Has anyone have relief from steroid treatment. I asked my PCP for a dose pack of steroids for what I thought was a flare of my osteoarthritis. I had such an extreme relief with this treatment I wonder if it didn’t also help the Fibromyalgia.
Carlita, this is very interesting. Clearly your pain is related to inflammation, or steroids wouldn’t help.
You say that you have other immune issues. Do you have any skin or nail problems, however slight? Family members with skin problems? Bowel complaints?
I’m on a fishing expedition, as you can see.
Osteoarthritis was dx when I was 30, fibromyalgia was dx at about 50 or a little younger. I was quite obese and had gastric bypass and a complication. Immediately following this my liver enzymes were off. And dx with Autoimmune Hepatitis, that happens to run in the family. Then dx with colitis. These are all Autoimmune in nature. Sometimes following a percipitating factors.
I have osteoarthritis. And sciatica from a back injury while a teenager.
Being a nurse I did not understand Fibromyalgia and the symptoms that come with it. I’ve been a depressive my entire life.
Yes recently nail problems. Feels almost itchy. My fibromyalgia has progressed to burning sensation over shoulders and up the left side of face nose and mouth.
I live in Pennsylvania, US. I love the season changes but last September I was in so much pain could barely get out of bed. Called my PCP, and asked for dose pack after trying to explain my symptoms to office staff.
It was remarkable, I read some other Fibromyalgia sufferers are on Steroids which have several long term effects I don’t want. I was just reading posts. I see my PCP tomorrow and will discuss my increasing symptoms.
There is a lot of stress in my home which may be complicating matters.
This is long but I hope answers some of your questions.
Carlita, here’s the reason I ask. I’m not a fibro person (I pass through here regularly on my “rounds” as a network moderator). I have psoriatic arthritis, which has many of the same symptoms as FM. Many of us, in fact, have had FM as a possible diagnosis for our misery, at one time or another, especially if our psoriasis wasn’t obvious.
In my case, I had bowel issues (the runs every morning), “dry skin” (itchy and flaky all over), and toenail “fungus” (just ignore and use polish). That was in addition to overwhelming fatigue, body aches everywhere, carpal tunnel syndrome, two prosthetic knees (“OA”), depression that didn’t respond well to treatment, and did I mention crushing fatigue? The quotation marks represent the (man) assumptions that my PCP made. I also suffered very sore feet, which she didn’t have a clue about, despite x-rays and nerve conduction testing.
I was moderately overweight, and over fifty, so of course what I got from the PCP was all “menopause, get orthrotics, eat healthier and exercise more”. All my own fault, but no matter how hard I tried, I just couldn’t. I was too exhausted, too depressed and too sore.
Finally, one day I bolted to another doc who did yet another foot x-ray, and what emerged was a jaw dropper: I had erosions all over the (many) joints of my mid-feet. At that point it was obvious that I had a serious inflammatory arthritis, type unknown.
Eventually, all became clear: my toenail fungus was actually psoriasis. My fingernails had pitting, also psoriasis. My dry flaky skin was mild psoriasis, and I eventually sprouted a patch of scales the size of a quarter on one elbow, classic psoriasis. The morning “runs”? IBS, very common in Ps and PsA patients. The knees that were replaced because of OA? Well … guess what. Since then, I’ve had a hip replaced, and the other is on its last leg.
The first rheumatologist I saw did a science experiment with me: she gave me prednisone to see what would happen. I took one dose, and the pain, stiffness and fatigue melted like snow in the morning sun. By mid-afternoon, I felt I’d had a miracle. It was a glorious week! But knowing the risks of long term steroids, I never took them again.
I am now on excellent and aggressive therapy, and monitored by doctors whose specialty is PsA. I feel better than I did when I was forty. Too bad about the early retirement I took, the titanium parts, and the feet I can’t walk on. Still, it could be worse.
Just throwing this out to you as an idea to get you thinking out of the FM box.
All the best to you
Seenie from Moderator Support
Wow Seenie. I feel like I just had an Ah-Ha moment. Your post describes my symptoms perfectly. I didn’t realize PsA can cause bowel symptoms or that toe fungus could be related.
I was sent by my dermatologist to an arthritis/pain doctor after I was dx with psoriasis a year ago. Did some xrays of hands and feet and concluded that I don’t have PsA. But I have the nail pitting, toe ‘fungus’, bowel issues, (seriously, until I was in my late 30’s I didn’t realized that other people didn’t poop 3 or 4 times a day and that poop wasn’t supposed to be loose single every time), dry skin that doesn’t respond to OTC lotions, fatigue, depression, anxiety, small scaly patches on ear, face, fingers, toes, elbows, knees, and so much joint pain, all over my body from my toes to my jaw, (weirdly except my knees which one would expect from a woman of my age, 48, and size, 40# overweight).
