I have a long history with issues with my immune system. I'm 36 and been dealing with issues since I got sick in Europe in 1997. I have had a significant flare up with whatever I go through, since having my daughter in June. Questions around Lupus, Psoriatic Arthritis due to psoriasis I have, joint issues, blood work are all part of this. I have been diagnosed with CFS/Fibro since 1998...though I really can only relate to CFS.
I'm being put on the Medrol Dose Pak to see what the results are as far as pain. I'm hoping to hear what other people experienced as far as pain level when on it. Did it help??? I'm really hoping for some relief.
Medrol, a brand name for a type of cortisone, is the most potent anti-inflammatory there is. You should get some good relief but it will be short lived. Once off, you may find the pain slowly coming back. But it will tell your doc if you need to be put on something permanently.
We can't take cortisone permanently or it can kill us. But it's great for bad flares. And if it works, you can try to find a drug that works on a daily basis to keep you out of a flare up.
You'll also find that you'll get a "high" off of it...it makes you wide awake and tons of energy but that does wear off after a couple of days as the dose goes down. Make sure you eat when you take the pills as they can give you a bad stomach ache.
Let us know how it goes and if you have any questions.
Thank you your message and information. I am shocked that I already feel some relief from when I took it this morning. How is that even possible? The overall body pain is lowering. But most notable is the energy. Wow. Awesome.
I had a horrible arthritis and soft tissue flare up a couple of summers ago. I happened to be at an appointment with my neurologist and told him about it and how it was hindering my walking and movement. He prescribed a week's worth of medrol for me. Day one and two were so much better, but then I noticed that I was starting to feel strange mentally by day 3 and by day 4 I was attending my cousin's funeral and realized I was having trouble seeing, standing, and was very affected by sound and light. My brother is a doctor and realized I was having psychotic episodes from too much and told me to quit the meds. I don't know if you are supposed to titrate up and down with this, but my doc did not. When I saw him 3 months later and told him about this he said it was not possible, but my brother disagrees! Yes, medrol is a big help, but if you start to feel strange, call your doc immediately. Hope you get some relief that lasts for a while.
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Steroid psychosis is one of those things that just happens. I've had it happen twice and it was just as you described yet I've taken much higher doses and for longer times without a problem. It goes away when you stop the drug but no one seems to know if it will happen ever again.
Has it happened to you ever again?
I haven't had it happen since 1988. Yet it happened twice in 5 years back then.
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I've not used Medrol for Lupus flares because the dose isn't high enough or long enough. Oral prednisone is what I've been prescribed for these flares. I have, however, used Medrol dose packs many times for severe nerve pain flares/arthritis flares from my spine problems. Yes, steroids certainly can help very quickly. For several years, I couldn't afford to get ESI's or anything, so everytime I got real bad, my PM would call in a dose pack for me. The first 2 days would help slightly while on the higher doses, but that was it. Since the dose pack is a taper, starts with a high dose and tapers down over 6 days until it's done, only the higher doses help me any. For myself, steroids are my miracle drug, though. IF I could take them all the time, I would. They make me feel so normal with minimal pain. It even helps my memory and thinking...brain fog disappears; my fingernails stop cracking & peeling and they grow like wildfire. And yes, I need less sleep while taking them, but still feel way more refreshed after sleep. Be careful, though, if you have diabetes, as steroids tend to raise one's blood sugar. I'm not sure if a dose pack would do too much with blood sugar being it's a very short course of steroids.
Another FYI....I've researched some into Fibro b/c my Rheum had thought I also had it. Of course I'm not a doctor or scientist, etc, but from what I've read in medical studies, steroids do not help fibromyalgia. I don't know if steroids could help CSF, though. I've seen it written that if someone who has fibro gets relief from steroids, it was most likely not fibro to begin with.
Thank you guys for your responses! Very helpful. Well it's my second day and I am pain free for the first time since I gave birth to my daughter. It is absolutely unbelievable. I even slept through the night and didn't wake up with any pain. I am guessing this means arthritis or lupus at this point? Who knows! What I do know it I cried my eyes out this morning because I couldn't believe how normal my joints and body felt.
I am so sorry that any of your had psychosis with it. I hope that does not happen to me. I have had a bit of leg cramping, and was a touch lightheaded yesterday. But other than that, I feel like a million bucks compared to how I have been feeling.
Yeah, me thinks that whatever I have had for all these years was not JUST CFIDS/Fibro. I am having way too strong an effect from the Medrol for it to have just been that.
I have to contain my frustration at doctors for trying to solely put me on some anti-depressant (which I never have taken) for the CFIDS/Fibro when this has already stopped the pain.
It's all very confusing and interesting to me I tell you.
I'm happy that you're feeling so great, but just be careful. I can't say if it will happen to you, but the pain may come back as your dose lowers or after you're done taking it. Sometimes after you get a dose of feeling so great and normal, then your pain & symptoms come back, it almost seems worse. At least it's happened to me. Well, it hasn't really happened with the dose packs so much as with long courses of prednisone. Also be very careful not to overdo things while you are feeling good! I'm sure many of us have done that, as have I, only to pay for it once the meds wear off or even before they wear off.
If you haven't experienced any bad side effects on the higher doses, then you probably won't since the dose is lowered each day until they're done. I've never had any mood changes, etc with steroids, but my sister sure does. She gets very short tempered & flies off the handle over the tiniest things.
I sure do hope that the dose pack gives you relief for a while!
