Tendon issues

[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
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."