Tendon issues

[godgirl]

Question for all of you out there.

Recently (while trying to taper my prednisone), I've started having problems with tendons. I've had the roaming joint pain, but this is different. About 6 weeks ago, a tendon in my foot started hurting and was inflamed (per my primary care doc). No injury, just woke up one morning with it. It's a tendon that runs from the top of the arch on the inside and snakes up the inside of your ankle. I've been wearing an ankle brace since - and it's been helping.

Well, Thursday, I woke up and the middle knuckle of my right hand was stiff and painful. Not "regular" joint pain, because the pain is around the knuckle as well as inside it. When I try to grip things or make a fist, pain radiates down the back of my hand and up the finger. I keep feeling if I could just crack my knuckle in the right way, it would feel better.

So, any idea if it might be WG related? I've let my rheumy know, but she's not very concerned about it at this point. I've been suspecting that we barely have a semblance of control over the WG or whatever I have, and now I'm wondering if trying to taper on the prednisone sparked it again. (I started to flare when I got to 7mg, was bumped back to 10mg two weeks ago.)

Thoughts?

Jen

[Pete]

I recall reading that pred can make tendons more brittle.

How fast are you tapering? Once I got to 10 mg/day, I slowed the taper to 1 mg/ month. That rate has worked pretty well for me. Now I'm trying to reduce mtx, so I'm holding at 3 mg/day of pred for another 3 months to see how I adjust to less mtx.

[godgirl]

Interesting. Maybe that's what's going on?

I'm at 20mg mtx right now, and was at 10mg for 3 months before attempting to taper. 1mg per month. Got to 7 and wham!

[Geoff]

Hi Godgirl, sorry to reax about your problem. 2 issues come to mind. First of all how long have you been on pred? Extensive long term use of steroids leadz to steroid myopathy, wasted muscle, damaged tendons etc. After 6 years constant use I find myself having to think about what I want to do most carefully. I am trying Tai Chi and Yoga to help the tendond thru gentle stretching.
The other point that comes to mind is that your body naturally produces about 7mg steroid. I think, and its just my opinion that maybe your immunosuppressant is not doing its job properly? As you taper your pred, perhaps you are tettering on the edge of a flare? Are you due for some blood work? Keep a tab on your symptoms and good luck! Keep us posted.

[JeanMarie]

Godgirl, I agree with the pred connection. My experience was different. Before I was diagnosed, I was treated with a bunch of different antibiotics. I ended with an inflamed Achilles tendon. It was months before I could wear any shoe with a back, not even sneakers. (Physical therapy helped) Turns out a class of antibiotics called floroquinolones can cause tendon damage. If you have taken an antibiotic in the past few months, be suspicious. The problems with these drugs does not always happen immediately after use, which makes it hard to place the blame. Just my thoroughly unscientific experience.

Be Well!

[annekat]

Interesting. Maybe that's what's going on?

I'm at 20mg mtx right now, and was at 10mg for 3 months before attempting to taper. 1mg per month. Got to 7 and wham! Jen, 7mg of pred is right about where I had my last flare, too. I'm on 15mg./wk MTX and my doc doesn't want to increase it, which I question a little; I'd like to try one more pill, for 17.5mg./wk, and see if that makes tapering pred any easier.

As for the tendon stuff, yes, I've heard that about pred, too, that it makes the tendons more vulnerable to injury. I'm having a bit of a houlder problem, which has gotten better by going easy on it, but I can't remember anything that would have caused it. I'm wondering if a tendon in there could be damaged. I know I should see someone about it if it doesn't resolve soon, as I know a couple of people with shoulder problems that led to surgeries, who have advised me that physical therapy might help prevent worse problems in the future.

