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Posted 4/27/2010 9:33 PM (GMT 0)
I haven't written on this board before, and am needing advice from you all. I have Crohn's and was recently diagnosed with Fibromyalgia. I have been dealing with chronic pain in back, feet, hands, wrist for years and have just put up with it coming and going. I also have some pretty bad psoriasis on my scalp, and behind my hears and on my elbows. After doing some searching online, I came upon the psoriatic arthritis information, and am wondering if I have been misdiagnosed. I find my pain so debilitating, my feet KILL me from tendinitis, which I have quite frequently. I go to a pain clinic, and have tried Gabapentin and Savella, but the side effects are crazy, so I'm taking 800 mg Motrin every 10 hours which seems to take the edge off, but I need help. I am thinking of bringing this up at my next Dr. visit, what do you think? Thanks from my heart to yours for any and all opinions.
Dawn
Posted 4/27/2010 11:50 PM (GMT 0)
Boy IDK much about PA. I now Enbrel is great for PA and clears up P's. It is very expensive but if you qualify, you can receive FREE Enbrel and it may help you two fold.
Posted 5/4/2010 8:01 PM (GMT 0)
Thanks for the reply JulieJ! I'm hoping for the best at my Dr. visit on the 10th. Hope you are doing well.
Hugs,
Dawn
Posted 5/6/2010 10:47 AM (GMT 0)
Well, my appointment was moved up to today instead of next week Monday. I'm so thankful!! Anyone on here have advice for me?
Posted 5/6/2010 9:56 PM (GMT 0)
Update: I was diagnosed with Psoriatic Arthritis today. Doc put me back on reduced dosage of Savella, I was on 50 mgs. per day, now am at 12.5 for now. Atavan for pain, I got a cortisone shot into my hip. I am holding off on any of the "big guns" at this time, and I'm going to take a more conservative approach and see where that gets me. Hope this works!
Posted 5/9/2010 3:52 AM (GMT 0)
MissMissy,

What were the side effects you were getting with Savella before? I've been on it since Jan 10 for Fibro. Well that's what it is until the see the Rheumy on the 17th. It has helped with Pain almost 100% Side effects for me are Insomnia, Internal Furnace, and sometimes a racing heart. I was at 100mg a day which meant 50 in morn and 50 at eve. I just cut it back down to 50 because if the Big M that seems to be hitting me with a vengeance and with summer here I can't seem to take the heat!

Now Psoriasis. My husband had it from head to toe. He was a walking scab or what looked like a scab from all the itching. omg his head/hair was bad as well. He was on the Enbrel (2x's week) AND and Antibiotic for a year and that seemed to clear it up pretty good but what we did find was that his bowels were aggravating it to no end. Polyps were pretty bad and always infected so he ended up with surgery to remove a section. It was after THAT surgery that his head cleared up. Now he only has it on Elbows and Knees.
Hope you get better. And really hope the Savella works for you. It sure did me.
Posted 5/9/2010 8:51 PM (GMT 0)
Hi Silly~I was put on Savella in January, also. I worked up to 50mg AM and 50 mg PM, too. I couldn't take the heat, either! I was changing clothes 2-3 times per day, and there wasn't enough anti perspirant in the world to stop the sweating :) I had to take a sleeping pill to get any sleep, and my face was the color of a ripe tomato at all times. I also felt really crabby at times, too, and my husband wasn't too happy about that! The Savella is for Fibro. I have the psoriasis on my scalp BIG time. I've had it for years. I was also diagnosed with Crohn's about 4 years ago. It seems like the old immune system doesn't know when to quit! Now the psoriatic arthritis, good Lord! I am now on a really low dose of the Savella, 12.5 mg. per day for now, and am trying to get up to a dose that helps, but not the awful side effects. I feel like a pretty strong person, and I'm not going to take this lying down, you know?

So nice to read your reply, thanks for your support!
Hugs,
Dawn
Posted 5/15/2010 12:02 AM (GMT 0)
MissMissy you wouldn't believe this but the same happened to me.. I think we found the problem though. Are you on a Cholesterol med? I was on Simvastatin and went in complaining about the heat and red face etc.. He looked at my meds an apologized profusely. Said that he should have changed out the Simvastatin when I started the Savella. But worse of all this had gotten worse with that med as I was on it 7 months before Savella.

On top of all of that Jan through about June we are very low in Vit D. Guess what? That adds to the sore feet and red face. So now you have Two Whammy's and you picked up the third. Like we knew that.. geez. I really thought I was turning into a hormonal twit.

Hope you can find a balance Dawn. That seems to be the key.
Posted 5/25/2010 4:11 AM (GMT 0)
Good luck MissMissy. Conservative approach is good, but make sure that you see the dr. enough to make adjustments to your meds as needed.
Posted 5/25/2010 4:16 AM (GMT 0)
I forgot to mention MissMissy, that you can have fibromyalgia AND PA. I had fibro for 10 years before I went to the dr in tears as I was not on any meds, just using a hot tub for pain and it just was not working. It turned out that I had a very high sed rate and had PA. It's a bummer as my psoriasis doesn't look bad, small patches on my elbows, rough heels and itchy scalp. Actually when dx'd just elbows.

I was so shocked that I had it, since my psoriasis isn't bad. My sister's is, and she was just dx'd with PA last fall.

My vit D level is low every time they test it.
Posted 5/25/2010 10:48 PM (GMT 0)
Suz~Thanks for the input! I do have psoriasis, PA, Crohn's and Fibro. Lucky us, hey?! My psoriasis is all over my scalp, and on my elbows. I have had it all my life. Getting the diagnosis of PA has been in the past month, with much doctoring, tests, and a long, cold, painful winter. I just hope I haven't passed any of this on to my kids. The immune system seems to have a mind of it's own, I know that for sure! Hope the summer weather is helping you with the sunshine and warm days.
Hugs,
Dawn
Posted 6/4/2010 1:51 AM (GMT 0)
Guess what I was just Dx'd with huh? Can ya guess? Go ahead and guess!!! Ugggggh.. Went to the dermie about my Face, Elbows, and Palms. I have Psoriasis on my Elbows and Palms and Rosacea on my face. Psoriasis is mild though. Looks nothing like my husbands so I didn't even know that was what it was. Now the Rheumy was testing me for several different things that came up negative and said that the joint pains I am getting is probably due to P.A. Took an xray of my lower spine and hips and am waiting for those results? Wouldn't she have seen something in the hand x rays?

Now you guys mentioned electric blankets but I'm going through the big M and can't take the heat. Also I am having another problem with Heat and Humidity where the blood rushes to my head and my head doesn't sweat it just looks like it's going to explode. I would say it was the Savella but it was happening before the Savella? It seems to happen in high stress times too. I have to see a cardiologist because she wants me to wear a monitor for a month. I just read where Reactive PA can cause this problem with arrhythmia.

I'm wondering if this red face is due to my Lisinopril. ??
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