Knee and hip pain

[Dumpy]

i need some help to see which way I need to go next. I was dignosed with Wegs Jan. 2008 and progressed as well as could be expected. I was off Preds and Immuran for about 3 months in mid 2010, then in Nov. 2010 I had a flare and it showed up in my knee joints. I almost got to where I could barely walk. My Pulmologist put me back on 40 mg of Preds along with the Immuran. The pain went away and stayed gone for awhile then it began to flare again this past summer along with the pain in might right hip and right knee. The pain at times was almost unbareable. It was at this point that my Doc. decided that it was time to try the RTX. I took the 4 infusions begining the first of Nov. 2011 and all of my numbers were good when I went in at the end of Dec. but the pain and soreness was still there in my knee and hip. Not as bad as it had been but still there. I talked with my Pulmonoligst and he seemed to think that I needed to go in and see my orthopedic Doc. He had looked at me back in Aug. of last year and did a CAT scan of my hip but thought it was the Wegs causing the problems. So the problem that I need help with is whether I should go back to the Orthopedic Doc. are back to my Pulmonoligist to see if it is the Wegs that is causing all of the pain. The pain is not always in my knee and hip at the same time it seems to move back and forth are both. If i sit for awhile and stand up to walk I have to wait for a minute before I start to walk becaue if I don't the soreness and pain want let me. I'm not sure this all makes any sense but just trying to see if anyone has had to deal with anything like this. It has really been a pain in the butt.

[Al]

Wegs can indeed be associated with various pains, and not all of them are emotional. Several people on the forum have noted many kinds of joint pains, including, in some cases, hip pains. I've begun noticing a little hip pain myself. Of course, that could be age related, but it is also true that pred (and the associated lessening of physical activity) exacerbates some parts of the aging process, including weakening of muscles and bone density loss. So there could be a combination of factors, but most traceable to the WG or its treatment. Let us know what the medical crew comes up with in your case!

Al

[Dumpy]

What has me confused is that the pains and are soreness aren't always the same. Sometimes it's my knee and sometimes it's my hip are both but it is always moving around. This is why I think it is the Wegs and not a Orthopedic issue (does this make sense). I have a appointment with my Orthopedic Doc on Wed. but I'm not so sure that I need to be going to him but rather to see my Pulmonoligist who is controling my Meds for the Wegs.

[Al]

What has me confused is that the pains and are soreness aren't always the same. Sometimes it's my knee and sometimes it's my hip are both but it is always moving around. This is why I think it is the Wegs and not a Orthopedic issue (does this make sense). I have a appointment with my Orthopedic Doc on Wed. but I'm not so sure that I need to be going to him but rather to see my Pulmonoligist who is controling my Meds for the Wegs.

I'd still keep the orthopedist appointment. if for no other reason than to get another take on the problem. Any doc (any person, actually) can get fixated on one interpretation, even if it is not the best one.

Al

[Dryhill]

Sounds Wegs based to me.

1. I have been having random aches in shoulders and knees since just before being diagnosed in December 2010. There was one day when I got in my taxi to go to work and the pain was so bad in my left knee that I could not operate the clutch, I also needed help from my neighbour to get back indoors and upstairs to my bedroom, the next day I felt a lot better and was back at work the day after that.

2. On Boxing Day I woke up with a terrible pain in my left shoulder and found my left arm was almost paralysed. The arm was ok by the next day but the pain keeps coming and going.

As Al says I would still keep the orthopedist appointment, having said that being in the UK I do not have to pay for such appointments, so are you covered by insurance? Have you put on much weight due to the Pred? If so that could account for your current pains.

Jim

[Dumpy]

The doctor visits are covered under the insurance but there is a deductable that we have to meet every year and it is the first of the year. As far as weight gain I have only gained about 12 lbs. and am down to 10 mg of preds and will be getting off of it if this is not a flare. It's only been about 8 weeks since I had my last RTX infusion. I have been dealing with the pain since Aug. last year and it has gotten to where it is getting harder to get around with the bad limp that I have now.