[annekat]

Godgirl, I agree with the pred connection. My experience was different. Before I was diagnosed, I was treated with a bunch of different antibiotics. I ended with an inflamed Achilles tendon. It was months before I could wear any shoe with a back, not even sneakers. (Physical therapy helped) Turns out a class of antibiotics called floroquinolones can cause tendon damage. If you have taken an antibiotic in the past few months, be suspicious. The problems with these drugs does not always happen immediately after use, which makes it hard to place the blame. Just my thoroughly unscientific experience.

Be Well! I had some real problems right after taking Levaquin, a big gun floroquinolone antibiotic, for a severe ear infection that was undoubtedly the start of my Wegs. My tendons and joints were so sore and sensitive I could barely walk for a few days and needed help going to my ENT appt. When I told him about it, he just said, "well, we won't do that again", which I'm sure he has forgotten about and probably goes ahead merrily prescribing Levaquin to people. However, I cannot be sure that this was not part of my initial Wegs flare; I was not diagnosed and would not be for another 2.5 years, during which I did have some intermittent episodes of debilitating joint pain, though not quite as bad. I will never know whether it was the Wegs or the drug or both. I have taken Cipro, another floroquinolone, a couple of times since then, and haven't had the same reaction, although with that and with pred both, I have felt occasional twinges in my tendons, a sign to move very carefully. I have read that these floroquinolones can be very damaging and problematical for some people, and that, as you say, there can be a delayed reaction, which makes it a little scary to know docs are prescribing them with little thought of this.

[greenjeep]

I had an infection a few months ago and my doc put me on cipro. He gave me a dire warning to be very careful because cipro in combo with (steroids I believe) made tendons very fragile. Not so sure about inflamed, unless you have a partial tear.
Don't know if any of this applies to you but it's what popped into my mind when I saw "tendon issues".


Sent from my iPhone while driving on the freeway, eating salt, and drinking a 78oz soda.

[annekat]

I had an infection a few months ago and my doc put me on cipro. He gave me a dire warning to be very careful because cipro in combo with (steroids I believe) made tendons very fragile. Not so sure about inflamed, unless you have a partial tear.
Don't know if any of this applies to you but it's what popped into my mind when I saw "tendon issues".


Sent from my iPhone while driving on the freeway, eating salt, and drinking a 78oz soda. Good for your doc to warn you of that. I believe I felt that when I was on both Cipro and pred for a sinus infection, before my WG dx. My ENT never said a thing. It was not extreme, but I definitely felt it, say, when going up and down stairs. I was careful, having read about these issues with floroquinolones. There is so much we end up having to figure out or learn about on our own, and this was a case of that. Thank goodness for the internet, even though it is not perfect, it is a source of info that is at our fingertips and we must just be careful about what we read and believe. With experience, I think we get pretty good at finding the most reliable info and weeding out the more questionable or less accurate stuff.

[godgirl]

Now that I have a bit of time to respond... sheesh!

The only antibiotic I've been on in the last year or so was Augmentin. And I had an allergic reation to it! But I looked it up - and I don't think it's in the same family of meds as the floroquinolones.

I'm thinking you might all be right about the prednisone. I haven't been on it as long as some of you, but I've had other problems as well. As all of you have, too, I'm sure! It's really messing with my blood sugar and I have sleeplessness, too. It's funny, when I got to 8mg, I started dreaming again! I'm a very visual person and have always had vivid dreams. That all stopped with the pred. When I got to 8mg, I started up again! But now they're gone - because the rheumy bumped me back up to 10... My guess? I'm not sleeping as deeply on 10.

It will be interesting. Geoff, I've suspected I've been on the edge of a flare for a while now. I like my rheumy. However, she's seems like she doesn't want to treat this aggressively. I think her problem is that she hasn't officially dx'ed me yet and is hesitant to put me on cytoxan. I don't have a positive biopsy - probably because this was caught early, except she's almost certain it's Wegs. My ENT (who I see on Tuesday) thinks it's Cogan's Syndrome, which doesn't involve the sinuses. He says my sinuses look good. Not as "angry" as a Wegs patient. And my hearing loss is not caused by infections (usually Wegs). It's caused by inflammation of the 8th cranial nerve. But he's only seen me when I've been on high prednisone or essentially being treated for it - Wegs and Cogan's are treated the same way. So he hasn't seen the nosebleeds and rawness that happen. It's been kind of frustrating. Personally, I think they both might be right!

