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Prednisone withdrawal tendonitis ?

Posted , 7 users are following.

anja46452
anja46452

Hi there.

I was on Prednisone for 8 weeks, starting at 30mg for 2 weeks and then tapering down. During the tapering process, I developed pain in my knee ligaments, followed by my groin ligaments, ankles, hips, hands and shoulders. All my joints also started to click and pop constantly, which they never did before. While most of the pains tend to come and go within hours, I've hurt my left groin and left ankle ligaments pretty badly after simple walking, and they still haven't healed after a month. I'm 28 and fit - a runner, in fact (until all of this started). So there is no mechanical reason why this should be happening throughout my body.

Any help or advice would be appreciated. It's been exactly two months since I've been off the Pred completely, with continually worsening symptoms. I've been taking chelated magnesium and Vitamin C for adrenal support, but no change.

0 likes, 13 replies

13 Replies

  • cjb106
    cjb106 anja46452

    Posted

    This is a very, very common problem. I'm on and off the drug for a relapsing and remitting condition and have learned how to combat this.  The only way I have found to stop it happening in the first place is to taper much more slowly than the doctors tell you to.  They will tell you to come down by 5g a week. I say come down by no more than 10% of what you were taking the week before. 20, 18, 17, 16, 15 and so on. Only 1mg a week so it's very, very slow but it works for me.

    That doesn't resolve your immediate problem. Before I cottoned on to the slow reduce I suffered aching joints for a good three to four months each time. It's worth talking to your doctor. They might agree to a steroid boost. Put you back on say 20mg for a couple of weeks and then that very slow taper. Else I think it's just pain meds  for the next couple of months.

    • anja46452
      anja46452 cjb106

      Posted

      Hi cjb106,

      Thanks for the response! I figured it was a tapering issue, but Prednisone terrifies me so much that I refused to bump up my dose again. But now, my concern is that I've left myself with permanent damage or something. Is that possible? Just so desperate to regain my normal function - I hate this. sad Another worry of mine was that I took antibiotics around the same time - NOT fluoroquinolones (it was telithromycin, which is said to be a safe combination).

    • cjb106
      cjb106 anja46452

      Posted

      From a web search, I don't see any contraindications for telithromycin and prednisolone but the former tells me you are being treated for a respiratory condition. Is that right?

      Prednisolone can cause loss of bone density. Older women can be more prone to osteoporosis but far less likely in someone so young who has only taken the drug for a relatively short time.

      Be aware some respiratory conditions can also have rheumatory implications (EGPA for example). I would ask your doctor to order a blood test to check your inflammation levels CRP (C-Reactive Protein) and ESR (erythrocyte sedimentation rate). These are general inflammation markers i.e. the inflammation could be anywhere in the body but at least it would be a start to seeing what might be going on in your body.

      I need to stress that I am not a doctor. I have just learned a lot from having to manage my own inflammatory illness and those of family members.

       

  • EileenH
    EileenH anja46452

    Posted

    Pred (and any other corticosteroids) can cause muscles and tendons to become quite delicate and prone to injury. It isn't anything to do with the adrenals and your taper during the course will have encouraged adrenal function to return after such a short course. Though as cjb says - slower is better!

    And don't waste your money - it is being back at a below physiologcal dose that will bring adrenal function back. Your body naturally makes a corticosteroid called cortisol and it is essential to life, an amount equivalent to about 8mg pred. While you are taking pred your adrenals don't need to make more, your body uses the artificial stuff that is there. It's a bit like your central heating boiler doesn't make more heat while the wood-burning stove is heating the living room where the thermostat is until the wood in the stove has gone out and doesn't produce heat. Then the boiler switches back on.

    • anja46452
      anja46452 EileenH

      Posted

      Hi EileenH,

      Thanks for the reply! So are you saying this is some kind of permanent structural damage to my tissues that will never return to normal? Or just a waiting game? Have you experienced anything like this yourself with Pred? Would NEVER have taken it, had I been made aware of all the myriad side effects. I refuse to go on it again, even for slower tapering purposes.

    • EileenH
      EileenH anja46452

      Posted

      No, no - don't worry, it isn't usually permanent! I had tendonitis because of taking a quinolone and methyl prednisone - even that is perfectly OK now. It is just a question of a bit of patience! I know - at your age you aren't keen on patience. 

      Don't be too upset about the pred - it is a very powerful medication that saves lives and prevent loss of vision and all sorts of things. But your doctor should have warned you to take things easily while on it. Maybe he thought you were sick enough to not overdo things. There is no drug that doesn't have myriad side effects and you were obviously ill enough to need the pred.

      I have to say though - it does bother me a bit you say it is steadily getting worse. Or are you forcing yourself to get back to your usual level of activity? 

