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Joint pains + Dexamethasone (steroids)

Rory1987's picture
Rory1987
Posts: 122
Joined: Nov 2009

Since I started my radiation therapy my radio oncologist have been prescribing me with dexamethasone now I noticed that everytime im on a high dose for the first few days im experiencing joint pains on my foot and the site where the pain is getting inflamed. Has anyone experienced this too?

Taf
Posts: 4
Joined: Jan 2011

My Fiance is on dexamethasone and he is experiencing pain in his knees. His doctor said the steroids are causing it.

He is also experiencing diturbed sleep paterns. Have you had the same?

Rory1987's picture
Rory1987
Posts: 122
Joined: Nov 2009

yes I do have the same, my sleeping patterns are disturbed and it's very annoying. My knees and the joints on my foot got swollen and it hurts a lot. Good thing after the doctors tapered my dose the swelling and pain went away but I still have sleeping disturbances.

evon
Posts: 24
Joined: Jan 2011

My fiance takes DEX and instead of taking his last dose i give it to him at 2pm.It has helped a little.His foot and ankle are also swollen and painful.He,s on meds to help that but they said it wont get better while on the steroids.

Rory1987's picture
Rory1987
Posts: 122
Joined: Nov 2009

My ankles and knees were so swollen that I had to ask for a wheelchair to take me the the radiotherapy room. Painkillers didn't help much wih the pain, luckily we have an electric warm bag at home so I tried putting it on my swollen ankle and it seem to alleviate the pain a little.

blackngray
Posts: 11
Joined: Mar 2011

Oh my, I absolutely despise this drug. Have you heard of Boswellia? It's a natural pain killer and anti inflammatory. I have yet to try it but have heard wonderful things about it. It is used by many who have brain tumors and swelling in the brain, versus a steriod.
I was on the same steriod upon diagnosis. I used to wrap my knees and ankles so tightly. I couldn't sleep more than 3 hours at a time. My energy level was always up, heart racing, sweating, insomnia, gigantic appetite (I gained 20 lbs! But lost it as fast as I gained it, once off drug). I must say weaning to lower dose or to come off the drug is a nightmare. It is highly addictive to your body, so please never come off cold turkey. I tried that and paid for it with the shakes and severe joint pain. Like you said, barely could move. I used to cry and hold my knees in pain. Oh and the moon face and moon belly. I actually looked that term up and it pulls up along with this drug. Swollen face and bloated tummy. It feels like an extra sponge layer of fat is underneath your skin. Weird. This drug retains all of your water and takes it away from your joints. Maybe that's how it relieves the pressure in the brain. Not sure. This sounds awful because it is. I truly feel there should be an alternative "drug" to this medication. I've heard even cortisone shots can do the same. I'm unsure of that since I haven't tried it.
I haven't spoken to one person who hasn't felt the way I do about decadron.

I wish you well.

Rory1987's picture
Rory1987
Posts: 122
Joined: Nov 2009

another thing about this drug that I despise is that It makes me urinate A LOT, even after being taken of this drug I still have frequent urination but not as frequent during my steroid days.

palmyrafan's picture
palmyrafan
Posts: 398
Joined: Mar 2011

Please don't get me started on how nasty Decadron is. During radiation in 1996 it caused nerve pain in my back, I gained 60 lbs (was only on it 6 weeks) and it took forever to come down from.

Was in the hospital in January and February of this year and some moronic intern heard that I had brain cancer and decided (without first consulting me or my husband) to put me on Decadron 40 mg per day!!!! They release me in January after 5 days with 2 days of Decadron and a week later I am back in the hospital undergoing severe withdrawal from it. They decide to put me on it again even while I am shouting that I can't take it.

I get home, I am the screaming banshee from (hello there), can't function, my heart is racing, I can't sleep, etc. Two days after coming home I finally get an appt with my family physician who takes one look at me and says "you are on the wrong medication and the wrong dose". He puts me on Prednisone and tells me that I can taper down in 1/2's over a period of several months, not days. He is furious that the doctors would not listen to me and now he has to clean up the mess. He says that I may have to remain on a very low dose for years to undo the damage.

Decadron is horrible and it should be taken off the market. I have never read one good post about this medication, regardless of what forum or board I have been on.

KMPonder's picture
KMPonder
Posts: 102
Joined: Dec 2009

Some months back I wrote about my husband's issues with only 12 mg of daily Decadron. (Steroid psychosis was the result!) It was a VERY tough time. That was in 2009. Last Thanksgiving week, they decided to do 1,000 mg of Predinsolone a day for five days - i/v push as he had started the vision loss. Steroid pyschosis was EVEN worse. Had to have him hospitalized both times. When he had the craniotomy in February, we ONLY agreed to it if he did not have to have the steroids. They did it without steroids, and he's done well. I was pretty concerned the first five days in the hospital, as he seemed much like a stroke patient early on, but we've overcome that obstacle.

