my family. Two of my sisters have RA and another one is being worked up for it. My brother has ankylosing spondylitis, which is in the same family as psoriatic arthriti (they are both autoimmune disorders.) Brother has already developed a hunchback and he's not even 52! Then about 3 months ago my darling DD21 was also diagnosed with ankylosing spondylitis. My DS28 has guttate psoriasis, so he is understandably worried that he could develop PsA, too.

I hope I will have the same experience with Remicade that you have. Maybe I could look at it as my bi-weekly pretend-spa experience.

 

[VictoriaT]

Uggh! Have to remember to keep yourself healthy first even when it's difficult!

 

[Sailorwife]

My Rheumatologist has a great infusion suite. There are big leather recliners & warm blankets. He does IV Benadryl before the Remicade so I usually end up asleep. I bring my Kindle & some bring their laptops & watch a movie. After your first "loading" infusions, it really isn't too bad. I start about 8:30am & I am usually done by 11:00. My doctor always comes by & talks to me & writes any prescriptions I need. (Right now just Imuran. I stopped the Plaqunil on my own. Same vision issues!) I actually look forward to the peace & quiet! After 5 years, the nurses have become like family.

Auto-immune disorders run in my family too. My younger son had Kawasaki's Disease when he was almost 3. We never could figure out at the time how he got it. It is very rare & mainly affects those of Asian decent. ( We are not.) It wasn't until a few years ago we discovered it is now considered an auto-immune disease. He is fine now but it was interesting to see the correlation.

 

[Heluvsme]

I just want to lend some support, and extend understanding. You certainly are dealing with more than your fair share, and I am glad you can come here to talk about your feelings. I am by no means comparing my situation to yours, but I suffer from the beginnings of arthritis, and a low thyroid (but not low enough to go on medication), and my mild situation does feel overwhelming at times, so I can only imagine how you must be feeling. I do hope and pray you are able to find relief soon and the new meds agree with you. (( (Gentle hugs)))

 

[Pea-n-Me]

I think the Remicade will help you.

 

[luvwinnie]

I guess I've been lucky. I've been on a combo on Enbrel with methotrexate for years. Did you take MTX with the Enbrel? Yes, I've had flares, but mostly due to me getting lazy and not taking the meds as I should or avoiding them at various times when due to insurance changes the Enbrel was cost prohibitive...so frustrating. I hope the Remicade works fast for you. I can certainly empathize.

 

[bgirldeb]

I've been on Enbrel for Psoriatic Arthritis for about 15 years. What got my insurance to approve a biologic med was bone erosion in my wrists. Hoping it won't take too long and you will be feeling better soon. Enbrel has been a lifesaver for me.

 

[luvwinnie]

bgirldeb...they wouldn't approve it until you had erosion?? that's horrible. THe whole point is to PREVENT damage.

 

[bgirldeb]

luvwinnie, it was fairly new at the time (2000). I had a big flare after the birth of my oldest son, so I guess that caught my doctor's attention.

 

[leebee]

I have no knowledge in this area or suggestions… just want to let you know I'm thinking of you and sending hugs!

 

[minkydog]

Thank you all for your encouragement. It's nice to feel that i'm not alone in this. The prednisone has kicked in and my back is less painful, so i'm getting at least some sleep. Matter of fact, DH & I are camping, albeit in a nice warm camper, rather than a cold damp tent. DH has a way of putting things into perspective--he says "I can be sick at home in my bed or i can be sick in these beautiful woods...I choose the woods." He is a wise man.

 

[luvwinnie]

luvwinnie, it was fairly new at the time (2000). I had a big flare after the birth of my oldest son, so I guess that caught my doctor's attention.

Hope you are doing ok now!

 

[luvwinnie]

Thank you all for your encouragement. It's nice to feel that i'm not alone in this. The prednisone has kicked in and my back is less painful, so i'm getting at least some sleep. Matter of fact, DH & I are camping, albeit in a nice warm camper, rather than a cold damp tent. DH has a way of putting things into perspective--he says "I can be sick at home in my bed or i can be sick in these beautiful woods...I choose the woods." He is a wise man.

Have fun!