Pain in hands and hips

[Pete]

For the past few weeks, I have had transient pain in my hips and hands. They are very sore for and motion is painful for a few days, and then things return to normal. Advil is what I've been taking for relief.

I've been off pred for over 5 months. I take 15 mg/week of mtx and bactrim 3x/week. Otherwise, I feel fine.

Anybody have similar experiences?

[Michael Bell]

Hi Pete, I have been experiencing pain in my left hip for the past few weeks and I keep getting cramps in my hands. Seeing my consultant in a few weeks so will mention it to him. Still on a low maintenance dose of pred.
Mike

[Pete]

Hi Mike,

I've had hand cramps in the past. I found that eating a banana every day plus 100 mg/day of potassium helped a lot.

The pain I have in my right hand today is a deep soreness and pain (probably a 7 when 10 is unbearable) when I move my fingers. I was planning to play golf today, but I couldn't hold a club comfortably.

[Alysia]

Hi Pete, I am sorry for you to have such pains :hug2:
are this joints pains or others ?
when I was in a bad state my fingers were aching but it was an issue of joints.
are pains in hips connected to the kydneys ?
what your doc say about it ?

[pwc51]

Hi Pete - sadly my experience is not good news. I have experienced this a couple of times and each time it has been the start of a flare. The challenge for me has been that the blood tests do not immediately reflect this and it takes a while before the consultant agrees - by this time I have usually started to feel quite low. As you know we are all different so I hope for your sake it is not the case for you.
Best wishes, Peter

[gilders]

Hi Pete (from another Pete),
WG has given me lots of "gifts" including rheumatoid arthritis. This could be the cause of your pain. I have had rheumatic pain for many years, so it does not immediately suggest a flare/relapse. I am currently in a situation where I might be at the start of a relapse due to many symptoms that suggest so. One of these symptoms being the rheumatoid arthritis is my foot has become so severe this last month that I now need a walking stick.
The other areas where I get pain is hands and lower back/hips (like you). My knees are also effected.
As Peter (above) states "we are all different so I hope for your sake it is not the case for you" Not only are we different from each other, but flares/relapses can present themselves differently each time on the same person.

[drz]

I often get cramps in several parts of my body. Doctors tell me I have many reasons why they might occur so no idea of how to prevent them. I have learned though to not to try force a cramp out, especially in hands since that only tears tissue and makes things worse. Gentle massage around the area is only way to work them out. My hand cramps often seemed related to Dupytrens Contractures and the needle type of surgery helped. Now they have a newer surgery where they inject the offending cords with a super type meat tenderizer which dissolves the extra cords but when on pred it is too risky to try. My pain in joints was due to inflammation from Wegs and in my feet it was also misdiagnosed as plantar fasciitis. RA was ruled out but was under consideration for awhile too.

[Psyborg]

Pete, I have the same thing. My hip and knee on my left side especially (But right side too sometimes) seem to get sore for periods then seems to recover. Also one of my thumbs gets annoyly stiff. I see Dr VF next week so I'm going to ask about that. At this point I almost feel like it's weather related, the colder weather the last few days is what I suspect, though honestly I have no idea.

[pberggren1]

Pete, stay away from Advil and stuff like that. Try Tylenol Arthritis and consult your Wegs doc ASAP.

[mishb]

Hi Mike,

I've had hand cramps in the past. I found that eating a banana every day plus 100 mg/day of potassium helped a lot.

The pain I have in my right hand today is a deep soreness and pain (probably a 7 when 10 is unbearable) when I move my fingers. I was planning to play golf today, but I couldn't hold a club comfortably.


Pete, does your hand feel like it has been slammed in a car door??

That's how I always described mine before pred got things under control.
I think Peter could be right :crying:

You may need to get it checked out

[Pete]

Hi ho, Hi ho, it's off to Cleveland I go! Spoke with Dr. Villa Forte yesterday. She is curious about the pains in my joints but more concerned about the slowly rising creatinine level and a new finding of a trace of blood in my urine. Other than a sore right hand today, I feel fine. Waiting for the grandkids to come over.

