Why Getting Severe joint and bone pain while on Prednisone

I started getting severe joint pains last Thursday and attributed it to stress because I have a family member who is in hospice and I had to travel by plane to visit her.
The pain and frequency continues to increase and has spread from knees to ankles and hip with bone pain occurring in shins and thighs.
I have been on 60 mg of Prednisone since Aug 18th.
Also, I have been exposed to 3 people with bad colds when I travelled and now my daughter came down with a bad cold as well on Thurs..
Is this a common side effect or can it be a sign of an infection brewing?

Thanks for any help,
Doreen

Report post

23 replies. Join the discussion

Hi, Doreen,

HIgh dose, long term steroids will cause damage to bones and joints. It's called avascular necrosis. It's what steroids do. But You've been on steroids less than a month, so it's unlikely that is the cause. Steroids can also cause potassium depletion which causes muscle cramping in the legs and feet which might feel like bone pain. Stress can cause any number of problems! Write it all down and discuss it with your doc.

God bless,
Mary

Report post

As the pain is spreading, and as you say you have been exposed to infection and under stress, it sounds more like an infection than avascular necrosis which would be a severe sharp immobilising pain. Usually it occurs in the hip. If cannot be determined from an x-ray. You will need to see a rheumatologist who will be able to do MRIs and the necessary physical examination. There are signs of the problem when he manipulates limbs in a certain way. It is unlikely to be avascular necrosis. When I was on 75mg of prednisone, the following day I came down with a very nasty sinus infection. Most of the pain was in my neck and face. Prednisone makes you susceptible to infection.

Pris

Report post

Hi Gypsy:

I do have a call into my main doctor. After leaving the ER and receiving a shot of solu-medrol and toradol yesterday, I was told my labs were normal. Today I picked up the copies for my primary doc only to discover that my neurtophil count is off the wall and I barely have any lymphocytes. One of the docs I work with says he's concerned that a bacterial infection is brewing.
Thanks for the reply and concern. I couln't make it through all this as well without the support that I receive from everyone here.

Hugs,
Doreen

Report post

Pris,
You are on to something. I went and picked up my "normal " lab results this morning to give to my primary doc. Lo and behold they were far from normal. My neurtophils are 93% and lymphocytes at 2. I spoke with a neonatologist that I work with and he thinks a bacteria infection is the most likely culprit.
So, just waiting for a return call from main doc.
Thaks for your help, it means a lot to me.

Hugs,
Doreen

Report post

I am also on predisone...at 40mg..and I have constant joint pain. But check this out...my medical doctor informed me today that the predisone is suppose to minimize the pain. Yeah right....bp was 140/92 and he says that's normal with predisone....I just give up. They are so clueless to me and I am almost tired of teaching them. I don't have the energy to kill a fly.

Report post

It's frustrating. I did find on a list of side effects that prednisone can cause joint and bone pain.
From experience as a nurse of 25 yrs, I have had to re-educate doctors about common side effects to certain drugs. They prescribe them. But as bed side nurses we administer them , watch for effects and have to know every little detail there is related to the drug.
Did he give you anything to relieve the pain?

Doreen

Report post

Nope...says he doesn't want to add more narcotics to my menu...and that the predisone is for pain.

Report post

They say toradol is very good and is a non-narcotic. Maybe he would consider that but you'll have to watch for GI issues since it is a strong NSAID.
Hope You Feel Better,
Doreen

Report post

DoreenC...I went in for my appointment today with the same complaints...he checked my bp..140/97...but don't want to prescribe me anymore narcotics as he put it...and said that the high blood pressure is due to the predisone. But he upped my lexapro to 20mg a day and upped the klolopin to 4 pills a day....WOW...huh. And as for the pain...he says that's what the predisone is for.

