Achilles tendons/pred

[Twice]

Sorry if this should be in the predthred, but it's quite a specific one.

It's one of the pred side effects I've not come across, but recently (a high dose spree, reducing at the moment through 40mg) I've been having nasty pain in my Achilles tendons. First my right, now my left, too. It's quite difficult to get about and if I catch it wrong or put too much weight on it it really makes me yelp. I've left it for a couple of weeks, working on the theory that sick people get aches and pains like everyone else, but I am beginning to wonder if it's something I should be discussing with the docs.

Has anyone else had this or similar?

Sx

[pberggren1]

I had this in my left heal about 5 or 6 years ago. I used a cream. Can't remember the name of it. The doc had to prescribe it and the pharmacist had to mix it up. I think it was called Diclo....something or other....

Anyway, it seemed to work and it went away in a few days. Not sure if it was related to the pred or not.

[mishb]

I also had this quite badly but before WG diagnosis and therefore prior to starting pred.
Actually it was gone within about 5 days of commencing the pred.

Might be time to see what the doctor has to say, I think

[Rose]

Hi Twice

My story is the same as Mishb. Before diagnosis, first one side and soon after the other The tendonitis was very severe in that that area became very swollen and hot and I was unable to walk just a few meters. It responded well to pred. It has never returned since diagnosis and treatment

[Sangye]

That was actually my first symptom, though it took me a couple years into Wegs to realize it. I was having a flare and the same pain returned in the same heel. The heel pain was the only symptom I had for a full 6 months, before waking up one day with severe joint pain in one finger joint. It wasn't severe heel pain, but it did keep me from hiking for a few months.

I've had the heel pain again since last year, even despite 2 back-to-back rounds of rtx. I think I have smoldering Wegs. Dr Seo says I definitely don't. But he also said I was in full remission the whole time I was on cellcept, and in retrospect he said it was indeed smoldering. My markers don't ever indicate anything--stinkers. :glare:

[pberggren1]

Wegs is so confusing sometimes. Is it flaring or smoldering? That is the question.

[drz]

I had horrible foot pain with sore tendons. They gave me foot splints, braces, orthotic shoes, arch supports physical therapy, exercises etc. They thought it was plantar fasciitis for awhile but all the pain and symptoms seems to resolve after diagnosis and treatment for Wegs. Walking was very painful and difficult back then. Sorry you are having such pain and hope it goes away soon.

[Al]

For what it is worth, my only bad Achilles pain was in the ramp-up to my first gargantuan flare. It was due to the edema that pressed against the tendon and was excruciating. But this does not seem to be your deal, Twice. The treatment (steroids, plasma exchange, and cytoxan) took care of the edema pretty quickly.,

Al

[Twice]

Thanks guys. Definitely something to mention, but it sounds like it could just be part of the ongoing mush. *sigh*

[Twice]

Hi again. I'm clearly an unreliable and occasional poster and use this resource mercilessly to vent my frustrations. I hope you'll forgive me for that.

My Achilles issues turned out to be quite awkward. A few days after posting I moved a little too quickly to answer the ringing telephone and *TWANG* went my right tendon. I immediately jumped on to the left, which went *TWANG* and I collapsed in a pitiful screaming pile.

I spent a bit of time in a chair, then I spent some time waddling like a penguin, then walking stiffly flat footedly and was just beginning to walk reasonably when I was struck down by a great big DVT in my groin. GGGGGGRRRRRRRRR! Now back on the Anticoagulant trail.

Wegener's is being a pain, too. Been on varying pred doses + MMF over the last 6 months, but although there's been some improvement I'm having another lung flare at the moment and can't seem to get on top of it. Doc said today that she wants to try me on Rituximab. I'm quite excited as I've never sampled it before. Docs are very unhappy that I've been on pred for 35 years and are beginning to think that it's doing me more harm than good. "It's poisoning you", she said today. I've been quite lucky over the years in terms of bone loss but have had corrected cataracts. It'll be nice to minimise the pred.

I've found it quite tough becoming less and less mobile and beginning to rely on my wheelchair and buggies and stuff. I'm only 43 and it grates a bit, but I'm still very happy to be ticking along and I still enjoy it all so much. Bleuagh.

Anyway. Rituximab. I've had loads of Cyclosporin and Azathioprine and Methotrexate and Pred and I'm intrigued. What are the side effects? Do things get better (when it works) quickly? Does it WORK?

xx

[Sangye]

Hi Twice, it's always nice to see you. Man, I'm so sorry about your tendon issues and the DVT and of course the Wegs flare. Dang it.

Rtx works well for most, but it's a mixed bag on how long it works for. There is an ongoing discussion of side effects and other aspects related to rtx here:
http://www.wegeners-granulomatosis.com/forum/medication/2604-starting-rituxan-week-what-should-i-aware.html

[Twice]

Oh, great. Thanks, Sangye, that's just what I was looking for. x