[gilders]

Hi ho, Hi ho, it's off to Cleveland I go! Spoke with Dr. Villa Forte yesterday. She is curious about the pains in my joints but more concerned about the slowly rising creatinine level and a new finding of a trace of blood in my urine. Other than a sore right hand today, I feel fine. Waiting for the grandkids to come over.

Hope all goes well. Keep us all informed.

[mark]

The over the counter anti-inflammatory medications can be hard on the kidneys. Kidneys are one of the organs the Wegener’s like to attack. The advice to consult with your physicians about the use of any over the counter medications needs to be heeded and when you add in the possibility of drug inter action and that many of use take so very powerful medications, it can be a find line that we walk between balance and instability.

[drz]

Hi ho, Hi ho, it's off to Cleveland I go! Spoke with Dr. Villa Forte yesterday. She is curious about the pains in my joints but more concerned about the slowly rising creatinine level and a new finding of a trace of blood in my urine. Other than a sore right hand today, I feel fine. Waiting for the grandkids to come over.

Have you seen a kidney doctor lately for their opinion?

[Pete]

Have you seen a kidney doctor lately for their opinion?

I may do that after I see my rheumy on Monday.

[Pete]

Just got back from Cleveland. Dr Villa Forte thinks I'm in the very beginnings of a flare. The joint pains coupled with an elevated creatinine level and 1-2 red blood cells/unit of measure in my urine have her very suspicious. Tomorrow, I go back on pred (been off for 6 months) - 60 mg/day and will have two rtx infusions during the next few weeks. Not the news I was hoping for, but still better than it could have been.

As Linda Ellerbee (former NBC newscaster) used to say, "And so it goes..."

[Dirty Don]

Hang in there buddy...wanna race?!?!?! We'd both lose!! LOL! Get it under control now...best to you!

[gilders]

I've only been a member of this forum for a couple of weeks, but it seems like in the US patients are straight back on strong treatment such as RTX at the slightest hint of a relapse/flare.
My experience has been to only treat with strong medication once a definitive biopsy of an effected organ confirms activity. I think the UK Drs tread carefully with these toxic drugs.
I really don't know which is the best route? If it turns out to be active then there's no question - prompt, aggressive treatment. But taking strong drugs and the side effects that go with them, is not good if it's not a flare and the way I understand it, is that the only way to confirm a flare is a biopsy.
I'm fairly certain with my current symptoms and positive ANCA results, I'd be on medication by now if I was in the US.

Let us know how you get on with your treatment. Hopefully your symptoms and blood/urine results will quickly improve.

[Dirty Don]

[QUOTE=gilders;73306]I've only been a member of this forum for a couple of weeks, but it seems like in the US patients are straight back on strong treatment such as RTX at the slightest hint of a relapse/flare.
My experience has been to only treat with strong medication once a definitive biopsy of an effected organ confirms activity. I think the UK Drs tread carefully with these toxic drugs.
I really don't know which is the best route? If it turns out to be active then there's no question - prompt, aggressive treatment. But taking strong drugs and the side effects that go with them, is not good if it's not a flare and the way I understand it, is that the only way to confirm a flare is a biopsy.
I'm fairly certain with my current symptoms and positive ANCA results, I'd be on medication by now if I was in the US.QUOTE]

Going to the next strongest drug for WG seems to be a tool here of the more advanced WG docs' preferred protocols. I'm not sure it's any better than going slowly and finding out in the long run, but impatience, insecurity, fear, etc. seem to play heavily on allowing the WG to advance any more than it has at the point of new/better drugs. We've had the debate over the use of drugs on here...yes, there are side effects...I am one who argues to balance the drugs' side effects against the effects of WG right out of the bottle...hmmmm...your conundrum in the long run I guess! Flares are treated immediately with pred always and usually a new dose or change in drugs...that affects the docs' decisions too.