Report post

Sorry to hear about all of your side effects.
I landed in the ER again last night with the worse pains ever. The doc said the prednisone can cause it. It's amazing what some know and what some don't know.
So now on Vicodin and waiting for primary doc visit tomorrow.
I know that prednisone can help pain (helps my abdominal pain from the GI sarc) but it is also a potential side effect to produce it (which it's doing to my joints and bones).
Hang in There and Hope for Some relief to you quickly,
Doreen

Report post

I'm having the same problem right this very second. My body is hurting it seems like everywhere. My ankles are swelling. The last time I was on prednisone I injured my left ankle. When I started with the 60 mgs of pred that's the first place it started to hurt. My ankle has turned purple in the spot where it was the last time. My blood pressure was 183/110, they immediately sent me to my PCP who had to prescribe another blood pressure medicine. I already wear a 75 mg duragesic patch and didn't want any other opiates in my system, but I hurt. I am waking up hurting. I used ice on the places that had swollen
worse, that helped a little. I'm calling this Dr. today to tell him just to see what he says.
Good luck
just try not to let yourself not move around. Try to walk it off.

Report post

I've been on 40/30mg of pred for about a month. I have definitely noticed aching in my shoulders and less so in my hips. Not too bad but definitely there. I'm pretty sure its the pred.

And lord, the appetite. I am hanging on by my fingernails to keep from gaining too much weight. Always struggled with my weight, and I'm now back to a previous high. Praying I can hold on at no more than that! But I could eat the desk where I'm sitting!

Report post

Hi Mrsbias,

I find this thread interesting because the same issues were a learning experience for me the first year I was diagnosed and before I found the Inspire forum.
Thank you all Sarcies who paved the way for me!

One question I have; is your Rheumie managing your anti inflammatory treatment? If so the role of the PCP is to monitor and manage your overall response to your Sarc treatment.

Does the Pred prescribing doc have a short term and long term anti inflammatory treatment plan?
Short term is called 'pulse' dosing and usually involves starting Pred at a 60-80mg dose, tapering by 5-10mg every 4-5 days. Most often pulse dosing does not cause pain but in fact relieves it. And yes, you can expect joint and muscle pain usually on long term high doses which is normally managed by your Rheumie who knows therapy side effects inside and out..... My Rheumie has a special lounge and nurse for patients who come for weekly IV infusions of anti inflammatory drugs and pain management.

Longer term Pred (usually managed by symptoms, regular blood work and imaging) requires regular multi system monitoring and management by the PCP, mainly b/p, blood glucose, etc. Yes, you can expect higher b/p and higher fasting blood sugars, but the PCP ACTIVELY attempts to keep them within normal ranges in longer term Sarc management to prevent exacerbating multisystem aging and dysfunction from the side effects of steroidal stress and damage.

Also, your Endocrinologist should be a key player in monitoring glandular status and response - thyroid, pituitary, adrenals, etc. It is his role on your healthcare team to have more expertise than the PCP in this area and he will treat you on the gland level. Your glands regulate all the body functions - it is so important to keep them operating at their optimum,especially in the presence of Sarc .

You should ask your specialists to send a summary to the PCP and/or Rheumie of their eval and approach. Mine always cc a copy to me as well.

A note on Toradol.
TORADOLORAL (ketorolac tromethamine), a nonsteroidal anti-inflammatory drug (NSAID), is indicated for the short-term (up to 5 days in adults), management of moderately severe acute pain that requires analgesia at the opioid level and only as continuation treatment following IV or IM dosing of ketorolac tromethamine, if necessary. The total combined duration of use of TORADOLORAL and ketorolac tromethamine should not exceed 5 days.

TORADOLORAL is not indicated for use in pediatric patients and it is NOT indicated for minor or chronic painful conditions. Increasing the dose of TORADOLORAL beyond a daily maximum of 40 mg in adults will not provide better efficacy but will increase the risk of developing serious adverse events.

Again Sarcies, thanks for all the great posts which have helped me organize my healthcare chaos.