So, yeah, I don't think we have this as under control as we think. And I think the tendon issue is probably the prednisone.

Sigh... I love and hate you, prednisone...

[Geoff]

Wow Godgirl, seems like you have an interesting case going on if thats the right description! Going back to your rheumy it may be the case that if you are nor flaring, then a gentle attitude towards treatment may be the right course. I say this as I am very fortunate to be seen by by one of the best Vaculitis doctors and he described this as the way forward. If I am flaring then he will jump on it, but he believes that too strong a hand, particulary with regards to the "heavy" use of drugs etc, does more harm than good.
As for the dreams, then Bingo! I am in the same boat as you! I resorted to sleeping tablets when I was on a high pred doseage as I was still going to work and I was desperate for some quality sleep, however since retiring from work and getting down to 6 and 7 mg, the dream machine has been switched on and how!! I think its good and theraputic for all this bottled up stuff to come out and but dont ask me to interpret any of it!
Good Luck with your DX and I hope we hear some good news from you soon.

[godgirl]

Well, the hand pain migrated for a few weeks, but eventually went away. However, now I have random tendons in the same foot that are inflamed. <sigh> One along the outside of the foot, a couple on the top of the foot and my achilles.

Woke up one morning about a week and a half ago, stepped off the bed and my foot felt like it was coming apart. It was that sudden. No injury, either. I started physical therapy last Wednesday and they gave me an aircast boot... Awesome...

Also had a nosebleed in my sleep last night. Not too bad, but unless I'm flaring, I don't get nosebleeds. Crap.

Anyway, I'm just kinda down about it all. Eh, tomorrow will be better. It better be...

Jen

[drz]

Well, the hand pain migrated for a few weeks, but eventually went away. However, now I have random tendons in the same foot that are inflamed. <sigh> One along the outside of the foot, a couple on the top of the foot and my achilles.

Woke up one morning about a week and a half ago, stepped off the bed and my foot felt like it was coming apart. It was that sudden. No injury, either. I started physical therapy last Wednesday and they gave me an aircast boot... Awesome...

Also had a nosebleed in my sleep last night. Not too bad, but unless I'm flaring, I don't get nosebleeds. Crap.

Anyway, I'm just kinda down about it all. Eh, tomorrow will be better. It better be...

Jen

I had foot pain for months before my diagnosis of Wegs. I did some physical therapy and used braces as I was misdiagnosed with plantar fasciitis. They did discover a broken bone finally that caused some of the pain but the inflammation and pain seemed to disappear after I was treated for Wegs. I also had a bad nose bleed during this time that required several hours in ER to get it stopped. My guess would be that Wegs may be the cause for such symptoms.

[annekat]

I had foot pain for months before my diagnosis of Wegs. I did some physical therapy and used braces as I was misdiagnosed with plantar fasciitis. They did discover a broken bone finally that caused some of the pain but the inflammation and pain seemed to disappear after I was treated for Wegs. I also had a bad nose bleed during this time that required several hours in ER to get it stopped. My guess would be that Wegs may be the cause for such symptoms. I also had some severe foot pains prior to diagnosis; I'd be walking along and suddenly it would be like I was stabbed in the foot. It could be in the arch, the heel, or anywhere in the foot. I have inherited fairly severe bunions, unrelated to WG, which involve misalignment of the foot bones, and can cause cramping and pain. I'm sure Wegs was happy to intensify or add to these problems, and for me, too, they have improved greatly with treatment. Not the bunions, but the episodes of severe pain.