[Pete]

I think I'd rather hit this hard enough to knock it out instead of it gaining a stronger foothold. The symptoms are so varied (and sometimes subtle) that it's hard to be sure of what's going on. Makes it difficult to "know thy enemy".

[drz]

I've only been a member of this forum for a couple of weeks, but it seems like in the US patients are straight back on strong treatment such as RTX at the slightest hint of a relapse/flare.
My experience has been to only treat with strong medication once a definitive biopsy of an effected organ confirms activity. I think the UK Drs tread carefully with these toxic drugs.
I really don't know which is the best route? If it turns out to be active then there's no question - prompt, aggressive treatment. But taking strong drugs and the side effects that go with them, is not good if it's not a flare and the way I understand it, is that the only way to confirm a flare is a biopsy.
I'm fairly certain with my current symptoms and positive ANCA results, I'd be on medication by now if I was in the US.

Let us know how you get on with your treatment. Hopefully your symptoms and blood/urine results will quickly improve.

I have had what I call mini flares which elevated my CRP and caused my residual symptoms to flare (joint pain, fatigue, nasal bleeding etc) but no major changes were usually made in my treatment. One time I got a large solumedrol booster when in-patient. RTX is my back up plan for serious flare but my Weg expert consultant at Mayo and treating doctors will not use a biopsy again to decide my treatment needs. As I understand it, my treatment will be based upon severity of presenting symptoms like if my kidneys or lungs are under attack and bleeding is apparent, then the RTX and/or other big guns like plasma exchange will be quickly given again.

There are risks to all treatment so i believe my doctors will be cautious and not give me any more treatment than I need. Some people do not survive the initial treatment for Wegs so caution is used. The ads we see to keep our health care system as a private model claim that in USA the average person for serious health issues get treatment much quicker than in rest of the world with better survival results. I know when i read of people dying in other parts of the world while waiting for various diagnosis procedures and treatment makes me very sad.

One case awhile back in SA was especially heart breaking and made me very grateful for the quick care I received when the Weg diagnosis was first suspected. I was transferred to an appropriate treatment facility, had my kidney biopsied to have Weg diagnosis confirmed, and treatment started within 24 hours by a team of a dozen plus doctors. I expect that a serious flare would also get the same quick evaluation and treatment if necessary.

I know my doctors may be more cautious about my care since I am considered high risk case due to damage to kidneys and lungs from Wegs and diabetes. They are quick to prescribe antibiotics when infections seems present but will be cautious about saving RTX until it is really necessary for me. Some people seem to need routine RTX boosters to keep their GPA in check but even in many such cases, it is delayed as long as possible according to some patients reports on here since there are risks to over treating too.

[Pete]

A friend of mine who used to design health-care benefit programs said he constantly juggled three variables: low cost, easy access, and high quality. Unfortunately, he could only incorporate two of these variables into any single plan.

[Jaha]

Pete,
I am glad you got right on the new symptoms and have a plan of action from Villa-Forte. Good luck with your rtx tx! It pays to be viligent in your own care.

[Alysia]

Hi Pete,
I am sorry that you are having a flare :hug2:but it is good that you catch it asap.
rtx is great. I just got yesterday my 1 IV of second round.
the docs here are not giving the strongest meds immidiately. for example pred: they usually give no more then 30mg and elevated it only if it is not working. same with other meds. they start with the minimum and only if it doesn't work they elevate it.
I don't know which way is better....
good luck !

[Pete]

Got the results of yesterday's chest CT scan today. A new nodule with groundglass opacities sounds like to wegs dog is stirring. Also mentioned small hepatic cysts. Have asked Dr VF and my PCP to give me some guidance on those too. Otherwise, feeling fine. Helping the wife with our granddaughter today and will get out into the yard to start preparing flower beds for winter later.

BTW, we went to see "Jersey Boys: The Story of Frankie Valli and the Four Seasons" musical last night. It was tremendous. Those of us who grew up in the 60s and 70s can relive part of our adolescence.