Report post

Hope all goes well with you and the doctor can help you out. It sounds painful.
Thanks for the reply.

Doreen

Report post

I found out today also that muscle aches and weakness are a side effect of the prednisone.
As far as the ravenous appetite, I totally understand. If it wasn't for my GI Sarc making it difficult to eat, I know I would be blowing up all over like my face has.

Best Luck with the diet Issues and thanks for the reply,
Doreen

Report post

Dear Irene Marie;

Thank you for all of this information. I went to the PCP who said to get to a rheumatologist for the pain management etc etc. I am on 60 mg of pred daily and will not start to wean until mid Nov.
I am taking your advice about the endo as well. My TSH results have been dropping by almost half every few weeks. I normally have had subclinical hypothyroidism so going in the opposite direction is totally abnormal for me. Can this be because of the prednisone or the sarc?
Thanks for the info on Toradol. I didn't do my homework and thought it was just a strong anti-inflammatory (trusted the words from the ER nurse). Even though I am a nurse, my expertise is in neonatal ICU care and I have not practiced adult med in over 25 yrs.
Thank You AgaIn,
And I will get to working on those 2 other specialists.

Doreen

Report post

I'm happy to share and by the way I worked in L&D for 35yrs. And we are also a Level Three NICU.

Sarc kicked my butt so that I couldn't keep up with the younger staff anymore. We had gotten accustomed to doing an emergency C/S in 7 minutes (that's with the baby out) so between my painful limbs, hearing loss, A-fib and increasing loss of concentration it was time to take an MLOA and find out what the heck was happening to me. Things exaccerbated so quickly in that 16 wks off that I went on short term disability and never went back. That was in 2002. I just got Sarc diagnosed and started therapy 2.5 yrs ago and since adding MTX this summer a definite general improvement is finally in big letters in my journal. Thank you God.

Let me know if you would like to assess my healthcare flow chart templates for keeping all docs on the same page.

Ciao for now,
I.

Report post

Doreen, When I got on that high dose, my pulmo gave me an antibiotic (Bactrim) to take every other day, You are able to pick up an infection easier than ever.
I also take Fosamax once a week for my bones and even a medicine for the heart burn Pred can cause. I hate being on all these meds to protect me from another med. But after losing lung function and being so short of breath I am just starting to feel better.

I hope you talk to the doctor who gave you the high dose of Prednisone,make sure you follow up with him. Sometimes they will put you on Pred then say nothing else. Ask him about it.

Report post

Dear Irene:

I would definitely like a copy of the healthcare flow chart templates.
Sorry to hear that you had to stop working. That is one of my biggest fears. I have been out of work since July 31st and praying that I can return before the short-term disability is finished.
Thanks again for all of the help,
Doreen

Report post

Dear Audreymac:

Thanks for the input. I was wondering the same thing about antibiotics. My labs show that my immune system is very compromised. My absolute lymphocyte count should be 1000-3000 and it is 250.
I am already on aciphex for GI sarc and take maalox as needed. So, it's a balancing act between the pred GI side effects and the need to take it. I too have also thought about osteoporosis since without this disease or med it runs in my family prematurely starting in 40s and early 50s. I'm 47.
I am definitely following up with the doc. I just wish all of this would stop and I'd get my health back again.
Hope you are doing well.

Doreen

Report post

This discussion is closed to replies. We close all discussions after 90 days.

If there's something you'd like to discuss, click below to start a new discussion.

Things you can do

Support FSR

Help the Foundation for Sarcoidosis Research reach its goals and support people like yourself by making a donation today.

Donate to the Foundation for Sarcoidosis Research

Discussion topics

Help and information from FSR

Sarcoidosis and the Body
Sarcoidosis is a "multiorgan" disease - meaning it almost always involves more than one organ. It's unpredictable and affects different people in different ways.

You can learn about the ways in which sarcoidosis affects the body in FSR's Sarcoidosis and the Body brochure.

Community leaders