Doctors don't warn you about the possibility of these horrible effects of steroids, and now I show his medication allergies to Decadron and Prednisolone! When they ask what's the reaction, I say "bonafide steroid psychosis!" I could write a book, as I bet many others can. Glad those days are behind us. It's going to take those of us who've had real life, scary experiences to educate others. Doctors are seriously failing us in that regard. If we had known of the possibilities of hallucinations, paranoia, etc, etc, we could have been semi-prepared and made our environment more safe for my hubby. He could've easily hurt himself or others under the circumstances, and we are grateful to God He protected him and us during that time.

palmyrafan's picture
palmyrafan
Posts: 398
Joined: Mar 2011

I was also extremely suicidal while on Decadron in January and February and kept telling my husband I was going to jump off one of the bridges in downtown Philadelphia. I also asked him to wait until I was out of the room to hide the butcher block full of knives because I didn't trust myself.

He, quite obviously, was in a state of heightened alert for the 2 days it took to get me in to see my doctor.

I am now on 12 1/2 mgs of Prednisone a day having tapered from 15. My doctor is tapering me at new levels every 2-3 weeks, not every 2-3 days so at least I am doing better.

I agree about the doctors needing to listen to their patients more often about what they can and can't take. I tried to explain it to them in the hospital and my husband finally stepped in and took charge by saying "what are you giving her, how much, why does she need it etc." Unfortunately, we had an endocrinologist (who didn't speak very good English) and thought that because he was the doctor that he knew better than I did what I could tolerate.

The issue of doctors pushing Decadron is one that gets my blood boiling and like you, I am now quick to say that I have steroid pyschosis when on Decadron. That is enough for the doctors to say, "oh, yeah, we need to stay away from that".

Rory1987's picture
Rory1987
Posts: 122
Joined: Nov 2009

Ever since I've been taking these damn steroids I started to develop a cataract. I can barely see during bright daylight.

TAMMY S's picture
TAMMY S
Posts: 16
Joined: Jan 2011

My legs have been aching for weeks and I just thought it was due the cold weather here! My sleep has been horrible, waking very early then desperate for a nap in the afternoon and wide awake at night. They adjusted my dose and timing but nothing has worked. It did help with my headaches though. I had horrible headaches about 1 hr after raditation. I only have 7 more treatments so I don't want to switch now. I have not had the psycosis! How scary is that! But I do get some surges of energy then alot of down time.

BDD
Posts: 2
Joined: Oct 2011

Hi guys, Hope you are all doing well.
I came across this post goggling my symptoms and would like to ask how how long dose this joint pain last???.

Did the pain go away when you stopped taking the steroid.?

I'm on my 3rd and hopefully last week tapering off Decadron for Brain swelling from Gamma-Knife surgery I had 12 months ago. They started me on 6mg every 6 hrs for the first week, then 4mg week#2 2mg Wk#3 now I just started splitting the pill yesterday day for my last week of 1mg.

Around 12:30 last night when I woke to take my med, I noticed that my Knees, ankles, elbows,and wrist were having severe sharp joint pain. It continued and was keeping me awake, so I took a sleeping pill. When I woke in the am, it is mainly my knees and ankle that still hurting.

I received blood lab results for a routine CBC etc that was recommended by my Neurosurgeon most of which came back normal apart from the following. Doctor said the steroids would be the cause of these results.

Hi WBC 14.7 Norm is 4.6-10.2
Neutrophils 82 Norm is 31-80

Other drugs I just started taking:
Zolpided Tartrate (Sleeping pill)
Calcium
Vitamin E
Moxxor Omega-3

Any insight on how it all worked out for you would be greatly appreciated.
BDD

palmyrafan's picture
palmyrafan
Posts: 398
Joined: Mar 2011

Luckily I wasn't on Decadron long enough to experience the joint point, but I did experience the feeling that I had a hole in my stomach that I couldn't fill fast enough or often enough with food.

I have heard that the steroids (Prednisone & Dec) can cause joint pain, but like you I haven't heard anything about when, if or how long it takes to stop.

I also had problems sleeping while on the Dec. Woke up every 4 hours dripping in sweat and would have to change my jammies because they would be soaked. Would also then have a problem going back to sleep.