[Dirty Don]

What's 'winter'? I've forgotten...coffeeeeee...where are you...c'mon, I can smell you...it's almost winter...warm up coffee...can we say 'delusional'!!! LOL! Good on you Pete...you've got it...loved JBoys...Sheeerrrrri, Sheeeeerrrrriii...c'mon out and play tonite...see what NO pred does to me now!! Yea...kind of! LOL!

[Pete]

You're a sick man, Don -- and it isn't just the wegs!! ;-)

glad to hear you're pred free. Hope you can stay that way!! Now. Where are those garden shears???

[Pete]

The hepatic cysts are "unremarkable". Whew!

Still trying to connect with the nephrologist about the rtx infusions.

[Pete]

Heard from the nephrologist yesterday. He can set up the infusions once the insurance aspect is taken care of - probably another week or ten days. At least I won't have to drive to Cleveland for it. Just hope it's OK with the new insurance...

[mishb]

Sounds like a plan, Pete.

My fingers are crossed for the Insurance to come through for you :thumbsup:

[gmyi]

i agree with you Phil Advil can damage the kidney

[hgustafs]

Been having those sometimes, pains in my hips, toes, fingers, knees and feet, basically if there is a joint i get pain there from time to time. my weg doctor last week mentioned when i complained on the phone that the symptoms are "Gout like" which is a possibility (kidney´s not processing uric acid properly i think is the cause), and will be checked better the next time i see him...but i live 800 km away so on my next visit i hope the simptoms are still /again present :( (btw suppoedly potassium helps with gout)

best regards from iceland

[pberggren1]

Welcome hgustafs!!!!! I think you are our first member from Iceland!!!! I have always wanted to visit Iceland. It is so beautiful there.

[gilders]

Been having those sometimes, pains in my hips, toes, fingers, knees and feet, basically if there is a joint i get pain there from time to time. my weg doctor last week mentioned when i complained on the phone that the symptoms are "Gout like" which is a possibility (kidney´s not processing uric acid properly i think is the cause), and will be checked better the next time i see him...but i live 800 km away so on my next visit i hope the simptoms are still /again present :( (btw suppoedly potassium helps with gout)

best regards from iceland
Potassium may help gout, but if the cause of the gout is due to build up of uric acid from poor kidney function, then you should avoid potassium.

[pberggren1]

800km? Where do you go to see your doc?

[drz]

Been having those sometimes, pains in my hips, toes, fingers, knees and feet, basically if there is a joint i get pain there from time to time. my weg doctor last week mentioned when i complained on the phone that the symptoms are "Gout like" which is a possibility (kidney´s not processing uric acid properly i think is the cause), and will be checked better the next time i see him...but i live 800 km away so on my next visit i hope the simptoms are still /again present :( (btw suppoedly potassium helps with gout)

best regards from iceland

Wow, I think you are the first icelander i have seen on here! Welcome. Visiting Iceland was on my bucket list too before i got sick. I looked at several trips but never got there. Now I can't do the hiking and fishing i dreamed about.

[hgustafs]

800km? Where do you go to see your doc?

I live in a small town on the east coast of iceland but my wegeners doctor is in Reykjavík aprox..800 km :) some of my simptoms include Pericarditis with pericardial effusion and usually with pneumonia at the same time with swollen joints and red eyes so when i call the local health care center and say hi they usually overreact, so i call my weg specialist in reykjavík and if the doctors here can help she calls them and then they call me :)

[hgustafs]

Potassium may help gout, but if the cause of the gout is due to build up of uric acid from poor kidney function, then you should avoid potassium.

thanks for the reply :D

I did not ask my doctor about potassium but i will when next i hear from her, but this is what she told me.

to quote my doctor.. she says my kidneys are functioning fine,( which is by no way a given with wegeners ) but the amount of meds i have taken in the past 10 months could lead to a buildup of uric acid especially if i don´t consume enough fluids. and gout as a condition is fairly common and can easily be overlooked when the simptoms are relatively mild and you have wegeners. but i only got diagnosed last january so all of this is new to me!