[drz]

It sounds like Wegs to me too, but I would see the ortho guy to rule out any orthopedic problem since that should help the Wegs doctor figure out what is needed to reduce the inflammation and pain.

[elephant]

It sounds like wegeners to me. A Orthopedic doctor will not be able to help you on this. Need to get labs done, and talk with your Rheumy.

[Sangye]

Dumpy, it's nice to hear from you, though I wish it were better news!

The fact that the pain eases up when you move makes me think it's more of a structural issue rather than Wegs. When I have joint pain from Wegs, any movement worsens the pain.

I suggest seeing the ortho to rule out a structural or functional problem. Otherwise the Wegs doc is not going to believe that it could be Wegs because you just had rtx. It could be Wegs, of course. That dog is SNEAKY.

[Chris G]

The "moving around" part sounds like wg to me. Wg is constantly moving around in my body - one day it's eyes, then ears, then nose/sinuses, then throat, and/or in any combination of those........I could go on. No rhyme or reason to it at all. And lately, a few miscellaneous joint pains.

[Dryhill]

The "moving around" part sounds like wg to me. Wg is constantly moving around in my body - one day it's eyes, then ears, then nose/sinuses, then throat, and/or in any combination of those........I could go on. No rhyme or reason to it at all. And lately, a few miscellaneous joint pains.

Does make for an exciting time though, you never know what is going to hurt next. I have wondered if I could make some money out of it by seeing what odds the local booky would give on a pain in a particular area of my body on a specific day.

Jim

[Dumpy]

Well I made it to see the Orthopedic Doc today. We discussed the pain and how it had been moving around and he decided he wanted to take a x-ray of my hip just to make sure, back in August he had a cat scan done on my hip. Well I sure did not expect it but he brought the x-ray and showed me the ball in my hip joint has deterated since the cat scan and it is not so round now. His suguestion is a hip joint replacement. I go and talk to the surgen next Wed. I did not ask the Doc what caused the deteration, I assume the Preds had some blame in this. The ache in my knee seems to be caused by the limp I have had because of the hip.
I also have my monthly check up with my Pulmonoligist next week so I will get to see where all of my blood work stands.
Not sure about this hip replacement the Doc is telling me I can expect to be down for 2 to 3 months.

[Dumpy]

Dumpy, it's nice to hear from you, though I wish it were better news!

The fact that the pain eases up when you move makes me think it's more of a structural issue rather than Wegs. When I have joint pain from Wegs, any movement worsens the pain.

I suggest seeing the ortho to rule out a structural or functional problem. Otherwise the Wegs doc is not going to believe that it could be Wegs because you just had rtx. It could be Wegs, of course. That dog is SNEAKY.

Thank you Sangye. I have been around and check in and read the post, just haven't posted. I wish I could catch the sneaky dog and ring his neck. Just about the time that you think that you are in the clear and our BFF shows up and spoils the party.

[Al]

Well I made it to see the Orthopedic Doc today. We discussed the pain and how it had been moving around and he decided he wanted to take a x-ray of my hip just to make sure, back in August he had a cat scan done on my hip. Well I sure did not expect it but he brought the x-ray and showed me the ball in my hip joint has deterated since the cat scan and it is not so round now. His suguestion is a hip joint replacement. I go and talk to the surgen next Wed. I did not ask the Doc what caused the deteration, I assume the Preds had some blame in this. The ache in my knee seems to be caused by the limp I have had because of the hip.
I also have my monthly check up with my Pulmonoligist next week so I will get to see where all of my blood work stands.
Not sure about this hip replacement the Doc is telling me I can expect to be down for 2 to 3 months.

Surely the pred has some blame, Dumpy, as it leaches calcium and phosphorus from the bones (and teeth). Does the ortho know about the Wegs? Also, be sure to mention it to the surgeon.

Al

[delorisdoe]

So in the us do you have to mention your conditions when you go to an er or a new doctor? In Canada-or at least Ontario-when i go to an er or a new specialist for ANYTHING within 5 minutes of me getting there they are all aware of the wegeners and they all know exactly what doctors I see and at what hospital and what meds I am suposed to be on. When I was released from the hospital last june for diverticulitis my wegs specialist called me that afternoon and new all of the details including what antibiotics I was on and for how long.