    • anja46452
      anja46452 EileenH

      Posted

      Oh wow, that's so good to know! How long did yours take to disappear? As mentioned to cjb106 above, I took telithromycin antibiotics at the time the tendinitis started, but I specifically made sure there weren't adverse interactions beforehand like with fluoroquinolones. Oh, the irony. But it's probably totally unrelated. I guess it's not WORSE necessarily, but just ongoing. I try gentle walks and gentle Pilates, but those have both led to the more serious groin and ankle injuries. So frustrated.

    • anja46452
      anja46452

      Posted

      Sorry, forgot to mention why I was on Pred to begin with. I developed some kind of full-body inflammatory peripheral neuropathy last November, triggered by a drastic dietary change (tried to rapidly put on weight after having lost too much from years of paleo diet and cardio training). Everyone seems to think this is linked to dietary intolerances leading to autoimmune response (although my bloodwork is the picture of health). The AIP diet has done zero to help reverse the symptoms. Hence Prednisone... Which did actually help enormously. Now I'm back here, stick with raging neuropathy AND other debilitating symptoms that I didn't even have before. The tendonitis is far worse than the neuropathy alone, in all honesty. Hence my rage.

    • EileenH
      EileenH anja46452

      Posted

      Are you under a neurologist? What are your other debilitating symptoms - could they be due to an autoimmune disorder? If so you might be better under a rheumatologist - and one at a big centre like the mayo or Johns Hopkins who tend to be rather more "detectives", I have an autoimmune vasculitis - and early on I developed an allergy to highly commercialised wheat. It isn't gluten and other forms of wheat aren't a problem (spelt and kamut for example). On higher doses of pred it isn't a problem - but reappears at lower doses. 

      I sympathise - it is all a pain in the anatomy!!

    • anja46452
      anja46452 EileenH

      Posted

      Hi there, sorry for the late reply!

      Sorry to hear that you've experienced a similar kind of situation. So, there is nothing in my bloodwork that indicates autoimmune/inflammatory issues. All normal. I've basically had every test under the sun. Currently awaiting heavy metals test results. I've also done a food intolerance test that shows I have no issues with the foods that tend to 'set me off', leading me to conclude that it must be endocrine related. My neuropathy always flares up after a meal. Almost as though the blood sugar increase is what's causing the problems (but all glucose/insulin issues have been ruled out, and my readings are always without normal limits - even did the glucose tolerance test). It's truly bizarre.

      All medical professionals I've seen thus far have given up on me - including the neurologists at a local academic hospital. It's devastating. Got a rheumatologist appointment booked for August, but I don't think there's much point.

      The tendonitis continues, although I've managed to rehab my two injuries after a few days of physio. Trying to incorporate strengthening and gentle stretching exercises as well, as that seems to help (inactivity aggravates the pain and stiffness).

      One weird result that I got last week, was HIGH cortisol (was 774 and should be under 550-ish). I thought I'd have the opposite problem. After the Pred, I also noticed an increase in hair (face and shoulders) - all transparent and fluffy and only really visible in the sun, but I'm normally not hairy in the slightest. This also hasn't gone away yet at all. So bizarre.

      Eileen, how long did you wait until the tendonitis subsided? Did anything help?

    • EileenH
      EileenH anja46452

      Posted

      I just waited it out - I used crutches and still walked as much as I could. It started in mid-late March and I stopped carrying the crutches with me by Christmas. I didn't need them that long - but had other problems and was determined not to find myself stuck a relatively long way from home and unable to walk back!

    • ali15074
      ali15074 anja46452

      Edited

      I know this is an old post, but I would really appreciate if you can help me please!

      I've got a similar problem to yours, almost 3 month off dexamethasone(took 10 mg twice a week for 2 month, and quit cold turkey). And while my symptoms do slowly get better, I am still nowhere near full recovery.

      Last time I checked my cortisol levels, they were 652, should be under 576, similar to yours. From what I've read it's a sign of acquired glucocorticoid resistance after corticosteroid recession.

      I have symptoms of both high and low cortisol: anxiety, high blood pressure, mild fatigue, sleep problems.

      My question to you are:

      1. Did you also have high blood pressure, anxiety issues?
      2. How long did it take for your symptoms to dissapear, and for your blood work to normalize. And what did you do/take for it?
  • eileen06891
    eileen06891 anja46452

    Posted

    I had beeen on Prednisone 15 mg. For 4 years. Taking more if needed when pain was very bad.  I went down from 15 to 10 in one month then went down the other 10 mg. I mg per month for one year.  I had no reactions. Except that I fortunately lost 57 lbs after gaining 63 over the 4 years.  Good luck. Try taking some amount according to your doctor til you are relived from all this aggravation then I would along with the doctor go down so many per month that fits your illness  I have PMR and R A
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