Now I feel like I might need to get a second opinion about the PsA. The dermatologist was pretty sure that I had it and was surprised the other doctor said no. She had already put me on Humara. I took for 4 1/2 or 5 months but had no relief from the pain or the plaques, so I quit taking it. now I’m wondering…
OMG … yes, this is why I post about this somethimes. Sometimes, PsA is an incredibly difficult thing to diagnose. And until it is diagnosed, you run the risk of damage. And damage is HELL.
Oh yes, I had dry itchy skin. “That’s why god made bath oil” to quote my PCP. Creams, lotions, nothing would help except slathering on hydrocortisone cream. (Don’t tell my PCP I did that, but only once because it is VERY bad.)
I’m sorry to say that X-rays alone are not helpful in diagnosing PsA until it the disease has been “at it” for a while. (As it was in my case.) The most recent diagnostic criteria are CASPAR.
As for nails, have a look. Warning: NSFM (that’s mealtime, LOL)
Do you have a firm diagnosis of psoriasis? Was a biopsy done? Do you have any family members with psoriasis? How do you score on the other CASPAR criteria, given that your x-rays showed nothing?
Hope this helps.
PS The jaw is a common target for PsA. Why not come and join livingwithpsoriaticarthritis.org (another Ben’s Friends site) and talk with the folks there?
LOL, and why would you know this? Why would you, out of the blue, even tell your doc? And if you had, what are the chances doc would have said “Oh you’ve just got a nervous bowel, not to worry. That’s what’s normal for you.”
See another rheumatologist, one that is expert in PsA if you can find one. I’ve just seen that you are in the PNW. There’s at least one PsA doctor there.
Back to Carlita’s question. I have had fibro 38 years, in 2010, it got so bad i couldn’t function and after an oral “burst” of cortisone by regular doc, that helped so much, i saw a rheumatologist. She recommended plaquenil but I refused as its a malaria med but she thought it could help. I told her of the cortisone and she said that cannot help fibro and i will prove it to you. She gave me a butt shot of 120 mg od depromedrol and for 4 months I lived normal. when i went back,she was amazed. BUT Flat out, i didnt like her so went back to primary doc, He explained that 120 was too much given in one place & would cause a knot and not totally disperse. He suggested 60 mg in each hip and said i would eventually get osteoporosis from the cortisone. He used Kenalog. He told me to choose between 5-6 years of a really good life and than debilitating osteo - OR just hurt forever. I took the shots from 2010 to 2016 every 90 days and now have osteo plus lots of fibro pain. for ME, it was worth it, as we traveled all over, i had two Huskies i walked every day, gardened, had fun, worked a 40 hour a week job, all without pain – yes, he was right, i am paying for it now,
but would not change my decision. Each person has to make their own choice._
Thank you, I already have osteoporosis and osteoarthritis. So long term use is out. But the metro dose pack I had last September really, dramatically decreased the pain.
Completely agree, carolyn. Sometimes we have to make choices, and as long as we make those with our eyes open, with the best information we have, then it is the right decision for you. You certainly got great mileage from that steroid therapy and its eventual consequences, didn’t you?
Seenie (jealous of your having two Huskies!)
I have breathing problems and a week ago my Dr put me on prednisone, after 24 hours my Fibermyalga felt almost gone, I called my Dr asking them if that medicine is why my Fibermyalga is not hurting, she said yes but that it will not work for a long period of time
As a nurse with Fibromyalgia I agree with your Dr. By mouth steroids will feel good for a short time, then you must deal with the side effects of long term use, diabetes goes up, weight gain and severe osteoporosis.
But in a severe flare of Fibromyalgia it can be used, most Dr. won’t give more often than every 6 months. But is individual.
I hope this helped.
As a side note, steroids even helped my osteoarthritis.
Before I was diagnosed with fibro, my rheumatologist treated me with steroids for about 6 weeks. I felt wonderful. Then in February, I got an upper respiratory infection and the doctor treated me with steroids. Again, I felt wonderful. My current rheumatologist is perplexed by this, because steroids are not supposed to help with fibro. I don’t know how to explain it, but if I could take them every day, I would! But not worth having fragile bones because of it. It seems that the occasional treatment of steroids could be beneficial to some of us.
I completely agree occasional use could be beneficial. I just went on vacation with my family. It sucks when everything comes to a halt or I miss things because grandma has to lie down. I’m only 64, I hate that I miss things.
And there are times when I don’t think I can bear another day. Drs don’t want to order them more than once every 6 months. I know, being a nurse I’ve seen the effects of long term use, usually for breathing illnesses. It can be very bad.
So I guess part of the choice is ours. Sure would have liked them before this vacation.