[Jaha]

Dumpy,

Just wanted to throw in my two cents. Sorry you will have to have surgery on the hip. Just wanted to know what your sed rate levels are? I have a great deal of pain in the joints,knees, ankles, shoulders, wrists and so on, my inflammation rate is always high at that point. My rheumy upped my preds around Christmas from 10mg to 30mg and rate went down. However, it is elevating again and I'm having alot more pain. I'm in another flare and mine is definitley due to the Weg's.
Jana

[Al]

So in the us do you have to mention your conditions when you go to an er or a new doctor? In Canada-or at least Ontario-when i go to an er or a new specialist for ANYTHING within 5 minutes of me getting there they are all aware of the wegeners and they all know exactly what doctors I see and at what hospital and what meds I am suposed to be on. When I was released from the hospital last june for diverticulitis my wegs specialist called me that afternoon and new all of the details including what antibiotics I was on and for how long.Depends, Leigh. There is nothing like a national coordination of records yet, though that is regularly discussed. However, there is often regional coordination among cooperating clinics.

Al

[delorisdoe]

It could be the same here. I know that when I go to an er etc they figure out my everything within minutes but i am not sure of other areas. When I was in the urgent care before being sent to the hospital last june, I was asked several times if I was Leigh the pediatric surgeon-same name I guess. when I responded with nope not me the doctor at the urgent care said "oh good. I was worried." LMFAO I guess if she were that ill it would be worse than if I were that ill.

[pberggren1]

It could be the same here. I know that when I go to an er etc they figure out my everything within minutes but i am not sure of other areas. When I was in the urgent care before being sent to the hospital last june, I was asked several times if I was Leigh the pediatric surgeon-same name I guess. when I responded with nope not me the doctor at the urgent care said "oh good. I was worried." LMFAO I guess if she were that ill it would be worse than if I were that ill.

You never fail to crack me up Leigh......lol.

[Sangye]

Aww Dumpy, that's not good news. :sad: I suspected it wasn't Wegs since it was the same two joints having pain all the time.

I suggest getting a second (and even third) opinion before proceeding with surgery. Make sure the doctors aren't in the same practice. Go with the most highly experienced doctor. It is very important that your Wegs doc be completely informed about this and give the okay. Also, your ortho should be told that Weggies are 23% more likely to develop blood clots. Being immobile for long periods will increase the odds of clots. You may need to go on a blood thinner for awhile.

[Al]

Dumpy,

Just wanted to throw in my two cents. Sorry you will have to have surgery on the hip. Just wanted to know what your sed rate levels are? I have a great deal of pain in the joints,knees, ankles, shoulders, wrists and so on, my inflammation rate is always high at that point. My rheumy upped my preds around Christmas from 10mg to 30mg and rate went down. However, it is elevating again and I'm having alot more pain. I'm in another flare and mine is definitley due to the Weg's.
Jana

Sorry to here this, Jana. This is not the report we want to hear.

Al

[Dumpy]

Aww Dumpy, that's not good news. :sad: I suspected it wasn't Wegs since it was the same two joints having pain all the time.

I suggest getting a second (and even third) opinion before proceeding with surgery. Make sure the doctors aren't in the same practice. Go with the most highly experienced doctor. It is very important that your Wegs doc be completely informed about this and give the okay. Also, your ortho should be told that Weggies are 23% more likely to develop blood clots. Being immobile for long periods will increase the odds of clots. You may need to go on a blood thinner for awhile.

Sangye the Doctors aren't in the same pratice but when this all started over a year ago and my Pulmonoligist recommended that I go and see a Ortjopedic doc I asked for his recomendation for a doc and he told me that the one he personelly sees was the one I am seeing now. I am meeting with a surgeon Wed. to talk with him and he works in the same pratice as the Orthopedic Doc. Yes I plan on getting a second opinion but I know that what the doc is telling me about the joint is true just by the way it feels. The longer it goes the tougher it is getting to walk. I take 1 are 2 Alieve's a day to help with the pain.