[John]

goodgirl
Have you been checked for the gout? I have the gout and am now on meds for that. I believe the tendon issue is all related to some of the meds. I don't think the gout meds are working but then I have only been taking them for a week. My left achels tendon is hurting so bad that I now walk with a limp and have a hard time doing the stair thing. If you find anything that is helpful please let me know. as I have a hard time wearing shoes. Yes in Kentucky some of us wear shoes:rolleyes1:
John

[mrtmeo]

Godgirl, I agree with the pred connection. My experience was different. Before I was diagnosed, I was treated with a bunch of different antibiotics. I ended with an inflamed Achilles tendon. It was months before I could wear any shoe with a back, not even sneakers. (Physical therapy helped) Turns out a class of antibiotics called floroquinolones can cause tendon damage. If you have taken an antibiotic in the past few months, be suspicious. The problems with these drugs does not always happen immediately after use, which makes it hard to place the blame. Just my thoroughly unscientific experience.

Be Well!

My mom's achilles tendon started to rupture after taking a quinolone antibiotic and it seems it is due to MRSA which gets colonized when we take quinolones.
Colloidal silver stopped it for my mom but she still had mrsa colonized in her nares.

Godgirl,
Prednisone caused a bulge in my mom's finger tendon when she was only on 60mg for a week last year.
It took many months to go away.
I hope yours goes away quickly.

[MaxD]

I too had swollen and painful ankles and tendons before being diagnosed. The prednisone eliminated the pain and swelling, but the pain came back when I tapered down to 7mg and walked excessively one weekend. My rheumatologists reassured me it wasn't a flare and the orthopedist diagnosed it as tibial tendonitis - an ankle brace and gentle exercises seem to be helping. Now I'm down to 2mg and hoping to be done with prednisone by the end of this month.

But, godgirl - the nosebleed needs to be checked out right away. Good luck!

[John]

MaxD
Thank you for the info. I called my rheumatologist today and she also prescribed prednisone, She thinks it is gout flair up again. What is tibial tendontis? I am on gout meds, cannot remember the name of the meds. She was concerned that some of the gout meds would react to imiuran (200mg) that I am on now. She also wanted me to take pictures of my ankles and see her after taking the regiment of pred.
John

[godgirl]

John - pretty sure it isn't gout. My mother had it for years, and the pain is very different. My foot has very little swelling, and the pain isn't in the joints themselves, but kind of randomly all over. It's kind of odd and my physical therapist has never seen anything like it. Luckily, the boot really helps. I'm able to walk - not normally - but much better with it.

MaxD - way ahead of you. I've got an appt with my rheumy in a week and a half. Having some random bleeding, but not too bad. As for prednisone, I'm on 10mg a day. I flare when I get to 7, so we're holding off tapering for a bit. You would think at 10mg, I wouldn't have the pain or inflammation... But I do.

I'm so tired of doctors. Seriously. As I'm sure ALL of us are...

[MaxD]

John: tibial tendonitis is inflammation of the tendon that runs down along the tibia (one of the bones in the lower leg), around the ankle area and into the foot. It is not a flare-up of Wegener's. The confusing part is that I had very similar pains from Wegener's when I was first diagnosed. So when the pain started up again, I got nervous. The docs assured me it is not a flare up, but tendonitis caused by weakening of muscles , steroid withdrawal, and excessive walking one fine weekend.

Godgirl: Glad to hear you're way ahead of me. Re-reading some of your earlier posts on this thread, I wonder if you have consulted with a vasculitis specialist? In case you haven't, check out the vasculitisfoundation.org web site. My nasal sinuses were pretty clear when I had symptoms (recurrent ear infections followed by Bell's palsy - inflammation of the nerves that control the facial muscles, forget whether it's the 7th or the 8th.) The specialist diagnosed me based on the symptoms, blood test (PR3 positive), and then a CT scan of the lung as the cherry on top. No biopsy. My docs considered the nerve involvement "severe."