Since on Prednisone, I take it first thing in the a.m. and then at noon with lunch (down to 8 mgs per day, my maintenance level) and so far, I've not had any problems with sleeping. Seems the later in the day you take the steroids, the harder some people have in falling and staying asleep.

BDD
Posts: 2
Joined: Oct 2011

Thanks comment Palmyrafan,
Now after a couple of days of posting this the pain seems to be first thing in the am each day but gets better throughout the day. I wake up with extreme knee pain and I feel like I need a walker getting out of bed. It takes a few hrs for me get moving around to a point I can handle the pain enough to walk. I'm only 34 but feel like 97. lol. I guess I will just see what happens as I get off this med.

Yes I still want to eat eat eat, but luckily I'm not putting on too much weight, it's just moving around from my legs, butt to my upper body face, neck etc. I got the acne which is slowly getting better as I wean off. Sweating is also slowing down. Feeling spaced out all the time is probably my last but not least complaint about this med.

I'm currently on 1mg every 6 hrs right now or 4mg per day and then supposed to stop at the end of the week. After reading several posts on here that stopping cold at 4mg seems like it could be a bit much to soon.

However I'm having an MRI soon to see if the swelling is going to return and if I need to keep taking this med or not... Oh no problem sleeping now if I take a Zolpidem before bed. It really helps.

palmyrafan's picture
palmyrafan
Posts: 398
Joined: Mar 2011

I found that by adjusting my sleep # bed to a higher rating (90) that it helps with the aches and pains of the Prednisone. My knees are the worst.

I have been on the steroids since February and I have gained 25 pounds. Wish I could say I need it and you can't tell, but I would be lying. I don't even recognize myself in the mirror anymore and no matter how little I eat, I still gain the weight.

As for the Ambien (Zolpidem), it makes me incredibly loopy the next day so I try not to take it unless I really need to. But I do have a prescription on hand if necessary.

Stopping cold turkey with any drug is not a good idea. I'm surprised your docs don't have you totally taper down to 1 mg and then a 1/2. As my doctors told me about tapering and what my body needs, "you'll know when your level is too low and it needs to be adjusted". And they were right. Tried 7 mgs a day and it was too low. 8 works well for me.

Hang in there, good luck!

Teresa

Cooking
Posts: 4
Joined: Nov 2012

At a very young and healthy 53 year old I was diagnosed with glioblastoma in January of 2011. When I followed doctors instructions for tapering, suffered extreme joint and muscle pain. Went back on Dec at 1mg. All pain was resolved.

After GBM recurred in June 2011, again tried tapering but pain was horrible so i stayed at 1 mg. Neuro Onc thought perhaps the temodar was causing joint pain, so I stayed on Dec until August 2012, when my daily temodar treatment period was over. Tapered down to ZERO over a period of one month. As I tapered, I began to experience joint pain. When I was down to zero, I had severe throbbing bone, joint,and muscle pain for a week and overnight all but the joint pain was gone.

My neuro onc suggested I see a rheumetologist . I did and nothing showed in specialized bloodwork or X-rays (the X-ray was to check for sarcoidosis). I am now making an appt with an orthopedist. Mean while my oncologist is aware of how the pain is affecting my ability to enjoy my GBM remission and is waiting for my testing to be completed. So far all docs agree that if nothing is found, the root cause is the steroids. It's now November 2012.

Few other things worth mentioning:
1) In November 2011 I started working out with a very experienced personal trainer and felt great. As i tapered i could do less and less when i stopped the steroids i was unable to exercise at all. I asked the rheumatologist if I could have caused damage during that period where I was 'protected' by the steroids and he said no.

2) I now suffer constant pain in my hands, elbows, knees, and often pain in hips, shoulders, and ankles.

3) I too a gained weight from dec and am now below the weight I was at before my GBM dx. I fear I might be losing muscle.

4) I plan to contact the FDA with my complaints and results of all tests.

Anyone have a similar history and where did you finally find relief.

Thanks,
S

Cooking
Posts: 4
Joined: Nov 2012

After three painful months and consultation/testing with a rhuemetologist, orthopedist, endocrinologist, and my Internisy, my research led me to Magnesium supplement, which completely resolved my pain...practically overnight. From my understanding there are no reliable tests for magnesium insufficiency so I just started taking it and it resolved all my pain. 

 

I'Ve also been on Nexium for several years and that, along with the steroids, could have resulted in the magnesium insufficiency.

Had I gone to a naturopath I bet I would have resolved it sooner. 

I hope this helps someone out there who suffers from pain after steroid cessation. It's such an easy fix, I can't believe it. 

Sue

 

 

 

 

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