[Barry]

I have been troubled with pain exactly like you are describing. The pain started in my hip about four months ago. The pain in my knee I believe resulted because of how I walked compensating for my hip pain. My x-ray showed no bone deterioration four months ago. My pain is gradually, very gradually, getting better. My wegs docs are concerned that the prednizone my be causing some bone problems so I am having a MRI in a few weeks. I am courious what your docs find.

[Dumpy]

Mine was O.K. when they did the CT scan back in August and I had just increased the Pred which at first had eased the pain. I had hoped that it was helping until the pain slowly increased. Barry all I can say is don't take the hard head route that I have taken. My doc told me to go and see the Orthopedic doc I
3 months ago and I thought I could tough it out until the RTX had a chance to do its magic. The RTX has done what it needs to but the hip joint has deterated. Good luck on the MRI.

[Dumpy]

Well I have meet with the Orthopedic surgeon and he looked at the x-rays that were taken of my hip and he has agreeded that the hip joint needs to be replaced. I know Sangye I have done a lot of checking on the docs and the surgeon. My bosses wife is head of human resources at the largest hospitals here and he is a very good doctor and surgeon, he was one of the team doctors for LSU football team here in Baton Rouge, La. The surgery is scheduled for March 13 and from what the doc was saying the way they do the surgery now from the front of the leg there is only about a 6 inch incision and they don't cut the muscles anymore. The recovery time is between 2 and 6 weeks getting back to work. Want be able to run any races but it is better that the 2 to 3 months recovery time that it use to be.

[drz]

Dumpy:

Friends who have had both tell me it is faster and easier to recover from hip replacement than knee replacement so best wishes to you for quick relief.

[Sangye]

Dumpy, I'm glad you can get it done so soon. I didn't know about the advancement in surgical technique-- BIG difference.

[Dumpy]

Sangye,

I was really concerned about the surgery and the down time but when the doc told me 2 to 6 weeks I was shocked. He told me that 1 of his patients went back to work in 2 days but in the same breath said that he was crazy.

[Sangye]

LOL Well the guy had to pay for the surgery somehow!

[Dumpy]

Well have gotten everything set up for my hip replacement this Tuesday. Had to go and see all of my docs to get clearance for surgery and have been cleared for repair. I'll be back on line maybe by next week-end hopefully.

[pberggren1]

Well have gotten everything set up for my hip replacement this Tuesday. Had to go and see all of my docs to get clearance for surgery and have been cleared for repair. I'll be back on line maybe by next week-end hopefully.

I sure hope everything goes well. This is major surgery to say the least. NO pressure to post anything until you feel like it. I will be praying for you.

[Dumpy]

Thank you Phil.

[Sangye]

Well have gotten everything set up for my hip replacement this Tuesday. Had to go and see all of my docs to get clearance for surgery and have been cleared for repair. I'll be back on line maybe by next week-end hopefully.
Best of luck, Dumpy. I hope you recover faster than you expect. :smile1:

[gmyi]

I wish you a quick recovery, and to be well

I had the same symptoms three yearsago, pain in the hip and knee

And I went to hospital and after x ray check and bone mineral density theyfound that I have loos bone density and the femur is damaged I vas recommend to replace the femur head joint I didnot take their recommendation and the pain is not often but I prefers not to make the operation

[RudiK]

I hope everything went well with the surgery and that you are recovering nicely and hopefully quickly. I'm lucky, at least so far, in that I have no joint problems.
All the best. Rudi K.

[KathyB]

Hope all is proceeding well after your surgery, Dumpy. My dad just had hip surgery (not replacement, though) and at 85 is recovering well. Another friend had both hips replaced just 3 months ago and he is doing fabulously! So I think with the upgrades and precision of surgery techniques and procedures, everyone is showing much quicker recovery time. I wish the same for you!!

[Al]

Let us know, Dumpy, when you can, how it all went!