So last night (second full day) I got this whole body flushing from the medication. And I also had about 1/2 hour of mild anxiety. I have been having body flushing and swelling to begin with and have had mild-moderate anxiety over the years. Well first day on the Medrol, the inflammation and redness decreased and then yesterday night it got worse! I called the dr office this morning and nurse said that this means I need more Medrol and to start another pack once this one is done. Hmmmm, well I do love that I feel better. But am somewhat nervous about taking another pack of so much Medrol. I know this stuff is long term not good for the body.
Anyway, today is my third day and I still have this burning, flushing feeling on my knees and arms. But other than that, I still am pain free and have more energy.
And yes, I really know what you mean about taking it easy. I know in general when I am not having a flare up (of whatever immune system/arthritic condition I have) I pay the consequences. I am just feeling so blessed to feel good!
Yes, it can definitely cause flushing and swelling, which is water retention. People who take long term oral steroids tend to get what's called "moon face". It's very noticeable in the face because it literally blows up big. It's because the steroids cause you to retain water. Even taking another dose pack of Medrol is not "long term" use, as long as you don't keep taking them as soon as the last pack is gone. Long term would usually mean over many weeks or months...or years. There are people who have to take it very long term if it's benefits outweigh all the risks (like my sister).
You could be getting worse because every day you take a lower dose, so by now, that dose probably wasn't enough for you. Also, such as when taking oral prednisone, one has to slowly taper down and off over a period of time; When one goes down to a lower dose, many times they feel worse for a little while until the body gets used to the lower dose. This has happened to me plenty of times. However, I'm not sure how common that is for short term dose packs. When the dose gets lowered, it really sucks, because you almost feel like it's worse than before you started it. Sometimes this has happened to me even after an ESI wears off even though medical literature says that ESI's dont' seem to affect the whole body as oral steroids do. There are always exceptions.
Ill be starting my second pack of Medrol this week. I am on my last one tomorrow morning and then on Tuesday I go in for a chest xray. The pain and aching are back but not nearly as bad as it was before the pack. So I will still probably do the othe pack as the nurse recommended but we will see. I just wish I knew what this meant. I still don't have a diagnosis besides CFIDS/FIbro and since Medrol doesn't work on that I'm trying to be patient in waiting to know what my diagnosis is. AND now I can't help but wonder if I ever had that? If all the pain left and is still better and it was due to decrease of inflammation....then what???
Thank you for reading and responding. So far all your posts have been very helpful!
Last edited by RoseRincon; 02-13-2011 at 08:57 PM.
Again, no one here can diagnose you, but we can share our own experiences, etc. I'm sorry if I missed it, but what sort of symptoms have you had? I know with inflammatory disorders and/or autoimmune diseases, there are many symptoms that are the same or similar in many of them. Some of them are hard to diagnose.
Oh of course no one on here can diagnose. It was more rhetorical in nature because I'm just so confused. See I've been dealing with this for so long on my own and taking such personal responsibility for dealing with my health through mostly natural ways avoiding rheumotologists, I thought I pretty much had it handled. But after having this baby, I have just been even more unwell them I was before and have not been able to cope physically. The list of my symptoms is rather long and issues seem to come and go as they do for so many of us. But mostly what I'm dealing with right now is:
-joint pain beyond belief
-aching like flu
-psoriasis rash all over my body with painful areas on elbows and feet
-redness/swelling all over body sometimes on face
-temperatues up to 100
-tingling and numbness in legs/arms
-shoulder and arm pain on left hand side (dr thinks arthritis)
-shortness of breath and chest pain (not anxiety related) with a gurgling noise at night and morning
-ocular migranes on left hand side (flashing blue and purples lights)
-weird blood pressure readings
-abdominal issues of stomach swelling and nausea
-fatigue - but this is more due to pain
-swollen gland like feeling in neck and under arms
-urethral burning (not yeast or anything like that)
-get infections easily
And ANA panel positive with tinter spreckled of 1:160. And also sensitive CRP elev
ated (one for heart. I'm also low Vitamin D (but been taking supplement) and also hypothyroidsim.
You can see how this is a fuzzy picture with so many syptoms. Not easy for dr to understand I am sure.
And I had a whole panel of tests done with nothing else coming back out of range except above.
Last edited by RoseRincon; 02-14-2011 at 09:27 PM.
Have you been checked for Lupus at all? The reason I ask is that I know lupus can start for some women while pregnant or right after being pregnant. However, many of these symptoms can be found in many autoimmune and other diseases. YOu also mentioned you had a positive ANA and elevated CRP, which can be found in lupus, though it can be found in other autoimmune and other diseases. You do have a lot of symptoms that I've had . I've been diagnosed with lupus and fibromyalgia, but I do not believe I have fibro. My former rheum seemed to make that diagnosis due to areas on me that hurt, which I later found out were severe spasms due to cervical and lumbar stenosis. Long story, but I never went back to that rheum again. I've had many symptoms of lupus over many years, so I'm not sure if that diagnosis is correct or not. I've had many lab tests done and Plaquenil seemed to help me, as well as prednisone. Although, when I was about 19 or 20, I did have a raised rash across my face and forearms which made me see a dermatologist and he had suspected lupus back then. I also had a high ANA titer back then. So who knows. It's so hard because there are so many conditions that cause the same or similar symptoms and they don't all have definitive tests....many of them are tests, plus symptoms put together like a puzzle.