best regards from iceland

[pberggren1]

I live in a small town on the east coast of iceland but my wegeners doctor is in Reykjavík aprox..800 km :) some of my simptoms include Pericarditis with pericardial effusion and usually with pneumonia at the same time with swollen joints and red eyes so when i call the local health care center and say hi they usually overreact, so i call my weg specialist in reykjavík and if the doctors here can help she calls them and then they call me :)

I sometimes forget how big Iceland is.......lol

[Pete]

Heard from the infusion center at OSU today. Scheduled for rtx on 10/16 and 10/30. Waiting for new insuere's ok, but on the schedule anyway.

Have been on a beautiful vacation the past couple of days. Staying at a beautiful b&b about 30 miles east of Columbus. Enjoying the company of dear friends, eating gourmet meals, enjoying the scenery, and playing with the owner's dog. Life is good!

[hgustafs]

thanks for the reply :D

I did not ask my doctor about potassium but i will when next i hear from her, but this is what she told me.

to quote my doctor.. she says my kidneys are functioning fine,( which is by no way a given with wegeners ) but the amount of meds i have taken in the past 10 months could lead to a buildup of uric acid especially if i don´t consume enough fluids. and gout as a condition is fairly common and can easily be overlooked when the simptoms are relatively mild and you have wegeners. but i only got diagnosed last january so all of this is new to me!

best regards from iceland


Well it wasn´t Gout it is wegeners.. pains and swelling and redness in my feet and right hand, my doc upped pred dosage from 20 mg to 40 plus some pain meds ( a tablet mix of parkodin and ibufen) and today i can walk again. Scary though how quickly these symptoms can develop, go from "it´s uncomfortable" to " someone smashed my foot with a hammer" in about 2 hours.

Live life like you mean it :D

[drz]

Hope the relief comes as quickly as the pain appeared or at least close to it.

[Pete]

[QUOTE=Pete;73763]Heard from the infusion center at OSU today. Scheduled for rtx on 10/16 and 10/30. Waiting for new insurer's ok]

Just checked with the infusion center. Insurance has given the ok. Hope all goes well and that I can avoid side effects. Hoping to go to Memphis this weekend to see my brother and his family.

[Alysia]

[QUOTE=Pete;73763]Heard from the infusion center at OSU today. Scheduled for rtx on 10/16 and 10/30. Waiting for new insurer's ok]

Just checked with the infusion center. Insurance has given the ok. Hope all goes well and that I can avoid side effects. Hoping to go to Memphis this weekend to see my brother and his family.

Hi Pete,
I hope it will be ok. usually it is. arrange yourself a nice place to sleep during the infusion. bring with you enough water or tea (you should drink a lot during it, at least I was told to). I also brought chocolate, to elevate my blood presure which was too low, but maybe you don't need to. it is a long day (for me, the first was 7-8 hours). good book or music can help if you can't sleep. but if you are calm enough, you can just sleep your infusion untill it over.
good luck !

[mishb]

[QUOTE=Pete;73763] Hoping to go to Memphis this weekend to see my brother and his family.


Can I come too :flapper:
It's been a lifelong dream to go to Memphis - hopefully in 2015

I hope you feel well and the trip is a good one

[Pete]

Had an uneventful rtx infusion this morning. Going to take it easy the rest of the day, and we'll see what tomorrow brings.

[Pete]

Had my second (of two) infusion this morning. Again, it was uneventful. My wife took me out for lunch afterward (a little tradition we started) to celebrate the passing of another milestone in the treatment of this dumb disease.

As the infusion was finishing, I asked the nurse if she had any info on the cost of this. Gave a big gasp when she said just under US$20,000! So far, my out of pocket is a $20 copayment. Thankfully, I have Medicare and a good supplemental insurance plan!