Al

[Dumpy]

Well I am back and feeling pretty good, the surgeon said that it was a boring surgery for him. I have really been surprised that the pain hasn't been that bad. They had me up walking the day after surgery and what pain I had was from where they had me straped down to the surgical bed. I was sure that I would have pain in the bones where they had to cut into to change out the joint but there really hasn't been any there. I'll let ya'll know how it goes this week. I have a home health nurse that will be here Mon. and Thurs. for 2 weeks to check my blood and make sure the comadin dose is right and I will have a physcial therapist here 5 days to make sure that I exercise right.

[Sangye]

That's great, Dumpy! Happy the surgeon was so bored. LOL :biggrin1::thumbsup:

[Al]

Well I am back and feeling pretty good, the surgeon said that it was a boring surgery for him. I have really been surprised that the pain hasn't been that bad. They had me up walking the day after surgery and what pain I had was from where they had me straped down to the surgical bed. I was sure that I would have pain in the bones where they had to cut into to change out the joint but there really hasn't been any there. I'll let ya'll know how it goes this week. I have a home health nurse that will be here Mon. and Thurs. for 2 weeks to check my blood and make sure the comadin dose is right and I will have a physcial therapist here 5 days to make sure that I exercise right. Great report, Dumpy!

Al

[Lightwarrior]

Great report, Dumpy!

Al

Yes Dumpy, great report..HIP HIP HOORAY! !!! (Pun intended):hug3:

[Sangye]

Hey Light, don't throw Dumpy around like that just yet. Give him another couple days. :wink1:

[Jaha]

Glad to hear you are doing well with your recovery.

Jana:smile1:

[Lightwarrior]

Hey Light, don't throw Dumpy around like that just yet. Give him another couple days. :wink1:

Oops my bad (LOL)

[Dumpy]

That's OK I can take some light throwing around. I have really been amazed at the advancements in this surgery and the improved recovery times. I have started walking with a cane already. Not sure if I will be dancing next week but maybe.:wink1::wink1:

[drz]

That's OK I can take some light throwing around. I have really been amazed at the advancements in this surgery and the improved recovery times. I have started walking with a cane already. Not sure if I will be dancing next week but maybe.:wink1::wink1:

Great to hear things are going well in recovery! :thumbup: How far can you walk today?

[HopeinTN]

Here's to dancing real soon. Glad to hear things are going so well for you. Keep up the good work.

[Dumpy]

drz,
I have been walking 4 are 5 round trips a day up and down my driveway which is approx. 150' long plus the exercises that the therapist has me doing twice a day.The best part is I have been able to get off the the pain pills without much discomfort.
Thanks everyone for the well wishes.

[Al]

That's OK I can take some light throwing around. I have really been amazed at the advancements in this surgery and the improved recovery times. I have started walking with a cane already. Not sure if I will be dancing next week but maybe.:wink1::wink1:
What kind of dance you have in mind, Dumpy? Break? Frug? Twist? Watusi? Turkey Trot? Jig? Reel? Let us know what works best!

Al

[Sangye]

Fantastic, Dumpy! :thumbsup:

[drz]

drz,
I have been walking 4 are 5 round trips a day up and down my driveway which is approx. 150' long plus the exercises that the therapist has me doing twice a day.The best part is I have been able to get off the the pain pills without much discomfort.
Thanks everyone for the well wishes.

How is the walking going? Ready for a half mile yet?

[Dumpy]

I have been walking about 1/4 mile twice a day plus the exercises that they want me to do. This has all really amazed me. I had my surgery 2 weeks ago tomorrow and have really had a fast recovery. i'm sure a lot of it has to do with the surgeon too. I have really had a lot more soreness in the places that they secured me to the operating bed than anything else.

[pberggren1]

Wow Dumpy! You are doing better than I thought. Hope to see you running soon.

[drz]

I have been walking about 1/4 mile twice a day plus the exercises that they want me to do. This has all really amazed me. I had my surgery 2 weeks ago tomorrow and have really had a fast recovery. i'm sure a lot of it has to do with the surgeon too. I have really had a lot more soreness in the places that they secured me to the operating bed than anything else.
That is great. Getting all the exercise is the key to a quick recovery my friends tell me who have had similar surgeries.